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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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    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
    • Along those lines, many Americans are now pursuing gluten-free eating. Gluten ... Diagnosis of celiac disease typically requires a history and physical ... View the full article
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