I was hoping to do a positive, life is good type of post today after a long week of media hell (because life IS good dammit). But alas i had to post this…
In response to my Today Show rant from Thursday, where the guest doctor on the show called celiac disease “trendy”, a reader shared her celiac story on my blog. She was beyond disgusted on what she saw on The Today Show, as we all were.
Her story is the result of what happens when celiac disease is not taken seriously and patients are not listened to.
I want to dedicate today’s blog post to her. Please read her story below and share it…it’s an important story to tell.
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Hi Gluten dude! I feel a bit of a rant coming on….
It’s misinformed, arrogant “doctors” like this who kept me from being properly diagnosed for many years. I suspect it keeps millions from being diagnosed properly.
From late 2007-late 2010, I tried to find out why I was in so much debilitating pain and dropping weight so quickly. I lost a drastic 90 lbs. because I could not eat or keep anything in me. My entire GI tract BURNED from mouth to rectum and even water burned doing down.
One doctor told me “congratulations on your weight loss”.
Another said I needed to “do volunteer work to get my mind off it all.” (I could not even dress myself or tie my shoes)
Another encouraged me to work out at a gym. I tried but kept feeling faint on the treadmill and then, my legs and back went numb.
I heard “it’s just menopause”, fibromyalgia, the catch-all “IBS and GERD””…and my favorite, “it’s just stress” because my father had just died.
I was offered more drugs than you can imagine: pain meds, anti-depressants, anti-anxiety meds, sleep meds, antacids, thyroid meds I did not need —and even sent to a psychiatrist– to get me to shut up and leave the office. Drugs made my already ripped up gut worse and so I did not take them.
I have no psychiatric problems, but I sure as hell thought I would lose my mind.
We spent $30K out- of -pocket on tests, physical therapy, alternative doctors–anything to to help me get well. NOTHING worked.
I lost major muscle mass and tone, my ability to comprehend, articulate and recall information.
I had difficulty remembering how to cook, balance a checkbook and drive my car, and I suffered insomnia, sores, burning skin, and severe burning neuropathy, numbness, parasthesia and weakness. I banged into walls and tripped down stairs, becoming covered in bruises. I was propped on the toilet when I was passing everything and washed down with cold clothes to keep me conscious.
My poor husband thought I was dying.
I had horrid joint, bone and muscle pain, pelvic floor pain, and kidney and liver pain. I was unable to walk the length of my driveway without gasping for breath, acquiring anemia, losing my hair. I was unable to walk, stand, lie down or stand without agonizing pain.
No doctor could tell me what was wrong. FOR 3 YEARS.
Our life came to a stand still as my husband watched helplessly while I went downhill. I forced myself to keep moving so my muscles would not atrophy as my buttocks and muscles wasted. I dragged myself around and researched endlessly to figure out what the hell was going on.
I was told “it could not be celiac” because my blood panel was negative and “no one in my family has it”. (well, someone has to be diagnosed first for that statement to be relevant and blood panels are negative often enough to keep people undiagnosed!) The GI doctor I saw for years did an endoscopy yes, but failed to biopsy me while down there, yet t I did not know this until a year later when I finally saw the report. (lesson? never trust the word of a “nurse practitioner”–ask for the report and read it yourself!)
They were all Wrong . Wrong. Wrong.
I figured it out myself and brought it back to my PC doc and the rest is history. So many things in my life are explained now: migraines, miscarriages, inability to have children, gall bladder disease, etc, etc.
The very celiac-savvy GI doctor who takes care of me now said he feels so bad for all I went through. He looked at pictures of me from that time and taking into account my own medical and family history, especially that of my father’s, my genes (HLA-DQ2) and the dozens of AI diseases in my family —and said “couldn’t anyone SEE it? You’re a walking Celiac”
I said “Doc, this disease tried to kill me” and if I had not been so relentless, I would either be dead or in a mental health ward by now.
I hope I can get my muscles and my life and “me” back, but the road to recovery has not been easy. I never say die. Now, to make sense of the nightmare we went through, I focus on helping others who are struggling for a proper diagnosis.
CURRENT RESEARCH and the well-respected Celiac experts (like Dr. Fasano) KNOW there is more to diagnosing it than the Celiac Panel and the “gold standard” biopsy.
Some celiacs (like me) blood test negative for various reasons. A stroll through PubMed articles will explain that for anyone who is interested. My doc will biopsy me next month in hopes I do not have refractory sprue from years of being undiagnosed. He was waiting for me to be strong enough to endure the procedure.
There is no question that something has to change in the way the medical community views CD.
While our disease is “treatable” (but not curable), as are most Autoimmune diseases, the serious complications and tendency towards developing other AI diseases (like diabetes, Rheumatoid arthritis, lupus, hypothyroidism et. al ) as well as lymphoma IN CONJUNCTION WITH LONG UN-DXED CD makes this a worthy foe indeed. It’s nothing to take lightly nor is it “easy” for many of us.
So, this disease is “trendy”?? Oooh, so THAT’s what I was during those lost years in what I call Gluten Head Hell–I was being “trendy”. My husband is delighted to hear this news. Here we thought, I was just dying and no one gave a rat’s ass.
Being “trendy” makes it all better now.
Lady, you do not know what the hell you are talking about and I do not know how you call yourself a doctor. Pick up a medical journal once and awhile and learn why this disease is finally becoming diagnosed PROPERLY. You should be ashamed of your reckless comments, but since you spend your time appearing on TV shows instead of keeping current with medical journals, I doubt you have given any thought lately to your oath “First Do No Harm”.
Gluten dude, thanks so much for letting me vent. I feel much better now :>)
All I can say is thank you and you go girl!
Good for you!
Gluten Dude may have already posted this, so forgive me if it’s a repeat. Hope it’s okay with you, GD. If not, please delete.
Here are some interesting articles collected by a wonderful, dedicated also (probably trendy) person that may shed light on the various symptoms of Celiac and gluten intolerance. Too bad the doctors fail to read the current info.
It’s called the Gluten File
http://sites.google.com/site/jccglutenfree/
Some docs labor under the impression this is a disease of malnourishment in children.(obviously, it’s not.) Some think gastro symptoms must be involved (absolutely not true) and some think a patient who is overweight cannot possibly be a Celiac (I was 215 lbs. at one point and plummeted to 122. I am a 5’4″ woman).
There are many “celiac myths” unfortunately.
Celiac awareness month?. We need Celiac awareness– period.
Thanks for what your are doing, Gluten Dude!!
whoops, sorry for the typos
I meant
“thanks for what you are doing”.
bad day with the hands and the keyboard 🙂
it’s trendy to have sore hands, too
HELLO, IRISH HEART!!! It’s “healinginprogress” 🙂 I actually thought of you when I read this story. Oh, our Celiac community is so big and yet so small. I’m still…well, “healing in progress”. I’ve stumped my doctors because my body does not seem to be responding; my antibodies are still over 200. I could barely lift my head off the couch the other day, but my TMJ was also so bad that it actually hurt to lay my head down…and I also thought of you, then. You are an inspiration and a beacon of strength (((HUG)))
Hi sweetie!
I think of you so often and hope you are on your way toward better health.
yes, the Celiac Community is one big family, so it seems 🙂
I know this “thing” is a bugger, yet we can win the battle. It just may take more than one fight. Hang tough, kiddo.
Keep me posted via c.com! Remember we are warriors, girl!
IH
“Celiac awareness month? We need Celiac awareness – period.”
Awesome!
I also went undiagnosed for about three years when the cekiac was triggered and became active after a bout of c. diff caused by antibiotics. I lost 60 pounds in 7 months, my hair was falling out, I couldn’t remember things and began to have sunken eyes and look sketal. The celiac didn’t show up in a biopsy but rather in a blood test where my values were quadtriple what they should have been. The blood test had been misplaced for four months and I continued to have terrible diahrea and other symptons. The Gastro Dr. had put me on a bland diet of rice, bread and pasta to try to ease my stomach. Worst thing he could have done. When the blood test was discovered and I was notified I immediately went gluten free I was improving within three days and have never looked back. i think had that blood test not been found I would have died, no question in my mind at all!
I saw the dr. say the “trendy’ comment on the Today show and was appalled! Trendy, my ass………..it’s totally severe and auto immune
and at it’s worst can be totally life threatening.
Careful as I am I still get glutened and in fact got up in the night with bad stomach problems last night and don’t know where the gluten came from as eat mainly at home. It is frustrating. I steer away from the more processed foods that are coming the the gluten free market and have problems tolerating the xanthan gum also. Most of the time I do well but one has to keep on their toes and that you can still get gluten anyway. I also have had rheumatoid arthritis for over 50 years.
I enjoy your blog very much. It is nice to hear some of my thoughts and concerns expressed in your writing. Good Wishes!
I’d like to add that I was told I had “GERD” and “IBS” for more than 10 years before things got worse in late 2007 and the rest of the symptoms triggered in me.
Those symptoms are brutal, yet once I was DXed and started the gluten free diet, (and taking probiotics and digestive enzymes), I healed enough so those painful symptoms are GONE. For the first time in my life, I am not on the lookout for a restroom wherever I go.
Yet, how many people are DXed with those two things on a daily basis?
God forbid a doctor should think it could be something someone is EATING. Heal the celiac gut; heal the body. But, there is no money it it —if there are empty waiting rooms.
I’m pretty disappointed; my brother has a lot of very serious symptoms, including seizures, ataxia, and tremors. He has not been tested for Celiac Disease. My mom told his neurologist that I have very serious Celiac Disease and asked if his symptoms could be caused by gluten, and the guy straight up said NO! Now my brother will never get tested 🙁
But those are telltale symptoms! He should go to a GI who specializes in celiac if referral isn’t a problem insurance-wise. One of the first questions the GI at the University of Chicago Celiac Center asked me was history of seizures. It’s due to magnesium deficiency, and from what I understand, can become permanent.
I know, but he is very stubborn and won’t listen to me…ESPECIALLY now that the neurologist said it’s not possible 🙁 Damned inexperienced doctors shouldn’t completely discount things that they know NOTHING ABOUT!
that so sux – family are sometimes are the hardest people to convince – maybe if he can read this GS thing
http://www.biomedcentral.com/1741-7015/10/13/
(of course GS is really just coeliac people for whom the tests don’t work… because they were designed NOT to catch people on the false assumption that coeliac is rare)
PS he should find a new neurologist – that one is obviously crap – especially as there is coeliac in the family.
So very true!
Irish Heart, reading your story inspires me to stay strong and positive, too. I’ve been struggling to keep my head up lately with all the changes that celiac has required, and the painful learning curve hasn’t made it any easier to get well. I’m hoping that some time off from working (for the first time in almost 20 years) will help me heal. My last day at work is coming up soon. Scary, but after your post, I’m going to focus on the positive–and there is still plenty of that if I look for it. Thanks again for reminding me. 🙂
Jen,
I am glad anything I said helps.:)
I thanked Gluten Dude for being so kind and allowing me to share my story.
I know how difficult it is to remain positive on days when we do not feel well or things HURT or we are not very hungry.
I always say “Celiac–it ain’t for sissies”
It sounds so cliche, but the truth is: healing is one day at a time.
It took a long time for our bodies to get this way and it takes a long time to reverse the damage.
People are told upon DX: “just go GF, you’ll be fine”. That’s the biggest load of crap. There is a whole lot more involved. Follow up testing, vitamin supplementation, use of probiotics and digestive enzymes, dumping dairy for a few months, and in cases like mine, rehab of muscles and strength.
When others ask me how long does it take to feel better?
I say:
It is what it is– until it isn’t.
There is no handbook for this. No one size fits all. Some people are Dxed and they feel great in 6 months. Some people take YEARS.
I am happy to be GF. It saved my life. I am coming back from the walking dead.
I met a woman in her 70’s who told me she was DXed 9 years ago. Every year, she feels better and better. She never knew what “good health” felt like until now. She thought that the way she felt her whole life was “normal”. She gave me a hug and told me to just hang in there. I said “Great, then. I’ll just keep at it –whoohoo!!– I’m gonna be a health old broad”.:)
If you are struggling with negotiating a GF life, there are a few ideas I can give you. But do not despair. I promise you, you will eat well and you will find healthy and yummy alternatives. You won’t miss gluten and you surely won’t miss feeling like hell every day.
Chin up! You have a whole community of people who “get it” in your corner.
IH
Irish Heart, I’ve tried no dairy, soy, corn, no processed food (even GF) and house is 100% GF, including our toiletries. I’ve also tried SCD/GAPS, and it’s helping a little, but slowly and in small increments. If there is anything else that I should try, please let me know. I’m still in the first year (DX’d September), and feel like I’m still learning everyday.
Neurological, arthritis in hips/back/knees, migraines, blistering painful DH and fatigue are making it nearly impossible to function. Celiac doc says “peripheral symptoms” are more stubborn to recover. Trying to stay positive, but I can’t help but feel down sometimes. Thanks goodness for my sweet, supportive husband and the online celiac community!!
I understand and my heart goes out to you.
You have made all the dietary alterations I know of. Some people like me (and you, too I guess) take longer to heal.
I am 18 months in and I am still having problems.
My doctor says “give it time”.
I am. But no one lives with the 24/7 deep bone and muscle pain I have and sometimes, It makes me cry. Simple tasks are arduous and I create more pain sometimes just because the muscles are so weak. All MRIs, etc are “normal” so my doc suspects it is from prolonged malabsoprtion.
The neuro issues resolved more slowly for me than the gut issues. I still have burning and parasthesia –but the intensity level is down.
If it were not for my amazing husband, there were times during this ordeal when a swan dive off a cliff sounded appealing.
I uttered the words, “I’d rather be dead than live like this”. I guess I did not mean it. I fought to find an answer and well, I’m still here. :>)
DH is a bugger. My understanding of it is that it takes longer for the skin lesions to heal and resolve. My friend has that and she finally got rid of them after 19 months.
I hope you find relief soon. I suspect you have tried the low salicylate diet for the DH? Some people swear by it.
I pray you get relief soon!
Wow! My history sounds almost exactly the same, except I suffered for almost 10 years before “diagnosis” (although some would argue that I haven’t been diagnosed because every test, including biopsy, has come back negative). Throw in 2 major surgeries for degenerative disk disease & make it $100K+ in out of pocket expenses, plus a Nursing career lost to GLUTEN!! The lack of knowledge in the medical community about what has, unfortunately, become a very common illness, is appalling. Medical professionals have a DUTY to ensure that they are self-directed, lifelong learners. They have a professional obligation to educate themselves appropriately so that they do not harm but accurately diagnosis & treat illness & disease in their patients. As a community we must hold doctors such as Keri Peterson to the professional obligations upon which they are licensed to practice. People who live in the state where she is licensed should make written complaints to the state board. Not sure what it’s called in the US, here in Canada it would be a provincial College of Physicians and Surgeons.
Love the “never say die” attitude – it could be the celiac motto. I think all of us have had to adopt it at some point or another!!
Keri Peterson should lose her license to practice, period. She is nothing short of a quack. I think we should bombard her with messages showing our disapproval. Her Twitter account is @drkeripeterson
I’m absolutely horrified about what you had to go through. What a horrible nightmare. No one should be made to suffer that much.
I suffered for years before diagnosed, although not to the degree in which you did. Some of the symptoms came on gradually and others came on more sudden.
In the late 1990s, I had a series of severe yeast infections that did not go away for months, even though I tried every medication I could to get rid of them. I was also feeling very run down and tired.
Soon afterwards, I developed acid reflux. I took pills for that and managed that ok. But as the years went by, I felt more and more exhausted (I’ve had anemia in the past). I also started losing a lot of weight, even though I ate a lot. Fortunately, I don’t have any other GI symptoms, though. I had also developed seasonal allergies of headaches and sinus pressure. I had gotten tested for those and was told they were “pseudo-allergies.” I also was having problems with acne, bruising, anxiety and brain fog.
in 2001, I was in a very bad train accident (fortunately I wasn’t badly injured, but deeply traumatized) and later that year I had a bout of Lyme Disease. I’m not sure if these events “triggered” the Celiac Disease or not. But things seemed to get only worse with my health after those incidents.
I was having a real difficult time sleeping, too. I had restless leg syndrome. For years I just figured that I had a lot of various and strange health problems. I saw numerous doctors, but none even suspected CD. It wasn’t until I saw a sleep doctor in Indianapolis for the restless legs that she had me tested for CD. I had never even heard of it. It turned out that I had it.
In May 2010, I was diagnosed by a very mediocre doctor who said that I could cheat when I felt like it and eat gluten from time to time. I also saw several other doctors who dismissed my problems as being “psychological.” One GI “doctor” told me that i had “mild” Celiac Disease and that I “might benefit” from going GF.
Unfortunately, I was quite sick for a long time after going on the GF diet. My antibodies continued to raise, not lower. I continued to feel crappy. I was being told that I was not being strict enough with cutting out gluten. I got a repeat endoscopy, which fortunately showed that I was healing. Soon after, I got a blood test which shows that my antibodies are finally dropping.
But I was on this diet for nearly 1 1/2 YEARS before I started to get well. I was beginning to think that I had non-responsive or refractory CD. Many of my friends doubted that I had CD at all, and thought I had some other undiagnosed disease. But my blood tests were all positive, my endoscopies showed damage and I also have the Celiac genes, as does my mother. I just kept thinking that it had to be something more, like dairy. But my doctors kept telling me that that wasn’t it. I tried cutting out dairy for a month and felt much worse. As soon as I ate dairy again, I felt better.
Anyway, I was getting pretty depressed because I wasn’t healing like many say they do (I hear all these people saying they felt better overnight or in a few weeks…needless to say, it took me a good 1 1/2 years).
I also have an added challenge that I don’t get sick if I eat gluten. It harms me in the long run, but I don’t get any obvious symptoms that I’m aware of if I accidently ingest gluten. While that may sound great, it’s also really a challenge because I have no way of telling whether I’m accidentally ingesting gluten.
Anyway, I’m happy to say that many of my health problems have either gone away or have diminished a lot now. The yeast infections have eased up a lot, as has the acid reflux and some of the bruising, nose bleeds, acne and brain fog/anxiety. The restless legs have also gotten much better. My seasonal “allergies” have disappeared. I have been putting on weight (now I’m having to watch my weight in the first time in 12 years!)
It’s taken a lot of patience to get to where I am today. But I’m at a much better place now.
Wow!!!!!
Wow what a story – so glad you got it figured out in the end. I hope that you are on the path to recovery now.
I also suffered for a couple of years before being diagnosed. No where as bad as you but I got tonsilitis all the time, terrible bloating, stomach pains etc. Doctos always tried to find a quick fix – I was always on antibiotics or other drugs. Finally I had had enough and went to a natropath who picked it straight away. I used to get tonsilitis about 4 times a year among other sicknesses and since being diagnosed in 2009 I have not had tonsilities once!!
I hope that doctos become more educated on the different symptoms and start testing people so they don’t have to go through all the pain.
Oh, my heart is breaking!
I just shared this post on my FB page .
Last night I listed to the GI doctor on The Doctors on SiriusXM.
Two people I wondered about celiac–one a 37 year old woman with severe Vit D deficiency and the other a man who has vomited and had nausea since 2007 with “all tests” coming out negative. Niether the callers nor the doctor suggested the possibility of Celiac/food intolerances/allergies.
My GI’s Nurse Practioner REFUSED to biopsy test me in 2006. My blood test was negative, I have siblings and aunts with celiac and another AI illness. All raising my risk of having Celiac. I went Gluten Free and have huge bathroom problems when I eat gluten. the NP wants to test me now, NO THANKS.
If you and I can spot a celiac or gluten intolerant a mile away, what’s wrong with the medical pros?
My friends call me the Celiac Whisperer :>) ….I run into people and somehow, they end up telling me what’s going on with their health. I can tell anyway–they all have that wounded, exhausted look on their faces and they say ” I’m sick all the time and the doctor says I’m fine”, and I tell them they need to see my doctor and be tested. ASAP
A dental tech, our vet, a neighbor, the guy who brings me the UPS packages. I am not kidding.Some of my own family members even. But I tread lightly. No one wants to hear about
“gluten-free” and they do not wish to be tested for Celiac, despite my diagnosis..
It’s of epidemic proportions and no one believes it.
It does no matter if people blood test neg. It happens frequently for various reasons, including IgA deficiency.
If someone feels better OFF gluten, then that is the answer!
How awful. 🙁
I basically just took myself off all gluten/wheat without any supervision due to “useless” doctors. It was my optician actually who was like…”Have you ever thought of going gluten/wheat free??” This was after I’d already gave up Cheese, Chocolate, Caffeine & Citrus” in the vain hope to cure evil migraines and other such problems I was suffering with!
To this day I’ve not been officially tested…but as I feel like 100000000000000000000000000000000 times better I’m not going “on gluten” just to maybe have a negative result or a refusal to test me anyway.
Sarah, I haven’t been tested either. I feel sooo much better.
I have an autoimmune illness, plus I have my siblings and siblings of my parents who have celiac and yet the GI’s NP didn’t think it necessary to test me when I asked in 2006. (insert eye roll please).
In 2009 she thought maybe they could test me, but that I wouldn’t need to eat gluten . HUH? how’s that work?
i said there’s no way I was going to voluntarily eat gluten for two weeks so the test could be accurate, unless she was going to pay me to be off work for a month to get the gluten out of my system.
I am the same…I gave it up around 2005/2006 time and very very recently they commented maybe I need a celiac test but it was like…you should have given me one before, I am NOT, as you say, eating gluten for two weeks…well actually I got told six weeks and that I’d need to eat it three meals a day, so cereal etc.
As I have chronic pain and fatigue condition I DID NOT see this as a good idea!! I still have the condition and have done for years along with digestive/migraine issues etc…but seen as a small bit of gluten sends me into a spiral of pain it didn’t seem worth it just because I “may” be able to get gluten free products on prescription or a nice “official” note on my records. I also have psoriasis and ear trouble and cutting out gluten helped that too. =/
I’m just relieved my optician mentioned it or I’d still be suffering now until the doctor finally tested me!!!!
It still shocks me that gluten can do so much damage to someone with an “intolerance” as I was very skeptical when my optician suggested it. lol
Glad you feel much better, just shows sometimes you just have to take some things into your own hands. 😐
The Univ, of Chicago Celiac Disease Center suggests you would have to gluten challenge for 2-3 MONTHS for the best celiac testing results.
I would NEVER do that to myself, as the risk of neurological symptoms alone would be more than I could bear and so I cannot imagine any of you doing it for a DX. To me, the gluten challenge is just barbaric.
Just FYI–There is no substantial deduction on your taxes for dietary gluten free foods (believe me) as you can only deduct the difference of each GF item as compared to a comparable “regular one”. Plus, you would have to have spent 7.5% of your income on medical expenses before you can deduct the first dollar. Plus, there is the risk of being audited because it’s a red flag to them, so no celiac I know has done it. I know one patient of my doc’s who did and she was audited and I decided it was not worth it.
You know your body best. If being off gluten makes you feel better, then you need to stay this way!.
Personally, I think everyone would be better off without gluten. We cannot really digest it to begin with,
I’m located in England, here we get our food on prescription which currently is about £7.40 a prescription so you get a total of about 18 units of food per month so for each £7.40 prescription. according to ceoliac UK anyway.
http://www.coeliac.org.uk/gluten-free-diet-lifestyle/food-on-prescription
Still not worth the suffering though as I rarely buy gluten free products, I just eat natural non-containing gluten products 95% of time.
Wow! Sarah, I had no idea they did that in England.
Thanks for the link, so I could read about it.
The US is so far behind on things like this.
I am thinking, in particular, of some people I know who could really use this help. They are low income and the food pantries are not
stocked with gluten free pastas or breads. A prescription for GF food items would help so many people.
But, I do understand that in your case, it is not worth putting yourself through the pain of a gluten challenge, especially if you rarely consume these foods.
I am with you, less is best. Whenever I try too many GF packaged foods, I don’t feel quite right. Not sure why that is. We make our own bread and usually eat naturally GF foods, too. I cannot eat foods with MSG, soy or too much sugar anyway, so that helps keep me on the straight and narrow.
I have a rule for myself now. If a product has more than 5 ingredients listed, and I cannot pronounce any of them, then I do not eat it. :>)
Before I became very ill from celiac, I did not always adhere to this rule.
I actually eat better now than I did my whole life.
Mixed blessing? Wake up call? Maybe both.
We are our own best health advocates. As my story shows, no doctor helped me figure out what was killing me. I did.
Best wishes to you!
I also mostly stick to the “no more than 5 ingredients” rule 🙂 I find gluten free ready-made products are really stodgy and make me feel uncomfortable if I eat more than 3 teeny tiny slices of the g/f bread you can buy here.
Irish Heart & Sarah,
We pretty much have that rule as well–the 5 ingredients or less. I definitely don’t eat things I cannot pronounce.
I love my Chobani 0% fat yogurt (and the greek gods variety too, though the fat content kills my diet).
I’ve tried the regular yopliat the other week (the one without splenda) and it gave me what I can only assume was heartburn.
I also cannot do any fake/manmade sugars, and I try to stay away from soy, it gives hot flashes pretty much right away.
Now that is a rule to live by…if you can’t pronounce it, don’t eat it.
Fake man-made sugars don’t agree with me either, I can tolerate tiny amounts because I have too as medical companies insist on putting things in their medications I like to avoid…i.e. man-made sugars, E number colourings and lactose!
I also cannot have dairy…but I try and have soy but also almond, coconut or hazelnut milk too for variety! Just have to make sure it contains B12, calcium and vitamin D.
Celiac Disease is an expensive disease. There is no getting around that. And here in the US, many people are still in the Stone Age about it. I do wonder how people with low incomes can afford to have the disease, literally. I read an article once of a mom who had a daughter with CD. They were poor, though, and had to get their food from a food bank. There was no GF food there. And they couldn’t afford to buy their own GF food. So the mom fed her daughter regular Kraft Mac and Cheese even though it gave her daughter bad dirrehea. She felt bad about it, but said she had no choice. That is truly horrible 🙁
I advise everyone with Celiac Disease, regardless of their affluence, to contact their local food banks and inquire about how they accommodate families with special dietary requirements. We did this in Vancouver, and they had never thought of it before, but now they are working on it. Sometimes the idea just needs to be brought forward. This would have been a great month to promote donating a gluten-free item to the food bank…I’ll have to remember this for next year! But if the food bank is more aware of it, these small changes can take place so that this doesn’t happen 🙁
Great call Sassy. Thanks!!
Rachel, this is why (when I am more healthy) I will make sure local food banks have enough GF food stocked! I am going to make it a priority. I have always donated to them, but until this disease hit me, I never would have thought that this is something that is necessary.
I read an article in Living Without magazine where someone spear-headed this effort in her community and why I KNOW it is essential in mine.
My friend–who lives in OK– (and who is low-income because she lost her job because she was so ill from CD for 7 YEARS) recently had to resort to asking for help from a food pantry and they had nothing to help her out. They did find a group to give her some fresh produce, which she appreciated.
If there is ONE thing we can do as a Celiac community, it is to make sure local food pantries have some GF supplies like pastas and crackers which have a longer shelf life.
Also to campaign, for hospitals/homes etc here to actually HAVE gluten free/dairy free too as last time I was in hospital I got offered toast (!!!) or cereal (!!!) and then for dinner soup in a cup (!!!). I don’t think they were very educated at all on “special diets”.
I’m not sure we have food banks around here, never heard of them!
I suppose CD suffers in UK are blessed if they can actually get an official diagnosis, because if we are below a certain income we get prescriptions free so therefore you’d get GF food for free.
I will say that at the one hospital in Omaha where mom was, they were good with Celiac for us family members, we found out towards the end they even had bread on hand for patients.
Which is COMPLETELY a 180 from a world renowned Stroke rehab place where she was transported later. . . their salad bar was pretty basic and they usually had mac & cheese or other obviously gluten entrees. . . Dad ate with mom one time and he requested nothing BBQ (which was the “theme” of the day). I came back with a small side of mac & cheese for him (he’s not celiac) and he surprised.
NOW, mom’s at the local nursing home where they don’t understand diabetic diet. THey give her insulin in the morning and evening and let her pick out whatever she wants to eat, including dessert for lunch and dinner meals. UGH.
Sorry to hear Amy. We’re making progress…but it’s slow progress.
This is almost exactly my story so I won’t add to it. The only positive thing I can say about my decade long experience of being told there is nothing wrong with me is that I no longer trust the medical community to tell me I’m not sick, I know 1000 things I don’t have having been subjected to so many medical tests, and I would kick ass on Survivor because they don’t eat.
Your post today was really interesting! I work in a concert and basketball arena where no one is allowed to bring in food or drinks. Of course there is nothing here that I can eat, but I bring my own food to work. However a show or two ago, I had a call from a woman, she said that her daughter had seizures and needed to eat every half an hour and needed special foods. I had to take it to management who needed to check on policies and call her back… check policies??? Are you kidding??? They did allow her to bring the food in, but common sense would dictate an answer without having to check into it. They do a sercurity check so I knew that their bags would be searched so I had to make sure people knew to expect them.. but at least she wasn’t made to feel like a thief in the night… sneaking food in.
A friend had an issue with her grandson who is autistic and has multiple food allegies. A local restaurant would not allow them to bring his food in even though the rest of the family was eating there. Even after showing their epi pen, and telling them that he needed to eat safe food, they gave them a hard time. I would have left… People are bizarre and have no sense.. what ever happened to customer service???
Another time I went to a baseball game, here on campus, and took a small bag of carrot sticks in, and got busted at the gate by the food nazi’s looking in purses. They made me get out of line and called a manager and embarrassed the heck out of me. To make things simple I said I was diabetic and needed to eat healthy food not junky hot dogs and hamburgers, eventually after much ado, they let me take them in. This was several years ago, but it was so embarrassing I never went back.
This was FANTASTIC. You know, I believe that part of the reason many of us Celiac patients don’t get diagnosed quick enough, or non-Celiacs are so uneducated, is that many of our symptoms are SO EMBARRASSING. I know that my natural instinct was to keep my “issues,” bathroom and otherwise, private. It wasn’t until I started having neuropathy symptoms that I finally got freaked out enough to start making big strides to find the source of my problem. It still took years for anyone to make the connection between all the GI symtoms, skin symptoms (psoriasis since I was 9 yrs old), neuropathy, etc. And guess who was first to make that connection. ME. Not my doctors…ME. But, if it hadn’t been for some very open and honest people with Celiac, I may never have known that all the issues I’d been having for years were due to a bigger problem. I may never have realized that I wasn’t just weird and doomed to suffer these things for the rest of my life. I thank God I found out 4 years ago, rather than 20 years from now. This blog post has shed some major light for many people. Thank you so much for sharing! I will be tweeting this out! 🙂
The celiac patients seem to be light years ahead of the medical community when it comes to our disease. But I am hopeful they will make progress.
And, the one thing I left out of my original rant here? ….was when I brought my eureka moment back to the Primary Care doctor after searching for 4 years and going to every specialist he recommended (and DOZENS on my own)…he went pale and flipped through my thick chart, seeing the 12 years of GI pain, heart palps,(he had me wear a holter monitor 3 times); the thyroid, GYN and urological issues; miscarriages; early menopause, hair loss; the inexplicable anxiety (he suggested a psych consult) and raging insomnia (for which he sent me to a sleep lab), the bone pain and loss of bone density, the burning sensations and nueropathy (he sent me to 2 neurologists for that), the rheumies, The MRIs, etc., treating me for B-12 anemia…blah blah blah…. and he said:
OMG, that’s it. !!
I said quietly, “Yes, I know.”
The sad irony of all this?
His own children have CD, but he admitted he did not know it could “manifest this way in adults.”
I spent 12 years in his care. He did not put 2 and 2 together, even as I became nearly non- functional.
THEY DID NOT TEACH THIS IN MED SCHOOL.
But I bet they do now.
Irish Heart, that is amazing and sickening. The sad thing, my PCP says they rarely teach anything about celiac in med school. She thinks it was maybe one paragraph on a page. She’s in her 40s, so I HOPE things are different now, but I doubt it. There’s not enough money to be by pharmaceutical companies. I’m a little jaded, I know.
You are not jaded. You are realistic.
We have said the same words in our house.
No money in “treating ” celiac disease. No medications necessary. (unless of course, it goes unDXed for so long and we acquire MORE AI diseases and complications–which seems to be the norm for anyone being DXed over 40)
Let’s face it, if we are all well, there is no one in the doctor’s waiting rooms.
If they would screen at-risk toddlers for CD, they could stop the madness before it even starts.
It never ceases to amaze me – the shear incompetence of it all. Like people who can’t keep food down are going to test positive – they also seem to think that a blood test that only catches about 80% of affected people is a good screening test – and then only if they eat a boat-load of wheat.
(Doctors seem to think 100% specific means it will catch everyone – what it means is you test positive for this you’re coeliac – the “gold standard” biopsy is actually less specific than the bloodtest because of sampling issues) it also means a lot of very sick people are told it’s not coeliac with a completely unwarranted confidence.
So roll on the trendiness of not eating poison, I say! The more the merrier 🙂
I understand exactly what you went through, because I did too. Fortunately for me my hell lasted about six months instead of three years. Every doctor I saw wanted to diagnose depression, when I knew that wasn’t it. They were extremely arrogant and condescending. They did not listen to my symptoms or really care about finding out what was really wrong with me. So I kept researching diseases, and figured out myself that I have celiac disease. I’m still recovering, after being gf for about eight months. I would be much further along but I’ve gotten sick repeatedly from so-called gf foods, like Glutino bread and Bob’s flour. It seems all of us have suffered from the ignorance of doctors. My personal theory is that the reason they don’t know about it is because there’s no money to make off it, and if they diagnosed us correctly, the gravy train of endless tests and visits would end. Since this is my first post on glutendude.com, I would like to thank dude for this website. It is one of the few places we can exchange honest information and try to help each other.