I will keep this page updated whenever something else fun happens to me because…yeah…the hits keep coming.
I have celiac disease. This fact is pretty well-known by this time.
But I haven’t shared my other health issues with you.
Heck…even the Dudettes (my kids) don’t know the whole story. Thankfully, they could care less about my blog so they won’t find out. 🙂
The reason that I am baring my soul (so to speak) is that I’m curious if there is a connection between celiac disease and the many other health issues I’ve encountered.
I figure if I share my story, perhaps I can entice you folks to do the same and we can do some kind of unscientific study. If I win a Nobel, I will be sure to share the glory.
So here is a list of the health issues I’ve dealt with:
- In my youth (ages 8-14), I had WARTS. Some on my knee. Some on my hands. Not disfiguring mind you. Just annoying. Eventually, they went away.
- At age 10, I woke up one day not feeling well. We had a doctor who lived down the street come by and he suggested I get to the hospital right away. (To this day, I am wondering what he saw in me that made him suggest that. I felt like I just had a cold.) Anyway, I spent 7 long days in the hospital. Blood work out the kazoo. Diagnosis: unknown. I found out years later that they were testing me for RHEUMATOID ARTHRITIS. By the way, the highlight of the week was my dad visiting my every night after work and we’d watch Hogan’s Heroes together. It’s funny the things you remember.
- Through my childhood, I had a variety of NERVOUS TICS (throat clearing, eye rolling, etc.)
- In my teen years, I had the pleasure of dealing with ACNE. Worse than many; not as bad as some.
- At this point, I know what you’re thinking. “Wow…warts, tics AND acne. You must have been quite the catch.” Yeah…good times indeed.
- Fast forward to my late twenties and I developed LOWER BACK PAIN. Severe at times. It’s something I still deal with and actually am currently in physical therapy for it.
- In Spring 2007, I began peeing blood. Diagnosis: BLADDER CANCER. And you males out there don’t want to know how they diagnose it. Uh…huh. It was low-grade and after one reoccurrance, I’ve been cancer free (phew!!).
- In Spring 2008, after years of complaining of stomach aches and losing 15 pounds, I finally listened to Mrs. Dude and went to a GI. Diagnosis: CELIAC DISEASE.
- In Fall 2008, working one night, starting feeling “not right”. Pain in my neck and shoulder…hurt to inhale. Mrs. Dude said we should go to hospital. Do you think I learned my lesson? Of course not. Lying in bed, had a strange sensation. Almost like back pain, but in my entire torso. Jumped out of bed. Feeling went away. Mrs. Dude spent the entire night poking me in the back to make sure I was alive. The next day, my doc said I should go to emergency room just to get it checked out. After five hours of tests, diagnosis: MULTIPLE BLOOD CLOTS IN BOTH OF MY LUNGS (medical term: pulmonary embolism). That strange sensation I had was the clots passing thru my heart into my lungs. This is the point in time where most people die from this. Seriously…WTF!?
So that’s my story. Are they related? I have no idea. But I’m thinking there has got to be something going on that ties at least some of it together.
But I would love to hear your stories. And thru your stories, maybe we can see if there is any kind of connection.
What other health issues have you had to deal with?
August 2021: But wait…there’s more!!!
- I got hit bad with COVID in April 2020. Came in two waves. Not fun.
- Dupuytren’s Contracture. Kinda hard to explain, so here ya go.
- Knee pain. Sometimes bad…sometimes not. Sometimes in my right leg…sometimes in my left leg. Sometimes in the front of the knee…sometimes…well, you get the picture.
- Malignant Melanoma. Surgery August 17, 2021 to remove cancer and to see if it’s spread into lymph nodes. It did not!
October 2022: Yep…the hits keep coming.
- Got slammed by COVID a second time in June 2022. Tested positive on my birthday. I’ve had better birthdays.
- Remember that knee pain I mentioned above? Yeah…it got a lot worse. Got x-rayed: Osteoarthritis. Unfortunately, quite common with those with celiac disease.
Are we having fun yet?!
385 thoughts on “Are all of my health issues linked to celiac? Or am I just lucky?”
I am 28 years old and I was only diagnosed a little over a year ago with Celiac, so I lived most of my life with this disease. I was always the sick girl, yet also an athlete and healthy eater, which confused everyone, including myself. When I turned 26, I knew something was wrong, and it was only then that I started to seek out an answer. NINE doctors later (all respected specialists in NYC), I was diagnosed, however, I was told “nothing is wrong with you – I suggest you invest in a good therapist to work out your issues” by one of the most successful GI doc’s in the city! Overall, my diagnosis has really validated my past and proved that I am not crazy.
Anyway, I am thrilled to see you mention the lower back pain. I have suffered from extreme lower back pain for the past year. I have convinced myself that it’s from Celiac and/or eating foods from my “food sensitivity” list. It comes and goes in waves and at times it is so debilitating. I am curious if there is a link…
As always, thanks for your post. We are strength in numbers and it’s so empowering to have an outlet to communicate our stories.
Thanks for sharing Nicole. I can’t believe it took you 10 docs to get diagnosed. That is so sad…for you and the medical community.
I’m in a six month rehab for my back. If it works, I’ll let you know what the process was.
Get blood work done, could be polycythemia — too many red blood cells thickening blood, chance of clots. Occurs in celiac patients, some reports that it could be a negative effect of gluten-free diet.
Won’t go into all the details of how my family discovered, but often times severe lower back pain is from severe stomach (referred) pain… which would totally make sense being celiac. Isn’t it so frustrating? Not even right! Why on earth are people so horribly allergic to stuff that tastes so good?!
celiac isn’t an allergy
I remember reading once that we are addicted to our poisons! So true. Im in my 60s and always had a dairy problem causing sinus inflammation, sinus infections, chest infections, uncontrollable coughing and post nasal drip, constant ear infections from a baby, hives all over from certain fruits but probably dairy too but that wasnt known. One mouthful of dairy now can set me off in minutes tickly throat, post nasal drip, coughing, runny nose, congested ears, pounding sinuses and very red cheeks so I avoid it but boy do i miss it as being a New Zealander we are born and breed on dairy products. So miss cheese and cream!! Also have a gluten problem for the past 30 odd years so with loads of annoying debilitating off shoot problems and autoimmune diseases to boot. Gluten and dairy cross react due to the similar proteins so both should be avoided but it makes life pretty boring and difficult at times.
I’ve come to believe it’s the chemicals in…. on…. processed with… in food. the more I eat real food… organic… fresh…. the less symptoms I have. The challenge is sticking to that practice. My sister and I describe waves of many many many sypmtoms that come and go. Some diagnosable..but be careful with meds! I do lots of whole food supplements (Shaklee) and do my best with clean foods. I’ll continue to work at healing…healing …. healing!
I’ve come to believe it’s the chemicals in…. on…. processed with… in food. the more I eat real food… organic… fresh…. the less symptoms I have. The challenge is sticking to that practice. My sister and I describe waves of many many many sypmtoms that come and go. Some diagnosable..but be careful with meds! I do lots of whole food supplements (Shaklee) and do my best with clean foods. I’ll continue to work at healing…healing …. healing! BTW I’ve been gf for 12 years…was 45 before finally getting a diagnosis of Celiac!
same here with the low back pain. I always attributed it to natural childbirth and years of lifting patients but-now that I have been off all grains and dairy, when I’m glutened or choose to eat dairy or corn- low back pain ( which I believe for me is referred belly pain) along with instant tiredness & moodiness, gluten belly bloat
I blame mine on bad genetics and wreckless exercise when I was younger. And yeah…the celiac doesn’t help.
Could it be Anklosing Spondolytis? Related to Rhuematoid and autoimmune issues ??
That’s one I gotta look up. Thanks.
Reading this story, I definitely thought of myself and I am currently being diagnosed concurrently with Celiac and Ankylosing Spondylitis. I went to my general practitioner with low back pain that was excruciating at rest, or being in the same position too long (standing with my weight on one leg, sitting, laying especially) and then changing positions, like getting out of bed or rolling over. While I still have dull pain most of the time, the severe pain goes away with movement which is the hallmark of inflammation pain from AS.
I also have always had some IBS symptoms cramping after eating relieved by a BM, for one, but in the last year, it became much more often, and I felt sick and nauseous almost daily so I mentioned that to my doctor as well. I was tested for all the celiac tests and was positive on them all, so we are doing the endoscopy in a month.
I blame mine on bad genetics and reckless exercise when I was younger. And yeah…the celiac doesn’t help.
Back issues might start with actions like poor lifting, lifting too much, and other forms of stress. But consider this:
Consider moderate malnutrition for years. A result of celiac, but can weaken bones and connective tissue, worsening back pain and leading to problems like osteopenia, degenerative disc disease, and others.
Yep. That is me. Diagnosed after MRI with spondylothesis, total spinal canal stenosis, compressed/displaced nerve roots, herniated discs, bulging discs and hypertrophic ligamentum flavum. In other words … my back is messed up! Have had xrays not show anything for years. Finally a doc said MRI needs to be done because a lot of back issues will not be picked up on xray. I think it might have started with the osteopenia I have had forever. Did not improve after going gluten free, even after 16 years. I also have a lot of tendon problems in my hands and feet.
Warts as a child (and my sister) that were scraped or frozen off. They were only on back of knees and bottom of feet. Doc said they were from being at the swimming pool all the time. My 3 siblings all saw dermatologist for acne in teenage years. Also my nieces and my son…who was diagnosed last years with celiac disease by biopsy and confirmed iga deficiency. My celiac tests shows I’m negative but carry the genes. I have had back and spine pain and problems since early 20’s. Turns out I have multiple bulging discs, (cervical & lumbar), 2 herniated discs and degenerative disc disease. I also have hyper-mobile joint syndrome. My maternal side of family has hypothyroidism and Irish heritage. Hmmmmm?
Whoa – I find it facinateing how I have experienced all these same issues over the years !
What has Irish Hertiage got to do with anything!!??
Hi Maeve, my daughter has celiac and so many people say “oh you’re Irish”. I’ve also heard celiac disease is also common in Italians. Basically it is because those countries are better educated about celiac so more people are diagnosed. There was a study regarding celiac and ethnicity and it turned out celiac was most common in Indian Americans who came from the Punjab. Go figure!!!
Omg some of this is familiar, I have Irish heritage too
I too have celiac disease and after not healing on the GF diet, I turned to paleo – more specifically, the specific carbohydrate diet. The problem is leaky gut and inflammation. You need to get that under control. The back pain you mention sounds like inflammation to me and I suggest you try this specific carbohydrate diet. 😉
Leaky Gut and Inflammation…it affects every SINGLE organ in our bodies. Finally getting help from and support from a nutritionist after being sick and having multiple illnesses since I was a child. Many doctors, tests, procedures and surgeries later I have found that it’s much easier to say I’m Paleo than listing all the things I have developed allergies to. It’s amazing how intolerant most people (including family) are as well as those that couldn’t be less interested and annoyed that you absolutely cannot be cross contaminated. I’ve been health conscious since my teens. GMO’s..omigod…don’t make me go there. Corporations, Big Pharma, etc. I eat a lot, am still hungry most of the time but on my way to healing. After losing over 40 lbs, I’ve gained 10 lbs. Woo-hoo! Made a huge difference, not only in my weight but in my looks. I was scaring people in my small town and there were ridiculous rumors. A lot people go Paleo to lose weight…for me it’s helped me gain. We’ve got to help ourselves.
Your comment is like hearing myself talk. I am greatful to know others are going through what I’ve been through. I was sickly as a child, and just got worse. I truly think forgoing gluten and many other triggers has helped save my life! Any little slip-ups (most caused by eating out) cause much discomfort, and it takes quite a lot of time to flush through my system. But all in all, life is so much better now!
Has the SPD diet worked for you? I have celiacs and microscopic colitis and going gluten free hasn’t helped with the colitis… Which has been bad now for years. I am now considering SPD…. Just don’t know if I can stick to such a strict regimen.
I have Celiac and MC as well…nasty stuff. I belong to a large M. Colitis forum online..it’s awesome. It wasn’t until I got on there that I knew I had to give up dairy, soy and eggs for awhile as we often develop other food sensitivities. I also had to go without raw for a good while. I learned so much from that forum. BTW…back pain is a sign of MC as well. Many peeps had it before they got their food under control. http://www.perskyfarms.com. Guy on there is super knowledgeable and even wrote a book on MC.
What is M C? I had back paincouldn’t do colonoscopy on me— strictures diverticulosis- remover 12 inches of my colon.two years before ,a functional medical intestinedoctor who specializes in thyroid ( I have low). told me blood test showed I had three pages of food sensitivities . Changed my diet. Pain achy gone. It was my intestines. On probiotics now
If it’s around the time you have a bm that is not entirely uncommon.
My son tested positive for 3 years on blood work drawn for every 3 months for his type 1 diabetes and we were never told. He has damage that will never repair itself or heal. He suffers from major lower back pain issues so bad that at 18 ( just last year) he was using a walker and then a wheelchair. Totally unable to walk, or do basic functions alone, let alone deal with the pain. He was finally diagnsoed with spinal stenosis and several disc issues. However the stenosis we are told, is caused by, aggrivated by, and will progressivly get worse because of severe internal body inflammation. Which us triggered by his auto immune conditions, and/or his celiacs. So… they are linked, beyond a doubt!!! Make sure you continue to have your back pain looked at until they get you answers or treatment. It can be serious. If he is exposed to thongs that cause his inflammatio to go off he cannot walk and we risk the spinal cord narrowing to the point of cutting off nerves and mobility totally!!!
He turns 20 in just 3 weeks…..
Please have your son tested for Candida (Yeast) by a Holistic doctor, not a medical doctor, because most medical doctors do not recognize it as a problem and do not know how to retreat it. Some even treat it with antibiotics, which only makes it so much worse!!!! Then they will tell you it isn’t responding to treatment.
Five years ago, I started to hurt really bad all over m, especially my legs and back. I had severe brain fog. I went to many doctors including neurosurgeons. I had CTs, X-rays, blood tests, MRIs, but no answer. I got all kinds of horrible suggestions as to what disease I had. I also have spinal stenosis in all three areas of my back.
I went to a Holistic Chiropractor. He and his daughter specialize in natural cures and treatments.
They assessed and found multiple food allergies and a body wide infection of yeast.
In my brain causing loss of memory and even my ability to walk without a cane that was getting progressively worse.
Mine was so bad he advised me to ask my doctor for a month prescription for yeast medicine; the kind they usually give you one or two of for a yeast infection.
I had to eliminate all carbs and sugars, even starchy fruits and vegetables that could turn to sugar in my body,
I lost weight rapidly, but I also started to feel good and I put my cane away quickly too.
In a couple of months, I went from not walking or rising from sitting without help to running with my little grandson,
Please get this help for your son. He is losing his life to something so easily curable. I fully believe so would also be in a wheelchair or dead by now if I hadn’t.
Please. There is no need for your son to waste away like he Is. Free him from what the medical community will not.
Lower back pain can be an indicator of adrenal gland problems. That can be quite serious. Look into it. Lots of people with adrenal problems or Addison’s have Celiac disease.
Please check articles that are linking IBD ( Inflamatory Bowel Disease- I am personally suffering from Chron’s and Celiac disease with issues of Lowe back pain ) to the consumption of high complex carbohydrates in addition to gluten rich food! Apparently, there is research out there suggesting that eliminating starch rich food ( West, barely, potatoes…from your diet could heal the symptoms you are suffering from or at least alleviate them…
If I find the link I will add it to this comment.
This is fabulous…not that you have had all these issues, but that you have shared them. You are a survivor! I will start preparing my list. It might be a long one 😉
Hi Dude! As a kid I was always suffering from some kind of tummy trouble. I was labeled a “nervous child” because the doctor couldn’t figure out what the problem was. He even prescribed a horrible tasting “medicine” that I was to be given when I complained of a tummy ache. This was actually a placebo meant to stop my complaints because he felt that I was lying to get attention, and I would hate the medicine so much that I would stop lying. Since I was telling the truth I took dose after dose for months. I wondered why it didn’t help me, years later my older sister told me of the doctor’s “trick”. I wasn’t diagnose until age 42. I spent way too many years feeling sick and too many years being labeled “nervous”! I do have some other health problems that I haven’t associated with celiac. I have scoliosis which does cause back and neck pain, I had an emergency appendectomy at 20, and I have had multiple kidney stones, one I had to get surgically removed because it was so huge! Thanks for sharing your story.
Wow…thank YOU Jody. Unreal about the placebo. If the doctors aren’t smart enough (or won’t work hard enough) to diagnose the condition, it must be the patient’s fault. Simply unbelievable.
I was actually happy to hear that I had CD because I finally knew what was causing most of my woes. I had almost accepted that maybe it WAS all in my head. Almost.
I’m sure. A lot of people I hear from say the same thing.
You brought me to tears Jody. Our family doctor did something very similar that I too was not told about till I was much older and officially diagnosed. (age 32)
I was just poisoned last week by a coworker, involving an innocent water glass and wheat filled shake. She used my labeled cup for it, then simply rinsed it with water and put it right back. Ambulance ride later after I collapsed. Lovely way to end the week and then be off for 5 days in a lethargic, I am so not eating staycation.
I just found this blog and I love the edgier, less huggy feel of your writing style compared to some, even though it still made me cry. 🙂
Thank you for your contribution to our community.
Glad you found me Melanie.
I was dx in January 2012 and been gluten-free since, but started feeling lousy again probably 4 months ago. I have DH that has been crazy, and the ataxia that comes and goes, and the GI issues of course, but then I started developing asthma and anaphylaxis, and thinking what the hell is wrong? Am I really CD or was the dx a fluke? So, then, I did some gluten challenges and of course got real sick, so then started cutting out anything processed/with additives, then soy and egg, trying to figure out what the heck was going on. It was the vitamins I’ve been taking… Just figured it out tonight. I switched brands about 4 months ago and the label says no gluten added, but upon looking at it closer, it emphasizes the “added” b/c it “may contain” traces. Yes, I guess it does.
What is DH? Also, some vitamins contain yeast, which I an allergic to. Maybe you are, too.
This is my 1st ever blog…lol call me old school. So I am so blessed to find out by my upper gi i have celiac disease. Blessed you say? All my life i had eczema, dermatitis and sinus infetions. For the last16 yrs i have known i was e sickly girl. Shingles by 25 along w extreme anemia, chronic fatigue, fibromyalgia, ibs, back surgery from an accident and bein told constantly from specialist that i may have lopus. So they started giving a pill for all of it. Before i knew it pain pills ran me and depression followed. By 30 i was over it and found they were masking my symptoms not findind the cause. So on my search i found out i had kiidney stones, ovarian cyst, elevated ana, ra factor , high liver enzymes, heart inflammation and chronic ebv virus.. Inflammation but no clue why. They just kept giving me more illnesses. Developmental ra …really. my internal med doc to said my numbers were off the charts. So i prayed and prayed for God to help me i truly felt my body was bein poisoned. And it was!!! I am off 5 med all gluten and sugar since oct7 and i feel energy building daily. I was approached on my way out ofchurch and told if i was willing to go to a nutritional clinic they would make it happen. So i did and it is not quackery….. i take seveal enzymes and am flushinng wheat which brings me to the unbearable kidney and back pain, doctors act as tho wheat wouldn’t cause this but nrt can prove it. Proof is in the pudding and all whole foods are makin a difference in my life. I hope any one reading this feels hope. God bless, thru him because of him all is provided.
AlsoI should mention all of my blood work just after 2 wks has improved and i lost 8 lbs and am eczema free. I feel my prob are from gluten and hope to never hear the words auto immune problem from a doc again.
Danielle, OMG….I swear, I have been through EVERY single problem you have, I literally read your post and swear someone wrote my bio…..I have had precancerous cells on my cervix, was diagnosed in the army as having herpes (which I later found out was shingles), super bad acne that only comes on when I eat gluten, severe lower back spasms (been to hospital twice for that), sever periods, tiredness, and anemia, and went to several doctors, all to discover that while in college, I had celiac….self diagnosed (trust me….if I have any gluten, within 24 hours, I am 80 years old again) and I am turning 35 in June….now that I know that this is what has been slowly killing me, I can fix it. Thank you for sharing, it shows me I am not alone!
I have celiac. I have wheezed until I stopped eating glute.. I have severe back pain. My glands are swollen all the time. I have joint pain. Loss of memory if I eat gluten accidently. I get I’ll easily. Stomach upset easily. Fatigue and depression. Once when I ate gluten I acted like a black out drunk. I don’t remember 3 days after. I had a cat scan it was normal. I also lost my balance for one month. Thanks for your blog.
I’m 44. As a child I hada major bout tonsilities and appendicitis. Many incidencies of strep throughout my life, 3-6 per year. As a teen I had major menstrual issues and growing pains that knocked me out and required pain meds and massage. In my twenties it was ovarian cysts, fatigue, gas bloating, stomach aches. In my thirties my menstrual issues continued and i have to have pieces removed. Then came pulmonary embolisms (blot clots) in my lung and heart, strep and MRSA so bad I was hospitalized for a month, a collapsed lung, empyema. This was followed by anaphylaxis to many meds and nuts and flax. I went septic and had c-diff to boot. The past 6 years I have been healthy and very careful and mostly off of gluten, soy, dairy and corn. The past year I have been gluten, soy, corn, dairy free.
Next post I will tell you my son’s experience.
Holy Moly Tracey. You have been to hell and back. Very interesting about the blood clots too. So glad you are healing.
My son is 14. He’s never been well. He was a colicky baby. At 14 months I started him on “food” ie things other than veggies, fruit and breastmilk. He vomitted anytime he ate anything that wasn’t fruit, veggies or breastmilk. I stopped dairy and he was able to digest food, sort of, most of it came through but since I too had similar bowel issues my whole life I didn’t know it wasn’t normal since it was normal for me too (an undiagnosed celiac). Bad diaper rashes. At age 11 son started the 12 year old growth spurt. His ankles and knees swelled to the size of an adult male almost overnight. Extreme pain. He grew but lost energy and enthusiasm for life. The doctors told me he was depressed but he and I knew that not to be the case. He had terrible acne and back acne. He’s got warts all over his feet which he only told me about three weeks ago so we are still working on clearing those up. Gluten free he has energy and enthusiasm for life. The acne is healing but is not completely gone. He’s celiac with allergies to soy, dairy (including casien), corn and he can absorb or metabolize sugar very well. He plays competitive sports, is in several clubs at school and is a straight A student. Gluten free he can live. On gluten, I am convinced he was dying.
That’s two people so far whose doctors told them there was nothing wrong with them physically. I am officially burning up. So glad your son got an early diagnosis so he can live a somewhat “normal” life. My best to him (and you).
Geez your writing my story.so much lower back pain .bm that has so much pain and lower back that it rushes out like diarrea and then pain subsides.i was a victem of my own body and each day is so bad makes life miserable.you are so funny and down to earth in writing that it makes me laugh.laughter is the best medicine and can’t say I’ve done that in. years! Your fellow celiac friend.
Sorry to hear about your other health problems 🙁 I hope you are having less health problems these days ? I have had more health problems since being diagnosed which is kinda annoying . I have had additional stomach problems , back pain for 7 years started when I was 17 still going on now but it’s slowly been improving last few years . Other problems have just been tiredness , knee pain when I was at school , and a few mind problems I blame CD or the GF diet for most but I dunno just very annoying as they seem to go on and on .
It’s still a challenge but feeling better than I was. You’ll get there too.
Try the specific carbohydrate diet. The problem with us celiacs, and really anyone with an autoimmune disease, is leaky gut. Until you repair your gut by eating foods that your body can digest completely, you will have ongoing inflammation. Google it. Once you have repaired your gut you can enjoy a paleo lifestyle. And steer clear of gmo’s.
I just wondered if you do dairy free also
Thanks for being honest…I bet we’ve all wondered if our health issues were connected…wow…I fear the length of this comment :0
Childhood- Cronic throat issues, strep 3-4 times a year.
Teens- acne, facial warts…(horrific)
20’s- clinical depression
30’s-panic attacks, stomach issues, heartburn bad enough to have to take meds every single day, joint swelling and tests for RA and Lupus – both negative
40’s- Tingling in my feet so severe it’s a mix between an itch and a pain-saw 3 doctors…none of which had any idea why.
Mouth sores and mouth peeling ALL the time.
several of the markers for RA are positive but not all of them,
joint damage & reconstruction in my right thumb, started seeing a rheumatolgist for joint pain (no cartilage in my knees and bone spurs in hips),
pain in lower left groin for over 2 years (had every test done-nothing was found),
nausea for 2 months straight-more tests finding nothing,
lost 3/4 of my eyelashes on left eye-diagnosed w/ Alopecia (possibly autoimmune)
lost 15 lbs. and was so weak and tired I couldn’t function w/ out a nap every day…(a doctor told me to just enjoy the weight loss!!!!)
found a new GI dr. who immediately tested for Celiac- FINALLY diagnosed-she said the blood work was the most overwhelming positive for Celiac that she’d ever seen.(biopsy revealed moderate damage)
Went Gluten free, lactose free
Had iron infusions for anemia last summer..
Panic attacks started on and off
Diagnosed with Sjogren’s Syndrome 4 months ago
Still, after 9 months GF I’m not feeling great so I’m coming off of sugar as we speak to see if that helps any!
Going GF hasn’t helped my joint pain either BUT my eyelashes are growing back!
I think Celiac effects so much more than we realize…I sure wish the medical community knew more so I wouldn’t feel so darn crazy!
(But Big Pharm won’t educate the medical community because they don’t stand to make money from this autoimmune disease)
Some story Robin. Thanks for opening up. It took me years to begin to feel better after going gluten free. And I still struggle. But I’m definitely better. Give it some time. And I suppose you have an appreciation for eyebrows now that none of us have!
I feel for all of you and I am also in tears reading all these stories. I was diagnosed a year ago. I am finding more and more food allergies that have been created, I believe from the celiac. I have had sinus infections, chronic yeast infections, ovarian cysts, terrible skin rashes, huge weight loss, mental break downs, depression, migranes…the list goes on and on. I grew up always sick…no one knew what was wrong…same story..offered drugs to “calm my anxiety” I never fell for it. Even now, knowing what’s wrong I still get very depressed and lonely, and this is how I found your blog. Thank you so much for what you are doing!!! And thank you for giving me the chance to tell my story!
Oh Robin, I’m so sorry! What a shocking time you’ve had. Sometimes with sjorgens (sp) you can highly allergic to salycitates and other enzymes in food and wanted to suggest fodmaps diet. Unless you already know but thought I’d put it out there. Hugs to you. Helen
You sound like me! Forty-three years of “there’s nothing wrong with you–here, use these antidepressants…pain pills…sleeping pills…exercise more!” Chronic fatigue, excruciating pain in my back and joints, severe stomach and bowel problems, skin problems, itching, strep four times a year!!! Found my gluten-free answer by myself! Only two of my forty doctors think it’s true! Three years gluten-free!!! No more migraines, strep, skin itching or rashes, stomach or bowel problems. Also, no more eating out at all!
People don’t understand or care how bad gluten is for me?? My husband tells them if they feed me gluten, they have to keep me for the next week–he went through all of that with me, and he knows!
On top of gluten-free, I found I was sensitive to caffeine–the acid in caffeinated food and drink made my joints burn. I cut it out for only two days and felt so much better! Think about your teas, coffee, energy drinks, sodas and chocolate–one treat a day and hopefully you will have less pain.
So glad you found what was ailing you.
P.S. Don’t touch my coffee (lol)
Did you know if you have a celiacs disease or non celiac gluten sensitivity your bodies immune system can have a cross reaction with certain foods that arent considered gluten products so your immune system attacks your body as if it is gluten. A short list of foods is dairy, soy, rice ,potatoes, coffee, chocolate, eggs. The proteins in gluten, dairy and soy are very similar and the immune system treats them the same so anyone with problems with gluten should avoid them all.
You know my story. I’m among the undiagnosed, but I had horrible lower back pain 2 falls ago when I was at the point where nothing was wrong with me – says 3 doctors. I could not stand up straight for well over a week and Motrin and heat wraps were the norm. I also got it again this past fall when I was getting risqué eating out. During both times my Vitamin D level was dropping and I was under the “normal level”. Gluten and now Dairy causes tiny breakouts on my forehead and my jaw line. Right before I cut dairy out I was also getting the tiny bumps on my upper arms. All gone now. I have always had allergies, always tummy issues here and there. Remember growing up and having a love hate relationship with pancakes… Loved them, but always felt nauseated after eating them. And of course I now have 2 other autoimmune issues to go along with my “non-diagnosis”.
I have issues with the medical community not listening, saying you are fine when you don’t feel fine, their lack of education is causing many, many more people to be undiagnosed due to having to figure it out on their own. If I would have been tested in the fall I would have continued to eat g for that, but 5 months later I was in bad shape and when I figured it out on my own there was no more waiting around to be tested. I wanted it out. I had a nurse practicioner tell my husband it was all in my head – and due to the fact I was not eating and had lost weight – well that goes along with depression you know. I wanted to smack her – I was not depressed when I first started not eating. I was not eating the stuff that was making me feel horrid – even though really I still was eating some of it – which is why I still felt horrid. I could go on and on. A lot needs to be done about educating the medical community and in diagnosing – if you have all these symptoms and other autoimmune issues it seems pretty obvious to me that I am celiac. I don’t get the whole – gluten intolerance thing – and due to so many false negatives I would not doubt that those with a GI diagnosis really are celiac or they were on their way to being.
Just my humble opinion.
I would LOVE to get some input from somebody from the medical community here and explain not only how so many doctors can seem to get it wrong, but can pin the blame on the patient.
Do you think we WANT to feel this way?
What I am wondering is since you were not diagnosed by a Dr. what does your husband or other family members, or other Doctors say? I ask because I self-diagnosed myself and my husband (I have type 1 diabetes, horrible periods, sinus infections, anemia – which was Doctor diagnosed – and when eating wheat I have the bloat/diarrhea issues. My husband has anxiety really bad (two meds for it) and shed skin constantly when he gets into wheat.) But when we try to explain to family members that we cannot eat wheat, they do not respect us because we did not get a diagnosis from a Doctor!
I have one family member who will go out of her way to buy things when we are over for us to eat. But if I say I have celiac she shuts down. Like she believes I am sensitive but not allergic. (And anyway, if you are sensitive isn’t that ALLERGIC?, LIke well this one is allergic to wheat, so no wheat, but if we screw up and this sensitive person actually get a little wheat they will be okay??? HUH? Being sick just a little is still being sick). (Sorry about my rant.)
I am just wishing I knew how to explain to family members that so many people go undiagnosed because of Doctors. So self-diagnosis for this is the norm almost.
Anyway, I hear all of these frustrations we have. And I know a lot of it has to do with uneducated people and Doctors. And not to be political, but is really scares me that we are headed in a direction with medical care that will decide more what you can and cannot do to get treatment. So I am glad I know now what I have instead of after all the Obamacare goes into affect.
I have a doctor diagnosis and I still take crap about being “nervous” or “attention seeking” from quite a few family member. I am curious though, my hair fell out twice when I didnt follow my gluten free diet. Has anyone else experienced this or is it unrelated to my Celiac?
I realize this is a tad late, but I’m 20 and my hair has been falling out in clumps for the past year.
As for me, I’m not officially diagnosed (my doc told me my chronic UTIs are from being depressed and I never went back, insurance company won’t switch my primary). I did an elimination diet about 6 months ago, was pretty sure it was just a severe bout of lactose intolerance, but after eating a donut quickly realized that milk wasn’t my only issue. I’ve suffered from:
UTIs (one so bad when I was three years that I was hospitalized for two weeks),
diarrhea or constipation
Severe heart palpitations (wake me up at night)
Post nasal drip
Body aches (muscles and joints) so bad that I have to lie in bed all day
Balding (so not cool)
There’s the bloating and all that fun stuff, too. My mother still has the audacity to say my diet is a sham and teases me with baked goods. Needless to say, we don’t exactly get along. I’ve been completely GF for about 5 months now and most of my symptoms, while still there, have lessend in frequency/severity. My hair is, however, still too thin and I have bald spots. It’s not even making an attempt to come back. Comb-over, here I come!
Good job fighting back so far. Now that you are GF, one consideration for you is that we all carry a bunch of parasites, some more than others. They can make us sick too. (google it) Try some herbal and/or even electric (zapper) treatments for parasites and hopefully you will get to the next stage of better.
It is tough when family members cause hurt instead of helping, but no one can do it but you.
Don’t slack off, push on. Success is waiting for you.
You read my mind. My boyfriend and I believe I’m coeliac but he always wonders why I need a doctors diagnosis. Family is the reason! Having an official diagnosis from a doctor would empower respect from family and friends and instil confidence in myself – (that I’m not going crazy). I get so anxious about social events because of the stigma attached to being an “awkward” eater.
On a side note, I’ve been a vegetarian for over 10 years. In the last few months, I’ve began eating meat again just to make things easier for everybody else i.e. family, relatives, friends, weird restaurants etc. Does that sound like the behaviour of an intentionally awkward eater?!?!?!?!
I could write for days but a quick background on myself, I have ankylosing spondylitis, anaemia and many many undiagnosed digestive problems.
If you had some falls, your back problem most likely came from that. See a good local chiropractor 5-12 times to see a big difference in your back. Not everything is caused by gluten, just worsened by it in those of us who are sensative.
An AZ gluten-free chiropractor.
I am so curious as to whether I have had celiac my whole life or whether it was triggered by the birth of my daughter because that’s when the really bad symptoms began, and they were everyday where before they were off and on.
Growing up, I was diagnosed with IBS many times. Also lots of ovarian pain and skin problems. One dermatologist had me on tetracyclene every day for YEARS to clear up redness around my mouth and nose. I know I am suffering effects of that.
I remember one specific point in my early twenties where my stomach issues were so bad I could barely leave the house. The GI doctor told me that I was stressed and need to “lie on the floor and listen to music”. He also prescribed me heavy meds which I didn’t take.
I did have warts on my hands and feet off and on growing up and into my early twenties. I suffered on and off with depression and heart palpitations. Now when I get glutened, I go into IMMEDIATE depression mode. It’s amazing. I know I’m getting better when my mind clears and I am happy again.
Right before my diagnosis, I was having major bladder pain. I was diagnosed with interstitial cystitis but only by the questionnaire, not by a chemical test. It seems that my bladder issues only flare up when I am glutened, so I am not sure about whether it’s a celiac symptom or true IC.
I have always felt like I had many more doctor visits than anyone else I knew growing up. And I always felt like I had to convince doctors that my issues were real.
Thanks for talking about this!
You’ve had the gene your whole life, but I wonder what is the trigger point as well. Was it the stress of the cancer for me? Who knows.
Agree totally about the bad affects of too much tetracyclene. Lots of stories about that.
Interesting with the similarities of skin, warts and bladder issues. Gotta be some connection.
And again, why do we need to convince doctors. We don’t want to be there. “Lie on the floor and listen to music.” As nice as that sounds, it’s hardly a prescription.
Thanks for sharing.
I was diagnosed with Celiac about a year ago and my GI said it is often triggered by menopause. I believed him since that’s about the same time my issues started.
The part about the tetracyclines scare me. I have the HLA DR4-DQ8 pattern. I have had mostly constipation with times of the other my whole life. Really my only health complaint was my gut. My symptoms really got out of hand….major constipation….loss of dexterity and weakness in my left arm.,..16 pound weight loss on my skinny frame….rashes…..hair loss, etc. At some point I developed an RA factor. I also have an IGM positive Lyme test through Igenex. Anyway, been on the Cyclines for two years come Dec. I had not had an antibiotic in over a decade prior to this. I follow Dr. Brown’s antibiotic protocol for rheumatic disease and the road back website. With being gluten, egg, and dairy free and AP therapy my RA factor has fallen by half to 28. I take tons of probiotics too. I hope minocyclene is helping more than hurting.
My bladder issues started with the gluten issues, but also are affected by tomatoes. I diagnosed myself with this too. I have gotten good at the self diagnosis. My ob/gyn agreed with my s d – I think I deserve a doctorate about now.
I recently finished reading Healthier Without Wheat and did get the impression that Dr. Stephen Wangen believes before your celiac kicks in that you could be intolerant.
I had things clear up that I have had a few years at least before the major stuff kicked in: acne, sleepiness/tiredness, some hormone/female issues, and knee pain.
His book was also the one that gave me the added information on genetic testing not necessarily giving you any info either. You can not carry the genes DQ2 and DQ8 – yet still have celiac. I do not carry either.
Recently been told because I don’t have the DQ2 or DQ8 genes that it would be virtually impossible to have Celiac Disease and it could be officially taken off the table as a cause of symptoms.
I have wondered that many times myself. I have had bowel issues my entire life (since infancy) “ulcers” asa young girl. Serious back pain since…I can’t remember, three miscarriages, I had “morning sickness” through all of my pregnancies the ENTIRE time. But after the birth of my youngest daughter I continued to throw up almost every time I ate and my DR.’s reasoning was that my body had developed a “habit” of vomiting. Well my stomach shrunk to the size of a toddlers and I lost the ability to “growl”.
I never really thought about it buy win I din’t feel good my default would be to just not eat, (I’ve heard that the body can subconsciously avoid what hurst it), then I would feel “better”. Things got very bad but still gradually an thirteen years later (and near death) I was finally diagnosed.
Looking back though and knowing what I know now, I think it might have always been there. I met a Celiac at a “talk” I did who get’s NO symptoms at ALL. He just almost dies over and over (now he knows its because of celiac and knows to be off wheat) so meeting him just makes me think even more that the medical community just doesn’t know very much about it and is pretty much wining’ it.
I too have interstitial cystitis, not to mention many other miserable conditions but this one is extremely painful. I have battled bladder pain since childhood, along with all of the tummy issues, that my parents claimed were all in my head, It wasn’t until age 48 when I was getting my IUD replaced ( the IUD is what my oncologist used to cure my endometrial cancer) that my IC flared up so badly that I sought out treatment. I had test after test with no diagnosis, the pain from the IC which can include burning similar to UTI, cramping as though you’re having the worst menstrual cycle ever, and bladder spasms which I couldn’t even describe, was almost unbearable. I had been to my GP and my gynie, several times, he put me on antispasmodics which did very little to stop the spasms, and a whole lot to make me nauseated and caused an infection in my salivary glands. I finally called my sister in law who Thank the good Lord is an OB/GYN I filled her in on everything that had happened, Long story short we decided to forget about when things started and focused solely on the symptoms, She said have you ever heard of Interstitial Cystitis? 4 Drs. told me oh you don’t have that, including the one who eventually DX it. He also told me no natural remedies existed. It was a coworker who had trained in radiology that later explained why I should give up gluten to help the IC
There are so many other of these issues I have in common with our GF friends here but this one so painful and so unknown, like celiac there are ways to treat it, that are way better than the medical community has knowledge of, I hope your IC stays in check just being GF, mine takes a bit more management but it is doable.
Ill add my list of problems to this post, many of us with Celiac seem to have other chronic health issues as well…
I was jaundice when born and had to have special formula to correct that. From 2-4 I had chronic bronchitis and pneumonia until my tonsils were removed. 4-10 I had various stomach ills, refused to eat sandwiches, and at one point (8-10) I was not allowed to do any really strenuous activity due to an enlarged spleen. Around 12 I had vertigo for 6mo that kept me out of school, I love to read and whenever I would look at text it resulted in almost immediate vomiting. Spent a couple years after that pretending to be “normal” and then around 14 I stared a downward spiral due to undiagnosed Celiac. I would wake up, throw up, and pass out again to sleep for 12-16hrs; after missing over half a school year I almost was forced to drop out of HS due to my medical state. Took until I was 16 to get a diagnosis after a slew of specialists, my GP on a whim decided to check the gluten related antibodies. He called us at 10pm to tell us the news, I have always been “big” for my age in both height and weight so I did not fit the “typical” Celiac profile.
I went gluten-free at 16 and felt quite a bit better for a couple years aside from intermittent severe stomach cramping, pretty sure this was related to my gut healing after the years of gluten exposure. Around 18-19 I developed joint and back pain along with some neurologic symptoms related to gluten. I cant walk past the bread aisle in supermarkets without getting a pounding headache and dizziness, same goes for being in/around many bakeries and restaurants. Sometime in that period my liver started heading toward failure and I barely avoided hospitalization over that, it then spontaneously “healed” itself, my GI doc didnt know what to say other than he was glad about it. Just before I turned 20 I was diagnosed with fibromyalgia but Im not entirely sure if there is simply low levels of cross contamination in my diet contributing or if that is a legit diagnosis.
Now I am 21, turning 22 later this year, have lost 100lbs in the past 2yrs despite not trying to, and the past few weeks have severely restricted my diet and have started feeling a tiny bit better pain wise… Other assorted issues not mentioned above: skin tags on eyelids and torso, a few warts on my hands over the years, and bumps on my upper arms that currently have gone away but come back w/ even minor gluten exposure.
Wow, this got a bit longer than I intended but whatever. =)
Sounds like a tough journey Kevin. Appreciate you sharing.
Dude! It’s like you’re reading my thoughts. Thank you for sharing your story. With or without a Nobel, you’re helping others. I am newly diagnosed with CD and I’m looking back at my life (even my early life) and seeing signs that could have led to an earlier diagnosis.
I started going to different doctors 14.5 year ago. Every time it was the same: Something is really, really wrong with me. I know my body. I think it’s my thyroid. Can you please check my thyroid? Oh, all my numbers are normal? What else can it be? Nothing? Why am I so tired that I can’t lift my arms to drive? Because I have two kids? Really? Can you please check my thyroid? Run blood tests? Something?
Thank goodness for a reluctant visit to a GI (I didn’t have many gastro problems) who ran a celiac screening. And thank goodness for him looking me square in the eye and saying, “You’re not crazy.”
So, Nobel prize or not, what you’re doing is helping. Somewhere somebody is reading your blog and thinking, “Maybe I’m not crazy. Maybe my doctor is.”
Or maybe there’s some doctor reading this and saying, “I need to stop being so lazy and LISTEN to my patients.”
My health story pales in comparison to yours Dude, and many of the others. I had numerous symptoms later in life but most subsided after going GF … hopefully my osteopenia will improve as well. It did take close to 2 years before my tummy troubles went away, so if you are new to a diagnosis, be patient, healing can take awhile, but you’ll get there. Just stay on top of any new health issues that may arise – bring your list with you to the doc, and make sure you are heard! Dude, I hope from here on out, life is a healthy one for you! Just thought I’d share the attached link re: PE/Celiac connection ??? http://celiaccorner.com/celiac-gluten-free/pulmonary-embolism-linked-with-auto-immune-disorders-such-as-celiac/ (just go directly to the last paragraph)
Very interesting Paula. Before yesterday, nobody has suggested to me there might be a relation between the two. Ah…the power of the internet.
My 10yo daughter was diagnosed with CD last month. We feel very blessed that her pediatrician tested her for it even though he did not think that was her problem. She has had frequent and severe headaches enough to get a note from the school district about her absences. I am holding my breath and praying that they are related to CD and are NOT migraines. She HAS had warts!! Some on her elbows and a really stubborn one on her foot. I have never given it any thought, but a comment above made me think about a red “rash” she has had around her nostril for many, many months, but seems to have cleared up in the last couple of weeks.
Very interesting topic here, I definitely will be following along!
Appreciate the input Kelly. Sorry to hear your daughter has celiac, but at the same time, it’s nice to get a diagnosis.
Wow – I could write a novel on this subject. I will try to be brief.
Throughout teen years I had a lot of stomach trouble. Was told it was irritable bowel, etc. In my early 40s I suddenly had double vision. Went through tons of tests. My doctor said we’d start with the MOST DEADLY things it could be. No, Ii no no longer go to him. After tons of tests, no diagnosis. My sister researched until she found my symptoms all pointed to Hashimotos disease. I asked to be tested. Normal is -60 for antibodies. I was at 1560. No my sister is not a doctor or a nurse – just intelligent. Turns out she also has hashimotos also. Other symptoms I have had include anxiety, joint pain, brain fog, severe heart burn, major bloating and indigestion, lack of concentration, tiredness, my blood pressure goes up if I am glutened and I am sure I am missing things. I have also developed an allergy to poison ivy. I never had poison ivy in my life – now I get
it a couple times a year. Annoying! So what came first? Did the wheat intolerance cause the thyroid issues?
Thanks for sharing Patty.
Again…if there are any doctors out there who can shed some light on a number of these comments as to why the medical community seems to be so in the dark, that would be so nice.
That’s very interesting. I developed Graves disease (other side of the thyroid problem) when I moved to Seattle 5 years ago. Met a dietician last spring, she put me on dairy, whole grains, eggs…. and I was getting sicker and sicker – until I went into a thyroid storm and spent all of last summer in bed.
My naturopath had me allergy tested for food – and I am gluten, dairy, eggs and nut intolerant 5 out of 5… thinking I was eating healthy was “killing” me….
I have tried to be gluten free, for the most part I am… although I am not sure about make up, etc, which I understand can have gluten in it.. and I’ve been feeling better all the time.
But I had been wondering what, if any, link there is between thyroid issues and CD.. While not being diagnosed with CD, I am trying to live as “free” of gluten, dairy, etc as I possibly can… and I’m very glad I found this site.. thanks Gluten Dude…
Great post. It really makes you think. Before I got my CD diagnosis, I had ear and sinus infections just about every 6 weeks, had been “diagnosed” with IBS and anxiety, and had just about ever vitamin deficiency in the book. When I asked my doctor if they were at all related, she told me it was anxiety, and all in my head. Nice, right? Maybe someday we’ll get to a point where the doctor’s lack of knowledge isn’t all in the patient’s head.’
Got that right Alissa.
I have returned to take a crack at this!
At age 1 when I was taken off breast milk, I was found to have severe milk allergies. Putting me on goat’s milk seemed to resolve this.
My sleep problems apparently are nothing new. My mom said I wouldn’t sleep more than 1.5hrs in a row up until I was ~4-5yrs old.
Other childhood problems: eczema, at age 5 they thought said I had hypoglycemia so I went off of refined sugar for years and ate every 2hrs to keep blood sugar stable (can’t remember when I reintroduced sugar), I had sinus and allergy type problems that led to allergy testing and removal of my adenoids. The allergy testing showed I was allergic to dust, soy, tree nuts, and cats/dogs. I distinctly remember having allergic reactions when going into the hay filled barn on the acreage we lived on. I ended up getting allergy injections for “dust”. On this same acreage, the well water gave me the runs, so we had to switch to bottled. Whenever I got injured, it would take a long time to heal.
Issues in my 20s: Depression and anxiety became pretty bad around age 18/19. I joined the Navy Reserves at 18 and ended up with multiple stress fractures in both my shins after boot camp. I remember the GI issues starting to worsen around this time. I attributed it to “nervous tummy”. There was one time in University and one in the Navy that I had to go to the hospital for rehydration because of “stomach flu”, in my early 20s. At age 25, I had a miscarriage at 10 weeks.
The GI issues got progressively worse. My doctor brushed it off as IBS, so I felt I just had to “deal with it”. In 2010, the final year before diagnosis, I ended up in the hospital 3 times for rehydration. I also was sick with strep throat, sinus infections, UTIs, and even mono that year. It wasn’t until my third time in the hospital…each time my sickness was getting worse…that I plead with the doctor, saying that this wasn’t right, nobody gets “food poisoning” three times in one year. At this time I was also throwing up about 1/3 of my meals, had lost about 15lbs (on an already slim frame…enough that friends were concerned), had diarrhea, gas, and pain on a daily basis, a rectal prolapse that was getting worse, and was skipping a lot of work and class.
I have been a year gluten-free, and the prolapse was corrected by surgery. The vomiting and diarrhea has all but disappeared, but many symptoms remain. Today, for example, my belly is distended such that I look pregnant. I have brain fog, extreme fatigue, and frequent migraines. My joints often feel like they are on fire. And the depression and insomnia are still going strong.
I am hoping to feel better one day 🙂 I have been told that the extent of damage I incurred is unusual for someone who is only 29.
Yowsa Sassy. Some story…what a PITA it must be. May you experience healing…and I mean QUICKLY!!
check out” the blood type diet”
its probably the casines in the food that your eating, its a game changer for me now that i found out about the diet and follow it, its like stepping out of the fog for the first time in fifty years. As a child i had cronic bladder infections,extreme pain, cramps, bloating, when i tried to have a bowel movement , inability to have a bowel movement frequently along with diarrea, a blockage in my small intestine at age 12 and almost died, had a small section removed. And diagnosed myself as gluten intolerant, allergic to milk and other foods so many i cant list, the upside i found the blood type diet and a list of foods i can eat and feel good
I’ve been reading your blogs from last 2-3 months ever since i decided to find GF friends if not in real life then online would be ok.
I had been losing weight since 2008(dropped probably 20 lbs), thinking its just me not taking care of my body and added stress from other life problems.
It was June of 2010 that i started getting severe diarrhea and kept getting dehydrated ( not knowing what was happening to my body). This kind of diarrhea and vomiting came on and off until Jan 2011 last year and it skyrocketed in March when i was unable to walk and function like a normal person. With all the dehydration are associated other symptoms like fatigue, confusion and LT anemia and warts. (I felt like my body was shrinking over last 2 years) I went to ER for fluid and blood transfusion and eventually two months after an upper GI confirmed that I have celiac.
Even then i didn’t believe this could be true and kept eating wheat until Oct 2011 and kept getting diarrhea and dehydration.
So I decided to go on GF mission with rice and beans diet. 🙁 It was hard and still is hard. I don’t think I’m fully recovered yet.
Though, I’m getting better with online research for my diet and off course these blogs help me greatly.
Trial and Errors.
Glad I can help Jiggy.
You’ve got to be your own best advocate. No more gluten!! Ever! Your body will take time to heal, but eventually, you’ll start to see the light.
My daughter has been diagnosed with crohn’s disease in January 2012. She has had gastro issues for about 10 years (probably longer), irritable baby stuff – breast fed for 2 1/2 years but supplemented with solids as she grew. She was colicky, prone to bleeding diaper rashes, ear infections and foggy thinking. She had precocious puberty at 9 – went hormone free on all dairy and meats except chicken, delaying puberty til 14. She was diagnosed with Hashimoto’s at age 9 as well.
She’s been gluten free and dairy free for two months and is feeling better. We have also bumped up her vitamin D3 to 30,000 units a day. Her D3 level to start was below 25 but is now a much healthier 80 to 90.
We think there is a link between autoimmune disease, crohn’s and gluten but doctors are very slow on this info. We’ve been told that there is no link between gluten and crohn’s but remicaid is crohn’s best friend.
We are now seeing a naturopath which is also helping. Very interesting about the pulmonary issues. The new wheat doesn’t seem to be friendly to our bodies.
It just kills me to hear about kids going thru these issues and makes me with for some kind of cure even more so. Thanks for sharing Left Coast and good luck.
Celiac disease shares genetic predisposition with many other autoimmune conditions such as autoimmune liver disease, Sjögren’s syndrome, rhematoud arthritis, sarcoidosis, dermatitis herpetiformis and Addison’s disease.
In fact, 13% of people with Hashimoto’s disease (hypothyroidism) have a full-blown celiac disease while the others have a some sort of gluten sensitivity. It was also noted that up to 19% of patients with type 1 diabetes mellitus and up to 4.5% with Grave’s disease (hyperthyroidism) have celiac diseases as well.
I was lactose intolerant from birth until present. At age 13 I was diagnosed with ADD cause I had trouble concentrating and would day dream and was not learning. At about 17 I was so depressed I had suicidal thoughts and took a bunch of pills that were prescribed for ADD. I am lucky I am still alive. I turned to friends and boyfriends to make me feel loved even tho I had a wonderful family who loved me. I dealt with depression off and on my entire life. My entire life I had unexplained random rashes (hives my mom would call them)… Both my pregnancies I feel so nauseated I can’t get up at times. With my first born I was in bed the first 5 months cause I was constantly throwing up and so exausted I couldn’t do anything. I developed really bad excema (spelling?) after I gave birth to my first born. I feel so foggy all the time and just want to nap! It’s crazy looking back I had had soooo many things go wrong and I believe so strong that it was all cause of celiacs disease. I am 26 and married to an amazing man and have a wonderful 1 year old boy and a baby boy due in 2 months so I have so much to be happy about. Depression comes and I have no idea why. I feel so sad and I don’t know what to do about it sometimes. I hit rock bottom it feels like. I hope so bad that my new gluten free life will make all the pain go away. I was diagnosed celiac 2 weeks ago.
Not sure what to say Mary except that I’m sorry you are suffering. I am hopeful you have a good support system and someone to talk to. I am also very hopeful your diagnosis is the beginning of your new life. Be patient…it can take awhile to start feeling better.
I would LOVE to hear from you again to see if going gluten free has made a difference.
I will definitely keep you posted on how I am doing. Your website is great! Thank you
Thought I’d comment that I have dealt with severe depression, anxiety, panic attacks, violent mood swings as long as I can remember. Since going gf my mind is clear and I can focus and be rational and none of those other things are an issue unless I eat something I shouldn’t have. I have found caffeine makes me anxious and can lead to panic attacks, too much sugar makes me moody and weepy and gluten tends to make my brain stop functioning right. It can bring on severe mood swings, panic attacks and depression for me. It also gives me a gross forever lingering rash on my neck that itches like crazy. I am not diagnosed with anything but going off gluten has definitely made me feel like a “normal” person. Hope you are feeling better now 🙂
My husband was going to get tested for celiac but couldn’t get through eating gluten long enough for testing after a year gf. He started having very severe asthma when he was 12 and has been hospitalized and intubated for it several times, he is now in his early 30s. Maybe 5 years ago they found his asthma was related to reflux and put him on meds for that on top of a daily steroid. Since going gf he no longer needs any of the meds and is off them all. When he tried eaten gluten for testing he ended up in the er for asthma attacks three times over a couple of weeks so he stopped. He has also stopped snoring at night (he was BAD). His acne is majorly improved. When he gets glutened within 30 mins or so he can feel his chest start to tighten up. He also gets irrational, moody and angry which isn’t his normal demeanor. Takes him a few days for his lungs to feel better usually. He had eczema as a kid and most of his family still does. He used to get sinus infections constantly. Apparently he was the healthiest of all his siblings up until 11 when the asthma started and went on from there. The rest of his family has a lot of issues I wish they’d get tested. Would be nice to know for him since he pretty much can’t.
Our youngest also becomes severely constipated when glutened and very fussy/irritable. He is just over two now and this started when he was a few months old. He was exclusively breastfed and constipation is not normal for breastfed babies… After elimination trials we found it was gluten. His colic went away, he can have a movement without screaming like he’s being tortured and he went from a reluctant nurser to a very content one.
Anyway, I think my husband and son are either celiac or very sensitive to gluten. I don’t see either of them getting formally tested at this point though. My husband I figure is either allergic or celiac/gluten sensitive or both that is undeniable.
Since birth, my 3-year old has had had chronic sinus and ear infections. Adenoid removed last year and tonsils need to be removed now. All antibiotics give him such a sore tushie. This is just too much sickness in such a short time. He didn’t do great on breast milk but that’s all he got for 11 months until other food was introduced. All that seemed okay to me. He is not regular, but neither am I so didn’t notice any red flags yet. Past few months his color is pale, whites of eyes are not so white, not happy as usual, seems sleepy a lot. I thought several times to myself that I need to take him in, but I have nothing definitive to offer. He goes to a program a couple times a week. His teacher observed him zoning out, which I now believe to be absence seizures. I noticed them too, but still no red flag until about 2-hours after she talk to me. It clicked, he’d recently been losing his bladder or bowel control and I realized it was during these seizures. He is not one to have accidents. His brother is but not him. I called the pediatrician and he was scheduled for EEG which was normal. The pediatrician said he would order a lot of other tests. From researching these seizures I asked if he would order a gluten sensitivity test. He laughed and said it’s unlikely and only sees two patients a year at most. Maybe to humor me, he ordered it and found he has the antibodies in his blood. He did not exhibit the text-book profile for ordering this test. The mainstream medical knows so little about any of this it is quite terrifying to navigate. I have no medical background and I’ve lost all confidence in the medical field. If it were me and not him, I wouldn’t be so concerned. Actually, I think it’s me too because now that I know more, I certainly fit the profile. Foggy brain, oh my word, yes that’s me – along with ADHD-inattentive, PCOS, anemic, lower back pain, tired beyond belief and I eat everything and do not gain weight. I’m 40ish and have not felt healthy in decades.
We are having the proper celiac tests for my son. I took him off gluten for 5 days and now he has to be on for 5 weeks before they will agree to run the tests. Is it worth confirming the diagnosis? This gluten antibody crap has penetrated his protective barrier on his brain, and I think it’s attacking his nervous system, and no doctor will acknowledge that gluten extends beyond the gut. I do think his gut is affected too. Why is it that doctors do not believe that an autoimmune disease can affect any or all systems in the body any organ? There is research, but seems like they do not read before telling me or other parents we don’t know what we’re talking about. I suppose they only read what the drug reps bring in during lunch. I wish those that should knew how an autoimmune disease worked. After demanding, we now have appointments with an immune specialist and neurologist in addition to the GI. Neurologist is 6-weeks away. I do hope we caught this early enough to heal any damage.
You speak for many of us when you voice your frustration with the medical community. I’ve heard it over and over how celiacs couldn’t get their doctor to take them seriously. I wish those in the medical community would read this blog and respond accordingly.
Regarding your son…first I’m sorry you are going thru this. So difficult when you are not getting answers.
Personally, I would want to confirm a diagnosis of celiac. I totally get Mary’s point to listen to your gut, but as a father, I would want it confirmed. But that is a personal decision and only you know what’s best for you and your son.
Best of luck and please keep us posted if you want to.
In response to why drs don’t believe that coeliacs can damage anything but the gut I think they are taught to dissect the body. A rash on the outside means you’ve come in contact with something. Pimples mean your skin isn’t clean enough. Warts are from a virus that affects your dermal layer. And so on and so on. Our bodies are like machines. If we feed a car the wrong fuel it won’t work. I have one dr who I see who asks me questions about gut health. We google stuff together and he explains things to me. That being said I was already diagnosed when I met him. I keep pushing him to test his patients with depression or IBS but don’t know how much influence I’m having. Be your own health advocate is all I can say. Drs are people who are good at math. Math is a formula. Follow these steps and you’ll get your answer. Unfortunately people aren’t formulas xx
Wow, I am so sorry your son is going through all that and it must be hard for you to see him so sick. Personally, I wouldn’t put him back on gluten for the diagnosis, that seems crazy to me. If it were my son, I would just listen to my gut and I would not let him eat any gluten if that’s what I believed the problem was. Dr.s don’t always know the answer. You know your son best so, listen to your gut, is my oppinion and maybe find a diff. Dr.
Thanks for your responses, The Gluten Dude and Mary. I agree with both of you, but on different days. When the gut doc told me to put our 3-year old back on gluten, I walked out of the office thinking what a freaking moron I know what I’ll that doc back on. Plus there a chance the biopsy may be inconclusive or negative. He’s young and his symptoms are not in accordance with the the outdated medical profile. So what’s the point? Well, there’s the possibility of genetics and the long term implications for his future wife and children, my husband and/or I, his siblings that are now at risk, my family, my in-laws. It’s not an easy decision and on some days I feel like we already know enough. It is enough for me and if I could control what goes into my son’s body 100% of the time, this would be over. I know he will be gluten-free as long as it’s within my control. What is not within my control is how seriously this is treated by family and friends, school, society, and for my son when he questions why he’s being deprived. He will not remember what I see – that he is sick and is getting worse in front of my eyes. That is my hope. He will at some point need a definitive reason to justify this life-long effort. My husband needs to know. He’s unsure how we got to this point because as much as he tries to understand, he hasn’t observed those ‘unconfirmed seizures’ or other changes. My husband has faith in the medical professionals while I have none. My family doesn’t grasp it, so when asked what’s the big deal with an allergy, I have to explain the difference between an allergy and sensitivity (and genetics and atrophy and celiac disease and autoimmune disease and cross contimination and cross reactive foods).
Can’t blame them when doctors are so clueless. I went to an egotistical immune specialist today. No kidding, he told me that the gluten free diet was a fad and would be gone in a few years and that when his kids were little the fad was sugar. He just wanted to test him for allergies. When I said I wasn’t concerned with allergies only other food sensitivites and about what test could assess his immune system he said food sensitivites are no big deal unless it’s celiac which my son obviously doesn’t have because he would be anorexic, malnourished, and have diarrhea every day. I told him that there are more celic patients that are asymptomatic or with atypical symptopms walking around with the wrong diagnosis or undiagnosed because of the complete disregard for symptoms that are anything other than what was taught in medical school. I asked if celiac is an autoimmune disease then why is it not possible to manifest symptoms from something other than the gut???
He left for a while (I suppose to Google) and came back with a new attitude. Not a great one, but a little better. He ordered a bunch of tests, plus he wants to run the IgG anti-gliadin because I would be surprised at how many false positives there are.
We’re going back to gut doc next week and then to pediatrician to loop him in – he’s the only one that is not afraid to admit he doesn’t know but will do the research. That’s all we can ask, right?
Thanks for sharing this. Can’t believe the immune disease “specialist”. It just floors me every time i hear something like this. Will continue to send positive vibes your way.
Aw . Maybe check into nutritional response testing. Your storey is so familiar. Doctors mean well but often dont look outside the box. Whole foods and no gluten has changed my life and my chidren. I hope thingsare getting better for you. God bless and good luck.
I went undiagnosed for 43 years because I didn’t present as malnourished. Of course I have a complicating issues of Hashimoto’s and PCOS, both of which cause uncontrolled weight gain and insulin resistance, but because I wasn’t thin, Celiac wasn’t even considered as a possible cause for my gut issues, brain fog, anxiety, depression, joint pain, fibromyalgia, etc. It took me doing an elimination diet on my own and discovering that without gluten all of my symptoms improved and some of them resolved completely for my doctor to say “Oh, yeah, I never even thought about Celiac, but it makes complete sense!” Fortunately he was willing to give me an official diagnosis based on my symptoms rather than making me go back on gluten so that they could do the testing to confirm, and he has done a lot of research on Celiac since and is very knowledgeable and helpful in managing my care.
I’m Mary I’m 16 from Scotland. My story is a little confusing. I was never really ill. But two years ago I was always tierd and very easily got colds also I kept getting stomach cramps. Went to my doctor they gave me a blood test. Results came back Sgo high they referred me straight to a dietition and prescribed me to gluten free foods. It didn’t make much of a difference. I got an endoscopy (but unfortunately I was to caught up in my new diet and didn’t eat gluten so I will have to have another endoscopy). When I got the results back saying everything was normal I was over the moon had a massive slice of cake. though my parents thought it was odd so arranged an appointment with my doctor. He explained I would have to have another endoscopy he then gave me a blood test which again came back very high. It’s all a bit on the fence right now. Because I don’t feel ill at all, in fact very healthy I’ve been eating whatever I want and feel fine. The whole thing has been very upsetting and I don’t really know what to think.
Hi Mary from Scotland. A lot of celiacs have no symptoms, so don’t let that sway your decision. Go to one good GI and get tested. Stay on gluten until you get tested. Good luck.
As a child I had a major learning disability, and what I suspect was undiagnosed ADD. I was chronically constipated, and must have had other issues as well since my folks took me to a specialist when I was 9. He proscribed mega amounts of vitamins 3 times a day, but I’m not sure they helped much. I developed torticollis at 15, which had me bed-ridden for a few days. By college I had some GI symptoms. I developed severe anemia during my second pregnancy. Then by my late 20’s I threw my back out & have had chronic issues ever since. In my early 30’s I was diagnosed with Celiac. I had major GI issues at that point, hair loss, anemia, osteopenia and paresthesia in my back along with muscles going “mushy”. In the 10 years since I went gluten free, my back issues require chiropractic maintenance, but the nerve issues resolved. I remain Vitamin D deficient, which is not really unusual for celiacs. My osteopenia resolved, and my metabolic panel is within normal limits. I am easily exhausted though…
Interesting all the celiacs with back issues. Sounds like you’ve had a tough ride…sorry to hear.
There are over 300 symptoms, conditions and autoimmune diseases associated with celiac/gluten intolerance.
My list of symptoms was 4 pages long (not kidding)
Some people have NO overt gastro symptoms, but may have several of these. Check it out:
stumbled across your page and I am happy I did:) I know this is an old post but I figured I would share anyways.
The frist time I recall feeling sick,i was aprox 4years old..I was diagnosed with an allergy to the sun(this is still ongoing)..then constant stomach pains and all that comes with the stomach issues.
When I was in elementary school I started getting migraines..my mom would take me to the doctor and was told I was sensative to caffeine..
I complained so constantly about physical symptoms my mom started writting them down on the calander and at the end of the month she would show me everything she wrote down and explain that it wasnt nice to comlain about stuff just for attention. Alot of people assumed I was a hypocondriac.
As a teenager I started getting exzcema so bad my torso would crack and bleed throughout the day. I had(still have) skin bumps on arms that wouldnt go away.My cycles were so heavy that they would put me out of comission for weeks..yes they were that long.
I started going to the doctor on my own at 16 to try and find out what was wrong with me..she tested me for everything she could think of..except celiacs.
I was diagnosed with ibs and at this point I just stopped eating..it was easier.
The following 3 years I experianced fertility issues and extreme weight loss, my hair fell out in clumps, i was so anemic i started to pass out and i was in and out of emergency with stomach pain(typical swelling, bowel issues, back/frontal pain etc..).
I found out that I had cervical cancer and such high anxiety I was put on medication.
at 27years old my doctor finally did the blood test for celiacs. It came back postive. I was sent for an intestinal biopsy and just before i was put under (as i have a history of not responding to anestetic, they opted to iv me and put me to sleep) the gastro doc stated that he “highly doubted I would have celiacs as I was to big” (the year prior to the biopsy I gained 40lbs for no appartent reason).
So at 27 I found out what had been wrong with me since i was a little girl..yeah me! I was found to have zero Vit D, Vit E in my system, anemia, ospteoperosis and a whopping case ‘O celiac.
I have been progressivley been improving over the last 5/6 years and the mental anxiety issues, osteio, anemia have improved. I had no idea what it would be like to feel “normal and healthy’..I guess I can say I do now!!! On the road to being well.
oh lord sorry about the crappy spelling
That is some story Amanda! And yes, another doctor who is uneducated about celiac disease. Why does it not surprise me.
Continued healing…thanks for sharing your story.
Thank you for this. I am newly diagnosed this week. As a child I had facial swelling the dr.s contributed to puberty and sent me home with hot compresses. I had scarlet fever, chronic bronchitis, asthma and allergies. I was born with formula issues and they put me on goats milk. I have always had repertory issues and was diagnosed with Rumatoid arthritis about 7 years ago. I suffer from depression and fatigue and all the doctors ever wanted to do was give me another nose spray or pill. I have been researching on my own and had to ask to be tested. I am glad to find something but am struggling with the thoughts of it all. And now that GD Kim K! Lol thanks again
Sorry to hear about the diagnosis Jamie but at least you are on the right path now. It’s a great community here…let me know if you need anything.
Wow, all of your stories just make me want to cry.
Here’s mine: Jaundiced at birth. So lethargic for the first 2 years of my life, my mother thought I was retarded. Started cracking my knuckles at 3. Chronic constipation that I thought was just normal for me. Constant canker sores attributed to poor diet. Stomach aches after every meal, mysterious outbreaks of hives, which doctors concluded were just me not wanting to go to school… this to a straight A student whose only refuge from abuse was school! Tonsils out twice, adenoids out once by the time I was 6. Spent 3 years at 57 lbs, although I was growing. Numerous kidney/bladder infections. No period or puberty until 15 (omg, saw pics of myself at that age recently and I looked like an anorexic ghost… how could they think that was normal?) Growing pains from 12 on, knees would swell up like footballs but of course, I was just faking it to get out of gym class. Could not gain weight for the life of me.
By the time I was an adult, I gave up on doctors, except for my yearly Pap and when I was pregnant. Severe back pain that was attributed to previously broken pelvis, scoliosis, compressed disc – a different diagnosis with each x-ray but nothing definitive. Worsening joint pain, in every single joint of my body. Gall bladder removed due to huge stone. Peri-menopausal at 39, finished my periods by 43.
All came to a head December 2010 (age 44) when I got what I felt was a bad flu… lasted for weeks and could not eat anything without suffering from complete constipation alternating with explosive diarrhea… doctor thought it was colon cancer so barium enema but nothing. At my wit’s end, I gave up gluten, went back to the doctor a month later to tell him that everything I’d experienced in my life had either disappeared entirely or improved significantly (and this was when I was only off the most obvious gluten sources!) so he diagnosed me as having celiac disease.
Moved to a new province, went to a doctor last week because of chest pains and inability to breath – he sent me home with anti-psychotics and anti-anxiety pills until blood work could be done… my childhood all over again! Got the results back and I now have full-blown diabetes and high cholesterol… it just never seems to end.
Thank you for giving me a place to get it all out… it helps knowing I’m not crazy and others have gone through the same thing.
Amazing, and frustrating, story Lisa. Thanks tons for sharing.
its wonderful to finally feel ‘not crazy” for once!! hopefully with the removal of all sorces of gluten and cross contamination you will start to feel completely well xo
I’m 18 and was diagnosed almost two years ago when I was 16. It’s been a terrible time. Three to four years prior to my diagnosis, I was sick all the time. I never felt well, I was constantly in pain, and I was tired beyond belief. I saw my family doctor a few times, but nothing ever really came of it. About two years before my diagnosis, he told me that I was incredibly iron deficient and started me on 3 iron pills a day (which is a high dose for a 14 year old). Eventually, my levels went up, and since the pills made me feel terrible, I stopped taking them. Within a few months, my levels dropped right back down. A year prior to diagnosis, my mom first mentioned Celiac Disease. Being 15, I had absolutely no idea what that meant, but as she works for a surgeon, she had come across it and noticed that I shared many symptoms. We brought this up to my family doctor, and he said that because I was so young, there was absolutely no way it could be celiac disease. ONE YEAR later, we finally convinced him to send me for a gastroscopy, which led to finally being diagnosed when I was 16. I started on a gluten free diet immediately, and let me tell you, it was brutal. Needless to say, I promptly switched family physicians.
Other than celiac disease, I have had yeast problems since I was born, according to my mother I had several bouts of thrush and other various yeast infections my entire life. I suffer from recurrent canker sores, which I’ve had for as long as I can remember. I am incredibly deficient in iron (still) and vitamin 12, but I finally found iron supplements that help and I get b12 injections. I hate to say it, but I don’t feel better. I was told that I would feel better within 2-3 months, but I have not yet and it’s been nearly two years. Unfortunately, Celiac Disease and I have not been getting along well. I find that I’m tired all the time, I often fall asleep at three in the afternoon for at least an hour, sometimes several. I was so glad to hear someone else describe the “alien in the stomach” feeling. Personally, I’ve suggested that perhaps there is a demon in my stomach, aggressively clawing its way out. I have a number of cysts, mostly in my lymphatic system, according to the doctors. I was tested for cancer last fall, and thankfully, all my tests came back negative. The worst of all of this is definitely the brain fog. It’s so hard to concentrate sometimes, that it has definitely affected my academic career, which is quite upsetting for an 18 year old.
Unrelated, I’m incredibly happy that I found this blog. I have been feeling entirely alone in this disease. I have a great boyfriend who has been incredibly supportive and careful, and I couldn’t have asked for a better partner in this. It’s just been incredible to read this blog (and it’s comments) the past few days and know that I am certainly not alone in the way I feel. I’m sorry to hear about all of the terrible problems we’ve all been facing, but it’s great that we can discuss them. I know it’s unrealistic, but I can still hope (however naively it may be) that Celiac Disease won’t get the better of us. Stay strong, my fellow Celiacs.
In addition- I have suffered from severe environmental allergies my entire life (especially grass, but also trees, pollen, cats, dogs, dust, etc.) and I had a recent problem with tongue swelling after a meal, but there has been no confirmation as to what that was related to.
Too young to have celiac disease?? What are these doctors thinking?? Arghh.
Hang in there Rachel. Sending some serious celiac strength your way.
Glad my blog is helping you in some way.
Wow, Lisa what a struggle, I am so sorry you are going through all of that. I can relate to pretty much every story on here, gluten is bad, lol… I have been struggling lately because I am pregant and have all these cravings. I cheated and ate this really super yummy rhubarb cake with coconut topping my mom made and she was like, “you can cheat every now and then” and every one in my family was saying “mmm this is great” to give me a hard time so I caved…I was doing so well and they don’t understand you CAN’T cheat…Anyway I payed for it. My joints were on “fire” and I had like exposive diareah (sorry it is graphic) but I have been sick for like 5 days now and am due to have my baby boy any day so I should have not cheated. It is the hardest thing cause I love food. I love cake and anything with sugar. I have an addiction I believe and just need to not even see it. My family thinks I am extreme about it but you have to be to get better. My skin hurts sooooo bad when you poke me or rub it. when my husband massages me it hurts but my muscles are so tense I suffer through the pain to get some mucle relaxation. I am 26 and fear I will develope a very serious illness if I don’t get this under control. The symptoms are so random and it’s like if anything is wrong with you it’s due to gluten…I don’t understand it.
Mary…tell your family to get on the ball. Seriously. Your health and possibly your life depends on it.
Best of luck with your new child.
Please stay healthy!
Wow, Mary, I know that burning joint feeling… it’s totally immobilizing… but I can’t imagine going through it when pregnant! Yeah, for us, gluten is POISON and people need to understand that. There are so many great recipes out there that don’t involve gluten at all, it’s just a matter of being brave enough to learn how to bake all over again. I know I haven’t been that brave, I’ve had a few really big failures and have been stymied by them, but it is possible to make wonderful cakes and cookies that aren’t poisonous for you!
Rachel, I can understand not feeling well, even being gluten free. I just got my test results back two days ago, to find that my cholesterol levels are through the roof, I have full blown Type 2 Diabetes and my thyroid levels are all wrong. Have you had any of these blood tests? The thyroid issues can possibly be auto-immune related (Hashimoto’s disease has a celiac component and covers all my symptoms) and boy, if your thyroid doesn’t work, not much else works! Some of the symptoms are brain fog/memory loss and extreme fatigue. I know you’re young, but I think you are already aware of how much you need to be proactive and fight for your health now… like you said, you don’t want it to progress into something worse!
I have had a number of CBC (Complete Blood Counts) and most things check out except the normal lows (B12, iron, etc), but I am going to see my doctor tomorrow, so I’ll double check with her. Unfortunately, I lost my scholarships at school as a result of not being able to attend classes when I was unwell. So, I’m in the lengthy process of fighting to get those back. Which probably includes being sent to a GI, which I’ve been avoiding since my diagnosis (horrible to do, I know), but I imagine it’s probably a good thing. I’m so sorry to hear about all your difficulties, Mary and Lisa, and everyone else. Best of luck!
Like Wendy all the way somewhere in the comments, Undiagnosed as you know due to lack of health insurance but very much gluten intolerant.
1) Birth: stayed in the hospital because I didn’t want to eat. mom has said that I cried too much.
2) Anxiety all the time since I can remember and stomach issues as well
3) did I mention that I have cerebral palsy that thankfully just affected my walking?
4) skin rashes started mainly as an adult. Stomachs issues worsened
Going gluten free helped everything. Thank goodness because I thought I was going to die.
You’re a survivor dude!
In our own way…we all are J.
It’s nice to know that I’m not completely out of my mind or if I am at least I’m in good company. I found out that I had CD disease at the first of the year. After having to beg the doctor to do the test after doing my own research. In his mind I only had IBS which one day I would stay in the bathroom and a couple of days later I would be in pain because I couldn’t go. I also have the neck/shoulder pain to the point of not being able to lift or do anything but I didn’t really think it had to do with CD but now I wonder. I too had bad cycles with severe cramps, mouth sores and Osteopenia and recently severe headaches. Last appt. all of my vitamin levels were down so I am on mega dosage of vitamins. The doctor told me he really thought I needed medication for depression since I didn’t seem to be acting like myself. I told him that of course I was depressed. How would he feel if he was extremely tired all the time (he told me tireness comes with age) at which I told him this type of tireness had nothing to do with age. It’s the type of tireness where you keep looking at the clock and wondering if 7:00 p.m. is to early to go to bed, the type of tireness that interfers with living. It’s a brain fog that unless you are going through you don’t understand and afraid to eat because you don’t know if you’re going to get sick or not. It’s being sick and tired of being sick and tired.
Needless to say I am looking for another doctor…
Doctors need to learn to listen to their patients more – we know our bodies better then anyone. We know when something isn’t right.
Thank you for sharing your story with us and having a place where we can share everything.
Thanks Theresa. I hate doctors who don’t listen. We’ve all experienced them. And they all suck.
Thanks for the great posts. It’s good to see and hear others views on all of this. I grew up kind of sickly. Parents smoked and so had issues with colds and breathing. I was anemic at one time when I was around 6, and was always a skinny bean pole. (Not now, I’m about 50 lbs over weight and can’t shake it.) When my dad was in his late 40’s, he was diagnosed with Celiac. Then died at the age of 52 from lung cancer. I played sports in school, but as hard as I worked, I could never get the edge, always a little fatigued. I also had a few little warts on my hands. They did go away. When I hit 42 noticed I couldn’t lift my toes up on my left foot, and my ring finger was weak and shaked. I was sent to a neurologist. Found out I had a auto immune disease called Multifocal Motor Neurapathy. It affects my left side of my body. My immune system attacts my nerves. I go in for IVIG infusions every 4 weeks. They pump my body full of around 500 other donars. About 6 months later after being diagnosed with (MMN) I still wasn’t feeling very good. Very weak and fatigued. I went in for my normal check up and asked my doctor to test me for Celiac, and it came back positive. Things are better, accept I still fight with the neurapthy. I believe that the Celiac and the (MMN) are somehow related. I know that they are both Autoimmune diseases, but have heard that in some cases neurapathy can happen.
Hang tough Leigh. Sorry to hear about your Dad.
omg, where do i start? i’m writing about my son who is 31. by age 18 months he had been having diahrea for 6 months & lost 5 lbs. took him to a pediatric gi who told me he ‘looked’ just fine for his age. then after a blood test, she confirmed he was severely anemic. back then (1983) celiac or gluten intolerance wasn’t very common. (really, hmmmm) i questioned whether he could have celiac and was told “NO!”. so then on to a chiropractor/naturalist. she told us to only give him fresh fruits, vegetables, turkey & fish. that finally did stop the diahrea, but it was nearly impossible to keep up with. on and off through childhood he would have bouts of diahrea that were controlled by eliminating wheat/gluten. during his teenage years he had terrible acne and was put on accutane. cured the acne, but had lots of side effects. through high school and college he was known for having to be close to a bathroom at all times. he was diagnosed with ADD after high school and took adderal for 4 years. (the only way he was able to get through college, i’m sure) fast forward another 10 years: after losing about 30 puonds without trying, feeling as if he is in a fog, stomach cramps, joint pain, depression and excessive tiredness i strongly suggested he go gluten free. (again) he HATES going to doctors so he agreed to try. after a few months he was feeling alot better, and only occasionally having bouts of diahrea (probably from getting glutened). 13 months later, he is still trying to be gluten free, but still having problems. i begged him to go to his primary care doctor so he could get a referral to a gi for a colonoscopy. the pc, decided to run some bloodwork but it has come back NEGATIVE for celiac. ok, here is my question: since he has been gluten free (or at least really trying) for 13 months, is the celiac bloodwork accurate? i thought i read on a previous post that a woman’s son had to have gluten for 5 weeks before he could be tested………..did i read/understand correctly? i did go with him to the pc and asked if the celiac anitbodies would show up after being gluten free and was told that they would. i thought i remembered reading somewhere else that they would not. can’t imagine how sick he would be if that’s the case. as of yet, he still doesn’t have an appt. with a gi but is waiting on the ‘referral nurse’ to call him back. i do apologize for this lengthy post.
Never a need to apologize Yolande and I’m sorry to hear about your son’s troubles.
Yes…for the testing to be accurate, he needs to be on gluten. The length of time is debatable. I’ve heard from 4-6 weeks.
But please try to find a good GI who knows the disease well. He should be able to give you the info you need.
And it’s an endoscopy he would need…not a colonoscopy.
Good luck and keep us posted.
thanks so much for your quick reply! i’m not understanding your answer completely. you are saying for the blood work to be accurate he needs to be on gluten? what about for the endoscopy? and yet another question, is an endoscopy and upper gi the same thing? thx again
I”m hesitant to give out medical advice Yolande. There is a lot of info online but you need to be careful because it’s not all accurate. I don’t want to add to that.
Find yourself a GI you can trust…
My problems started before i can remember. My mom says I always had a stomach ache when i ate and the Dr kept saying it was lactose. The pain never stopped even with avoiding lactose. By 21 I was sure I had arthritis because my knees hurt so badly. My Dr said I needed to lose weight at 130 lbs…I was tiny. Lower back pain started. Around age 30 i started to gain massive amounts of weight. I found out I had PCOS They have done MRI’S and CAT scans to rule out MS because I lose my vision for a couple hours at a time every now and then, hand tremors when trying to pick things up, and tingling extremities. There is nothing found in any tests. I have a raised large red patch that I was told was eczema on my chest. I get long red straks of blisters on my stomach and blisters on my hands. Mind you still nothing is wrong with me. Chronic diareah. I have a severe allergy to the cold. I went swimming one day and went into anaphylaxis shock and almost died. Thank goodness I took two allergy pills, they said they kicked in, in the knick of time because I had no pulse. I have not been diagnosed. The reason I know what it is, is because a cousin called and said she was diagnosed with Celiac and I needed to have myself and children tested. Well I had just done a week in the hospital with no insurance so I just cut out gluten instead of trying to pay for anymore useless Dr visits. MY GOD. The rash is gone the blisters are gone my face puffiness has gone away I do not look 8 months pregnant anymore. It is working and I might have the test eventually but for right now I would just assume not eat it and forget the test because I feel good!!!
A lot of people are in your shoes Tawney. They give up gluten without a diagnosis and then feel so much better.
But to get an accurate diagnosis, you actually need to be on gluten for about four weeks. And yes, of course the test costs money as well.
Glad you’re healing…
I am 16 and actually prettymuch diagnosed myself cause I typed in my symptoms online (terrible flatulence and fatigue) and cut put wheat and felt so much better my eczema died down (it was really bad like all over face and neck and arms and my severe back pains (as a teen, I was starting to think I had like a tumor or something) went away. heart burn got better and ( I don’t know if this is connected) but my GPA went up junior year from 3.7 to 3.9 haha
I wouldn’t be surprised if it was connected Katie. If your body is healthy, the mind will follow.
Hi everyone and Gluten Free dude I found your blog on google. I was diagnosed at the age of 16 with celiac disease. Before the age of 16 though I had no issues with gluten what so ever. I was eating spaghetti-o’s and creme of wheat like it was going out of style… Of course once I was near the age of 16 I started to get really bad diarrhea and didn’t know what was causing it… So I go see a doctor and doctor says, ” You have IBS ” So I took the meds he prescribe and still symptoms weren’t getting any better… So back to the doctors again for another diagnosis and check up and finally the doctor recommended I go see a gastro doctor. So I did and ended up having an endoscopy * shudders* and was positive for celiac disease.. I lost a lot of weight before that time though and was down to 105lbs at the 17 and had really bad dermatitis on my scalp and even on my face and body… it was horrible and glad that its over with.. but even now I still feel very fatigued and tired all the time… I get muscle spasms or twitches in my eyes or legs.. I still get acne every now and then but now as bad as it was when I was 15-16 years old… But I find it so hard for me to gain weight. I am 6ft 1 and only weigh about 130-140lbs and that is skinny for my height and age. It seems like no matter how much I eat its so hard to keep the weight on.. I am going to try to see a doctor sometime this week or next and get a check up for Hyper thyroid to see if that is also a factor for weight loss besides celiac.
other symptoms I am feeling as of this day are: insomnia ( sometimes not all the time ) depression, muscle spams. Still have Dermatitis flare up sometimes. I feel weak in the knees sometimes. Very bad gas sometimes and another weird symptom is my bones hurt.
I also feel very exhausted and sometimes have trouble sleeping. I work a part time job and sometimes work up to 13hours a day when I do work. That also adds to the exhaustion but even when I don’t work I still feel that way and feel like I am such a burden at the work place sometimes because I am lacking energy and speed to get the job done.
Thanks for reading!
Sorry I Forgot to mention this also.. but I also have this weird tingling sensation I get sometimes in odd places of my body.. like hands or knees for example.
Thanks for sharing Christopher. It drives me crazy that so many doctors initially diagnose it as IBS. They are just being lazy.
Make sure you find a good Gastro and ask about the weight. I had no problem putting weight back on once my intestines began to heal.
Keep the faith and good luck.
Did you or anyone for that matter get bad heart burn sometimes or was diagnosed with acid reflux?
I had heartburn every day for 2 years before going GF
So, my “known journey” began 6 years ago. After a horrible bout of being ill, with what I thought was food poisoning for 8 weeks, I developed a severe blistery rash on my (how can I put this)…backdoor. After 2 weeks of it, I went to the ER. They “diagnosed” it as Herpes. I said it was IMPOSSIBLE. I refused to take any meds until the culture came back. 7 days later, culture came back negative. DUH! BUT they could not tell me what it was.
5 years ago, in my mid-twenties, I noticed very bad joint pain, creaky joints, vision getting worse, weight gain and loss and gain again. Since I had been diagnosed with PCOS at 18 I thought it was just that. But I noticed those blisters coming back, this time on my hands. I thought it was from working with animals. But once I quit, the blisters remained. One morning while eating a bagel, I noticed new blisters within 20 minutes. Went GF about 6 months later after I could not take it any longer. I felt so much better, and started loosing weight.
The good feelings did not last long. Now, I am fighting brain fog, fatigue, low estrogen, weight gain again, headaches, ear infections and more.
Come to find that NOW after 20 doctors, I will be tested for Hashimotos, and an RE said he does not suspect PCOS at all. URGH! Really? Because Celiac and Hashis can sometimes go hand in hand due to the autoimmune factor. Hashis explains so many symptoms even as a kid, and Celiac explains everything else.
As a kid I had discolored skin on my neck, elbows and between my breasts (I still have that one), weight gain and loss for seeminly no reason (my doctors said this was impossible and it was in my head that there was no reason. I just had to stop eating so much–and they said the same thing 4 years ago).
As a teen, I had horrible “cycles”, Ovarian cysts (which is why they said I had PCOS), more weight loss and gain.
In my twenties (and now 30) I dealt with infertility (still am), weight loss and gain, depression, anxiety, excess facial hair, dry brittle hair that was falling out in clumps, gray hair, hair dye color would wash out, thin hair on my legs (almost nothing there now), acne, joint pain and cracking, headaches, DH (before going GF), constipation, heartburn every single day for 2 years before going GF, food “coma” after eating pizza, recurrent adult ear infections and sinus infections, periods of “hyper activity” and periods of fatigue so bad that I can hardly move.
Next week I am going to have the blood test for Hashis. I hope to get this resolved soon!
I was actually looking up info. to figure out what’s causing my son’s chronic head/neck pain and your page came up. Which is interesting because in January, after 4 long agonizing months, my husband was diagnosed with Celiac’s disease. But, he never was ill nor did he feel sick other than extreme fatigue. He has celiac of the skin, Dermatitis Herpetiformis. It’s Celiac of the skin. He went to doctor after doctor and was put on loads of anti-biotics and was told it could be MRSA or staph infection. A biopsy told us a different answer and he was put on more anti-biotics (which we know are not healthy) all the while he was so angry and frustrated the spots weren’t going away. He finally got into see a Dermatologist and she immediately knew what it was. They did two skin biopsies and then to check for cancer, he had a colonoscopy and both biopsies were positive for Celiac disease. He hasn’t had health problems, so does that mean he will now as he gets older, I don’t know?
But, our 11 year old is on the Autism Spectrum and he has a slew of health issues and is also at risk (we know all this because he’s had every test known to man to check) for autoimmune diseases. I also have two autoimmune diseases myself. So, I can understand what it feels like. I loved your page and blog and I’m definitely sharing this with my husband. As a man, and to have this, is hard for him. The first few months he was okay with it because he finally had an answer as to why he had all those spots covering his body. But, with the passing of time and the fact he’s a man and he LOVES beer, pizza and one of his favorites – Oreo’s, it’s hard for him. I see him struggle every day and yes it’s true there is so little help from any doctors, regardless of the health issue. Ever since our son was diagnosed I’ve learned to be my own doctor and most days I know more than most doctors. It’s a sad fact when it gets to this point in this country where it feels they don’t care, but honestly – most don’t. It’s all about high fees and big Pharma, as someone earlier wrote. I sadly, don’t trust many of them and agree with lots who wrote that they see naturopath’s. They seem to be the best route for all these autoimmune diseases. I’m also thankful that we’ve done the GF/CF diet years earlier with my son, so I was already armed with lots of info. on how to be gluten free. I help him every day, by either cooking gf or finding the foods he can eat. Honestly, we are all much better off because yes, it’s true, the genetically modified and processed foods our country is feeding us, is contributing to all of these autoimmune diseases and cancers. In my opinion…
Thanks for sharing your story, I’m now going to share it with my Celiac dude! Thanks for allowing us to share with you!
Thank YOU Cara. I listen to you and I can hear myself speak those exact same words. Best of luck to you in your journey. You’ve got some challenges ahead of you but I know you, and your family, will be just fine.
I so appreciate your comment.
has anyone considered getting tested for lyme disease (people who have joint/knee swelling, fatigue,insomnia etc…..
also the gene mutation MTHFR can heighten ones risk of embolisms and its pretty common among Caucasians- 46% have one defective copy of the gene . 10-30% of those have two bad copies. (see mthfr.net amd methyl-life.com for more info .) it basically means you cant transform inactive B vitamins into the usuable active forms in your body and that starts a cascade of problems because its the first reaction in a whole long cycle in a persons boy called “methylation”. methylation is taking in substances and transforming them into the usuable forms. form there (turning folic acid into folate , folate east up homocysteine and lowers that inflamation marker and keeps it incheck. then it goes on to help produce SAMe, and glutathione , dopamine,serotonin,melatonin and a bunch of other very important neurotransmitters. in essence the ability to methylate well controls our cardiovascular system (strokes, heart attacks, embolisms ) our mental health ( OCD, depression, panic attacks,bi polar etc) , our detox system (need that glutathione for that system to work! central nervous system . its a BIG piece of the puzzle when dealing with ongoing health issues. by taking the right mehtylated or “active” forms of the B vitamins we finally get out of the starting gate w/ regards to mehtylation. its been a big part of seeing my own health improve. i dont have celiac that i know of but when my whole family went gluten free we saw some really significant dissappearances of symptoms (headaches, fogginess, fatigue) .
I was diagnosed with celiac disease 19 months ago.
After growing up as a ‘fussy eater’ and with a ‘nervous stomach which people considered to be some sort of attention seeking, I learned to be a non complainer.
I was diagnosed with Lyme disease in my 20’s while staying on nantucket and suffered periodic bouts of chronic neck and back ache for about 10 years. Fortunately, that appears to have burned itself out these days.
At age of 40 I started menopause and for the past 9 years I’ve been on hrt. If I come off it the hot flashes and anxiety are unbearable. I always wondered if there is a connection between my very early menopause and celiac.
Also, while on a gluten free diet I got such a severe kidney infection I was hospitalized.
Does this resonate with anyone else?
I have just found this site and have really enjoyed reading your articles and posts from other sufferers. Was told at age 20 that i had irritable bowel syndrome, prescribed colofac and told i would have to take it for the rest of my life. Suffered pain, bloating, headaches, fatigue, rashes and lower back pain, plus terrible mouth ulcers. At age 21 had appendicitis, i dismissed the initial signs as i assumed it was IBS, only when i couldn’t take the pain and began vomiting did i think it was more serious. I gave up on the colofac as it didn’t make any difference to me and just put up with the symptoms. Had an out break of warts on my hands and knees at age 25 which went spontaneously, i have also suffered from Dermatitis herpetiformis over the years. Also over that time developed allergies to perfumes and nickel. 15 long years later began to feel really unwell which coincided with my mum having the same symptoms. Pain, bloating, diahorrea and significant weight loss. Medical profession assumed she had bowel cancer because of her age. She was diagnosed with CD first, my diagnosis followed a few months later. We both went on a gluten free diet, helped by my aunt (mum’s sister) who had been diagnosed 2 years earlier, she had pernicious anaemia as a consequence of her CD. I have been gluten free for 5 years. Giving up gluten made a huge difference to both our lives, no more pain, bloating, mouth ulcers gone etc. I had more energy and just felt well for the first time in many years. 2 years ago i had to give up dairy as did my mum, not so much gut symptoms but sinusitis, headaches etc. Then soya was next, same symptoms as dairy. Recently i have given up sugar which again has helped enormously, mainly with fatigue. My perfume and nickel allergies have disappeared. The thing i find frustrating is the fact i am a nurse and in my working environment i have to put up with a daily diet of jokes, comments about trying to remain thin,i have always been a healthy weight for my height and have no issues regarding this. Constantly offered cakes and biscuits with the “go on, one won’t kill you” comments, i have given up trying to explain!! The most important thing for me is to feel healthy which i now do. My cousin has recently been diagnosed with CD so we are all supporting him as best we can. So nice to find somewhere to put all this, thank you!
Thanks so much for sharing Diane. It is amazing too me the variety of symptoms people have…and the common thread with a lot of them as well.
Regarding your fellow employees…screw them. That really bums me out. A little education and compassion can go a long way.
Thanks for all your info everyone. I am actually thinking I have Hyperthyroidism and pernicious anemia because I am so pale as is and used to be tan as a kid but as i got older I began to lose skin color which has always bothered me and got me thinking.. I am a strawberry blonde and my parents think because of that is why I am so pale.. but I think it is something else entirely. I am Severly fatigued at times and have a loss of energy and just wanna sleep , rapid weight loss.. its like I am constantly stuck between 125-135lbs. Going to try to see a gastrointestinal doctor sometime within the next week and go back in to the doctor I’ve been seeing about the results of my blood /urine work up about the hyperthyroidism and anemia problem I think I have.. Will post details once I find out more.
Thank you all and god bless.
Just as a suggestion….you all might want to read Breaking The Vicious Cycle, and research SCD which is The Specific Carbohydrate Diet.
I have various health issues as do most of the folks posting. Long story short, my many years of research led me to various health professionals including MDs and integrative practioners.
This led to more research and finally to this book. I went to Amazon, and read every, yes every, review on this book. The book can be purchased, but I found and downloaded a free .pdf version over the web. Also do internet searches for SCD, and read, read, read!
Many folks that have gluten sensitivity or celiac issues have been able to benefit from the teachings in this book.
I’m was already doing a modified version of the diet bc I figured out it wasn’t just wheat that was the culprit of my health issues. The book discusses digestion and what may just be the foundation of a lot of digestive issues as well as a variety of autoimmune issues.
Get healthier, stay well, and enjoy your life.
I just want to point out that like many here, I have health issues as well. Digestive issues that cause the oddest and sometimes debilitating symptoms.
I’m always searching for a way to use food as a way to lessen symptoms so I am constantly searching for natural routes not a magic pill or potion.
There is nothing to buy here bc you can get this book from the library, or download it as a free .pdf like I did, or search the internet on SCD or Elaine Gottschall.
I’m not saying cure. I’m saying you might feel much better if the SCD works for you.
It all started in 1977. Changed schools in Grade 5 and the stress activated celiac disease. Stomach pains, diarrhea, stunted growth, some bloating with ADD and non-stop talk. Was up and down until 1990. Also before 1990, bronochitis, cough, colds and mono. Once you have mono, your immune system is never the same. (T cells)
Started in 1990 to pass lots of blood with my stools. My insides were so inflamed and my body had enough. Since I wasn’t stopping the gluten, my body took over and washed it out itself. My family doctor was great back then. He stopped the lighted probe and its mission not even a minute into the procedure. He said, Brent it doesn’t look good and I’ll stop because of the pain. I turned 23 that year. Went to GI doc who went in and looked around. All of them would always say “your insides are badly inflamed.” No really? 3 docs stood over me and were baffled. They told me, could have stomach cancer, maybe crohn’s, probably colitis. Didn’t run really any tests. They just stood there and scared the $hit out of me. You already know what I was diagnosed with. IBS. And for the record, IBS is one of many made up medical terms to cover their ass. When someone tells you its IBS, that means we don’t know what the hell is wrong. I have dealt with doctors, nurses and hospitals for over 30 years. I understand how they operate.
In 1993, (26) depression, panic attacks and anxiety took over. I woke up one day and started thinking about taking my life. Inside I knew these feelings were wrong and fought those thoughts everyday. Couldn’t take it no more and I asked if SSRI’s would help. What a mistake that was. 10 years later, up and down like you would never believe. I do not believe in those medications. Its all for money. Pills never would work anyways when gluten is still going in.
Also when younger acne, mouth sores, warts on feet, nosebleeds.
It is all from bread. Also almost all my food intake back then was gluten. Lots of bread, pizza, beer, noodles, hotdogs etc.
Severe exhaustion/fatigue/stomach cramps/gas/bloating/diarrhea
Depression/anxiety/panic attacks/irritability/mood swings/bi-polar
Osteoporosis/joint pain/bone pain/lower back issues/arthritis
Sinus problems/asthma/breathing problems
MS like seizures (lost vision once during seizure)/nerve damage
Confirmed with Carpel Tunnel Syndrome, no its called celiac.
Numbness hands and feet for 30 plus years.
Coughs/colds/left side chest pains/migranes
Skin rashes/DH-dermatitis herpetiformis/acne/pale complexion
Dental work at least 75%. Gluten wears down your teeth enamel.
Thinning hair/ weight loss/kidney damage
For all the pain, anger and years of constant grief, I’m glad most of it is over. What was done to me, said to me over most of my life by “health care professionals” has been downright pathetic.
Once I figured out what is was and started to research more, I could now see that almost every health problem I had and still do is from celiac disease. Its from great people like yourselves that took the time to post and figure out together what is going on.
Now I go from victim (lol) to teacher and love every minute of it.
Thanks everyone for sharing. Means alot to me.
Celiac now 35 years. Undiagnosed for 30 years. GF now 6 years in January 2013. Scares me to think that being unaware for all that time, I was so-called cheating on my diet. Wow, pretty much 11,000 days no gluten should of been going in the pie hole. Most of my life I’ve tried to help people. Must be that Irish gene. Oh yah, more great news. Have I told you I work at a brewery? 9 years. Pour some more salt in the wound. lol.. Add anemia to the list too. The stories I could tell are endless. The last time I was in the emergency room, I diagnosed a older lady who worked there. I was so mad that day and made a list of all my health problems. This lady came up to me and wanted to see what I was writing down. She pointed out she had at least 5 or more. I knew right away. She was English and Irish, had bad RA, DH and low iron in her blood. I told her, “I’m sorry dear, no more beer for you.” She couldn’t believe it. Should of seen the female doctor and nurses. Don’t waste anymore of your time talking with doctors and nurses about celiac. Why would you? They know nothing about it. The odd one will listen, the rest, totally useless. Thanks GD
Wow..thank YOU for sharing your story. Everybody has their own journey…their own story. Just heartbreaking all of the unnecessary suffering.
I feel so fortunate after reading everyone’s stories. Have hope regarding the medical community. There are knowledgeable and empathetic docs out there.
I had been feeling lethargic, unmotivated for about a year. I also had alternating severe stomach pains, diarrhea, constipation, and nausea. My health insurance changed, so I decided to get a full physical with my new doc. Found out I was severely anemic (hemoglobin 7.8, nonexistent iron stores). Doc sent me to see GI right away. Had endoscopy (with souvenir pics), CD confirmed with biopsy and blood test. Doc sent me to hematologist and started my on iv iron therapy. Was also sent to dietitian, and made sure I had needed follow ups.
I am very grateful to have such a proactive and knowledgeable doc. Only wish everyone was so fortunate.
GF diet is challenging but I have a supportive family. I am thankful every day.
As a kid, I had very sensitive skin. A known nickel allergy. Very skinny. Couldn’t gain weight. In high school, I was dx with irritable bowel. In college, I had 3 solid years of kidney infections. Now, when I have a kidney infection, I no longer have pain; they find the infections on routine pee tests. During my pregnancies, I had treatment-resistant anemia and some major complications (pre-eclampsia, placental abruption, hemorrhage). I had gallbladder disease, acid reflux, chronic gastritis, “allergic” dermatitis (but no positive allergy tests — this is the DH), ataxia, Vitamin B12/folic acid deficiency that resulted in depression/bipolar-like mood swings that went away on a GF diet, arthritis at 29, hair loss, and would catch every infection I was exposed to. Basically, I was sickly but b/c most tests came back normal except for the occasional anemia that was blamed on the meds for the gastritis, I was also label as a psych patient. Annoying. But the GF diet works. I remember after being on it for just a couple weeks and the anemia treatment actually working, feeling this warm sensation in my hands that I never felt before. I asked my doctor what that feeling was…she said, it was blood. It had been so long since I felt warm (b/c I was anemic all the time) that I didn’t even know what warm blood felt like. Wow.
Wow is right! Thanks for sharing Rita.
I apologize in advance if this is too long.
first off I found you earlier today and I have not laughed and cried so much in one night ever. Thank you so much for what you do!
Like you I do not know if all of this is related to my celiac but maybe we can all help each other figure it out based on shared symptoms and recoveries.
I just turned 41 Thursday. I have been clean (gluten free) three years this coming April. I always have to giggle when I say that. It’s like we need sober chips or something.
As a little kid I can remember being under four and being fed laxatives on a regular basis. Everything I ate made my stomach hurt and bloat but people just said it was hereditary and get used to it. My mom (died at 45), grandmother (died at 53 one week after a physical where she was declared “healthy) and two Aunts(one is 55 and uses a walker and has chronic fatigue, depression, g.i. issues ) all had the same issues.
I would lie in bed at night crying because my bones hurt. I was told it was growing pains and that I should also get used to it. These “growing pains” were still around in my adult years.
At the age of 14 I started getting painful rashes that looked like acid burns and blisters. I was told allergic reactions, eczema, psoriosis etc. ( I began baking professionally at this time too.) My hands and feet were always abnormally cold. (poor circulation they said) I was also diagnosed with Irlens.
I always had brittle hair and nails and sensitive teeth. (until now)
I was actually diagnosed in June 1998 by a semi retired diagnostic surgeon turned family practice doctor in Oklahoma. I was at the severe chest pains that took my breath away and that radiated into my left arm. (these are the symptoms that prompted me to get a diagnosis) My grandfather had just died at 62 of a heart attack, my mother had just committed suicide at 45, I was a mother of three and in an abusive marriage. Every doctor I saw told me it was stress. I am grateful to this Doctor for taking me seriously. He diagnosed me with mitral valve prolapse, regurgitation, Gerd, lactose intolerance and celiac. He said he believed but could not prove they were all related. He said he understood I was a pastry chef (cruel joke huh?) and that I needed to not eat so much pasta and pastries any longer. That was all I knew. I left my husband and moved 1400 miles away shortly after. After about six months of pasta only once a week instead of three or four times a week, and a couple of lettuce wrapped burgers I forgot about my diagnosis.
In 2005 I began “eating healthy” whole grains and such. I went from a size 6 to 14 in three months. Suffered from rashes, bone pain, chest pain, depression, g.i. issues, severe fatigue, brain fog, severe back pain,sinus infections that never went away, allergies, I could go on. I felt like a hypochondriac.
In 2010 I could hardly get out of bed. I was always exhausted, It hurt to move, it hurt to not move.It hurt to try and think. To go to the bathroom was a nightmare. Things were either backed up for days or free flowing too much. I now hated eating because I knew it would come with bloat and pain. I now also had Ibs diagnosis, anxiety, etc.But nothing made anything better. Then due to extreme pain in my mid back I found myself in the E.R (I HATE hospitals and never go) Turns out my gallbladder had died. not just thrown stones but had died a long time ago.I was admitted immediately to the hospital for surgery. I was very lucky to have a Doctor put together all of my symptoms and suggest being tested for celiac. I told him I didn’t want to go thru that test again. He about feel over when I told him I had been diagnosed so long ago and wasn’t adhering to a gf diet. My nurse was gluten intolerant and for a week I was given intense lectures and reading material.
Now that I have been clean for two years (no it was not overnight) the brain fog and all other ailments have gone away for the most part (unless I get glutened) It is a wonder and shame that my family every thought our pains were normal. It is wonderful feeling healthier and younger at 41 then I did at 21.I do wonder if my Mother and grandmother would be here today if they had known, I wonder if my 21 year old son would still be schizophrenic if we had been a gf household his entire life or if I had not been sick when I was pregnant. anybody else have experience with this?
I hope this history helps someone.
Being a celiac indeed sucks! Especially when you have made a career out of Pastry. I try to make having it not be in vain by helping others with this but it is not always easy. I am ever so grateful to have found your site. Your frustrations, humor and encouragement have already helped me tremendously to carry on.
Don’t know what to say Christal. You’ve been through hell and yet you have not given up. It’s a testament to you. Stay strong. Stay gluten free. Stay healthy.
I apologize for all of the typos. Suffering from the gluten flu the past few days. Hello brain fog. It was nice to read it affects your moods too!
I am self-diagnosed with Celiacs. I went gluten free in January 2012. I am now 42 years old. Prior to going gluten free, I have seen a range of doctors from neurologist, sleep doctors, psychiatrists, endocrinologist, gi doctors, allergist, and I can’t think of who else. I started having problems with stomach pains in my teens and was diagnosed with endometriosis. I was told that was the cause of my chronic nausea and vomiting. I did drug therapy and had surgery for it twice, but it didn’t help.
Soon after I had my oldest daughter, I was diagnoses with a thyroid problem which I was later told was Hasimotos. I have had quite a ride with the thyroid problem with my levels bouncing all over the place.
However, even when the thyroid problem was allegedly under control; I was still suffering from severe fatigue.
Starting in my teens I also had problems with depression. I was able to keep it under control for years with St. John’s Wart, but as I got older that would no longer help. I am now on two different prescriptions for depression.
I have had lower, upper, and neck pain for as long as I can remember, but I just learned to live with those issue. As I have gotten older, I have a lot more pain various joint pain and other aches and pain, but I just assumed that this was due to aging. For the longest time it never occurred to me that this was not normal.
As I got older, I started having more problem. My right eye started drooping. I have stomach bloating and cramping and constipation. I was never lucky enough to lose weight, I think due to the stomach pain I constantly think I am hungry. I was constantly nausea and vomiting at least once a week. But I could deal with all of that, it was the exhaustion that I could not deal with. The exhaustion just killed me. I got to the point that I could not make it through a day without numerous naps and I was still exhausted. I have 3 kids and I work full-time, so it was terrible.
Well problems continued to pile on each other. Since my family has a history of Addison’s disease, I was tested for that but that was not my problem. I went in for sleep studies. My psychiatrist prescribed ritolin to keep me awake, but that didn’t really help.
After research on the internet, I found a link between thyroid issues and celiacs and since my grandmother basically died from Celiacs, I decided to try to go gluten free. At first, I felt worse, I guess some sort of withdraw symptoms. However, by the time my two weeks being gluten free was up, I could not touch gluten (even the most minor amounts) without getting violently ill.
After going gluten free, my thyroid levels started improving, although they still have not normalized. Also, even though I am feeling better something isn’t still right.
So I finally decided to go see a GI specialist again. Unfortunately, that really wasn’t much help. Basically the doctor told me that unless I went back on gluten to get a confirmation that I had Celiacs that she couldn’t treat me like I have Celiacs and do some different tests. I cannot bear the thought of eating gluten for a couple of weeks just for a test. I tried to explain that between three children and work, there is no way I can be out of it for a month for a test.
So at this point, I guess I can’t say I have Celiacs, I just can’t eat gluten. The troubling part is my daughter is having similar symptoms but a blood test doesn’t show that she has Celiacs and of course the doctor won’t run further tests on her. I really feel like I am at my wits end here.
I would guess at least 25% or more have this and don’t know.
The blood tests are misleading and a naturopath will explain why.
At least 6 months now, something is attacking my body. Most of us
would guess maybe some gluten went in by mistake. No it didn’t.
I have CSI’d every other health issue known to celiac about 100
times over in the past 7 years. OCD (Obsessive Celiac Disorder)
Had no choice. I know damage is done not knowing for 30 years.
Here’s what has been happening. Jennifer even mentioned puffy face. It has become extreme. Fatigue, sluggishness, increased
sensitivity to cold, sometimes constipation/diarrhea, dry skin, hoarse
voice, elevated LDL blood levels, unexplained weight gain, muscle
aches with tenderness and stiffness, pain, stiffness or swelling in
your joints, muscle weakness, brittle fingernails and hair, depression, headache, numbness and tingling in the feet and hands, abdominal pain, constant desire to sleep and a lack of thrist. My body temp yesterday at one point was 96.4 F. Hypothyroidism
I don’t know how much more of this I can take. It never has ended
for me. Thanks GD, Jennifer and everyone here for giving me the
strength once again to tackle this everyday.
The signs and symptoms vary widely, depending on the severity of
the hormone deficiency. But in general, any problems you do have
tend to develop slowly, often over a number of years.
Don’t think that some pills will solve this problem. This is a perfect
example of when you would go to a naturopath instead of a doctor.
Kelp and many other natural solutions will work much better than
prescribed medications. Just took temp again, 96.6 F.
Paging Dr. Nick Riviera, Dr. Nick Riviera..
My family and friends think I’m crazy. That’s right, crazy smart, lol.
Time to devise plan of attack once again.
I’ve been reading all of the comments and am blown away. I’m 49 & have suffered from chronic diarrhea, extreme bloating, & other GI issues since I was 18-19. I’ve had numerous tests with DX of IBS, spastic colon & checked for Chrohn’s. In my mid to late 20’s, I developed chronic bronchitis & asthma. Developed chronic sinus & breathing problems. Stopped having periods at 34.5 and diagnosed as post menopausal at 35. At 44 was told by dtr i was severely deficient in B-12 & folic acid. The last few years developed bad lower back pain. Currently my lower back hurts every day & even wakes me while I’m sleeping. Just told my husband that now when I lay on my side I wake up with my shoulder, hip & knee hurting. I use a heating pad & take Advil almost daily. I’m always tired & often have no energy. I’m petite & short but only weigh 95-100 lbs. I quit going to the dtr a long time ago because I never got any relief. I stumbled onto this blog & think I should probably go have the blood test done for CD. Thank you for sharing this information.
Please go get yourself tested. Stay on gluten until you do or the test will not be accurate. Good luck and I wish you healing.
So I am a single mother of two girls and my oldest that has a lot of medical problems and now after reading these stories it has really opened up my eyes. And yet when we go to the doctors no one ever wants to test for the things that has been mentioned in these other stories. So here goes my story about my oldest daughter, since day one we knew something was wrong with her, no doctor could figure out anything she was on depositories,enemas , etc, from birth to 4 years. After that we found out that she has celiac , then two years after that we found out she was type 1 diabetic, three years later she now has adhd, and odd, and now we just found out that she now has high cholesterol.Oh and to add to the frustrations she can not ssdi or ssi, what the heck , with a child that has this many medical problems cant get it ,but yet there are many people out here in the world that has it and don’t really need it, OMG what am i to do anymore is there anyone out there that has had the same thing or close to this happen please tell me ,I am so worried that we are going to get bad news that i will not be able to cope with.
So, I was just cruising through in search of info on which pneumonia us Celiacs are prone to because I am ill and not recovering (which is it?), but after reading this post and seeing that numerous women commenting have had ovarian cysts, I had to chime in. Is there info on a connection between the two?? I ask because, I, too, have cysts. Mine is actually Polycystic Ovarian Syndrome (PCOS).
Here’s my list of fun down through the years..(dx’d Celiac at age 30, beginning of November 2012 btw, should have been sooner since I ASKED to be tested, but doc didn’t “think” that was it.. thaannkks..)
– Frequent tummy troubles since I was a toddler. (I have my Mom’s calender from the time, she followed the pattern for at least a year then.)
– including constipation (doc said I was full of poo, literally, up to my throat.. one of my earliest memories is of getting an enema. Fun stuff.. not.), diarrhea, pains..
– Began getting Gallbladder attacks at age 14, but it took 6 years, numerous doctors, many ER visits, and a roadtrip nibbling black forrest ham to figure it out.. and when they did, I had a huge stone blocking my bile duct and needed emergency surgery. (Ham doesn’t sit well with gall stones)
– Bipolar, diagnosed 2003, but struggled for years
– OCD, SAD, PTSD.. 2003
– (Severe) Fibromyalgia, diagnosed 2005, but again, had suffered years.
– Chronic Fatigue
– PCOS, dx 2001
– My daughter, first child, was stillborn at 38 weeks (full term) after being fine two days before.. no cord accident, had an autopsy done and she was perfect, so they added her’s in with the other 40+% of stillbirths with no explanation.
– Ganglia/ganglion cysts starting teen years (one removed from wrist, surgically, early 20’s)
– Migraines and frequent headaches
– Insomnia since I was little
– Nightmares – very vivid – (to the point of needing prescription meds – Prazosin.. I thought they were joking when they said they had meds for this, but it was an amazing relief when it worked. I took it for a year and now I just take 1 if I start having nightmares multiple nights.)
– Sleep Apnea
– Restless Leg Syndrome (spreads through my body and is miserable.. I hear going GF helps this??)
– Sleep Paralysis
– Catch every cold, flu, whatever that goes around and get it worse than everyone else, take forever to get over it.. its like it mutates!
– Obesity (this is [WAS..*] due, in part, to PCOS which messes with insulin like Diabetes, which is one thing I, thankfully, do NOT have even though it runs in my family.) [*I’ve lost a total of 146lbs from my heaviest in 2009, 114 of that in the last 18 months.. sorry, just HAD to add a positive into all these negatives! 23lbs to go! Yeah, I was real big.]
– Compacted Pelvis, one leg longer than the other.. (Don’t look at me like that, I’m not a circus freak.. bwahahaa its only about 1/2″ unless I’m pregnant) does this even count? (Trying to be thorough so you can get that Nobel! Hahaa)
– Collic (as a baby.. now we’re getting somewhere! Hehee..)
– Allergies = chocolate, mint & cillins, plus minor seasonal/household/pet
I think that’s most of it.. I really wonder how much could have been prevented had I been diagnosed Celiac sooner. I’m pretty sure I’ve had it all my life because of the stomach/digestive issues. Its likely I would still have a gallbladder at least.
Good luck and I hope, if nothing else, this comment amused you. 🙂
Oh! I forgot, I am chronically deficient of b12, d, folic acid & sometimes potassium.
I’m so glad I stumbled onto this thread! I’m new and this is my first post.
Here’s my story. I’ve had really bad stomach issues for the last 6 years. They started in college and I was diagnosed with IBS. I had the gene test done for CD and didn’t have either the DQ2 or DQ8 gene. Basically my Dr and GI told me to not stress and my problems would go away. They never did and I made multiple trips to the ER during the following years for random things, especially severe constipation. I also developed strange bouts of fatigue, asthma, anemia, extreme bloating, rashes, sleep issues, and “brain fog”. More tests showed a positive ANA but drs thought false positive. Plus, I’ve also had very freak and random things happen to me while growing up, such as inflamed cartilage between the ribs, that dr’s always chalked up to freak one-time things.
This year, I’m constantly getting injured. I’ve been running and competing in triathlons and Spartan races the last couple years. Last Fall and this year was full of injuries. Numerous ankle sprains, calf tears, ITB, lower body joint pain and low back issues. I was only able to do a couple races before the injuries took over this year. Now, my back flares up at random times-sometimes after walking other times I randomly wake up with it. I took weeks off from doing anything and the fatigue, insomnia, etc seemed to get even worse. On top of that, I had a back spasm 5 weeks after doing no physical activity whatsoever. I know there’s no way it’s over-training. Plus my hair is thinning out, my nails easily break, and I’m tired all the time. The next (and last time) I went to try to figure out what’s going on, Dr told me therapy would be my cure!
Needless to say, I switched Dr’s. When I first saw my new dr, he immediately thought CD. Again, I went through the tests. I noticed that the Antibody units were a 6, but I was wondering if that could be off because I limited gluten/dairy for a couple of weeks so I wouldn’t be sick for a cruise.
Also, my recent ANA test came back positive. Seeing a specialist next week. I’m sure something’s going on because I’m positive I have Raynard’s-I always lose feeling of my toes in the winter because they get so cold and turn white/blue. My fingers don’t get bad as long as I wear gloves.
None of this really makes sense to me and I’m wondering if I’m on the right track? Going gluten and dairy free works for me but I’m the type of person that needs to know the medical reason behind it. Also, my family and some co-workers think this is all in my head as well so they aren’t accommodating for lunches, holidays, etc. It would be nice say “I have this….It wasn’t all in my head…told you so”. Very mature I know haha
Has anyone been in a similar situation? Has anyone had Celiac without the DQ2/DQ8 genes?
Hi Micki. IrishHeart posted something I believe with what you’re
talking about, people with problems and gluten without DQ2-8.
To me, pretty much everything you have is from gluten. Your body is
slowly getting worse and shutting down. You have no choice but
to stay away. It will take time (too much) but your body will slowly
start to rebuild. You should notice big difference in brain fog, pain,
digestion, muscle spasms and overall just feel better.
I can confirm your feet and hands issue. Exactly how mine were for years. Sometimes feet would get a light blue color. Doesn’t help
when I live in the Great White North. “Take off eh”
Also my left foot would always be worse. Some things I try to forget. I had a stroke in 1991, still 23 years old. Played hockey back to back for 3 hrs with a 15 min break in-between. When you have a
stroke or heart attack, it usually will attack the weak side of body.
You guessed it, my left side and explains alot to me.
Micki look up “Peripheral Neuropathy” and gluten and neuropathy.
You will sleep better tonight. 6 years ago before I shut down, my left
foot was extreme with throbbing, achy pains, cold, puffed up at least
a good 2 inches all the way around. Walked to the bathroom and
could not feel my left foot. You and I probably have some nerve
damage that is done but alot will get better without the bread. I could
never eat gluten again on purpose to show on blood tests. What is
your IGa number? I will say its over 20. Mine was 32 Jan.2007. Now
its under 5. My CRP level almost all this year, 1.7
Almost everytime here, someone gives me the chills.
Micki described something and I just lit up like a xmas tree.
Inflamed cartilage in the ribs. Yet another piece of the puzzle.
This explains alot about my upper body problems. I swear 10% of
my stress just melted away. Talk about a natural high.
I always school doctors on celiac every chance I get. Its not for me.
Its for everyone else who gets screwed around for years.
Met another doctor in the last 7 days. She is from England now in
Canada. She told me “celiac doesn’t destroy your body.”
To me, thats all I needed to know about her.
Ho Ho and mistletoe. Add some New Planet in when applicable.
Hiya im just hoping I could have a little help … So im just about to tire 16 and I’ve had coeliacc for 8 years. I used to try really hard to stay on my gluten free diet but when I was 13 everyone found out about my coeliac and people would bully me and shout hey butter because they thought it was funny because they would ask me what I was aloud to eat and was I aloud butter it didn’t make me laugh ino it sounds silly but it hurt me. So since then I decided when im out side of the house ill eat what ever I want just so that people won’t make fun of me. But id say in the last year or so I’ve had alot of back pain, weight loss+weight gain, sharp pains in both my hips and bottom of my stomach my ancles, thus, my knee joints and elbow joints really hurt and so does my neck. I’ve done gymnastics for as long as I can remember and I only end up going to practice once or twice a week because im in pain. I haven’t told my mum tho, she suffers from ulcer colitis. I was reading up that I could have developed ulcers in my joints or some type of cancer this is really scaring me as im only 15!!! I eat very healthy, run out of breath VERY FAST!!! Feel light headed and dizzy alot and feel bloated. Sorry this post is all over the road but I hope some one can make sence of it and get back to me ASAP!!! Thank you so much! :’)
Hi Shanna. Two things: 1) Please stop eating gluten immediately. Don’t let the bullies get to you. Stay strong. 2) Get yourself to a doctor. You need to tell your Mom.
Shanna, don’t let others bully you into doing things you know aren’t good for you. Hold yourself strong and do what’s best for you!
Many young people now try vegetarianism, veganism and other food lifestyle choices! You need to stick by your lifestyle decision in order to stay healthy. The people who tease you do not deserve your attention or your care — they certainly aren’t demonstrating care towards you!
My daughter is 21 and, like me, is a celiac. She has suffered many years with aching joints and skin rashes that have now disappeared with her gluten free diet.
You WILL feel better when you stick to your diet – if you don’t want to eat the bread and gluten when you’re out with your friends, find another excuse — I’d rather have fries, or I’m on a low carb diet…
Just stick to it, because it’s more important than you realize to your health – your joint pain will get SO MUCH better when you don’t eat the gluten.
Because celiac disease deprives the body of essential minerals,
vitamins, proteins, and fatty acids, it is related to a broad range of
other conditions, including amyotrophic lateral sclerosis (Lou
Gehrig’s disease), baldness, canker sores, cirrhosis, compulsive
or binge eating, idiopathic thrombocytopenic purpura (purple
mottling of the skin), MS, SIDS and especially non-Hodgkin’s
lymphoma. Celiac disease is also associated with autoimmune
diseases such as lupus, RA, sarcoidosis, scoliosis and Sjogren’s
syndrome. Milder forms of celiac may go unrecognized and cause
asthma and eczema.
Bonjour. There is no way its hypothyroidism. My lab results.
My lab ranges. TSH 0.27 – 4.20 mIU/L Mine=0.84
Low shows hyper, high shows hypo. That upper range for too long
was at 5 and higher for alot of labs. I found something very interesting today. 95% of confirmed people with normal thyroid
function, their ranges were 0.4 – 2.5 mIU/L. It looks like in the last 5 years alot of labs finally brought that number down. My point.
Way too many people walking around with hypo and told their fine. Not the doctors fault. This is actually what woke me up bigtime 20 years ago. Who’s to say this range we are told is correct?
Way too many celiac/gluten people also walking around unknown. 97% of celiac’s undiagnosed, that number has to change.
So, whats left? This is mercury leeching from teeth into body.
This is MS or this is MS from mercury in system. I hate these auto-immune diseases. So many symptoms are so much alike. I need major mercury removal. Knock me out, get that mercury out and I better see a smile when I wake up. Opposed to waking up by the river with my gold crown missing and mercury still intact. lol…
I will have to fight for a MRI to confirm for MS because this is all in my head. I’ll show you my papers. Their etched in my arms everyday from the sunshine attack last summer. DH scars. I told my
new doctor from England that I met about my DH and the only cause is celiac disease. She told me that rash could be from alot of different things. I said that is incorrect, go read Dr. Peter Green.
I can’t make her and of course, do you think she did go and research it? Is the Tooth Fairy coming tonite? I doubt it.
I will never stop fighting for the celiac/gluten person that is told its all in your head, just go home and listen to some music, you worry too much, looks like you have IBS, you have depression and must take these pills the rest of your life nonsense. This has been going on since 1988 and they pushed around this part Irishman one too
many times. My anger is really the years of reading about all of you
and how things went down for way too long. I do not want anyone
to travel the road that I did.
My blood work is getting better in certain areas each time. I hounded them in Dec and Jan and had 3 blood tests now. My last
one I asked to screen for celiac. Is this possible? My ELISA 96 item blood work showed negative to everything. I call BS. Who did that bloodwork… A Wal-Mart photo lab!
Vitamin B12 977
Vitamin D3 142.7
IgA 0.40 – 3.50 g/L 1.53
DGP Screen All negative
Iron 13 – 33 25
TIBC 45 – 72 54
Iron Saturation 25 – 56 46
Glucose Random 3.6 – 10.0 4.9
Electrolytes are all fine.
So I was told for about the 17th time that I don’t have celiac.
I reminded her that its been 6 yrs now gf for myself and of course
the bloodwork is going to show that. Then she told me that I can’t
be treated for something that I don’t have. Whatever, say Hi to the
Easter Bunny for me. I am out of here.
P.S. Doomsday Preppers (Celiac Edition) You need only 3 things.
1. A empty bunker. 2. gf dogfood 3. water haha
Hockey is back….drop the puck zebra!
You gals and guys light my candle everyday. You kick ass!
One last thing, a new entry into my Top 10 list.
Some say he goes by the name “Frankie Beans.”
Just a phenomenal, phenomenal comment…thank you.
Your welcome, anything for my celiac brother.
It’s a constant dance with this protein called gluten.
Does anyone have a MRI in their basement I can use?
That or a time machine. Dial that sucker back to 1977.
One thing that keeps sticking out to me is my issues with heat.
I love the sunshine and know my limit. This has been more with a
hot shower. When I gather my MS info, this is what I find.
Almost all cases of MS are marked by fatigue and heat sensitivity,
that is, the appearance or worsening of symptoms after exposure
to heat (such as a hot shower) Also how the T cells are involved.
My worst thing I do is get all bent out of shape. AWWWW MS,MS.
Then I give myself a reality check and say it doesn’t really matter.
If MRI shows no, then its on to my teeth. Both need to be done.
GD can voice his opinion all he wants. I like him because he tells
it like it is. I would love one MS person by chance to search heat
issues with MS and find posts here and realize its maybe gluten.
I think GD would agree that both of us just want more awareness
and proper health treatment before, during and after.
I’ m now a grandmother and have been sick with belly achs my whole. life. I was dianoses with celica disease a couple weeks ago. After thinking back could some of these condistionss be related? I was hospitalized with paralyzed legs for 3 days and was sent home with no real answer. I also had skin reactions that came and went, better now . Could this be Lupus? Bad headaches have been off and on most of my life with very dry skin to.I will began to understand more about this disease as I read Thanks for the great commits.
Hey. I’ll get straight to the point! Age 10 – appendix. Age 19 – ovarian cysts. Age 20 – depression. Age 30 – pilonidalsinus. Age 30 – DVT in arm and multiple blood clots in my lungs. Age 30 – pnuemonia and pleurisy. Age 31 – miscarriage. Age 32 – depression. Age 33 – miscarriage. Age 34 – spinal surgery. Age 35 – pernicious anemia. Currently waiting for a biopsy to see if I have coeliac disease!
Holy moly Michelle…not sure what to say except I’m sorry. I’d be very curious if you have celiac, especially with the blood clots. Please keep me posted.
Michelle, read the book Shadow Boxing! author is Dr. Henry Malone. I believe it would be very helpful to you. you have been through a lot, I am so sorry! I don’t know you but I do know that depression is spiritual. I struggled with depression for a long time. depression runs in my family and there have been many things in my moms side of the family that were spiritual. Her uncle committed suicide, her mom was bi polar. her aunt and sister are into phycic readings and things along those lones and they all have gluten sensitivity and mis carraiges. they don’t speak to eachother anymore because of years of lying and unforgivness. I believe all those things have opened them up to bad things and illness. Illness can be spiritual and if you have had so many things happen to you dealing with your feminitiy like miscarraige… I really think this book would give you clarity.:) I have celiac disease but am starting to think a lot of my problems in my life were spiritual battles. it would be well worth a few good days of reading this short book to see if maybe it is spiritual.
My son has had iron deficiency and stomach troubles for the last 2 years. We recently had him tested for celiac disease and it came out negative. However, my wife and I haven’t been taking any chances and have decided to keep him gluten free for the last 3 weeks. WOW! his weight gain has increased, his stomach has stopped hurting him and his “mental fog” has almost vanished completely. We are going to test him for iron deficiency in the next few weeks. My question is this, the GF diet has obviously made a change. How often do these false negative occur?
False negatives can occur if your son has an IgA or IgE deficiency. (I think that’s right. Can someone check me on that?) Basically, the blood test doesn’t work for something like 3% of the population. Get him an endoscopy, if he’s not too young. (And dont bother with a GP. Get yourself a good gastro. The sad truth is that some GPs are using outdated celiac panels or dont even know how to read the newer panels.) Even if the endoscopy is clear, well, the proof is in the pudding. The good news is that he won’t deal with the more dangerous complications that sometimes come along with celiac disease, if he doesn’t have it. But recent research has found that gluten sensitivity can mimic most of the side effects of celiac disease, so he’ll feel better (and grow better) off the gluten.
Hello everyone. I am posted here to try and find some hope and direction. Eight months ago I had a severe pain in my right upper quadrant that was constant for weeks. I did not have a primary physician so I went to urgent care and two ERs multiple times before an ER doctor admitted me after I begged him to not give me more pain meds and send me home. After five days and too many tests to list, the doctor could not come up with any definitive answers. My gall bladder was removed and the pain went away. No stones or abnormalities were found. For three months I suffered with chronic diarrhea, body aches, and severe weight loss. Concerned it wasn’t part of adjusting to life without a gall bladder I contacted the Dr. that did my scopes. He prescribed several meds for acid, cholesterol binding and pain. Things seemed to be getting better except for body aches and the pain in right upper quadrant was back. I was then prescribed ibouprofen for pain. After a month I began passing blood and vomiting blood. I was hospitalized for observation. An endoscopy showed a previously bleeding stomach ulcer. I was prescribed meds for ulcer and released. At follow up, two days later, I was informed I have celiac disease and sphincter of oddi dysfunction. That was three weeks ago and I have been gluten free since. I am getting less energy every day, have horrible body aches, and pain in abdomen and right upper quadrant. I am only thirty years old and can’t hardly get out of the bed.
George, often, it gets worse before it gets better. One way to think of it is that your body is detoxing. Don’t give up your gf diet! It took me six months to feel better, but when the day came, I felt ten years younger. Wishing you strength.
I just had a long and very frustrating conversation with my mother. Mom told that she had talked to her doctor and had decided NOT to get tested for CD. She’s been seeing this Dr for many years and totally trusts this doctor. Her doctor told her that CD is NOT hereditary and just because her daughter had it didn’t mean anything. My mother asked me how it would benefit HER if she got tested. I know that when I was tested, my genetic markers showed that I had gotten it from only one of my parents.
Oh and never mind that my mother has ITP which is in remission. Mother also has severe hip and back pain that has been crippling. Mother has as long as I can remember been “gassy” and eats Tums like they’re candy, oh and a couple of years ago sent my sister and me 2 of the exact same Christmas card all within a few days of each other. She’s convinced now that I have some minor, mediocre condition and that I’m exaggerating all of the problems I’ve been having. She thinks I’m a freakin hypochondriac like most of the doctors that have examined me over the years.
Mother has shared those little pearls of wisdom her doc gave her to my siblings and to one of my kids. Now NO ONE wants to get tested. So not only did the medical community slap me down, now my family has done the same. I have no idea what to say to any of them now to convince them my mother’s doctor is a quack. What would you do or say in a situation like this?
I would say that you probably can’t change your Mom’s mind and just try to focus on your own health.
All the research I have done on celiac disease says that, because it’s systemic, it’s related to hundreds of other conditions: endometriosis, ovarian cysts, rheumatoid arthritis, neurological impairment, diabetes, thyroid issues, hashimotos, infertility, ataxia, Reynaud’s…just to name a few. I’m blown away–I thought this was common knowledge (in the medical community). Basically, when you are eating, but are suffering from malnutrition, almost anything can happen. Your body starts shutting down. I hate that so many of you have docs that are pompous idiots who don’t keep up on the medical literature. I often print studies out and bring them with me. Come to the celiac research center at Columbia in NYC! Amazing docs.
Gluten Free absolutely made my lower back pain disappear!!! I’m in my late twenties and suffered form lower back pain for the past 5 years. I got in shape, strengthened my core, did yoga, took pain killers, tried resveratrol, bought a tempur-bed, etc.! I went gluten free for sinus issues(which haven’t really improved) but I ended up having my back pain go away in just a matter of days and I couldn’t believe it. It’s been about 2 months and it hasn’t been all that difficult so I recommend stop reading about it and try it!! Also if I slip and eat a little bit of gluten now, I feel it almost instantly the next morning, my lower back feels like its ready to spasm at any moment. Not to mention pretty severe headaches also. Hope this gives someone a bit of ambition to give it a try, good luck everyone!
I know this post has been here for a year, but it really caught my eye because of some of the similarities.
I have to be honest, I haven’t been diagnosed, and I don’t think I ever want to go back on gluten, so I probably never will be.
When I was 3 months old, I had an immunization that leaves a scar on most people. On me, it reacted so badly that my Mom could see my bone and my scar is almost 3 inches in diameter, while my brother’s is maybe 1/2 inch.
When I was 5 I had 80% hearing loss which was resolved with tubes, I had my tonsils out, an allergic reaction to the antibiotics before the surgery, was diagnosed with eczemea, and chicken pox.
When I was 9 I was diagnosed with Hashimoto’s, which seriously, if you’re gonna have something, at least this one sounds badass! Things got a lot better for a while once that was under control, but I always had ‘lady issues’ with horrific cramps and yeast infections going into my early and mid teens.
In my early 20’s, I was diagnosed with IBS, which everyone on here knows is code for ‘we don’t know what’s wrong with you.’ With the other stress related things I had been diagnosed with, TMJ, stress headaches, etc., I didn’t really question it too much.
Mid to late 20’s I started getting hives everyday for about 3 months, which was right after my TMJ got to such epic levels I downed a bottle of 150 Advil in 3 weeks to try and dull the pain. Turns out that if you already have an autoimmune, allergies to Advil aren’t uncommon, though my allergist and endocrinologist are still fighting over the exact diagnosis. It’s sweet they care, but I prefer chocolate!
That’s when I started my allergy shots and pills. I’m not allergic to dogs or mold, which is MUCH easier to say than the ridiculous list I am allergic to!
This last 8 months, I have been diagnosed with asthma, which I’m told was the last in the trifecta of asthma, autoimmune, and eczema. The doctor was actually pretty reverent that my body had held out that long before giving in! My endocrinologist listened when I talked about my suspicions with gluten and gave the same stats I’ve seen on here. I asked about testing and she said if I wanted to she’d order the tests, but she didn’t think it would be worth the misery to go back on gluten or the money. I know there’s a lot of you out there that have had demon doctors, but know there are some good ones!
My family, husband, and in-laws have been AMAZING and I thought I knew how incredibly lucky I was to have them until I read some of the reactions some of you have had. I know I’m not diagnosed, but I hurt with you and I’m so sorry that you don’t have the support at home, but I’m happy you’ve found some here! When my Mom was diagnosed with diabetes, it was still very misunderstood, and I have faith that in time, this will get the same respect.
I’ve never felt well. I’ve had celiac symptoms, I now realize, going back to grade school. I was diagnosed in my mid 30s. I’ve had allergic reactions to all kinds of medications and foods and have asthma. I had chronic eczema until I (and not, you can be sure, a doctor) figured out it was related to food allergies. I had endometriosis and gyn issues that became so severe I wound up with an ovary twisted twice around itself and had to have an emergency full hysterectomy to save my life. Not long after the surgery, my adrenals failed and I was diagnosed with adrenal insufficiency. I also take medication for low thyroid function.
About 5 years prior to that, parts of my face starting going numb and I developed severe pain in my arms. I was told I was neurotic and had carpal tunnel (even though I didn’t have carpal tunnel symptoms). I was told that I’d done it to myself with the work I do. I had an MRI that didn’t show anything. A neurologist told me I was a neurotic artist with a “fantastical imagination of my bodily sensations.” I never got better, just worse. About 10 years later, an MRI finally showed something and I was diagnosed with multiple sclerosis by a different neurologist.
So, for me: multiple allergies, endometriosis etc, chronic pain, asthma, Addison’s (the adrenal non-function), Reynaud’s, thyroid, migraines, multiple sclerosis… and probably more–I’m still quite unwell–in addition to celiac.
I am writing about my husband. He was always small for his age and felt it was due to his Mother’s alcohol and smoking when pregnant. He was very hyper as a child and was diagnosed in his 60’s with ADHD.
You may not be aware of some of the things I will relate. However, I am an RN with much additional training and consider myself quite well versed in celiac and gluten free living. I have worked with several persons. I do not pretend to know all there is to know about it. It often becomes exacerbated following a gastrointestinal disease or episode. My husband contracted giardia in 1999 while we were traveling. He became very sick and after that everything began to fall apart for him. He probably had it in 2001 also but was not confirmed. His family doctor contracted celiac sprue in South America years ago so he suspected he had a problem with celiac. However, the blood test were not very definitive and he told him to just go off wheat. Well we all know that is not the only place we find gluten. By the time they did the blood tests he had been off of gluten for some time and therefore the results were negative. The tests are becoming more sophisticated today than they were. He had a stomach ache all the time. He complained to many doctors and they said well everyone gets a stomach ache now and then. His response was “not all the time though”.
It took 10 yrs. for a diagnosis!! He also is a diabetic. Now days many pediatric doctors who diagnose diabetes in their patients will automatically test for celiac as they often show up together. So he began the testing. Upper GI x-rats, esophageal x-rays, colonoscopy, kidney x-rays. Then a trip to the ER and a CT scan of abdomen and pelvis. Ultrasound and echo of abdomen and gall bladder. More IVP’s and X-rays of kidneys. He was beginning to develop other symptoms and fell on his head in the garage. That started the MRI’s. He was sent to a neurologist who was a specialist in gait problems. He would be out walking and began to run and not be able to stop until he fell or someone caught him. They did an EMG and said there was no problem. They also said that if he didn’t keep his eyes open when standing he would fall over. He had neuropathy (nerve damage) in his legs and feet and we felt that was from his diabetes since that is very common.
He continued to have abdominal pain. His B-12 level was low and he now takes B-12 shots every month and will for the rest of his life. this is a common problem since the small intestine can’t absorb it. Another ultrasound of his gall bladder and a CT scan of his pancreas to rule out cancer. Then an endoscopy. Another MRI of his brain He was exhibiting poor cognition. I couldn’t send him to the bedroom to bring me back an item as he would forget before he got there what he was after. He had poor short term memory. He was unable to take his own meds and insulin. He was diagnosed with sleep apnea and now has a BI-Pap machine. He then got a geriatric assessment and went to a memory clinic
Time for another ultrasound of his gall bladder and a hida scan of it.
His iron levels were found to be very low so he took iron shots till that raised back to normal. Then they decided it was time for another GI work-up to determine where the bleeding was coming from that lowered his iron levels. By now it is 2008 and no firm diagnosis. They did another endoscopy and biopsies – negative. Then another colonoscopy – negative. Finally they said they had nothing left to offer him but then recanted and said there was one more thing. He could have a virtual endoscopy. So he did. He swallowed a camera the size of a very large pill and more an apparatus around his stomach that took pictures every few seconds for 8 hours. In the end we had a diagnosis. Usually celiac is found on biopsy at the top of the small intestine where it connects to the stomach. Low and behold his was at the other end of the small intestine where it connects to the colon. Unfortunately there is at least 20 feet of small intestine that cannot be reached with a scope so they couldn’t find it, The inside of the small intestine is covered by small projections of villae. They absorb the nutrients out of your food. With celiac you have an autoimmune disease where the body attacks itself. It sees the villae as foreign and wants to rid it from the body. A normal inside of the intestine looks like a fuzzy warm blanket. His had had all of the villae at the bottom of the small intestine worn off and it looked like the inside of a PVC pipe. He had a classic case of celiac. By going gluten free, and I mean strictly gluten free, some of the villae have grown back. So often the person begins to feel better and so they think they can eat some gluten. Once diagnosed YOU CAN NEVER EAT GLUTEN AGAIN! You must accept that or you will find yourself sick again. Just not eating gluten does not solve the problem of cross contamination. If you don’t understand that then you must get information about that and stick to it. You can not be too safe! It is your life.
Now that he has been gluten free since 2008 he is a different person. His memory is as good as anyone’s. He did not drive for 5 or 6 yrs. when he was at his worst, He now drives. He couldn’t carry on a conversation with anyone as he couldn’t keep up with it. By the time he was ready to say something the other person was on to another topic. He is an avid reader. No more headaches. No neuropathy in his legs. His feeling has come back clear down to his feet. He manages all of his medications and insulin. His joints are better but sometimes they hurt, ie his fingers and knees. He does have some back pain at times. He is an engineer and his mind functions like that now. He can walk and run. Goes to the gym three times a week. I have my husband back. I had notified his children, when he was so bad, of his condition as I wasn’t sure he was going to make it. I became his care taker Well things are different now. He helps others to learn how to manage their celiac and to be their own advocate when dealing with doctors. The medical community is becoming more versed in celiac disease and how to care for persons with it. He has two grand children with celiac and I think he has several children with it also but they won’t get tested. Only one is having real problems but continues to come up negative.
If you continue to have trouble getting a diagnosis you might consider the camera. It is virtually foolproof. Don’t let anyone talk you into eating something you shouldn’t. This is a disease for life! You must be vigilant all the time. Gluten shows up in some toothpastes and vitamins, etc. Often times your pharmacist can help you but you can also call the manufacturer. There is also a site on the internet for drugs with gluten in them. There are products out there that are gluten free but really all the processed foods that are gluten free have very little nutritional value in them. You need to eat around the outside perimeter of the grocery store where the produce is, the milk, cheese, eggs, meat, fish and poultry and let the rest go. That is the safest thing to do. You must eat properly in order to heal that intestine so that you get the nutrients out of your food. Children are usually thin, small and malnourished no matter what they eat. He, like many others, can tell within 30 mins. if he has gotten into some gluten when we are away from home.
There were many other things that happened but taking 10 yrs. for a diagnosis is a long time. Keep plugging away at your eating and find a good gastroenterologist or a family doctor who understand the problem. If they don’t just leave and find another. I am uncomfortable with the n umber of people responding to this blog that see naturopaths. They can help you with some things but you need a good GI doctor to get the correct diagnosis. I have had people tell me that accupuncture will solve your problems. It won’t. This is an immune disease and it will affect other immune diseases ie. arthritis, rheumatoid arthritis, lupus, diabetes, hashimoto, and various symptoms. I am sure in time you will hear of more immune problems. Depression and bipolar are two other diseases that can be affected by it also.
Take care, all of you. Watch your family members for symptoms. Read as much as you can. Remember not everything on the internet is true. Anyone can put things out there. There are good sites to find information on. They say that 75% of Web searchers fail to determine the source of the medical information they’re finding. If they are selling something move on to another one. webmd.com is one of the biggest and best for comprehensive health info. pubmed.gov comes from the National Institutes of Health. everydayhealth.com and revolutionhealth.com are some of the most visited general medical sights. bewell.com is a trustworthy site. Also the National Women’s Health Information Center (4women.gov) is from the Dept of Health and Human Services Web site devoted to women. I suggest these as sites that are safe and give good information. There are many others but do beware. Your health is important. This is the only body you will get.
im not usually the sharing type, but reading this site( Special thanks to Mr.Dude) and what all of you write, makes me realise, its not all in my head and im not crazy, so here is my ‘short story’.
i was born in Eastern Europe, during the Soviet Unior times, being a hyperactive child, the doc advised my family to make sure im occupied, so by the age of 4, i was figure-skating, cross-country skiing, ballroom dancing etc. the issue was, i didnt like food in general… only vegetables and fruit. my story starts around when i was 8, warts on the back of my feet and between my toes, only choice of removal was some surgical scalpel burning without anaestesia intervention, where 4 men would hold each of my legs so i wouldnt move because of pain ( my parents were told outside), i couldnt walk properly or do any sports for at least 3 weeks. By 9, the docs discovered, some benign worms living in my intestines, and prescribed some meds that would kill them. by 10 i started having acne and that i have unusual thyroid functions. then one day my fever went up to 40C, acompagnied with diarrhea, vomiting and fainting. i was taken to a hospital, and got diagnosed with appendicitis, so while asleep with anaestasia before they cut me open, some other doc said, it was an intestine infection.
life abroad boarding school, no parents around, 13-17, great hair loss boldish style, even worse acne so Roaccutane and contraception and diagnosed with chronic anaemea. the fun life out of school, 18 and 20s several roaccutane and contraceptions later not solving my acne issues, diagnosed with androginity and possible infertility. 20s, enourmous back pain, insomnia, misscarriages, hospitalisations, fainting, vomiting everytime i would eat ( which obviously was taken for bulemia by some people), migranes, enourmous mood swings. diagnosis 27, but no follow up of special diet description, so i stopped eating what would would make me vomit, my majing my own tests. 28, ER, lower intollerable lower stomach pain right side and absolutely paralzed right side of the body from shoulder to thighs, elevated blood preassure and fever. after 48 hours in hospital and a bunch of tests, and no medicine or drink aloud, they released me with some urological infcetion ( since after about 10th doc checked, my intolerable stomach pain moved to my lower back. at 30 i was finally diagnosed in 3 different countries and overall confirmed by 5 docs with proper instructions and nutritition plans and apparently it seems i had CD for at least 15 years, but the hyperactiveness helped in many ways.
in one month, im going to be 1 year living GF and CD, and im glad that i no longer suffer so many of the things above, well except when i get glutened… but my acne is almost gone though (20 years later and with any useless meds). and this is officially the 1st time in my life im sharing my entire story, and God it feels good.
thank you all!
Thank you for sharing…that’s what we’re here for. My best to you and wishes for a healthy and happy life.
Wow….your site is very informative and really helpful to a recently diagnosed Celiac. I have a slightly different perspective. I didn’t realize I was Ill at all and on moving from Scotland to Canada recently I was given my first real annual medical where my blood tests showed severe iron deficient anemia.
The doctor was surprised that I thought I was perfectly healthy and couldn’t believe I hadn’t been asking for help. Can you believe I just thought bring so tired and Lethargic was simply because I work long hours, travel all the time and have a lot of work related stress? So with the help of iron supplements I started to feel better but my doctor didn’t stop there, she wanted to know why I was deficient….which was not something I wanted to pursue as I thought I was healthy, she practically had to scare me into getting an endoscopy and colonoscopy. When it turned out I was Celiac I was surprised. The shock though is learning more about the condition and I realize what I thought was perfectly normal was absolutely not. I thought I regularly suffered from food poisoning. I thought a bloated tummy was just the normal feeling after eating food. I have always had allergies to pollen, pets and dust but none of these I thought anything more about.
Imagine my further surprise to learn my 90 year old grandmother and my aunt (one from each side of my parental bloodline) were also celiac and no one in the family had thought to mention it and what it was. I had no idea it is genetic. It is like being celiac and the impact of the disease is the best kept secret! Not to mention people who suffer from the disease sometimes don’t take it seriously. At a birthday party last week my aunt ate the regular birthday cake and sees it as a ‘treat’ and almost like a vacation from being celiac when she needs it. So you can imagine how hard it is to get anyone to take it seriously when some celiacs don’t.
Now I have started getting bad itchy, red skin on my upper arms, round my neck, face and eyes and a patch on my back. I never had it before but it developed just before I had the tests for celiac as my doctor recommended I eat more gluten than I was used to so to ensure the test worked properly!
I now look around at my family with the same skin issues as me, with bloated tummy issues, thyroid disease, pernicious anemia, arthritis and goodness knows what else but they are back in Scotland and the doctors there are treating the symptoms and not trying to find the cause. I am doing my best to spread awareness and trying to make sure they all get tested as I am sure there are more of us in my large family.
Thank you for the great awareness you are generating with this site, it is up to each of us to help raise the awareness and the serious impacts of gluten to a celiac.
I’m newly diagnosed female at 27, and discovered your fantastic blog today. I just wanted to tell you that most of your youth is just like mine. I had warts on my fingers as a kid. Horrific acne well into my twenties on my face and back (disappeared when I stopped eating dairy and wheat as a suggestion by a lady at a salon). My acne would still flare up, and after my diagnosis it has completely disappeared. I also suffer from severe lower back pain! Or at least I used to, you made me realize I haven’t really noticed it since I went GF!! Note: 6 months ago I had terrible knee pain that no one could diagnose that also went away since I’ve been diagnosed.
Anyways I wanted to say I love your blog and I am absorbing as much information as possible to spread the knowledge!
I’ve heard from more and more people about the connection between gluten and acne. Real interesting.
Thanks for the kudos…
I went through the usual diarrhea stuff but not until I was 51. I had lots of sinus infections, cold sores, and sicknesses when I we under. So, when I was diagnosed brilliantly by my doctor, I felt yeh I’m a celiac and as long as I don’t eat wheat, I’ll be healthy . Well, that only lasted a few months, then I became tired, so tired, sick all the time, and sleeping 12 – 14 hours a day. My doctor, did I tell you he was brilliant, figured out that i had hypomagnesemia, not just low magnesium, but it had leached from my bones. So, celiacs out there, check your mg levels and have the doctor check them again. I’ve been home sick for 2 months and I’ll be home for 1 more month trying to get my mg levels up. Keep strong and find a good doctor.
Thank you for sharing your story with all of us. My story isn’t as shocking as some, but I will share regardless. I am 37 and was just diagnosed last October. My symptoms weren’t the classic and it was allergist who initially did the blood test. I went to her after an exhaustive search to discover why as an adult I was still suffering from acne, particularly body/back. I went to her in hopes to find some answers because I knew it was something i was eating that would make it flare. After some discussion she tested for Celiac and the test came back a low positive so she sent me to the gastroenterologist. He did an upper GI endoscopy and with those results and the blood test, concluded that I did have Celiac. Now that I know I have it, I can look back and wonder if all my life I have had symptoms and just didn’t recognize it.
Since my adult teeth came in I have had white spots on them, dentist said it was from medication my mom took while pregnant, my mom swears she never took any. After reading some studies I can say for certain that those spots are from the Celiac. I grew up with tonsil problems and had many cases of strep and tonsillitis, as well as ear infections. I also had anemia when I was younger. Since my early twenties I have been plagued with kidney stones, they are a horrid pain in my side (literally) and last year had to have one surgically lazered because it was the size of the tip of my pinky finger. All my life I have been plagued with frequent bloody noses, and for the last 10 or so I have had issues with itchy scalp and dandruff. Looking back I can connect so many things and ask myself, is it from that? I guess I don’t know, sometimes I feel I am grasping. Recently, the thought came to me that some of my social anxiety could be due to the Celiac as well, a few weeks ago I unknowingly had some Gluten and it sent me into a downward spiral and depression for about a week, I know now that it affects me mentally and emotionally. I wonder if going gluten free will make me feel even more at ease in social situations? After 6 months gluten free I am beginning to feel that way, but wonder it is just all in my head. So that is me me in a nutshell, I hope that my health (mental and physical) will continue to improve the longer I am gluten free. I can’t help but owe my allergist my life for discovering something that for 37 years, nobody else could.
Hey, Dude. Love the blog – come for the community, stay for the snarky delivery!
Diagnosed July of 2010 – so just about three years ago.
Let’s see… warts? Yup. Bad acne? Yup. Suspicion of juvenile rheumatoid arthritis that led to a week-long hospitalization? Been there – 9 years of age, following protracted hip pain so bad I couldn’t walk. Lifelong stomach aches and irritable bowel symptoms. Lifelong suspicion of thyroid malfunction that could never be firmly established. Lifelong allergies, sinus problems, strep throat (which ended when I got those slimy little suckers yanked at 19). Tinea versicolor (a scaly skin fungus that bleaches white in the sun) since I was 8. Severe gastroesophageal reflux. Oh… and did I mention infertility and other “woman” problems? To go along with hair that wouldn’t grow, nails that cracked and split without any effort… and as the piece de resistance… lifelong emotional lability and being branded a “sensitive child” before culminating in a “diagnosis” of bipolar II disorder at 26. Guess what happened when I completely cut out gluten and went to more of a whole foods diet? You got it… though the lability has now just become a low-level excuse for shooting my mouth off indiscriminately.
I wish I wasn’t with you on this, too, but I’m also in the “fellowship of the surviving” – diagnosed with estrogen-positive breast cancer on Halloween of this past year. But at least I can rock a bald head with panache.
Thanks for sharing Claudette and real sorry to hear about the cancer. Wishing you much health and happiness.
I was diagnosed in 2007 after a period of intense stress…my grandmother died, I split with my husband and lost my job in late 2006. It was the technician testing my blood who picked up my low calcium levels and advised my doctor to test for coeliac disease. Guess what? antibodies through the roof! Looking back, I see the signs all through my childhood; lethargy, chronic sinus issues, gut problems, no weight gain, irritability etc. I now have osteopenia in my arms and pelvis, along with gut problems and sinus which have recurred since christmas 2012.
On a night shift(I’m a nurse) I looked up complications of coeliac disease and scared the crap out of myself! I try to explain this to others (including my partner and his family) when I refuse their offering of the ‘Devils Work’ 🙂 and I get ‘it’s only one, you will be alright’….
Thanks Mr Dude for this site 🙂
Thanks for sharing. And you can call me Gluten 😉
My niece was diagnosed with Celiac Disease at a quite young age. She has severe allergies, not only to gluten, but also milk, fish, many pollens, cats, dogs and numerous other items.
She developed back pains in her early teens as well as arthritis. She also has severe asthma, though she is still fairly active physically. The severity of several of her allergies has lessened somewhat, around the time she turned 18.
One item that stuck with me in my conversations with my brother is that her allergy specialist said that children with severe allergies, as well as CD, tend to have specific facial features as well as higher intellects.
Thanks for sharing your story. It would be interesting to see a compilation of the data you gather from this.
Look into cyrex labs..,there are descriptions of their test results. There is a test that looks at which tissues in the body are showing autoimmune attach due to a cross-reactivity with gluten components. There are various gluten protein and individuals react to one or more of these proteins. I wonder if the blood clots are related to a platelet glycoprotein antibody. One of cyrex’s tests looks for this antibody. Not sure shat the significance is though, you would have to find out from a holistic or integrative med practitioner if there is a treatment or what to do with the information. I also had wart issues as a kid. I had an extremely stubborn wart on my elbow that grew deep “roots.” Eventually after multiple freezing, chemical and burning treatments, a general surgeon had to cut it out. Also I developed pustular papular rosacea at the height if my glutenation when I was very busy training for my career working 40 to 100 hours per week, eating Taco Bell, frozen pizza and loving beer. I was diagnosed with celiac’s within 3 years. I also had a horrible pilonadial cyst on my tailbone during college. We attempted to mange it with low saturated fat intake, flaxseed in the diet, evening primrose supplements, acne type topical a like benzoyl peroxide which bleached all of my underwear and several pairs of pants. But it drained cyst fluid constantly and eventually I had to have a general surgeon cut it out under general anesthesia
Also had a higher grade cervical dysphasia around 2008 in my mid twenties, requiring a LEEP procedure under general anesthesia (which I still feel the general was over kill– but the anesthesia doc was quite sure it was necessary). I had horrible recurrent sinusitis and allergies as a school kid and intro my late 20s. Disappeared since becoming gluten free but not until I had suffered nasty complications including two episodes of c.diff with ulcers throughout ascending descending and transverse colon. Was treated with Asacol due to a possible inflammatory bowel (crohns /UC). Functional scoliosis as well and I read someone else mention they had scoliosis but were not sure of the link… The cecum is on the right and constant dysfunction due to I diagnosed celiac’s can irritate the nerves of the cecum in my case and this sent visceral feedback to the nerve root leading to somatic dysfunction I.e. muscle spasms which affected my posture And lead to an altered muscle balance and a curved back with repeated muscle strains. This is now almost fully resolved after my first year attempting gluten free and having more than a handful of accidental exposures. Most of all I want my brain fog and ADHD to go away. Just was retested for environmental allergies and all 5+ are gone only remaining is cats. I have had Allergy shots off and on for 23 years and not until going gluten free and as grain/sugar/casein/food allergy/ phenol free as possible, have my environmental Allergies disappeared.
I actually had severe acne and asthma while growing up, but still remained healthy most of my life. Currently 3 weeks gluten free and I can see my acne (not as bad any more) clearing up (people don’t see it, it just kind of looks like a rash all over my face, barely visible, but now I can actually see it fade away very slowly), I always knew it was food related, but I never thought it could be gluten related until now.
While researching the past few days more on celiac disease I found this video http://www.youtube.com/watch?v=DvK9KZy1xaw
which I think is really interesting in how he mentions that it attacks different parts of the body, so it manifests differently on people – just sharing because your blog reminded me of it. Not much of a fan of the host of the show, but I found the doc to be informative. Will definitely abuse my library privileges and find time to read up some proper medical research on celiac disease hopefully.
My twin sister was diagnosed with Celiac about 5 1/2 years ago. When she was diagnosed she had just given birth to her first baby and our mother had passed away all within a few weeks. The stress of these events are probably what made the Celiac present itself, I didn’t give much thought to myself having it. I thought it was mostly a stomach thing, I mean I had gallstones and an ulcer but that wasn’t part of Celiac was it? HA! Then I started to read. I had spinal stenosis and arthritis in my back, hips and pelvis. The MRI I ever had in my 20’s the guy asked if I fell off a horse. WHAT?! He said this kind of damage we usually see in people who have fallen. I always had depression and anxiety to the severe point where I used alcohol to self medicate. I always had sinus problems. Three years ago everything came to a head I got sober went to a good doctor who diagnosed me as Bipolar and another Doctor who tested me and found out I was positive for Celiac. Celiac is now being linked to Bipolar Disorder the studies are in early stages but scans of my brain show exactly what they describe in Celiac patients with Bipolar Disorder. I also have dermatitis herpetiformis which I have not been able to get treated because it’s impossible to get into a Dermatologist! I have been Gluten free for 7 months I know it takes time but I still feel horrible between the Bipolar meds and the Celiac I have lost 65 pounds and it’s hard to even lift my arms up. By the way, my sister thought she was having brain fogs she wasn’t she was having partial complex seizures possibly related to the Celiac. I was diagnosed with Essential Tremors. The psychiatrist disagreed and sent me to another neurologist because my hands shake and some days I stutter this Doctor without looking at the MRI diagnoses me with Conversion Disorder starts clapping his hands and asking me if he can videotape me for the other Doctors to study the whole time he’s grinning. I’m crying and stuttering and trying to tell him I’m not a freak. Well some Celiac people suffer from speech problems and tremors. There is so much not known about Celiac and people don’t understand, most Doctors diagnose you and then just send you off to a Nutritionist. It is so much more complicated than that. Sorry for rambling, I could have been diagnosed as Bipolar in 2008 if only the doctors had known. But then again I had symptoms of Bipolar starting in my teens and it took until I was 37 for someone to catch on. The ball was dropped so many times with so much needless suffering.
I understand u completely Dana. I noticed I started having neruro problems when I was 16, which has been linked to celiac. Those were the only symptoms I had until abdominal surgery in 04 when I was 22. After that I started developing mental illness one on top of the other. I was dx with a personality disorder, major depression, bipolar, psychosis, schizoid affect, anxiety, and eventually the sudden onset of rage overnight. I have had severe insomnia since 16. Which just happens to be the yr I had my 1st car wreck. I got real sick from gallstones starting in nov 12 and lost almost 15 lbs by the time it was dx in jan 13 and operated on at the end of jan. After that I started having other major probs like lactose intolerance and not regaining lbs but losing more. I have had no relief yet bc I think I have had celiac too long and there is just more wrong with me. I have chronic migraines, joint pain, tingling/numbness and pain in arms/legs, upper middle lower back pain and worsening neuro and cognitive probs. Anyone with a similar story on what can be done I’d love to hear what u did. Thanx.
All these comments are heartbreaking..
The ball was dropped so many times with so much needless suffering.- very well Dana Cook . I think most of us can ay the same thing. Is it any wonder why there is a growing distrust in the Medical community?
Health issues I have dealt with- my family history and what our kids have dealt with. I never connected the dots that most of them could be linked to Celiacs until today. Gosh where to start. will make my list and come back
Hi, I have been reading the previous threads and I was wondering if anyone knew of a detonate link between a burst appedix (and complications) and lactose and gluten intolerance. I had my appendix removed nearly 2 years ago and have never been right since. At the 12 month mark I became severely intolerant to lactose and so went on a lactose free diet. At the 2year mark I have now developed an intolerance to gluten…. As welk as this I have other health issues that doctors believe are linked to the op… Any advice? Thanks x
So interesting reading these stories, I was diagnosed with celiac disease 9 years ago (at age 18) but here the story goes, l had severe headaches/migraines and acne from about age 10 also bouts of tendinitis I was tested for juvenile rheumatoid arthritis even though my rheumatoid factor is high my other blood work didn’t support diagnosis. Age 14 bowel problems began was rushing to the toilet up to 40 times a day/night and losing lots of bloods eventually diagnosed with ulcerative colitis the disease was relentless during this time I had an endoscope and they stumbled on celiac diagnosis was also suffering from lots of neuro symptoms numbness/tingling brain fog etc prob as a result of my b12 being extremely low. At age 19 I had my colon removed and a temporary ileostomy as a cure for the ulcerative colitis, sadly even after reversal symptoms didn’t improve by now I was getting constant mouth ulcers,skin rashes,arthritis,daily headaches,liver involvement,neuro probs,still awful bowel issues now ulcers in small bowel, spent years with no one being able find out what the prob was blaming it on me eating gluten having blood tests that would always come back clear of antibodies to prove that I was on a strict gluten free diet. Found a great surgeon who thought I had crohns went back to a permanent ileostomy last year at same time saw a rheumatologist who finally found the answer that I fact I had Behçet’s disease (very rare in western countries) and this had been the cause of my inflammatory Bowel not UC/Crohns, plus there seem to be strong links between Behcets and celiac in some studies.
Fascinating reading Daughter 50 diagnosed after years of illness, her son 14 and myself also. Daughter No 2 and son will follow. What was diagnosed as Ankylosing Spondylitis with no treatment has become Celiacs and we are cheering because we can manage this. My daughters Diabetes has returned to normal readings within 3 days of being gluten free, from levels of every day at least 14 and highs of 22 (normal is 5). Nothing helped. She is overweight and accused by doctors of overeating. A smart diabetic Doc. When we were at our wits end suggested Celiacs may be the problem which proved to be true. She had episodes of very, very high liver readings and told she was an alcoholic. At this stage I stormed the hospital as she doesn’t drink or smoke. I have read your comments from beginning to end and find it frightening that something with such a simple cure is killing people. I felt the way my daughter was going she may noy have lived another 12 months and she rears her 3 grandchildren because her daughter has bi-polar ( we now think Celiacs) but feel she is too far gone to stick to the treatment. Thank you everyone for contributing.
Regards Averil ( a now happy Mum).
An addition to my above blog. Both my daughters have some or most of above disorders, IBS, rheumatoid, psoriasis, Asthma and on the list goes My eldest daughter 4 days ago had 2 nd shoulder op. (spurs on shoulders. Celiacs !!!!) doc. Asked nurse how sugar levels were and was told they were fine ever since she had been in there. His comments were ” that will all change when she gets home. Michie tried to explain about Celiacs diagnoses and was brushed off
(because she is overweight, but now losing weight). Time I stormed the hospital again. I will update our family progress further down the line.
This is a great point to bring up, Gluten Dude. Since my diagnosis of Celiac disease, 2 years ago, I have been diagnosed with a number of health problems. Ulcerative colitis, severe anemia, I tested inconclusive to Crohn’s. And I have degenerative disease in the L4, L5 region of my lower back.
I plan on getting retested for Crohn’s very soon. The degenerative disease, I found out about this past week. I’ve been dealing with severe (and sometimes debilitating) lower back pain since February.
I’m not sure if all of these are connected, but, I wouldn’t be surprised if they were.
Hi Gluten Dude! I’m so thankful I found your blog a couple months ago. Not a lot of GF blogs I’ve come across are as open and honest as yours about celiac, and I truly appreciate you taking the time to raise celiac awareness and advocating for those of us who are in the same boat. That being said, I found it very interesting that you mentioned warts as your first health issue. When I was in high school, my right elbow was COVERED in warts. Gross. I was so self-contious about them that I never wore short-sleeved shirts, even in the summer. And now (I’m 32) I have a lovely collection on the outside of my right calf and knee. Thankfully, I don’t care anymore what people think because not wearing shorts in the summer in VA is NOT an option. I wasn’t diagnosed with celiac until after the the birth of my second child at age 28 and I remember being so excited to finally get an answer to all my problems…joint pain, TMJ, nerve damage, not to mention being on intimate terms with my bathroom. My husband and I have three children now, and we’ve switched our diets to organic and gmo-free (and in addition, my husband has voluntarily switched to gluten-free to be more supportive of me), to protect our kids. And yes, I understand there is no concrete proof that this will help but we feel that if we don’t do everything within our power to protect our kids, we are not doing our jobs properly. None have exhibited any symptoms of celiac yet, but if they do, you know I’m gonna be all over that! Your blog has helped raise MY awareness of the lack of information on celiac in the medical community (unlike many, I don’t have a horror story to tell. Thank God I had a doctor who understood my symptoms enough to piece it together and I lived in San Diego at the time where there was a celiac specialist at UCSD). And speaking of the medial community, I just recently (as in a few days ago) spoke with my brother-in-law, who is in his third year of med school, and asked him specifics on how much celiac was discussed in his GI class. He said it’s mentioned briefly but that there is no discussion of how vastly it can manifest in different people. His answer was not-surprising, shocking, and disappointing all at the same time. We can only hope and pray that this will eventually change but until then, like you always say, we must be our own advocate for our health. Thanks for listening and keep up the good work. I always look forward to your posts, especially your gluten-free food reviews!
I know I carry one of the genes, but I don’t have an “official” diagnosis of CD. I’m not really sure when mine was triggered, but it may have been during my 4th pregnancy. That’s when I started feeling like my body was falling apart.
I’ve been diagnosed with depression, rosacea, restless leg syndrome, and otosclerosis, which is an autoimmune disease involving the bones in your ears. I had to have surgery to restore my hearing. I also have arthritis, possible IBS (of course!), and ADHD. My oldest daughter thought I was dying because I had absolutely no energy and could barely get out of bed to care for my family.
Before I went gluten free I was on half a dozen prescription medications to try to control all my symptoms. Since getting rid of the gluten (and my husband, but that’s another story!) I’ve lost weight, feel great, and look about 10 years younger.
I know it sounds crazy, but there it is.
Great post. I love the ones where you can just share and see others are in the same boat as you.
Everyday I wake up it’s crap shoot how I’m going to feel. Some days I’m almost normal. And others I lack any motivation whatsoever and am sleepy and just worn down and just waste the day. I’m only 37 but feel like I’m 60 plus most days. I feel fortunate that it was something I can live with but sad that it wasn’t diagnosed properly before it caused the other autoimmune diseases I now also have from being sick for so long. Been a very frustrating thing. I try to stay as positive as possible. And educate myself and try to help others. Knowledge is power.
I was not diagnosed with Celiac, but two of my children have it, and I am completely intolerant. I have had many illnesses over the years…stomach problems were horrible with weight loss, bloating, and diarrhea that kept me home…finally I was diagnosed with the “all-encompassing” IBS. Nine years ago I nearly died from a sudden bowel perforation. I had a colostomy for 6 months, and was put back together. I made the decision to go totally gluten free 2-1/2 years ago, and it was like night and day…my son looked at me one day and remarked it looked like I had lost 50 pounds, because I was no longer bloated. My stomach problems are so much better, except for the occasional accidental glutening. Besides my son and daughter…my sister, several cousins, an aunt, and several nieces all have celiac disease. I also have lupus and Hashimoto’s and all the fun that goes along with those. I think so many of the diseases are inter-connected. Thanks for what you do to bring awareness and sharing…
This is very interesting as recently I have been wondering if things that have gone on in the past may be because of my disease. Years ago I used to suffer from severe pains in my feet and I noticed recently that they seem to have subsided around the time I was diagnosed with coeliac after being on the diet! My mum mentioned recently about my dad who sadly has now passed away (not due to coeliac) that he had suffered from what she believed was gout and had severe pains in his feet which too subsided when he started the diet. She didn’t connect the two but it made me realise that it must have been the coeliac causing this.
I and my dad have suffered with severe back pains for years, for me, I always put it down to my periods and it certainly flairs up mostly at this time but I have realised that recently this pain hasn’t been nearly as bad as it used to be.
I also get very sore and rough hands and I gather with coeliac disease you can get dermatitis. My face also has a permanent redness to the cheeks and I once read a story of a woman that could predict that a person had coeliac disease because of seeing this in them. Not sure if this is a genuine sign but I’ve always been very conscious of my cheeks so would be interested to know if anyone else has this affliction? For me, I’ve tried all kinds of make up to lessen this but nothing seems to work. People think I’m wearing make up they are so red and I wouldn’t mind but it’s badly applied make up if that’s the case!
Other than these symptons I haven’t had anything really serious to complain about, I had an appendicitis years ago but I don’t think that is related.
I am a recovered bulimic that was misdiagnosed 10 years ago as having acid reflux as a result. I move to NY from TN and saw a surgeon since PIP never worked for me. I went in for pre-op and they found that I have no signs of acid reflux. I saw a new gastro and found out I have a severe gluten allergy. I found that there are a lot of studies researching the connection between bulimia and gluten allergies and celiac.
I’ll try to keep this brief but no guarantee. I have had a relatively healthily life when I was younger. The only thing is that I had bronchitis every year from 10-12 several times a yr even in summer. I developed mental illnesses galore after getting injured at work and had to stay home. After 5 years I became stable but I’ve had 3 surgeries since 04. My most recent 4 surgery was this jan. for gallbladder disease. When I first started getting symptoms of that in nov. ’12 I started dropping weight. I lost 18 lbs until the surgery in jan. ’13. After that I couldn’t gain any weight and actually dropped another 5 and then stayed there. I went to a GI who put me on a gfd. I was on it for 12 weeks and I didn’t gain a single lb. and since then I keep adding more physical probs. i started with a chronic headache that went to a chronic migraine that I’ve had since may. Then my entire spine started hurting and now every joint except my hips and shoulders. I can barely walk and can’t stand for longer than 3 min. My brain has the ability of a 2 yr old by night that starts going bad after 4 hours awake and my vision is blurry. Don’t know what to do since GI not sure I have celiac any more. I’m on an 8 wk gluten challenge right now and have appts with a rheumo and neuro coming up. I hope they can find a diagnosis.
First let me say – I LOVE THE GLUTEN DUDE!!! Even if I am too “mature” for you. I was finally diagnosed at 58 years young.
Amazing how you can think that your health wasn’t that affected by CD until you read these posts and start putting things together. One symptom I did not read is – passing out for no apparent reason. Started when I was a toddler. Pediatrician could not find a reason for it. Told my mom I was probably having a tantrum. Episodes gradually stopped but had frequent bronchitis/pneumonnia. Fast forward to 7 yrs old and an emergency appendectomy. Then the eczema starts. Teen years bring severe back acne and severe menstrual cramps. Not that unusual. Also had a terrible allergic reaction to Tetraclycline. Cannot get enough sleep!!!! A few years later, a mother of three and the passing out comes back along with acid reflux. (Stll can’t get enough sleep – DX – anemia) Have to have a complete hysterectomy and start having severe backaches. Diagnosed with IBS. Start to have joint problems. Have had multiple surgeries related to bone issues – shoulder, thumb joint, three foot surgeries and two back surgeries. WTF!!! Surprise – I have osteoperosis. So how did I finally find out I have CD? My nephew’s two daughters were diagnosed. Then my nephew was diagnosed. The doctor told my nephew to let his parents know. My sister (mother/grandmother) was diagnosed with Carcinoid Cancer of the small intestines six years ago. POSSIBLE CONNECTION????? Who knows! I told my primary care and he just said the chances were too slim to even worry about it. Stupid me – I listened to him and suffered for an additional two years. After eight months of constant DH and weight loss, I went to a GI specialist. She immediately ordered all the tests and was visibly upset that I had not been referred to her sooner. Still not 100% but confident I am headed in the right direction. I’m no longer searching for the nearest bathroom when I leave my house and can’t remember the last time I passed out. Thank you for letting me share.
Wow, I have just read every blog on this page, after seeing about this post on Facebook!. Thanks GD for your page !!!
Warts, acne, growing pains, stomach pains, constipation., urinary tract infections for years, thrush constantly..the list goes on.
A naturopath was the first person who suggested gluten intolerance, then my Dr. ordered tests after 12 months of losing weight for no reason. I was already on a gluten free diet, I thought, but I realise now that I obviously was not taking it seriously, as my bloods showed that I had CD.
Luckily she explained that gluten was a poison in my body, not just that I had an intolerance to it. I have been gluten free for a few years now, but I am finding that I am getting more and more sensitive, and getting glutened, because I have been thinking, oh, a little bit in a sauce won’t matter, I can get away with that !!! No I can’t.
But I now realise I have to be so vigilant, as the brain fog, mood swings, fatigue, etc etc is just the outward symptom of being poisoned, let alone what is happening inside.
I note that a lot of people complain of joint pain, lower back pain.
I have recently been diagnosed with having BENIGN HYPERMOBILITY SYNDROME ) ALSO KNOWN AS
ELDERS DANLOS SYNDROME (Hypermobility).
Might be worth people looking up this site and seeing if they have these symptoms, as I have heard that CD and this condition are related…another genetic autoimmune disease affecting the collagen in the body.
Like CD, it took me many, many years to have this condition diagnosed ! Often put down to just being a whinger, lazy, growing pains….same story – what training do GPs get ???
Thanks again for a great site…
Have been plagued by back pain for years so will have to look up the website you mention, thanks!
As for doctors, from my experience based in the UK they are clueless! I had to explain to my Doctor that although a blood test showed that I no longer had CD it doesn’t quite work like that, he believed I was now cured!! I had to tell him that I was only showing I didn’t have it as I had been careful with my diet, but I have noticed that I am much more sensitive to gluten than I used to be, or maybe it’s just that I am now more aware of the signs that before I might not have registered?
Unbelievable… or, rather, sadly believable. So frustrating. Here in California I had a neurologist tell me that I didn’t really have celiac, because she’d ordered a blood test and it had come back normal. I explained how it worked and told her to Google it. She got argumentative and told me I should really think about it–she was sure I didn’t really have celiac disease because the blood test didn’t show antibodies! I’d been gluten-free for 12 years.
Sad to hear that the doctors are equally uneducated about the disease over in America! Trying to get people to understand how serious the illness is, is hard enough but having to explain things to doctors is shocking!
My son has just been diagnosed with CD. He’s 20. His history is as follows. He had chronic ear infections as an infant and the pediatrician prescribed antibiotics daily for three months. At age 7 he was diagnosed with JRA, the symptoms lasted for 18 months. He then went into remission. Now CD.
I wonder if the antibiotics set all this in motion. What is your opinion?
I don’t remember even major problems when I was growing up other than constant fatigue. I took naps all the time. I was diagnosed with Celiac about 5 years ago. I felt like death before I was diagnosed. I went to my GP over and over trying to figure out why I felt so bad ALL the time. I also was getting rashes that no medication would control. Finally after talking to a family member about her celiac disease I knew what it was. Went to GP and demanded that she test me for celiac and it came back positive went to the GI and a positive biopsy. Went on a gluten free diet felt great and rashes were gone. Unfortunately, things are going down hill for me again. Not sure why. I am exhausted all the time and have muscle weakness and once again the dr. is telling me knowing is wrong, even prescribed me an antidepressant. I have even asked for vitamin and hormones to be checked and my dr. said I am sure there isn’t anything wrong you are just going through a rough time, while writing the antidepressant up. I wanted to scream why?? Listen to me!!! I have set myself up with an internal medicine dr. that will hopefully listen to me. Has anyone else had the problem of constant fatigue a few years after leaving gluten free?
This post is a bit old, but it really intrigued me. Mostly because I just had to fill out a form for university football that asked about allergies and medical issues, and I had to write in the margins to fit everything in. Here’s a quick snapshot at some of my illnesses, old and current.
As a child, I had seizures. I was diagnosed with epilepsy and put on medicine that, according to my mother, made me incredibly hyperactive for a few hours then a complete zombie. She said I wasn’t the same, and she didn’t know where her child went. She took me off the medicine and monitored me closely. I no longer have the epilepsy diagnosis. I also had chronic ear infections and was incredibly prone to bronchitis and sinus infections.
I was finally diagnosed with reactive hypoglycemia in junior high (after many years of scary situations), which meant I had to always plan ahead because if my blood sugar dropped too low, very awful things would happen. I still have this one.
Also in junior high, I used to get such sharp, stabbing pains throughout my chest, abdomen, and back that I would find myself crying on the floor quite frequently. My friends just thought I was being dramatic. This still happens, but it wasn’t quite as bad for a few years, so I pretended it didn’t exist. This is also around the time severe acne started for me that would not go away. It did not matter how many medicines I took or products I used. I still have this problem, but my face, neck, chest, and back are finally starting to heal since celiac diagnosis.
Other things that I have currently that started long ago: intrinsic asthma and exercise-induced bronchospasm, severe “seasonal” allergies that can cause anaphylaxis, insomnia, depression, anxiety, arthritis, and a bunch of things I know I’m forgetting because, damn, this is difficult to list everything. I’m also prone to infection, and I had a doctor just call me “sensitive” because he had no real medical term for some of the things he’s seen with me.
Before I was diagnosed with celiac, I was told I had IBS, a stomach ulcer, lactose-intolerance, and GERD. I was told I might have an allergy to the sun. I was also diagnosed with celiac three times, and each time was told later that I didn’t really have it. It also took forever to get a diagnosis because I was exposed to black mold my freshman year of college, got mono twice, and had 5 different sets of MRSA infections. I also had constant canker sores, with around 15-20 in my mouth at once.
I gained a collective 40 pounds, stopped being able to go to the bathroom (two weeks between bowel movements), and found myself sleeping all day, every day. I discovered severe allergies to many medications: including various antibiotics, steroids, and Benadryl. I also had some misfiring nerve cells in a very sensitive area that had to be removed, and had infection after infection that everyone assumed were STDs. Because I’m a college student; obviously I’m a whore. Let’s also check if she’s pregnant.
In short, no one really knew what to do with me, so they dismissed me as having too many symptoms and didn’t help me at all. Then I found one good doctor that referred me to other good doctors, and now through the combined efforts of an allergist, gastroenterologist, gynecologist, and psychologist, I’m starting to heal.
It’s a long journey for many of us and I’m sorry you had to go through it all. Wishing you all the healing in the world.
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Hi I didn’t know much about my body last time I was on here but I recently found out some new things. I finally learned that I don’t have cd thru a biopsy. My GI thinks now that I’m gluten sensitive (gs). Like I said before I was on a gfd for 12 wks at 113 starting and 113 ending. I then went on a gluten challenge starting 7/13. I went down to 108 by 8/28. That’s only 5 lbs. but since that 5 lbs in 6 wks I have gone from 108 to 100 yesterday in only 4 wks. Not good to lose 8 lbs that fast. I have found out in the last few weeks from my rheumatologist that I have RA and he is referring me to an endocrinologist for my abnormal thyroid test that he thinks is also autoimmune bc I have antibodies in it. If that’s the case maybe I have Graves’ disease which is the hyperthyroid condition. Maybe that’s why I haven’t been at a healthy bmi all this yr and losing weight since last Nov. Any thoughts? I don’t have a damn clue!
My Celiac diagnosis was three years ago but I continued to suffer with symptoms such as fatigue, back pain, brain fog, memory issues, tingling and numbness in my feet and hands, nausea, and constipation. I thought I was constantly battling cross contamination. Yet our whole house is gluten free – including our dog food! In three years I ate outside of my home about 10 times for fear of poisoning myself. PCP and GI doctor were not sure why my “celiac” symptoms continued.
During the last year the symptoms got worse Back pain turned into all over pain in my joints, deep in my bones. The fatigue was mind numbing and the brain fog got so bad I struggled to hold a conversation.
Three weeks ago I was told I have hyperparathyroidism caused by a tumor on my parathyroid. Usually high parathryoid hormone presents with high calcium in blood tests. Not in my case. Calcium always normal (high end of normal but still normal blood test). Initial research shows that mal-absorption of calcium my whole life probably caused it. 4 months before my CD diagnosis I shattered my tibia bone. It was not caught by x-ray. An MRI finally showed it. The image looked like like a spiderweb windshield shattering. Stress fractures are common symptoms of parathyroid issues.
Right now there is limited data linking parathyroid tumors with Celiac disease but I predict in 5-10 years that will change.
I know this post of yours is about a year old, but I wanted to share my story. If you continue to suffer from your “celiac” symptoms. Be assertive. Ask questions. Push for tests that are not part of regular protocol. I got my family doctor to pay attention when blood work from GI doc showed very mildly elevated alchaline phosphatase. GI doc was not worried. He said have it checked by family doc in 3 months. I felt lousy and jumped on it. My family doc agreed to do more tests to investigate. She found elevated parathyroid. I have surgery next month to remove tumor. I am so hopeful I will find good health very soon!
Thanks for sharing your story…
Thank you so much for your website; I just cannot believe that my experience has been shared by so many – and I’m only just confirming now (at 46) that I have Celiac Disease! Grief! What a wonderful relief to finally know why I have such excruciating back pain (out of nowhere), and all the rest that goes along with it! Thank you, thank you, thank you! I’m so thankful the Lord showed me your site! I am not alone in this dietary journey! 🙂
Best to you Dude,
You indeed are not alone. Glad you found us. Wonderful community here.
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All of my life I have been healthy and could eat anything I wanted. About 4 years ago when I went off of my low carb diet and started to eat whole grains again, I noticed that my guts would be in knots and I was so constipated that I was taking up to 12 laxative tablets just to have a bowel movement. I made a connection that eating bread and cereal was making me feel not so hot. While on Workers Comp, I noticed that a age spot on my arm turned black overnight. I got an appointment with my doctor and thankfully it was just a bruise. He ordered blood work and found mild anemia, but my ferritin levels were very low. He sent me to a Gastroenterologist who took a history. He asked me if there was a family history of Celiac disease or Crohn’s disease. I said no of course because no one in my family had it. He set me up for an endoscopy and colonoscopy. My colon was normal, but he said my biopsy was “flat strongly suggesting Celiac disease” He also used words like inflammation, crypts, and high epithelial cells in the tissues. I was shocked to say the least—why me?! Of course he referred me to a dietician and said a strict gluten free diet for the rest of my life. About 4 months later, I began to have severe diarrhea with a weight loss of about 25 pounds. He set me up with another colonoscopy and found out I have Microscopic Colitis. About 2 months ago I went in for blood work. My antibody levels are normal, but my TSH levels spiked very high and my ferritin is low again. So my joints are hurting again and I am tired all the time. I have a strong suspicion that Celiac comes from my father’s side of the family as his aunt had Systemic Lupus, my oldest daughter had Guillian Barre in 02. There is adenocarcinoma on that side of the family—my father died in 92 of lung cancer and he was a non-smoker. The women on my mother’s side have never had cancer of any kind and lived well into their nineties. It is interesting that I did not begin to have any symptoms until I went through menopause. In fact I have had 5 children so I know that pregnancy did not activate it. It is a mystery to me since I am the only one in my whole family with Celiac disease. Mind you I would not wish it on anyone, but my adult son lives with me and stays on the diet also and makes lots of gluten free goodies that are healthy. He notices that when he eats gluten foods that he gets bloated and gains weight. I hope its just an intolerance. What I do know is I keep moving forward and enjoy lifel
I’ll share my story as well!
I was born 2 months premature.
At 13 I had a bout with allergy induced asthma that landed me in the hospital. From then on I’ve been very allergic to grass, cats, and weeds.
Became lactose intolerant while in highschool. At the same time I had other ‘ tummy troubles’ that I attributed to milk being in things or my horrible diet of poor college kid foods.
Had a couple of instances of food poisoning in my 20s.
Then the fun started. I was tired ALL the time. Had alternating constipation/diarrhea and sometimes bloody stools (this sent me to the dr) . Was severely anemic. Then I got C diff.
Then I found an awesome gi who tested me for literally everything. Blood tests, tests, endoscopy and colonoscopy. Diagnosis.. Celiac
Fructose malabsorption is another condition that people I know have been afflicted with. Many times this was not a huge issue before people went gluten free but became much more of one within the first year of excluding wheat, rye, barley and oats.
Wow GD, I can’t believe you’ve been through so much!! One would never say… You so optimistic and never give up. It really is inspiring :). My hat goes off to you…
I’ve never had that many serious health issues growing up but from around 10 years old, I used to get gastric flu up to four times a year or more. It was always severe vomiting and stomach pains, fever, etc. Even during my teen years the GP kept saying that it was stress from exams and I’m too anxious and nervous all the time. The best one – “You worry too much!” (I actually got told that a week ago because I’m having health problems again.) The same issues kept happening at university and eventually i just accepted it as stress.
I think my trigger point was when I donated blood when I was 19 (I was also 1 kg under the required weight and they still allowed me to donate). I ended up passing out and hitting my head. Every since that day my stomach issues just got incrementally worse. I even lost 10 kgs in a month after that incident… Then I started working and I started losing more weight (apparently because of “stress”) until I went to a GI and got diagnosed with celiac disease at the age of 24. In the first few months of recovery I was okay (still fighting off diarrhea and hemorrhoids) but now after a year I keeping getting the flu, viral and bacteria infections, fatigue, nausea and now high blood pressure. And there’s something else happening because I’m generally light-headed all day long, I get tired really quickly and feel like I’m going to pass out, etc. I feel like these issues were hidden by CD :(.
But anyway, what else can you do except rant and then carry on fighting :).I won’t let CD get in the way of me living!!
Here’s my list
Cervical Cancer…now cancer free
Endometriosis – full and complete hysterectomy at 28 years old.
Vision impairment – double vision
Sensory and Motor Control issues
Migraines so bad I almost jumped off a bridge
Several surgeries for bowel Obstructions not to mention the ones that resolved themselves.
oh and multiple food allergies
I’m 14 and I found blood in my stool and celiac runs in my family my dad has it and my sister has it they said I had 50 50 chance if having it could it be related please tell me I’m frankly quite scared
Very high chances that they are related? Pleas tell your parents, if you haven’t and see a Gastro!
Such interesting stories! I am a person who has had GI trouble my entire life. Chronic and horrific constipation. According to my mother….pretty much since birth. Until teen years that was the main trouble. Would go 10-14 days with no movement at all from my intestines. Chronic laxative use. Had multiple impactions. Was diagnosed with IBS. As a teen I began having “anorexic behaviors” but became bulimic in college. Always felt bloated and maybe that was one of the reasons why an eating disorder developed. I studied nutrition in college; became a registered dietitian (in the 80s at the height of the ‘low fat era’) and was able to heal myself from bulimia. Anyway….as I got older I began having weird and unexplained skin problems. Constipation continued of course….despite a VERY high fiber and water intake. Was eating a high carb low fat diet…blah blah. Laxative use continued. At 39, diagnosed with non alcoholic fatty liver disease as well as a hiatal hernia and GERD (and of course esophagitis and gastritis at the time). At 43… Ruptured appendix (misdiagnosed three times bc multiple ovarian cysts blocked their view of it….ended up in hospital several days with an abscess!.). The surgeon said that while removing my appendix he noticed my intestines looked like that of an 80 year old….completely stretched and wandering through my abdomen. Great…. So, After being rejected for health insurance in fall of 2012 (at 45) bc of the fatty liver and “risky blood lipid levels” I decided to go drastic…. I am a very physically fit person and have always stayed “relatively healthy” …ha…. and lean on a low fat diet (bc I was taught in college that that was ‘the’ healthy way to eat…). I was beginning to gain a little weight at 45 so I decided to try a low carb diet (grain free) for a while and see if I could lose a little belly fat. Well….that’s when life changed. 45 years of constipation completely vanished within about 10 days. No more skin problems. No more bloated abdomen. I was so thrilled that I just couldn’t believe what was happening. My husband has been relieved too…esp after he’s tried fruitlessly to help me thru so many bowel issues. After doing loads of research I found that 15-20% of celiac cases report constipation….often misdiagnosed as IBS. I have considered an official test. But I’m so miserable when having the slightest amount of gluten that it’s a turnoff to go back on it just for a test. So I stumbled upon this! Anyway…that’s my deal. Thanks for blogging!!
Hi Gluten Dude, I am new to the gluten free community and just found this great blog. 🙂 I have to comment because I have a very interesting background as well. I had a talk last year with an Aunt about our crap-tastic genes last year after my thyroid started melting down after I had my 3rd baby. My dad was born into a very large family of Irish extaction. There were 14 kids and almost all of them have had lifelong struggles with auto-immune disorders. My Grandma died relatively young (early 60’s) with cancer, diabetes and lupus. Back to my Aunt- she has a theory that our genes have been warped by hardship. Our ancestors dealt with the potato famine in Ireland and then my Grandma grew up starving and at times homeless during the Depression. Many of my cousins also have auto-immune disorders. I’ve had issues with acne, asthma, allergies, gluten intolerance (*sigh* just self diagnosed at this point, the Doctors I’ve seen where extremely unhelpful in helping me find the cause of my symptoms), thyroid problems, general fragile health and possibly others as well. I’ve had a lupus-esque ‘butterfly’ redness mark on my cheeks since my early teens. I’m curious to see who else with many auto-immune issues also has Irish ancestry.
Warts and all…. seemed to be a recurring issue above. At about the age of eleven/twelve my feet came out in hundreds of little warts all over the soles, too many to blast off. My doctor at the time said he had never seen anything like it, but may be caused by puberty and if it didn’t go away naturally then he would look again. Took about six months to clear up. Then when I was eighteen the exact same thing happened to my fingers, particularly to the ends and joints, it looked disgusting. Once again too many to treat. Took about twelve months to go away this time. A long time to have to keep your hands in your pockets….. Anyway watched a UK reality doctor show recently where a kid had untrollable warts on one foot, in this case it was a sign that her immune system wasn’t coping and that Warts often thrive when immune systems go awry – I wonder if the crazy Celiac immune responses reduce our ability to fight them off.
Other symptoms before diagnoses, always very light, sore tummy, massive anxiety and morning nuasea, fatigue, brain fog, depression. These were ongoing symptoms but I also went through some interested crashes. I had a restless leg crash period for a year (couldn’t then sleep and that is a great cycle!), then got really bad symetrical joint pain for a year, which slowly faded away leading to really bad migraines above one eye right up to diagnoses.
When glutened the symptoms above come back to remind me in innovative ways, usually combined with morning nausea I can get the joint pain revisit for a couple of days, or a restless leg that wants to act like a road drill for a few nights. When trying to hold myself together after a glutening I think of them as old friends wanting a visit!!
Interesting…and I’m starting to think more common than most realize.
I probably can’t even remember all my other ailments and symptoms. I’ve been GF for at least 12 years now. I thought that might be the answer to my health issues. It was for the G.I. problems. I haven’t had the biopsy and see no need to since I can tell when I eat gluten and become very ill. I did have a test through Enterolab because I wanted to know if I carried the double copy of the “celiac” genes and had passed it on to my kids. No double copies but that doesn’t mean I don’t have it. I was told I was at least gluten intolerant. Good enough for me. I also found out through that lab that I am casein intolerant which I chose to ignore for too many years until recently.
I was diagnosed with Hasimoto’s years before that and developed a huge goiter that I had to have removed along with my thyroid.
I was diagnosed with rheumatoid arthritis before the thyroid disease because a foot growth I had removed was a rheumatoid nodule.
The docs keep testing me for Lupus because of ongoing symptoms and thankfully that is a negative so far.
I had several years of pretty seveve anemia (after the gluten testing.)
I was diagnosed with Fibromyalgia.
I’m not going to list all my symptoms that happened in the last 10 years because it’s pretty involved. I was very, very sick. Like I couldn’t get out of bed at all some days sick because of the pain, fatigue and severe muscle weakness.
This was after giving up gluten and I am very good about it so I know it wasn’t gluten poisoning.
In a nutshell, I had severe fatigue, weakness and all over pain along with lots and lots of other symptoms which included brain fog, loss of some cognitive abilities and really bad memory issues. It was a very scary time for me . I knew something was really wrong. I went to 3 different specialists who all kind of blew me off because I already had so many things going on and I was on a lot of different drugs. I’m sure they thought it was all in my head.
Anyway, after deciding to accept my fate as having Fibromyalgia after a 2nd diagnoses of it from a Rheumatologist something in the back of my mind knew it was more. I just kept getting more and more sick. Finally, someone on a Fibromyalgia help board told me to check out Lyme disease symptoms. Bingo! I did and the rest is history.
I saw a specialist and was diagnosed with late stage Lyme disease and 3 other co-infections from a tick bite. I had probably had it for years – maybe decades. In hindsight, I remember 2 different bulls-eye rashes years apart. I had treatment for 2.5 years straight and slowly improved and then plateaued. Finally my doc threw a really potent anti-biotic at me and I showed some great improvement.
I am off those Lyme meds for now. I haven’t fully recovered and I might never do so but operating at about 70% most of the time is so much better than where I was. At least I am able to socialize now and maybe even hold down a regular job. I still get fatigued if I over do it but it comes with the territory.
So, having had all these auto-immune issues plus the Lyme disease, no offense, but I’ll take Celiac disease any day over the tick borne illnesses. It’s all relative, eh? At least I can control the gluten. I adapted to that lifestyle quite easily and it’s the only auto-immune disease one can control and even reverse (damage) through diet. Well, that was the old way of thinking. I know there are anti-inflammatory diets now that are supposed to help with other auto-immune diseases. I am trying to slowly get to that way of eating also to see if it help my still lingering symptoms.
I may have developed all these auto-immune issues BECAUSE of the tick bite. Left untreated, Lyme disease can eventually cause an auto-immune cascade and we know, if you have one auto-immune disease, chances are, you will develop another. Many people I know that are very sick with Lyme also have gluten intolerance and thyroid issues.
So, that’s me and some of my symptoms and diseases. There were some really bizarre symptoms but I think they were from the tick-borne illnesses.
“I’m sure they thought it was all in my head.”
How many times have we heard that on this blog? Sad.
Once you went gluten free – how long did it take you to feel better?
Because of celiac’s (I know you’ve already dealt with cancer) does your doctor do cancer screening? Blood tests (CEA) or something?
Because of having had cancer do they do the above?
I come to your site often but I have so much brain fog/memory issues there are things I’ve read and can’t remember. I’m not struggling with the diet but I’m struggling with still not feeling well. It is so scary.
Did you (again – may have read this on your site but can’t remember) just go gluten free when you started or did you also cut out night shades? Did you add those things back in?
I just want to feel well again. I’m also waiting on neurology and rheumatology appts. (already have a hematologist)
Thanks for your site.
By the way, the rheumatology appt I’m waiting on is a 2nd opinion. I’ve already seen one and am testing positive (not sure for what yet – they wanted to retest me in April) and I figured I better get the ball rolling on a 2nd opinion. If I have a diagnosis coming from them I’d feel better knowing 2 different doctors/practices had the same diagnosis.
Speaking of – do you know if Celiac’s can cause positive ANA and other rheumatology numbers? Guess I’m just being hopeful. I had two diagnosis in a two month time frame and I just want a break. I want to feel like my old self again. This raging inflammation needs to calm down.
It is so good for my soul to read these lines here. I feel lately like I am all alone in the world with this horrible food intolerance.
I was not diagnosed officially – biopsy came back negative. Blood test was never done.
8 months ago I got strong digestion problems and strong pains in my right lower belly. They thought that it’s inflamed appendix. It was not, but they never found out what caused my pains. I was sent home without any diagnosis.
I did elimination diet (start of the SCD diet) and re-introduced everything slowly. Every time I tried wheat, I got pains, diarrhea and extreme fatigue back.
But I have been a sick person all my life and I wonder if other people are simply also always sick but dont talk about it. Because for me it is normal to be sick.
– as a child strep throat and ear inflammation min 4 times/year
– at 12 – first acne
– at 13- thyroid tumor
– at 18 – inflammation of one muscle in my left eye, no explanation found, 2 years of auto-immune drugs, lost 60% of sight on that eye
– at 19 onwards – bad back and face acne
– early 20s – 2 years of yeast infection at different places
– early 20s – random sudden diarrhea and strong cramps. These were my first digestion problems, thought it is related to gall bladder (my whole family has problems with it). Took anti-cramp medicines for years.
– late 20s – mid 30s – chronic sinus inflammation, colds every 3 weeks (really)
– early 30s – tennis elbow (not from playing tennis 🙂 ), wrist pains, to the point that I couldnt wash my own hair sometimes without strong pain.
– mid 30s – very, very tired, sometimes to the point that when I fall asleep, people can’t wake me up, and I was sleeping like I was drugged.
-mid 30s – lower back pain, shoulder pain
– mid 30s – digestion problems, stomach pains for 2 years. finally strong belly pains, so much that I had problems walking because of them.
Then I excluded gluten. Back pain, shoulder pain, elbow, wrist pains – all gone. Sudden cramps after eating stopped. My sinuses cleared and I did’t get a cold since I went gf. Tiredness and uncontrolled sleeping come back if I accidentally eat something with gluten. But then they do come back big time… Much stronger than before.
Now I even can’t eat corn. That makes me very sad.
I have a feeling like I had to be strong my whole life to deal with all these illnesses. And now I have less and less things I can eat. Even if my body is getting better, it still makes me sometimes really sad.
Thank you all for sharing your stories!
Forgot infertility, Vit D deficiency, anemia (before going gf)…
And the worst comment I ever got was- ” Are you ever going to be all right? You always have something”. At that moment I wanted to slap a person.
Several of these comments sound so much like my story, I am thrilled to know that people also had or have the same reactions. I was born with Celiac. It was never diagnosed, but I was one of those kids who always had a stomach ache, moody, developed very young. (my breasts never stopped growing. I had a reduction when I was 33 yrs old (they took off 5lbs on one and almost 6 on the other.) I always had bathroom issues and I spent most of my lifetime finding stores and restaurants (etc.) that had only one toilet in a bathroom. I always felt as if I was ready to have a bowel movement at any second. I also looked quite like the kids that you used to see their stories and someone asking for money so the kids could go to school. I had a bloated belly, constant pain in my entire body. As this got worse and I got older, I realized I would always get Bronchitis and pneumonia at least 2 times a year. I Also had what I used to call, Stress bumps on my hands, they were painful and you could pop them over and over. I also then started getting them all over my body, and they were sooo painful!! I still get them, even though I am GF. I started seeing a doctor who I really loved, and she spent about 2 years trying to find out what was causing all the pain and thought I needed to remove my gall bladder. By this time, I was so sick with no dx. she referred me to at least 6 docs and never would get any real care. Then my doctor moved across the country. I was referred to another doc at her clinic. He was not my style in any way. So I went to several more docs, all telling me to just lose weight. I spent years begging to dx me. I finally was sent to a Gastro doc. our first appt, he had me sitting on the exam table and he got closer to my face and said “I think you have Celiac Disease..”, he then did a ton of tests on me, and said you do have Celiac and this is what you need to do. I was finally diagnosed at 38 yrs. I was not able to be GF til I was about 44, because it’s very expensive and I am living on foodstamps. But, I ended up much sicker and he did another endoscopy and said the sprue was much worse and I was getting some life threatening illness because I was not GF. And for years I would say my left and right colon hurt all the time (meaning the area in front of my liver and my spleen). All the time and when I ate they got so bad, pain like you can’t believe, and I would bloat out like I was 9 months pregnant, and my whole belly would be rock hard. This is when I had an MRI to see what was happening in my belly. Turns out I have Cirrhosis of the Liver , a very enlarged spleen. I was very anemic and so I get infused every 4 months. I don’t absorb any vitamins. I do take Vitamin D because I am close to having Rickets, I live in Oregon..we favor the white skin, and don’t spend much time outside. I now have a liver specialist, I am checked every 4 months for liver cancer, and spend a lot of time reading ingredients.
So was tall thin but unfit as a kid, had recurrent stomach problems, attention problems, was diagnosed as hyperactive and had night sweats from very early. Moving into my 20s started getting really painful reflux and felt like I had been punched in the lower ribs on my left side all the time, this is where the small intestine is…… Doctor gave me acid blockers which slow down digestive transit and increase exposure to gluten so of course made my symptoms worse, complained and got sent to a neurologist who diagnosed me as a hypochondriac. Had to quit running as I had shin splits, guessing from calcium deficiency and also started getting lower back problems. Suffered anxiety which I put down to having quit smoking. I miss smoking.
Moving into my 30s eating Gaviscon pretty much every other day, the discs in my lower back started to degenerate to the point where i couldn’t walk some days, overcame this via a lot of yoga and pilates and weights, my vagueness / brain fog began to get really bad, got diagnosed as diabetic, then after I went on a crash GI diet got undiagnosed because of course I had inadvertently cut out gluten so the symptoms went away. Also had a liver profile which suggested I’d had hepatitis but this went away as well..
Then in my 40s ended up in A&E with an irregular heartbeat on 3 occasions, told it was an electrical problem and nothing to worry about, got diagnosed with a calcium and vitamin deficiency. Due to my partner being pregnant and me being overweight, I went on another GI diet and the night sweats stopped and then started up again as soon as i started eating normally. Bumped into a woman who had had a similar experience with the diet and been diagnosed as celiac had the blood test and tested positive at 44.
I am having real problems trusting doctors and would be interested in how anyone else has overcome that aspect.
I am a 58 year old woman,I was dx with CD about 9 years ago.. I had routine blood work done and my liver enzymes were off so my gp sent me to a gasternilogist he said my liver was fatty which didn’t concern him because I was heavy, which didn’t go with his real concern, that I was mall-absorbed, meaning I had CD and would need a biopsy of my upper GI. They thought CD people were very thin. I also had a stroke in 1998,caused by a clotting disorder called Anti-phospho-lipid also known as Hugh’s syndrome because his normally healthy mothers kept having miscariages,he found they were caused by a blood clot. When I told the Dr. I had 2 very normal pregnancies,he told me not all people with this disorder had miscarriages. When I was first diagnosed with CD,I ate meat,fruits and vegetables because they didn’t have all the alternative flours then. I soon got very tired with that diet and started eating anything,with no apparent problems. About 5 years ago I started reading about CD. I had a lot of the symptoms joint pain,IB,cronic snius infection,depresion,sleep issues,fatigue,dry skin,hair and nails, vitamin defficencies so I went gluten free but I haven’t seen any improvement. The depression has only gotten worse because my normal social life has been affected. I tried to eat wheat again and ended up on the toilet from both ends for 6 hours and had severe joint pain,stomach issues and brain fog for several days. Every once in a while I get glutened and become bloated and brain fog and stomach issues. I was finally sent to an Endo she has sent me for thyroid test,my thyroid is enlarged. I will keep you posted on her findings,if you have any suggestions please share them. Also,until I had the stroke, I led a fairly normal life constipation and low iron levels,but no other problems. I think the problem with diagnosing CD is the very different symptoms.
I was diagnosed with celiac’s at age 25 it took more than 10 doctors and finally a neurologist found out with was going on. I too was dubbed a nervous kid growing up. I had epilepsy until I was 18. I too was an athlet and sick all the time. I have faces ibs, ibd, gerd, kidney stones, overian cysts, endometriosis, asthma, sinus infections, in explainable back pain, headaches, numbing of limbs, distended gulbladder, warts as a kid, excessive weight loss, chronic fatigue, now I also have thalassemia which had been misdiagnosed my whole life for anemia. I am will be 28 this June but feel like I’m in my 50’s. I just want to sleep all the time. Recently I have also developed sever acne 🙁 too. I have been gluten free for six months now and have seen a bigs change in my stomach issues. I just want to say I do think celiac and other health issues are intertwined. Oh sorry I forgot I also have sinuses arrhythmias. Hope my info gave insight to you guys.
Sorry guys it’s Krys not keys. Dang auto correct lol
As a newly diagnosed Celiac – I’ve shared my story on my new blog. Thank you so much Gluten Dude!
Hi, I came across your blog when doing research about CD. Do you know anything about it and how it shows itself in a toddler?? I am going in to the pediatrician today to ask about my sons lack of growth and his persistent diarrhea (he’s had it or loose stools for over a month now). I know he is at an age where kids growth typically does slow down, but I think he has dropped around 25 percentile points on the growth chart since his 12 month check up (now almost 18 months). He has also had numerous ear infections, some issues with wheezing and has been on a lot more antibiotics then I ever would have hoped for along the way. But overall he eats a lot, is very very active, appears healthy, never gets a fever, and is a happy little boy. While searching about the diarrhea and no weight gain I came across moms with celiac toddlers and got curious. Thanks!
I fall under the “undiagnosed coeliac” category, purely because after trialling a food diary I found that after eating wheat I became very ill. I was already 18 by this point and had spent my whole life dealing with stomach aches, severe fatigue, back pain, hair loss (luckily it’s very thick!), extremely heavy and painful periods, anaemia, depression, anxiety, joint pain, heartburn and thought it was normal to only pass faeces twice a week (needless to say, it was a painful experience).
After years or going back and forth to GPs, specialists, hospitals and even A&E a few times (including every intrusive, painful and humiliating test going) I finally met one doctor who was convinced that I suffer from CD. Unfortunately, I was 24 by this point and had already upped my wheat-free diet to gluten-free (after an episode of lymph nodes) so was unable to take the test. It was suggested that I could do it, but I’d need to eat 2 slices of white bread every day for 6 weeks, and I don’t need to tell you guys that I rejected the idea straight away.
In the last 2 years I’ve gone from rock bottom, where if it hadn’t been for my partner at the time I probably would have tried to kill myself, to being able to come off of all the medication and leading a normal(ish) life thanks to a very strict gluten-free, low-carb, high-protein diet, taking vitamins B, D, Iron and Zinc and spending a lot of time at the gym working on my core muscles.
Sadly, recently I have been suffering from jaw problems which has seen me put onto a no-chewing diet. This has really affected my energy levels, as well as the painkillers sending me back to square one with my CD. Not sure if it’s related, but I’m currently on day 6 of lying flat on my back due to severe lower back pain (any tips for helping with this would be a huge help).
Wow. Just realised how long this post is.
Anyway, I spotted this online the other day – does everyone agree/disagree with the suggestions? https://twitter.com/ewardall88/status/465107748884344833
I know this is an old post, however I have only just come across your blog.
I was diagnosed as a coeliac in 2009. In 2010 I was diagnosed with Graves’ disease. I had, and still have, lower back pain and joint issues which come an and go as I am hyper-mobile (another auto-immune issue).
As a child I had warts on my knees and as a teenager I had terrible skin!
I get the skin rashes associated with coeliac disease and have poor enamel on my teeth too.
I have just changed GPs to an incredibly progressive GP who is also a clinical nutritionist so I am hoping to get a much batter handle on my health issues!
I had some seizures recently in my sleep (my partner tells me) and I had a sleep study done and I have minor activity at night and he’s sent me for an MRI , then back to see him and he may want to put me on drugs to keep it under control. I don’t want to do this so am having the MRI to make sure nothing else is going on – then will speak to my new doc.
The latest is that I have been told with all these issues I am likely to be pre-diabetic so definitively looking forward to meeting with my doc and a dietician together to get on top of it all!
Just thought I would share with you as my doc believes that these are all related and at the age of 36 I am still learning more about my health everyday!
how did you track down a progressive GP, mine is awful, I had to fake some of the symptoms in order to get the blood test and biopsy, both positive.
I’ll right away grab your rss as I can not to find
your email subscription hyperlink or e-newsletter service.
Do you have any? Please allow me recognize in order that I may just subscribe.
I was diagnosed in Jan. 2014 with Celiac’s disease. No fun. As a child, I was very healthy as we did not eat much that was bought from the store. Our meats (beef, pork & chicken) all came from my grandparents farm. Our vegetables were grown on that farm as well. Heck, I didn’t know eggs came in white until I was like 15!!! LOL Even our milk came from the farm (unpasturized). However, after getting married I resorted to the easy life of buying from the store.
Now that I have Celiac’s, I am in the process of buying meat that is only grass and corn fed (more expensive go figure!). Next summer we will be doing our own garden again.
I have 3 siblings and none of us were sick growing up. We have all been sicker as adults. It is amazing how easy it is to get sucked into the “easy, convenient” way of eating which is nothing but horrible times for our bodies. Since going GF in January, I feel better, have more energy and am now going to sleep at a decent time.
I constantly spent my half an hour to read this website’s content everyday along with a mug of coffee.
I’m not diagnosed with celiac disease. In fact, I’ve been cleared of having it by blood tests and the upper endoscopy. However, I have an inkling many of my test results were swayed by periods of avoiding gluten on my part, but nothing long lasting or doctor prescribed. Just personal trials.
I was always dehydrated as a child, was chronically constipated,but still had soft mushy stool a lot when they came. I got horrendous migraines when I hit 12 years old that were debilitating. I had painful, crippling stomach aches and heart palpitations throughout high school that no one acknowledged. Then at 18 my appendix burst after a day of typical stomach pains. It was removed and I felt so much better for a few years. Then I began with lower abdominal pain in my 20s. I brushed it off even though it felt like rocks were in my reproductive areas. At age 26, I became extremely ill for 3 weeks with what seemed a flu. The ravaging liquid stools multiple times a day never ceased and to this day, 5 years later, it’s still a daily battle where I am sometimes unable to leave my house. I’ve always experienced overwhelming fatigue, even throughout my childhood. It runs in my family.
Now I have excessive hair shedding, fatigue, loose stools, headaches, vaginal bleeding randomly throughout the month, lower back/tailbone pain and pressure, can’t digest most foods I eat, night sweats, overheating at times, freezing at others, toenails and fingernails growing with weird wave patterns, heavy menstrual cycles, bladder pain, pain during intercourse, numerous permanent floaters in my vision, constant runny nose for YEARS straight, exercise induced asthma, yaddi yaddi yadda.
And oh yes, I’ve been through the battery of tests and numerous doctors and specialists. I gave up a couple years ago after being told I’m extremely healthy (looks are deceiving, I hide it well) and racking up doctor and lab bills that became so large and overwhelming I figured I’d be bankrupt before I ever found a solution.
Abdominal ultrasounds, upper endoscopy, 1st colonoscopy at 27, biopsies, inter-vaginal ultrasounds for the ‘rocks’, blood work dozens of times, nail biopsies for the wavy ridges, heart scans, back and spinal and abdominal xrays, barium swallow and small bowel follow through, stool sample tests, small bowel bacteria testing, hormone levels checked, etc etc and so on and so forth.
Bottom line = I’m as healthy as a horse! It’s just a complete coincidence that the barium traveled the entire way through my intestines with 45 minutes and had me trapped in the bathroom at the hospital for hours before I could even go home…. Sigh. And they said the barium causes constipation! Ha! My intestines laugh in the face of constipation!
Anyway. Thanks for listening. I find this all so disheartening seeing as I’m only 31 and have felt 90 for years already.
I’m 23 and I was fully diagnosed in January this year. (I was on a waiting list for test for about 8 months).
As a kid I suffered a lot from stomach bugs. Every one that passed through the school, I got it. I also got colds a lot.
From the age of 11 to now grew 2 inches. Everyone in my family is taller and bigger built than me.
When I was a teenager I got dry patches of skin on my arms (which I still have). I also had a lot of female problems.
When I got to my second year of college, things started getting a little worse. I got a lot of stomach problems like extreme gas and such. I didn’t think much of it though as my mother has stomach problems too. I just drank lots of peppermint tea which helped.
That summer I had a bad case of contact dermatitis in my armpits and at the same time I had dandruff so bad that I had chunks of scalp 1cm in size coming out of my hair.
When I got to 3rd year of college I met my boyfriend and I caught the flu the same week. In the two days I was horribly sick, I lost 7lbs which I am still struggling to get back. I also had extreme fatigue.
Then last year I got a pain in my ankle which the doctor couldn’t explain. A few days later I was back at the clinic, My ankles had swollen and were massively red. I also had large red lumps all the way up my shins. I had erythema nodosuma. It is an autoimmune problem so the doctor sent away blood tests for all the autoimmune diseases and celiac came back positive. I got the biopsies done and all were positive.
Hello! I am 46 years old and a newbie to celiac disease. I was officially diagnosed on July 7, 2014, after having the blood tests and Upper GI with biopsy. I had been to a routine visit with my endocrinologist and asked about the rash on my arms (which I have suffered with for the last 12-15 years). I have tried all kinds of treatment for it, but nothing helps. It is a very painful, extremely itchy rash and lasts for weeks. My doc asked if I was allergic to gluten and of course I said “no,” but that my grandmother had celiac disease. She suggested I have the blood tests which led to the Upper GI/biopsy and my celiac disease diagnosis. The skin rash is dermatitis herpetiformis – a symptom of celiac disease – the description on your blog as the “rash from hell” is accurate.
My list of other health issues is quite long, but here goes: Type 1 diabetes (diagnosed when I was 19), Hashimoto’s disease (diagnosed when I was 26), recurrent sinus, upper respiratory, and bladder infections (have been hospitalized once with a bladder infection because I was septic and am currently taking a maintenance dose of antibiotic to fight off the bladder infections), migraine headaches, ADD, fatigue, insomnia, high blood pressure, allergies (took shots for many years when I was younger, they seemed to lessen as I got older but have returned – constant runny nose), brain fog, bruising, incredibly dry skin (sometimes cracking) around my eyes, always cold. I know I’ve forgotten some.
After my Upper GI I started cutting out gluten. Now, with the official diagnosis, I will be gluten free. I saw a nutritionist this past Thursday to discuss the gluten free life. I can sum up my visit in one word, OVERWHELMING!!
I am so glad I ran across your blog and Facebook page. Reading everyone’s histories and the results of going gluten free helps me know that I WILL feel better and I CAN DO THIS!
Overwhelming indeed in the beginning. I promise you it gets easier…much easier. Welcome to the community.
I wondered as well if many of the things I went through were tied to gluten. I don’t know.
As a baby, I could not tolerate regular infant formula and was put on a special type (not sure what).
I had horrible allergies as a child. I had a chronic runny nose and congestion. I always had to carry tissue, cough drops, and an asthma inhaler around. I was real cool. I had allergy testing and tested positive for cats, dogs, pollen, mold, trees, and grasses (main one). They did NOT test me for any food allergies or sensitivities. I wet the bed until I was about 8, no matter how many trips I took to the bathroom before bed. I was always “heavy” and I swear I craved bread. Bread was my favorite food group for many, many years. I had many bladder infections and ear infections and remember taking the pink (antibiotic) liquid medicine many times throughout my childhood.
One of the oddest things when I was a child was that sometimes I would feel “off.” I was not able to put it into words until many years later, but every now and then it almost felt like I was out of sync with the world. Like everything happened on a two-second delay. When I moved, talked, everything seemed to be a little slower than I knew it was. I HATED that feeling. I would get mad when it happened, but I didn’t know that it wasn’t supposed to happen (I was only a kid). Years later, I finally was able to describe it to my mom.
My teen years were fairly normal with some allergies and asthma. In my 20’s I had two children and I had preeclampsia symptoms with both. I was eating exactly like the doctor recommended (low fat, low sodium, whole wheat) and I was putting on large amounts of weight and my blood pressure was high. I had to stay on bed rest at the end with each and had c-sections because there was protein showing up in my urine. I dropped about 40 lbs.(including the baby) within 4 days of having my first child (it was mostly water).
My 30’s is when I started to have all of the symptoms that have led up to me eating gluten free. I am undiagnosed, but will never do a gluten challenge. I’ve been down the “well….it’s probably not gluten” road and then it would slam me again. My worst symptoms were atypical (another post) with a some gas and some bathroom issues thrown in. Frustration with my health and the answers doctors were (not) giving me and I went gluten free on my own. If I only knew then what I know now. (If you are reading and are not diagnosed..do not go gluten free until you are tested for Celiac. If you come up negative…then try a gluten challenge under a doctor’s care.)
I’m in my 40’s now and I hope and pray that I can undo some of the damage to my system. I am still refining my diet, with better results and plan to try to stay informed on what my body is telling me and what I can do through screenings and wellness checks to keep healthy in the future. I appreciate everyone who has posted and shared his or her stories. I’ve learned so much through this community!
Warning: This is kinda gross but I need help. Sooooooo I`m dying again. I went gluten free about 6 months after a celiac diagnosis and it helped for a little while but things are taking a turn for the worse again. I`m 18, I don`t smoke or drink of have sex with random strangers and I`m in shape so I`m really confused about whats going on with my body because to my knowledge I`m taking care of it. Every now and then (but a lot recently) I poop black bloody stool and I`ve been having problems holing urine and I`m always tired again. I`m kind of getting scared and I`m confused because I thought going gluten free was supposed to help me feel better and I`m started to wounder if I got a mis-diagnosis and something even worse is going on…please help.
Please…get thee to a doctor immediately.
You just beat me to it Dude! Please see a doctor immediately!
My BFF had those same symptoms and she ended up being diagnosed with Chrone’s disease and ulcerative colitis. I hope you have seen a doc by now. Best health wishes to you!
I hope you have got this sorted! I have just been Diagnosed Celiacs, but I also Have Crohns disease… you can have both!! Black stool is an blood thad digested from higher up in your bowel and you really need to see a doctor. Good luck x
You had early onset bladder cancer right? That is the symptom you should be keying off. Couple syndromes are associated, Cowdens and Muir-torre hnpcc.
Just something I would investigate
Thanks. Will take a look for sure.
Your list of health problems mirrors the ones I’ve experienced as well. Mine were warts, acne, kidney infections, chronic fatigue, migraines, seizures, and now Celiac that presents mainly as DH. Thanks for sharing your history and please continue giving celiacs and “outsiders” the real deal! I feel fortunate that GlutenDude was one of the first sites that I found. I am eternally grateful, and deeply thankful for all that you’re doing! 🙂
Hello all. I am writing about my husband’s story. He was diagnosed 10 years ago by a doctor in the U.S. who was originally from Romania. I think, especially 10 years ago, there was more awareness about Celiac Disease in Europe. His diagnosis came when he started having a bout of extreme fatigue and difficulty breathing. While it was first thought that his breathing difficulties were the result of anxiety attacks (he does have anxiety stemming from CD), the doctor ended up finding that his breathing difficulty was stemming from Pericarditis, the swelling of the lining around the heart. At the same time, his fatigue was being caused by anemia, something which shouldn’t be happening to a normal, healthy 30 year old. The anemia is what tipped the doctor off, because he went through a medical book he had which listed all of the possible known causes of anemia. He went down the list testing my husband until he found the test that registered positive–CD. The Pericarditis occurred as a result of his immune system freaking out. Previously, he had had another immune system “freak out” when he had Scleritis (swelling of the eye) in his early 20’s. Furthermore, in his teens, he had an episode of not being able to keep any food down and losing tons of weight; after many tests which didn’t include the CD test, his doctor at the time accused him of being Anorexic/Bulimic. Thank goodness he finally got a diagnosis.
Now that he has been as gluten free as possible for 10 years, he has been much healthier. He reacts to accidental glutening with diarrhea, moodiness, and acne. The struggle he is continuing to have to this day is joint pain! Even when we cannot think of any way he has possibly gotten gluten, he sometimes has severe, debilitating bouts of joint pain, particularly in his knees and wrists/hands. The rheumatologist can’t figure out why and has diagnosed “Non-specific connective tissue disorder.” Basically, he has just had to suffer through the pain so far. The only thing that we have been able to determine is that time in the sun seems to make the pain worse. Frustrating.
Has anyone else experienced continuing joint pain despite being gluten free?
Did the rheumatologist put your husband on anything? I just went gluten free after being diagnosed late 2013. I’m two months shy of one year but some symptoms worsened for me and I also ended up at the rheumatologist and received a second diagnosis. I was put on plaquenil. I hope they can help him relieve the pain. The sun also makes me worse. It isn’t fun. Sending well wishes to him.
Thank you for your reply. Yes, my husband has seen a rheumatologist and was prescribed Plaquenil. It seems to help somewhat, but he still has pain. Thank so much. Best wishes to you, too!
Staci – get your husband tested for parathyroid levels. I had continuing gluten symptoms primarily joint pain. Malabsorption of calcium caused tumor on my parathyroid. YET my calcium levels were normal (from malabsorption) so docs missed until my parathyroid was very high.This is a rare condition but with malabsorption you never know what will happen to our bodies! Good luck!
Hi. Thank you for your reply. My husband does have thyroid issues, so we will definitely look into the parathyroid. Thank you! Best wishes to you.
I was diagnosed with MS in 2006 and in 2011 I was diagnosed with Celiac. I once asked my Neurologist about the odds of being diagnosed with two autoimmune diseases and he said that autoimmune diseases come in pairs! I have a L4-L5 prolapsed disc!
All fun and dandy here, keep up the spirits and the great work Dude!
I am only nineteen, but I was diagnosed the Celiac’s a little over a year ago.
I had constant joint pain, knees, hips, and jaw, for almost five years, which we later came to find out it was Juvenile Rheumatoid Arthritis.
I had jaundice when I was born.
I, too, had really bad acne and dealt with warts on my hands and knees. (Im still dealing with the warts.)
I did and still do deal with almost constant back pain.
I’m glad I’m not alone in dealing with all of this, and that there is someone who went through the same stuff as me.
Hang in there…you’re not alone.
I just found out that I likely have another autoimmune disease now. It was discovered when I requested blood work from my regular doctor (I wasn’t feeling right) and it came back showing significantly high antibodies, and now I’m headed to a rheumatologist to find out what else I have. Of course, I assume this additional autoimmune disorder is a result of living with undiagnosed celiac disease for I’m guessing about 15 years. What a pain (literally and figuratively).
Funny, I remember warts on my knuckles and one on my finger in grade school too. I think celiac lowers your immunity so it could make you more prone to a wart causing virus.
Oh how I hated my warts.
I am 56 never smoked and have severe COPD. I was diagnosed in 2011 and believe I have had it since childhood. I believe celiac destroyed my lungs. I read with interest that the Dude had blood clots in his lungs. My lungs were biopsied at National Jewish in Denver and there was blood in the interstitial tissue. The doctor thought celiac might be the cause. I found out i was celiac three months after the biopsy.
I was pretty asymptomatic or so I thought. I had no gastrointestinal distress. What I did have was severe allergies to trees, grass and weeds. I also had chronic asthma and lung inflammation. If i had a beer I would sweat like pig and wake up in a pool of sweat, occasionally my labs would show i was low in potassium or iron or phosphorous, or sodium; this was the norm over three decades. I always had a dull headache, i had a lot of gas which I thought was normal as I never knew any difference, I also had the big floater stools which I also thought was normal as it is not like I looked at other peoples duff. I also had hemorrhoids all of my life. All of this I thought was normal as I never knew anything different.
Nearly all of these symptoms went away other than the allergies and asthma. If I even get a whiff of gluten I become very emotionally fragile, depressed and anxious. I simply do not think right. A chick flick will make me cry like a baby. LOL. Now that I am gluten free my stomach blows out easily; it did not before.
Most of the docs in my community are not very up on Celiac and it makes me feel like a hypochondriac. I am sure it seems that way to them; heck it seems that way to me.
Hi everyone, my laptop is playing up so i am finding it hard to read everyones comments but here are my health issues.
I have Tourettes syndrome since age 14 but not formally diagnosed till age 25. Crohns disease diagnosed at 19 (another autoimmune disease the primary effects the gut.) And I guess I am lucky that they decided to double check if this time when they found inflammation in my bowel that looked like Crohns but was perhaps celiacs and not just assume Crohns. Boy it was a SHOCK! So now diet restricted to Zero gluten, very little dairy, no nuts or peanuts and no honey.
I am 28.
So finding this site sounds like my life!
I had a doctor mention a few years back it sounded like I had Celiac’s, little did I know, I have been to Dr. after Dr., their idea, give me an antidepressant and send me on my way.
I started really paying attention to what I ate/eat and how I felt/feel. I am almost gluten free—my down fall–cookies!
But in this journey, I have developed so many food allergies it’s not even funny, no milk, no ice cream, I can handled block cheese but not melted cheese, no peanuts or peanut butter, oatmeal(yes oatmeal, like Quaker Oats, is processed where they process wheat)and forget chocolate. When you actually spend time researching they ALL tie into wheat/gluten, gmo!
I also suffer from alopecia areata, shingles, and acne (some dr’s have said it’s roseia) I’m a 48 yr old menopausal woman! and I too was diagnosed at a very young age of being hyper active(now called ADD or ADHD), having a ‘nervous stomach’. And they have tried to say for 10 years that I have Lupus, even though the test comes back ‘neutral’, which makes no sense but whatever! And my white and red blood counts are triple the ‘norm’ and have been for years. As some of the other posters, I have to also be very careful with vitamins.
I would offer for ALL of you who can’t seem to quite get fully better. Through my own research and a huge ugly bout of H-Pylori and expensive antibiotics, I also seem to have an issue with starches-as in potatoes in any form, rice-in any form and any kind. Not only did the bread/pasta/starches/etc send me into spasms of pain, diarrhea, cramps etc, it also gives me massive headaches(like beyond migraine level) and it makes my ears hurt so bad, the ear pain and the ‘whooshing sound’ just do me in. The doctor says the ears is tinnitus, but I don’t believe that.
I also encourage those that don’t consider processed meats as having gluten, to start taking those out of your diets too. Our food is not food anymore, it is simply chemicals mixed and scented to taste like food.
I have been taking apple cider vinegar capsules every 2nd day for two weeks now and I do notice some of the joint pain is better, and today someone gave me a sample of the do-terra oil for tummy’s, I was amazed, after about 3 hours the pain in my tummy eased by half!(I constantly feel like you have punched me in the belly)
Thanks Mr. Dude! I’m with the others, I am NOT CRAZY! Just the food doing me in, and I have read some articles that talk about the celiac/gluten thing ties in to brain function and some mental issues(temper, moodiness, depression)
I always read the comments of others before posting but tonight I am too sick to do so and I apologize. I hope this doesn’t repeat others.
I have systemic lupus. Should’ve been diagnosed around 15 but had mine at 25. I have always had lower back pain but now I have answers, probably not related to celiac. I have had stomack problems my whole life, literally from birth. Had an outie belly button repaired young and gallbladder a few years ago. But lupus is my constant companion and has attacked every organ except my pancreas. Now, my doctor suspects celiac disease because of the horrible bloating in my upper abdomen that is so bad it restricts my breathing greatly and it’s not good due to lung damage. I already have vasculitis in my lower intestines and must take shots to have a bm which also causes horrific back pain. So I’d ask if auto immune diseases run in the family or if you have one yourself. Good health and wisdom to you all!
Hey GD. I found your lung issues interesting. I am 57 and have stage 3 COPD heading for end stage; a few digits away. I smoked about three years maybe 5 cigs to a half a pack a day; while running daily???. Nothing that should have predicated severe COPD at 57.
I was diagnosed Celiac in 2011. I also had a lung biopsy prior to being diagnosed also in 2011. I had blood in the interstitial tissue of the lung; unexplained. After I was diagnosed I told my pulmonary doc at National Jewish in Denver that I was diagnosed Celiac. He said that might explain the blood in my lungs.
Now that I have gone gluten free, I realize I have had Celiac all my life. It is not like you ask your bud, hey dude let me look at your poo. So I went half a century thinking my poo was like everyones poo. It was not.
If I went out to eat and could make a healthy choice I would go for it; always salmon above steak, salad above fires etc.
At any rate, my lungs are toast. I believe the Celiac fried my lungs. Further, I have been a health not all my life; marathons, cross country skier, runner, packer, climber, snowshoeing, mountain biker, road biker, …..If it was outdoors and gonzo I was all in. Now I am all out, ready to fold.
I am hoping I am getting close to going on a lung transplant list. It can’t be too far away.
I am absolutely amazed at all these postings and how I share so many commonalities with so many. Thank you for this website… It’s somewhat of a relief to know I’m not the only one.
I am currently 30 years old and my history is this:
Warts on my hands and face when I was little (had them removed bc I was so self conscious)
Eczema (or so they thought)
I remember being 23 years old and sitting at work after lunch one day, laughing with a coworker, and telling him how my stomach hurts after EVERYTHING I eat. His response, “Hm… that doesn’t sound normal. You might want to get that checked out.” I never once thought of it as a problem — just something I dealt with for maybe 2 hours after I ate. I was always bloated and gaseous… but just sort of worked it out.
In nursing school, at age 27, I was tested for MS because I was experiencing strange symptoms. Anxiety, numbness and tingling in my hands and feet, heart palpitations, blurry vision, back pain. MRI/spinal tap (yeah… wtf?!) with a negative MS diagnosis (thank G-O-D). Final diagnosis by an MD: Anxiety. AKA: you’re crazy and there’s nothing we can do to help. MD actually said to me, “You’ll feel better once you’re done with nursing school.” Thanks, pal.
Within the past year or so I’ve noticed strange things going on with my BM’s. My ex husband once commented to me, “It smells like you eat dead things.”
-__- Thank you, dear.
It wasn’t until, not too long ago, I started breaking out in hives — for no apparent reason. I would wake up, covered in them. Then these red, itchy, vesicular-like rashes on my fingers. I would sit there and pop them, thinking it’d make it go away faster. Naturally, I just thought this was my usual eczema…
Until an RN friend of my found a funny poop poster and what your poop tells you about your health. Whoddathunk?! (obviously not this RN — I do critical care, not this everyday stuff). But BAM! There it was! Pale, yellow discolored foul smelling feces. Great. I suppose “foul smelling” is better than dead things.
So of course, I started looking into it… One thing lead to another. That rash — Dermatitis herpetiformis. Back pain, migraines, blurry vision, the rash, bloating, diarrhea… it goes on and on.
My next step is finding a good GI doc that’ll test me for what I need.
I’ve been “sick” since high school. So much so, that my HS teachers called me Reverse Typhoid Mary (I was sick, but no one ever caught anything from me). I was finally diagnosed with celiac in my late 30’s. My list of fun medical issues in addition to the celiac include:
-ulcerative colitis (in remission since beginning the GF diet)
-nerve death in EVERY SINGLE TOOTH (leading to root canals/crowns on EVERY TOOTH, apicoectomies and a few dental implants). I have a beautifully blindingly white smile, though 🙂
-‘unexplained’ gallbladder failure. No stones. It just died
-idiopathic high blood pressure
-bulging discs (to be fair, I did tumble from a horse)
It took nearly 20 years and 4 GI docs (including the Mayo Clinic, who were useless) to get diagnosed. Mayo, more than anyone, implied that I was “imagining” or “faking” my symptoms, even when my bloodwork showed extreme anemia due to chronic disease. They never tested me for celiac. I’m super grateful for my current doc, who thought to refer me to the GI guy who did diagnose me, but I’ll always be bitter about Mayo.
I had the usual things pre-diagnosis–very thin, classic digestive symptoms, and insomnia. Post-diagnosis, I’ve had microscopic colitis (goes with celiac if you take NSAIDS or are not careful enough with the diet, and I was both); I thought I was clumsy (probably some cerebellar ataxia) and that got noticeably better after a few years of being truly gf; food allergies (egg, beef, and pork–the meat allergies got better; the egg allergy is clearly there); digestive issues from eating gf bread (cellulose can cause colitis in people prone to it, like most celiacs–google Science Daily and cellulose for the study); fructose intolerance developed later, but is cureable with a lower-fructose diet; and most recently, I’ve had “plantar fasciitis” for seven years, and I was starting to think it was psoriatic arthritis. Nope. I started taking Vitamin D supplementation, which most celiacs could probably use, and all the soft tissue pain went away.
I’m not in pain, I sleep at night, I’m not stumbling when I’m tired, and I no longer have digestive issues. I’m at a loss for what to do with myself. =0)
Here is my list: mouth sores, migraines, mild scoliosis, low back pain, bad knees (OA, stage 3 and I’m only 45), severe neck and shoulder pain which is due to degenerating disks. I was diagnosed with that in my early 30s. WAY too young. Severe right wrist pain, stomach issues, bursitis in my hips early 30s, repeated sinus and bladder infections, severe insomnia, teeth issues (enamel, cavities, cracked easily), feminine issues called Lichen Sclerosis, and just pain all over. No other autoimmune diseases. Which is shocking. considering I had it for 40 years undiagnosed.
Thanks for always being there for us! Love your site.
Spent 2 weeks in the hospital at the age of 12, they were trying to see why I had all of the symptoms of appendicitis. As a teenager, I had quite severe Acne, not as bad as some but worse than most. Early twenties to when I was diagnosed at 40, would continuously have severe back aches, so bad some days I could not get up. Every pregnancy I’ve had, all I could ever eat were fruits, vegetable and popsicles. Never touched any wheat product the idea of it would make me sick. (Obviously my body’s way of protecting me and the baby). Also had a blood clot, although mine was a deep vein thrombosis, so not as severe as your thank God. (that was at age 29).
So, yes, I do believe there is a link to it all.
I was hard of hearing due to allergies, had tubes (ears) a few times, bladder surgery (the tubes were crossed and got constant infections) when I was seven, no depth perception with my vision and had to go to eye therapy, under performing thyroid (being tested for Hashimoto’s now), DVT, anxiety/depression (so much better after going fully gf) varicose veins from an early age, horrible dental health, eczema when I use soap with bad stuff in it .. sigh…
I was always sick as a kid especially with stomach aches. I remember having such severe belly pain I could hardly walk and the doctor said I was “about to start my period” which didn’t happen for another 4 years. It took 16 years to get my period, I was always under weight, and tired. That being said, I had chicken pox 4 times (who gets those 4 times!) Fast forward to college…I had the worst hang overs. I could drink two beers and be sick for 2 days afterwards. Still experiencing belly aches, catching every cold/flu around, and still underweight through my 20’s. At 28 I started losing weight, experiencing more belly pain, and morning sickness (no I was not pregnant). I was diagnosed with Celiacs within 4 months. I now have a thyroid condition, scleroderma (no active symptoms), missing an appendix, and an ovary. I think it’s all related on some level!
I am 29 years old and I was sick my entire life until I was finally diagnosed with Celiac Disease last March at the age of 28. I have a pretty rough (and often disgusting) medical history that I will summarize for you as briefly as possible. When I was born, doctors though that I was lactose intolerant because I was a projectile vomiter (yum). I grew up believing I was lactose intolerant which developed into “IBS” – lots of bathroom time. I had horrible, horrible acne in my teens to the point where I completed two courses of Accutane to “cure” it (it’s beyond-words better now). I also have some of the worst allergies my doctors have ever seen, and I am on my second course of weekly allergy shots – this new diagnosis of allergies came with some asthma, too.
In college, I started having chest pains and spent a couple nights in the emergency room with what doctors thought was “pleurisy” and even costochondritis (inflammation in the lining of your lungs). I now think that was inflammation due to Celiac. Finally, right out of college, I was constantly sick – chest pains, bathroom time, fatigue, hair falling out, etc. I visited a rheumatologist who thought I had either lupus or rheumatoid arthritis – both of which were equally terrifying for me. I went on a course of RA medication that did no good and was ultimately discontinued.
I was semi-okay from 2008-2014, but in 2014, after being particularly ill, I looked in the mirror and realized that something was literally killing me, very slowly… I had deep, dark black circles under my eyes, I was constantly bloated, in the bathroom after every meal, so tired and weak I could barely function, and my hair was thinning. I visited my allergist for food allergy testing, and she mentioned the word “Celiac” for the very.first.time.ever. 28 years later and I’m diagnosed and feeling like a million bucks.
I have been sick from the time I was a young child, in my younger years from what I remember, I always had infections, colds and a tummy that stuck out. I remember when I was really young having lots of bladder infections, that continued all through my life into my 20’s. I also remember having an ultrasound on my stomach region when I was really young. In my teen years I suffered through really bad acne, really severe colds and flus (almost once a month) despite eating healthy and being active. I had tonsilitis and strep more than 4 times a year, so they finally took my tonsils out. This is when I started noticing that my stomach hurt a lot, and I was almost always bloated… but I didn’t think much of it because I was SO used to feeling that way. The doctors always said I just had “A weak immune system” Umm, yeah maybe because something was attacking it!!! I suffered with warts on my hands and feet for years.. Then the brain fog, lethargic feeling, and depression began. I was very moody, depressed, and just felt terrible pretty much always. Before I was diagnosed (2.5 years ago) I was having night sweats, severe stomach pain and bloating every night, migraines, extremely dry and flakey skin, and what I like to call “Itchy shoulder” my shoulder would itch so so bad, I would itch it until I made it bleed. I swear these all had to be related to CD. Since I’ve been GF I haven’t had any of these symptoms… besides the occasional tummy ache and bloating when I get cross contaminated. 🙁 No fun!!!
After being blessed with 50 years of near perfect health, I was diagnosed last year with Celiac and Microscopic Colitis. The Celiac is the better problem since I know what to avoid. However, I am still trying to get my transglutimate levels to zero and my vitimin D to normal. I am struggling with it but have never been a complainer. So, again, I am thrilled to have had 50 good years.
I’ve had celiac disease for over 10 years. Had a DVT a few years ago and lead to lots of blood work and diagnosis of a blood clotting disorder called S protein deficiency. Now I see GI and hematology yearly.
Well I normally don’t post things but feel from reading all of your posts that I would contribute to the “Celiac hell I have endured through many years of being misdiagnosed.. As a child age 4 I was brought to the ER for several reasons, at this time I was very anemic, Drs gave me shots of iron and sent home with RX Iron which I couldn’t keep down, also I was very malnourished ( 4 yrs old Weight 20pds) also I was very slow, it was very hard for me to comprehend in school but I got by. Between the ages of 7-14 I began getting extremely bad headaches mom use to call the sinus headaches, I use to have extremely bad leg cramps which back then were called growing pains, there were days where I was in so much pain I didn’t know what to do but just cry. During my teens I started having extremely bad cramping in my abdomen and lower back, I went to the dr and they did several surgeries on me one right after another, first they removed my gallbladder because they said it was 40% blocked, they removed my appendix, Still after that I was having pain, I also was prone to multiple kidney stones, I don’t know how many stents, surgeries and lithotripsies I had to remove them. My body was drained. My mom use to tell me I was the sickest child she has ever met. I at one time was on 26 different medications and know one could figure out why I was having so much pain. At age 27 I was diagnosed with Hypothyroid disease, 29 the dr diagnosed me with endometriosis and I had to have an emergency hysterectomy, I still had no relief, by this time I was seeing dr after dr to get an answer while still having migraines, fatigue, depression, anxiety. Age 31 I had broken my ankle several times just by walking.. At age 35 while jogging on the treadmill I broke my right femur.. How could I have broke the biggest bone in my body without any blunt impact. I now had a rod and pins in my leg. When the doctors did a bone scan they said I had bones of a 70 year old women. How could that be, I’m only 35. I started doing some research on how to rebuild bone density, and can across Celiac disease.. I thought I was doing pretty well till I got rushed to the ER with my enzyme levels way over 800 (normal is 4) I demanded to have a Celiac panel and be scoped.. At this point I had lost almost 100pds and was down to looking very malnurished. My dr at the time doubted I had Celiac but went along with my request… Turns out I have both genes for celiac, and my biopsy showed positive as well. Let’s just say I didn’t return to that dr that didn’t want to listen to her patients. Also I was diagnosed with ADHD and psoriasis on my head. These all link to Celiac or gluten intolerance. As the days progress I have my good days along with the bad but am very blessed to have these symptoms behind me for now, I just wish it would have been 39 years earlier. Since I cook my own food, don’t eat out much do to cross contamination of food, I’m feeling much better.
Quite the friggin’ journey.
While I have not been officially diagnosed yet (still have to take the blood test but it’s not covered by OHIP & it’s $90) I spent most of my childhood sick. My family doctor diagnosed me with IBS when I was 7 and thinking back on it I always seemed to come down with the “stomach flu” the day after eating a spaghetti dinner! When I was 17 I had my tonsils removed and when I was 19 my appendix burst while I was pregnant with my first child (unfortunately I lost the baby).I was diagnosed with Endometriosis at the age of 33 and had a partial hysterectomy at 34 (I’m 46 now) . The symptoms of celiac disease have always been there but I didn’t start putting the pieces together until I came across a book called Wheat Belly by Micheal Davis in early June of this year. I got halfway through the book and discovered that I positively identified with all the symptoms but also my hair was falling out at an alarming rate my scalp was super sensitive and my nails wouldn’t grow! Once I stopped eating everything with gluten in it I felt a change within 48 hours. I’m still in the baby steps stage of what and what not to eat, like Kraft singles ( BAD idea!) fortunately the abdominal cramps only lasted a day I only had one slice. But before that I ate a piece of apple fritter and for a week afterwards I was in agony! That is a lesson that was learned the hard way! Anyhow, I’m glad that I can share without feeling like a whiner. 🙂
Hello, I was just diagnosed with Hashimoto’s Thyroiditis after having a Thyroxiperidase ab antibody test, results of 1,600. This after being diagnosed in 2009 with Hypothyroidism. Still having symptoms I’m under care of a Endocrinologist now I switched to Armour about 6 weeks ago. Diagnosed by my GI doctor for IBS, next week I will have upper GI she is going to test me for Celiac and Gluten issues. I’ve also had lower back pains for long time but nothing showed on MRI earlier in the year. I think I have noticed with more breads etc I have bathroom issues. Cramps,even nausea. I’ve been alittle limiting now to my diet, eating salad every chance I get. If I have any lettuce plus salad items in fridge it’s salad day! I have a long list of diagnoses that would choke a horse. Some: CKD was stage 3 back to norm for now. Hypo/Hashimoto’s Thyroiditis/Autoimmune from it, Bipolar, Fibromialga; Cervical Arthritis; hand/finger/arm pains, Mild Diverticulosis in Sigmoid and descending colon just to name part of the list. My 27 year old daughter has Chron’s and has lost her Gallbladder already. Nothing specific to ask, but if anyone wants to comment. Be my Guest 🙂
Some things that help my gi are L-Carnosine and zinc, colostrum, knox gelatine, probiotics like bifidobacterium breve and lactobacillus rhamnosus (Nature Way primadopholus). Sometimes probiotics seem to do more harm than good in which case just feeding them might feel better than taking them. They like potato starch, FOS, polydextrose. For me, supplements in general seem to do more harm than good. I do better with just a good diet of meat potatoes and veggies like our parents ate. Roughage is good.
You might want to do some investigation on cytokines, particularly Th1, Th2, Th17 balance. A good website is selfhacked and pubmed.
5-htp at night might help with sleep and depression.
I don’t know if anyone has posted about the link of Type 1 diabetes and Celiac? Maybe you could do a blog about it? When my daughter was 1 year old I knew she had a major tummy problem. It took about 6 months to identify the food that was causing it. Crackers, I didn’t even know at the time that wheat could be an allergy. I thought she was allergic to salt (LOL). Took her to the doctor, said the blood tests were inconclusive for celiac and that she would “grow out of her tummy problems”. I persisted and a scope would be the only way to determine. I decided to not put her through a scope procedure and kept her on a gluten free diet. In two weeks, I had a new child and knew she couldn’t have wheat. For years, in the back of my head I always wondered if I was over sensitive to her needs, maybe she didn’t have celiac and would grow out of it? Was I just another obnoxious “gluten-free mamma”? Fast forward eight years later and we end up in the ED, she was then diagnosed with Type 1 diabetes. When, I explain to the Dr about her gluten-free diet, she says “Celiac is common among Type 1 diabetics, about 10% of Type 1 diabetics have Celiac, and the numbers are growing” I never knew. I guess I would have been on the look out for signs and symptoms of Type 1 if I did know.
Also, she had warts too. I wonder if there is a link.
We had the same things just in a different order. My som was diagnoaed as a type 1 first which didn’t surprise us since I am type 1. His celiac panels came up ++ just a year after his diagnosis of diabetes, but no one told us for 3 years. He was an underweight kidz always struggling to to out on weight and to meet numbers on the growth chart. We tnought it was somewhat genetic becasue his dad is thin (at least when he was younger). They had us feeding him so many things packed with gluten because those foods typically pack on weight too in a “normal” child.
He ended up with horrible acne at 11, warts and a body covered in open sores & welts. His surgeon told us these were from his body trying desperatley to force the gluten out from the inside.. It was causing these open sores with bleeding & oozing which looked horrible.
There are so many thinks interlinked it is incredible.
We are just learning of horrible internal inflammation in his entire body that is causing pain, fatigue & illness. This too is related to his celiacs and type 1. They have told us he will probably have multiple autonimmune diaease. Please make sure you continue to have her checked for other things at the first sign/symptom. It can make a huge differance!!!
Hi Mr. Dude! I have been following your blog for a while now…and just had to finally post. First of all, thanks so so much for your helpful advice and for sharing your story.
The road to my diagnosis was rocky as well…In college, I ended up in the ER multiple times for “food poisoning,” but each time, we couldn’t figure out what would cause it. It would always follow eating….but sometimes just cheese pizza–always SOMETHING containing a ton of gluten. My hair was falling out and my teeth were turning black. The dentist said I was eating too much soda or dark teas—but I don’t like soda at all and despise tea so that did not make any sense. I started getting “fever headaches” shortly after eating, you know the ones you get when you have a fever? Except I did not have a fever..I went to my pediatric neurologist who diagnosed me with a second type of migraine and put me on a beta blocker, which did not help. I ended up with chronic sinus infections and lung infections almost every month and no one could tell me why. I was constantly tired and would sleep 10+ hours a night easily (which was blamed on the stress of college) and would need naps. I was moody (which was blamed on hormones). My lymph nodes in my neck area were all chronically swollen and eventually I needed surgery to remove one to test for lymphoma. I had food poisoning symptoms almost every time I ate and horrible excruciating cramps—my general practitioner told me I had ulcers, treated me for them, and told me to only eat bagels with peanut butter to get protein for about 2 months. I lost 15 pounds (and I am already petite at 115lbs, 5’3″) yet was bloated…
I forced my doctor to test me for celiac. “oh no, that is so rare, you don’t have it!” “no reason to suspect”…finally they took my blood and tested it, but due to my lack of IgA (possibly as a result of celiac), we couldn’t use the blood test. So we did an endoscopy and the moment I woke up the doctor said that my villi were so flattened and damaged and that I had celiac disease.
Turns out that the headache was caused by gluten. The blackened teeth due to malnutrition due to celiac. The GI symptoms were celiac. The weightloss and bloating from celiac. My sinuses required surgeries and my lymph nodes are still being monitored. Otherwise, I am doing really well.
Sad that everyone seems to have to fight to be tested or diagnosed….
I was diagnosed with Celiac about 3 years ago after 6 years of being told I had “IBS” and instructed to take imodium or some stomach soother when complaining about bloating and frequent visits to bathroom.
I’ll spare everyone the details of how I had to proactively ask the doctor to simply check another box on my blood work to test for gluten/celiac. I want to help figure out what we all have in common that can help prevent the growth of this disease. Clearly it was under-diagnosed but it also seems to have changed its transmission mechanism because I have zero family history of Celiac and it sounds like many of you don’t either.
Here are the things i’ve done or been diagnosed with in the past that might help find a commonality among us, my sneaking suspicion is that accutane could be it.
14yrs old – took accutane for mild acne, only on it for 3 weeks
19yrs old – appendix removed and prescribed cipro after surgery
20yrs old – started feeling stomach problems, bloating, more urgent and regular visits to bathroom
22yrs old – endoscopy finds nothing, told I have “IBS”, take probiotic and imodium
27yrs old – diagnosed as likely celiac after finally asking to have blood tested and endoscopy
30yrs old – feeling much better on strict gf diet
Interesting. I am having testing done to see if I have celiac disease. My mother who had a whole host of health problems: asthma, rheumatoid arthritis, hashimoto’s, bladder cancer and one day, she collapsed and was gone. The dr thinks she had a pulmonary embolism. I have always wondered if she had undiagnosed celiac disease. I am curious if you ever discovered if these diagnoses are related to one another. thanks!
It is nicely weird to read other people’s stories. It is nice not to feel alone. My dad died at 72 in his sleep about three months after losing a burst appendix…probably a blood clot. His other two surgeries in his lifetime….tonsillectomy and hernia repair. I read an article that states these are the three most common surgeries for undiagnosed celiacs. He also had primary pulmonary hypertension and a tricky liver. He led such a healthy lifestyle. We always wondered where he got all this. Now, almost three years after his death my body went berserk. Growing up I had repeat strep with a tonsillectomy. Soft teeth….growing pains….anxiety….acne….either constipation or diarrhea….most years it was constipation. I was so healthy at my check ups. I would always mention constipation. I had a colonoscopy….nothing but hemorrhoids were found. Suffice it to say I drank a ton of prune juice everyday. Bad back acne for decades. Last year my constipation got worse. Then I began to lose push power. Then I got weakness in my left shoulder and arm. Then I got rotating joint and muscle pains. Low grade fever. Swollen lymph node in neck. Flushed face. Hair loss. Crashing fatigue. Rashes. Etc. went through several doctors….you are having anxiety…..you know the drill. Found I have an ra factor. Found out I was allergic to wheat, gluten, dairy, and egg. Positive IGM for Lyme through IgeneX. Genetic testing to find the dreaded DR4/DQ8. This combo makes me susceptible to Lyme and mold. I feel if I had known earlier…if my docs had taken my constipation more seriously I could avoided a lot. I will never know if I am actually celiac because there is no way I am ever getting back on wheat. I am on several supplements and taking minocyclene to hopefully get my ra factor down. It was 71 last January. It was down to 36 in August. I am about to have blood work done. I feel like I am trying to back peddle….too little too late. If I had my dad back he would never eat gluten or dairy again. Knowledge learned too late.
My daughter was diagnosed at 5 and we have had a gluten free household since she was 6 or 7 and realized that’s what it takes. She is now 12 and has had periods where she will have a few days or even months of extreme fatigue, unable to do her usual activities without extreme effort and we don’t know why. She is getting a complete blood work up next week from a naturopath to see if we can uncover the mystery. She is very compliant with not eating gluten because she doesn’t want to feel sick, so I am not sure why she has such fatigue. She takes multi vitamin, B complex, D, and DHA, and it hasn’t helped. I cry for her because she is a talented dancer, skier, athlete, and loves to be active but has not had the energy to do most of those activities for the last two months and can barely get through her homework (although she is still maintaining straight As). I just hope blood tests have the answer. I looked through many on this blog but most symptoms I read about aren’t problems after going gluten free. And she had a fever last week and was rather sick, but the fever has been gone for 5 days and she is still napping after school and almost falling asleep in class despite getting a full nights sleep.
If you have not already, you might try eliminating dairy and all grains. There is some indication grains other than wheat, barley, rye and oats cause problems for some.
Also I have spring and fall allergies. They do not manifest themselves as itchy eyes, sneezing, congestion. They manifest as lung inflammation and fatigue; almost like I am sick. I had a brother who would get very fatigued and fluish each spring, I would tell him allergies and he would not believe me until I marked it on my calendar (mid March) and told him he would start getting sick in the next two weeks. You might consider allergy testing if you have not already.