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New Member.. Need Help! Health Story --> Am I A Celiac?

nutrifoodie

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nutrifoodie Apprentice
nutrifoodie
Posted

Hello everyone!

I

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spunky Contributor
spunky
Posted

Well I read your story and have to say I'm sorry you've been through so many confusing things without answers!!!

I think most people here could relate!

As far as advice... I don't have much. I am undiagnosed, because doctors just exasperate me with all the round and round useless tests and wrong meds, etc. So I diagnosed myself. All I can say is that in me at least, when i finally tried going 100% gluten free (reading every label of everything, cross-referencing all ingredients with lists I got from here and some other places on the net, and whenever there is any doubt whatsoever, pass on whatever food or ingredient that is), I got better in ways right away, but new food intolerances started and a few strange symptoms began occurring, and so my healing was sort of roller coaster fashion. After a whole year, things began setttling down, things were even better after two full years.

So I think if you can't find a doctor who can help you, being totally gluten free might give you an answer, but it might take a while to see all the results.

Sorry I can't tell you more...maybe some others here can.

I think sometimes if doctors can't give you an answer, trying 100% gluten free is the only way to find out... that and a lot of patience.

nutrifoodie Apprentice
nutrifoodie
Posted
  • Author

Thanks for the input spunky. I also think I might be struggling with some food sensitivities that aren't uncovered.

Also, I forgot to mention that the constipation has lead to hemmrhoids.

I still need everyone's expert advice!

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    • Dr. Gunn
      Test interpretations

      By Dr. Gunn · Posted

      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
    • trents
      Test interpretations

      By trents · Posted

      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
    • Dr. Gunn
      Test interpretations

      By Dr. Gunn · Posted

      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
    • Scott Adams
      Test interpretations

      By Scott Adams · Posted

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Test interpretations

      By trents · Posted

      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
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