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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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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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