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How Else To Get An Official Diagnosis?


misslexi

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misslexi Apprentice

I live in Ontario, and I can get help from the government to pay for my food with an official diagnosis.

I have been gluten free since November 2009, after years of suffering and trying to figure out why I've been so sick, and fighting with doctors just going off gluten was the only thing we could think of to do. I already had to drop out of school and move back in with my parents, and I was close to failing all my classes etc. No one believed me that I was sick.

I have since gotten a new doctor, and being off gluten has been like night and day. There is no way I can knowingly put that poison into my body again. I would have to take time off school and move back in with my parents again if I were to start eating gluten again to get accurate test results. I recently had the celiac screening blood work done, with only half the results back, but they were normal.

Is there any way other than that test that I can get an 'official' diagnosis? All my tests have been negative over the years, my old doctor actually wrote in my file that it was all in my head. They lied to me about what tests they did, other medical professionals lied about things...its been a mess. Can the fact that I had a huge number of symptoms of Celiac disease, and the diet has shown extremely positive results, and the fact that if I eat gluten by accident I get very sick again, be a diagnosis? They diagnose other things like that...can this be the same?

Thanks ahead of time everyone.


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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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