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Gluten-Free And It Helps. I Think.


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How long Gluten-free before you felt better?  

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When I was born, the doctors told my parents I had "failure to thrive". I was tentatively diagnosed with ADHD when I was 4, and this was confirmed in 1st grade. I was perfectly fine, on ADHD meds, until 8th grade, when puberty, clinical depression, and digestive problems hit. My doctor first diagnosed the digestive issues as IBS, as this is apparently common in adolescents going through puberty. However, unlike the digestive problems of the other adolescents who actually had IBS, mine didn't go away. They got worse. So did my periods and PMS. Seven years later I finally went back to the doctor about this. For the last six months I've been poked and prodded being tested for all sorts of things, from hemorrhoids to Crone's disease. They finally tested me for Celiac's. I'd like to point out that not all my symptoms fit Crone's or hemorrhoids, but they all fit Celiac's. I'm rather upset given my history that my mother actually had to tell my doctor to test for Celiac's. He'd already given up. Anyway, the blood tests came back negative, but I heard the this is actually quite common even among people who have Celiac's. Out of desperation, I went gluten-free and for the first couple weeks I felt much better. Then I got my period, and all hell broke loose again. Now that my period is over, I'm feeling better again. I also accidentally ate gluten 3 times since I went gluten-free and each time I had pains and the 3rd time worse than pains. How long should I go before I talk to my doctor about my little gluten-free experiment? I mean I've had good periods before with a few bad days sprinkled in, and they usually happened with the period suddenly causing havoc. How long before I can say the gluten did it? I want to get an actual diagnosis, because I have to try and get accommodations at school for the food, and they'll give me a hard time if I don't have a diagnosis. When should I go to my doctor, and what should I say?


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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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