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New To This And Needing Advice

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:


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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    • Hi AWOL, Since you weren't able to complete the 2 weeks gluten challenge for the endoscopy the results are not necessarily reliable.   So to be err on the side of caution I think you should assume you have celiac disease.  Your doctor should not assume you don't have it either since the challenge was not completed.  He has no proof that you don't have celiac disease.  He does have evidence that you have negative reactions to eating gluten though.
    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
    • Hi Sunshine, There is a program called a 504 plan that some schools will follow if you get one approved.  It helps the school identify proper ways to deal with a child's particular needs.  Probably it is helpful to have a 504 plan, but they may require a formal diagnosis for it.  I suggest you talk to the school and ask them about it.  Tell them the situation with the kid and about the stress he would need to go through to get diagnosed.  They may be willing to work with you without a formal diagnosis.   I am not saying you absolutely have to have a 504 plan for him.  School districts vary and some may be more accommodating than others.  A 504 plan may give you certain rights, but I  am no expert on them. The gluten challenge is 12 weeks of eating gluten for blood tests.  The payback for being formally diagnosed is questionable IMHO.  Treatment is the same regardless, eating gluten-free for life.  One thing to be aware of is that celiac disease has a genetic factor.  So he got the gene from one of the parents.  Anyone else in the family could have celiac develop at some point.  So testing every couple years for all family members is a good idea. Welcome to the forum!
    • Thank you everyone. I appreciate all of the information and support.  I am feeling overwhelmed right now and it was really getting me down yesterday. I don't feel so hopeless now. 
    • Okay. I think I will start with an allergist and a dietitian. 
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