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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I Moved From Silent Disease To Not Silent!
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7 posts in this topic

In August 2010 I was finally diagnosed with a failing gallbladder after 1 1/2 years, and was also diagnosed with celiac during the testing series. I never thought I had symptoms except my stomach always felt full. Now, nearly 1 1/2 years later, when I have gluten, starting with the following morning, I have GI troubles for about 1-2 weeks. Anyone else experience this and have any theories why this happens?

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In August 2010 I was finally diagnosed with a failing gallbladder after 1 1/2 years, and was also diagnosed with celiac during the testing series. I never thought I had symptoms except my stomach always felt full. Now, nearly 1 1/2 years later, when I have gluten, starting with the following morning, I have GI troubles for about 1-2 weeks. Anyone else experience this and have any theories why this happens?

It happens because you are still having gluten. You have to totally eliminate it. Even if you are only eating it once in a while you are still damaging your intestines. :(

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I went symptom free for many years, it's only in retrospect when I've read articles and books about celiac disease that I go "Wow, that explains that! And that!)

Surgeons chopped out my parathyroid glands and I didn't get better. I got even sicker.

My thoughts (and they're just my thoughts) is that once the disease went full blown (could have been borderline celiac disease for years, similar to borderline Diabetes), our fighter autoimmune cells were happy with randomly attacking our various organs and neurological system, then gets "caught" be attacking one repetatively.

We cut out gluten, they get hyper! We've removed their warrior and they're on the prowl. We were feeding them filet mignon and now they get a wee crumble of ground beef and they're in a frenzy.

At lunch, I had a frozen microwave dinner today that was labeled gluten-free that cost $6.50. It had no ingredients listed that I have problems with. Less than an hour later, I had uncontrollable D. I think this is going to be a minimal "event", I had two doses of Pepto Bismal today and I was able to attend a class tonight that was a half hour's drive away.

If it had been a serious glutening, I would not have been able to finish the day at work, drive to the class (wouldn't have felt safe driving), would miss work tommorrow and would have pretty much confined to the home for three or four days.

I broke a rule of not trying new foods until Friday (so that I have the weekend to recover if they don't work).

Hope that helps, Chopper.

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Diane, only once did I intentionally eat a small pretzel to see what would happen and that was after my biopsy came back that my villi were healed. I wanted to know what to expect when I was accidentally glutened. My sister in law accidentally glutened me 2 weeks ago and I'm still feeling the effects.

Marilyn, thank you for the illustration, it makes sense. When they did my enteroscopy about 1 1/2 months ago, he could see widespread gastropathy in the small intestine and stomach. He said that was evidence that there had been inflammation and it was healing. He "thought" he saw active flattened villi, but in essence, it was evidence of where there once had been inflammation in the stomach and flattened villi in the small intestine, but it's now healed.

It confused me why it started as a relatively silent disease, now I get terrible cramping and diarrhea when I accidentally get glutened.

Thanks,

Chopper

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I hope you're feeling better, Chopper. It gets better.

If you ever want some ideas about safe foods to take to your brother's house, just ask. For instance, you can get a Wendy's chili and baked potato. I don't personally care for their sour cream or margarine, (but I could be neurotic, just so many additives), I can have a great meal with a baked potato, hot chili, and some real sour cream and/or real shredded cheese from a grocery store without getting sick from SIL's dinner.

Even if she can intellectually understand celiac disease, her cooking equipment and prep zones are probably contaminated. It can be awkward at first when you bring your own food, but my family has been cool about it. I probably felt worse than they did when I brought my own food the first tim. So just a suggestion, take your own food. It's not about the food, it's about getting together. :)

In retrospect, they're probably glad that I bring my own food.

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I'm a bit new to the celiac-specific thing but I've been dealing with food intolerances for years and it seems to be pretty common that once you eliminate a food your reaction to it gets worse than it ever used to be. Its as if you body is finally letting down its guard and saying "Wow, I didn't realize I could feel this good" and then when you have the offending food again your body figures it has to REALLY object now, to make sure you don't do that again. It seems to be part of the healing process. With other foods, if things go well, the reaction will gradually lessen as you heal until you might be able to to re-introduce that food again. From what I'm learning gluten is different from most foods in that respect though.

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I'm a bit new to the celiac-specific thing but I've been dealing with food intolerances for years and it seems to be pretty common that once you eliminate a food your reaction to it gets worse than it ever used to be. Its as if you body is finally letting down its guard and saying "Wow, I didn't realize I could feel this good" and then when you have the offending food again your body figures it has to REALLY object now, to make sure you don't do that again.

Thanks for your reply. What you said makes sense. I've done so much reading online and I can't believe this is one thing that I haven't read about. I think it should be discussed more because the doctor and I were wondering if I had refractory celiac. I now have the peace of mind that my villi have healed and the GI trouble I'm having is probably from some accidental cross contamination. No one prepared me for this possibility.

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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
    • What does weak mean?  Like you squat down and and you can not get back up?  Or are you fatigued?  When you said blood panel, was your thyroid tested?  Antibodies for thyroid should be checked if you have celiac.  So many of us have thyroid issues.  
    • We are not doctors, but based on the results you provided, you tested negative on the celiac screening test.  You could ask for the entire celiac blood panel to help rule out celiac disease.  The other IgA that was high?  It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid).  In your case, the TTG IgA test works.  Outside of celiac disease, you might have some infection.  Discuss this with your doctor as he has access to your entire medical file.  I would not worry about it though over the weekend!  
    • See: http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ Take a copy of that with you or mail it to the doc. How many endoscopic biopsies did they take? Those with dh tend to have patchier damage than "normal" celiacs.
    • Ironictruth, I think that is a very insightful thought. since different antibodies present for different body systems all the ways gluten affects the body is still not well understood. Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today. I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet. https://www.hindawi.com/journals/cggr/2012/302875/ notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient. quoting "The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years. ***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today. good luck on your continued journey. posterboy by the grace of God,  
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