Are all of my health issues linked to celiac? Or am I just lucky?

celiac cancer connection

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?!

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386 thoughts on “Are all of my health issues linked to celiac? Or am I just lucky?”

  1. 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.

    1. The Gluten Dude

      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.

      1. 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.

        1. 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?!

            1. Sheron Pearson

              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.

          1. 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!

          2. 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!

      2. 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

            1. 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.

          1. 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.

            1. 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.

      3. 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?

          1. 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!!!

    2. 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. 😉

      1. 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.

        1. 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!

      2. Sara

        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.

        1. 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.

          1. 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

    3. 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…..

      1. 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.

    4. 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.

    5. Starch free diet coukd alleviate IBD sundroms

      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.

  2. 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.

    1. The Gluten Dude

      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.

      1. 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.

        1. 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.

          1. 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.

            1. What is DH? Also, some vitamins contain yeast, which I an allergic to. Maybe you are, too.

      2. 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.

        1. 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.

          1. 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!

      3. 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.

  3. 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.

    1. The Gluten Dude

      Holy Moly Tracey. You have been to hell and back. Very interesting about the blood clots too. So glad you are healing.

  4. 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.

    1. The Gluten Dude

      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).

      1. 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.

  5. 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 .

    1. 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.

  6. 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.
    Osteopenia,
    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)

    1. The Gluten Dude

      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!

      1. 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!

    2. 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

    3. 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.

      1. Sheron Pearson

        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.

  7. 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.

    1. The Gluten Dude

      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?

      Thanks Wendy.

    2. 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.

      1. 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?

        1. 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
          nausea/vomiting
          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!

          1. 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.

      2. 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.

    3. Wendy,
      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.

  8. 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!

    1. The Gluten Dude

      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.

      1. 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.

      2. 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.

    2. 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.

      1. 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.

    3. Alysa,
      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.

    4. Alysa,

      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.

  9. 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. =)

  10. 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.”

    1. The Gluten Dude

      Or maybe there’s some doctor reading this and saying, “I need to stop being so lazy and LISTEN to my patients.”

  11. 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)

    1. The Gluten Dude

      Very interesting Paula. Before yesterday, nobody has suggested to me there might be a relation between the two. Ah…the power of the internet.

  12. 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!

    1. The Gluten Dude

      Appreciate the input Kelly. Sorry to hear your daughter has celiac, but at the same time, it’s nice to get a diagnosis.

  13. 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?

    1. The Gluten Dude

      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.

    2. Patty,

      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…

  14. 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.’

  15. 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.

    1. The Gluten Dude

      Yowsa Sassy. Some story…what a PITA it must be. May you experience healing…and I mean QUICKLY!!

      1. 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

        ,

  16. 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.

    1. The Gluten Dude

      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.

  17. Left Coast Conservative

    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.

    1. The Gluten Dude

      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.

  18. 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.

  19. 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.

    1. The Gluten Dude

      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.

        1. 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.

  20. Gluten-Free@Three

    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.

    1. The Gluten Dude

      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.

      1. 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

  21. 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.

  22. Gluten-Free@Three

    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?

    1. 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.

    2. 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.

    3. 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.

  23. 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.

    1. The Gluten Dude

      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.

  24. 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…

    1. The Gluten Dude

      Interesting all the celiacs with back issues. Sounds like you’ve had a tough ride…sorry to hear.

  25. Hi there!
    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).
    anywho…
    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.

    1. The Gluten Dude

      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.

  26. 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

    1. The Gluten Dude

      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.

  27. 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.

  28. 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

  29. 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.

    1. 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.

      1. The Gluten Dude

        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.

        GD

  30. 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.

    1. The Gluten Dude

      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!

  31. 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!

    1. 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!

  32. 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!

  33. 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.

    1. The Gluten Dude

      Thanks Theresa. I hate doctors who don’t listen. We’ve all experienced them. And they all suck.

  34. 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.

  35. 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.

  36. The Gluten Dude

    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.

    1. 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

      1. The Gluten Dude

        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…

  37. 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!!!

    1. The Gluten Dude

      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…

  38. 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

    1. The Gluten Dude

      I wouldn’t be surprised if it was connected Katie. If your body is healthy, the mind will follow.

  39. 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!

    -Chris M

  40. 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.

    1. The Gluten Dude

      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.

  41. Thanks.

    Did you or anyone for that matter get bad heart burn sometimes or was diagnosed with acid reflux?

  42. 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!

  43. 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!

    1. 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.

  44. 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) .

    1. 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?

  45. 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!

    1. 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.

  46. 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.

  47. 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.

    1. 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.

  48. 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
    Muscle cramps/twitches
    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

    1. Wow..thank YOU for sharing your story. Everybody has their own journey…their own story. Just heartbreaking all of the unnecessary suffering.

  49. 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.

  50. 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.

  51. 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.

    1. 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.

  52. 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.

  53. 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.

  54. 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.

    1. 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.

  55. 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.

  56. 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
    – IBS
    – 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. 🙂

  57. 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?

  58. 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.

  59. 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! :’)

    1. 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.

    2. 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.

  60. 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.

  61. 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
    Platelet 203
    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.”

  62. 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.

  63. 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.

  64. 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!

    1. 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.

  65. 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.

  66. 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?

    1. 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.

  67. 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.

    1. 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.

  68. 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?

  69. 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.

  70. 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!

  71. 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.

  72. 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.

  73. Judy McClelland (Use sassysr for my name, please)

    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.

  74. 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 hy