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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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3 posts in this topic

I'll try to keep this from turning into a novel, but... no promises ;)

 

Back in November, I ended up in the hospital with severe stomach pain and an inflamed small intestine. Now, I've had stomach issues my entire life, but nothing even remotely close to this. After several days on a liquid diet and IV antibiotics, my condition improved, and I went home. I had a number of scans, as well as a colonoscopy and an MRE of my intestines. Everything turned up clear. No one ever mentioned celiac or gluten intolerance as a potential issue. 

 

Now, the problem is, I never stopped having that stomach pain. It diminished after I got out of the hospital, but it never completely went away. It's been kicking around with varying intensity since November. In early June, I went back to my GI and told her I wasn't feeling much better. She noted that my small intestine still felt swollen to the touch, gave me a bag of different medicines to try, and sent me for follow-up bloodwork. My blood work showed no signs of elevated inflammation markers, so they basically told me to try the medicines, go on my merry way, and call if I had any problems.

 

After being in pain for so many months, my level of frustration was high. No one could tell me what was wrong with me! My parents, who are both gluten-free by choice (no intolerance or celiac), have been begging me to try giving up gluten for months. I resisted mightily (bagels and pizza are my favorite foods), but by last Friday, I had become so desperate, I decided to just try it. So I stopped eating gluten cold turkey.  It's been a week and my stomach pain has greatly diminished. I had several pain-free days this week, and I can't remember the last time I had a pain-free day, never mind more than one in a row. I've definitely made a few missteps (Chinese/Japanese last night was a dumb decision), but overall, I feel great. 

 

My question is - I haven't been formally diagnosed with anything. Should I go through the steps to figure out if I actually have a gluten intolerance, or can I just trust this anecdotal evidence? I've basically thrown my hands up as far as Western medicine goes at this point, but I can see that there would be importance in trying to figure out if this is actually the problem or not. Suffice to say, it's only been a week, so maybe eventually just avoiding gluten won't work if the issue isn't actually gluten-related. 

 

I also have a couple of other questions - I've noticed that I've felt more dehydrated and headachy than usual. Is this normal for the early stages of gluten freedom? I'm trying to work on upping my water intake, which I should have been doing anyway. My one other concern is that long distance running (marathons and the like) is my favorite hobby, and I'm wondering how people deal with being gluten-free and still maintaining necessary levels of carbs and things like that. I was SUCH  a carb-a-holic, and all of it in the form of breads and whatnot, so this is a big change for me.

 

Thanks in advance! 

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I was recently diagnosed with celiac disease, but my husband's been gluten-free for 12 years at the suggestion of his GP/PCP and my allergist.  My celiac disease came out of the blue (no symptoms other than anemia and Hashimoto's Thyroiditis).  Does my husband have celiac disease or intolerance?  We'll never know because it would be CRAZY for him to consume wheat again just to get a diagnosis.  I did the testing but just for my families sake (there are others who are having issues).  It's a decision you have to make.  Some need a definitive answer because it helps them adhere to the diet.

 

As far as marathons go, no problem if you feel strong and there are plenty of gluten-free carbs!  I cycle (just up to 50 miles, but more by the end of summer) and manage to eat a protein in the morning, with something like quinoa, sweet potato or rice porridge, and fruit for breakfast and I consume, homemade gluten-free cereal bars, cookies, banana, dried fruit, Gu and Gatoraide during my ride.   I did a 1/2 marathon two years ago and Gu and Gatoraide sustained me just fine.  

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Because you have already determined that gluten is a problem for you, the only reason I can see for testing would be if it would help you stay 100% gluten-free. Even having gluten once every two weeks can set a celiac back for a month, and it really is no better for those with non-celiac gluten sensitivity (NCGS) - they have every other symptom that a celiac has except the intestinal damage.  You'll have to be careful to avoid small amounts of gluten, cross contamination, and not take risks in restaurants; if a test will help you with that you might want to go for it.

 

Serum (blood) antibody levels typically don't fall to normal as soon as you go gluten-free so if you went to test ASAP, you would probably still get an accurate test. The longer you are off gluten, the less likely it is that your test will be accurate. If you decide to test, this is the full celiac panel:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IgA
  • total serum IgA
  • AGA IgA and AGA IgG

The first three tests will indicate if there is damage to the intestinal villi as is seen in celiac disease; the first test is traditionally a doctor's favourite.  the serum IgA test is a control test to make sure you make adequate amounts of IgA for the tests to be valid; about 5% of celiacs don't. The last test is an older test that shows glian sensitivity; it is thought by some to show both celiac disease and NCGS.

 

This report, on pages 11-12, discusses the tests in more detail: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

gluten-free substitutes (like bread and pasta) actually have a higher GI index than most wheat products so if you need a sudden sugar boost, they are good. It is probably better to stick  to veggies, fruits, and meats - grains, in general, aren't as good for you as fresh whole foods.

 

Best wishes in whatever you decide to do.

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