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Should We Be Tested?

Rachel

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Rachel Newbie
Rachel
Posted

Hi!

My names Rachel and I

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Alexolua Explorer
Alexolua
Posted

Well gluten is in more things than just wheat. Umm.. Barley, Rye, some other grains I can't think of, lol. But, Wheat is a big source of gluten for most people, since we eat it more than the others, on average, I'd think.

But, not being an expert, I would say get tested for it! The removing wheat, feeling better, then feeling worse once it's introduced.. could be Celiac. If you can't find a doctor willing to test you though, just go gluten free on your own, sounds like you had success when you removed wheat, could have even more when you remove all sources of gluten. =)

celiac3270 Collaborator
celiac3270
Posted

If you think your daughter has it, definitely test her. Since you have symptoms, you should be tested, too. If it turns out your daughter has celiac disease, then everyone in her family should be tested, regardless of symptoms (brothers, sisters, uncles, aunts, grandparents, parents)....it's likely that if she has it, someone else in her family will have it--after all, it's genetic, so it's passed down.

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    • somethinglikeolivia
      Am I celiac or not?

      By somethinglikeolivia · Posted

      Responding to both of your replies: thank you so much!! That makes a lot of sense and helps me feel better about it - I really appreciate the clarification and recommendations. You guys have been very helpful and this site is a gift. Thanks again! 
    • trents
      Am I celiac or not?

      By trents · Posted

      I think giving attention to the main sources of exposure such as direct consumption of gluten and gross cross contamination with reasonable attention to handwashing and thorough counter top cleaning and dishwashing should cover cross contamination issues. The biggest precautions would be eating in restaurants and at other's homes. Don't get paranoia over it and don't make trouble where there is none. As far a what you communicate with your physicians, just tell them what you know. Strongly positive antibody tests, negative biopsy, positive symptoms when consuming gluten with clearing of symptoms when gluten free.  
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      By trents · Posted

      Occasionally we do see anomalies where celiac antibody tests are positive but biopsies are negative, and even visa versa. Sometimes, damage to the small bowel lining is patchy and unless numerous samples are taken from various areas, the damage can be missed. So, there's that issue as well. I think in your situation, the tell-tale indicator is the difference in symptoms between when you were off gluten and when you were consuming it.   
    • somethinglikeolivia
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      By somethinglikeolivia · Posted

      Okay, that makes sense - so based off of the 90% odds that it is positive, it’s worth switching to fully gluten-free? How strict do I need to be with cross-contamination, handling, etc. Is it something that can go by feel, for instance if I feel okay making my family sandwiches and handling the bread as opposed to eating it, or is it something that is causing silent damage even if I feel fine? Also, do I make it clear to my rheumatologist and other medical providers that I am celiac? Or will they veto that due to negative endoscopy? Thanks again for the help!
    • Scott Adams
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      By Scott Adams · Posted

      If you look at the article that I shared you will notice that "The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease," so your results indicate that you very likely have celiac disease, especially if you also have symptoms while eating gluten that go away when you stop eating it (although many celiacs don't have obvious symptoms).
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