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hannahp57

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hannahp57 Contributor

My older sister and I have both been on a gluten free diet for five years now. we were diagnosed without a definitive town because out GP was not very educated about celiac. he recognized that we had similar symptoms, they fit with celiac, and the gluten free diet did wonders for our health. i am wanting to do a celiac test just to certain because more research leads me to believe that in the unlikely chance that the diagnosis was wrong, there may be another problem laying dormant in me.

now my real question here is actually this. my twin sister had never had issues until about three months ago. not going to be too graphic because it is not my body but her symptoms sound mostly gastrointestinal. some constipation, then every few days a lose stool with lots of cramps, bloating, and nausea. then after she uses the bathroom she feels a little bit better. she has also put on about twenty pounds in three months (and has ruled out pregnancy and cut out dairy). since both of us have been gluten free she wonders if she should try it. she doesnt have any insurance. is there an affordable way to test? it could be through a doctor if they wont charge large amounts of money for both consult and test. but probably the better option would be an in home test if there are affordable options... does anyone have any helpful info i can pass along to her? or at least a place to get started? i recommended an enzyme for digestion improvement and a food diary to help in case she does see a dr. any other help is appreciated. thanks in advance everyone!


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    • 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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