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Frustrating Diagnosis

Linkz

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Linkz Newbie
Linkz
Posted

I have most of the classical symptoms such as abdominal pain(worse 20 mins after meals) brain fog after breakfast, skin rash, etc. The genetic test indicates that I am extremely highly predisposed to celiac. Yet my doctors cannot find a sensitive and specific test that will confirm celiac. Based on what I have read, I can bet anyone $1,000 that I have celiac. Please recommend the most specific and sensitive blood test for celiac. This just too frustrating!!!

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vbecton Explorer
vbecton
Posted

May I ask which genetic testing you used? I am anxious to get that done as all my other medical workups continuously come back celiac negative, but after following a gluten free diet for over 1 month I'm a new person!

WheatChef Apprentice
WheatChef
Posted

Technically there is no real blood test for celiac. Doctors will use the IgA-tTG (tissue TransGlutaminase) test to prescreen you for a biopsy of the small intestine. Observable damage to the microvilli of the small intestine is the official diagnostic method of Celiac disease.

Keep in mind, celiac disease is a lot less common than gluten intolerance which is basically the starting point of celiac disease. Additionally most of those genetic tests don't actually test for celiac disease they look for gluten intolerance genes.

Out of curiosity, which genes did you have?

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    • Heatherisle
      Blood results

      By Heatherisle · Posted

      Thanks for replying. Hopefully biopsy will help clarify things. She’s keeping up with her gluten intake and last message from her said she’s paying the price for it!!!!
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      By Waterdance · Posted

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      By Wheatwacked · Posted

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    • trents
      Diagnosed gluten allergy but not Celiac

      By trents · Posted

      I don't think we can say that just one thing, whether vitamin D deficiency or emotional trauma, or a viral infection, or what ever is always what triggers the onset of celiac disease. We do know there is a genetic component to it and there is increasing evidence that factors creating gut dysbiosis (such as overuse of antibiotics and preservatives and environmental toxins) are major players. Hybridizing of heirloom wheat strains to increase the gluten content by multiples may also be a factor.
    • trents
      Blood results

      By trents · Posted

      Thanks for the follow-up correction. Yes, so not 10x normal and the biopsy is therefore totally appropriate to rule out a false positive or the unlikely but still possible situation of the elevated lab test number being caused by something besides celiac disease. 
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