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Retesting Once On gluten-free Diet

Ladycates

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Ladycates Apprentice
Ladycates
Posted

Hi! My son's GI ( a new one) wants to test for Celiac again since he was never tested besides during his colonoscopy ... but tests were inconclusive. He does test + genetically (my husband has it) BUT he also has Crohn's disease. So, Dr. really wants to make a definitive testing during his next scope in October. He wants me to give my son (6) gluten for the next 2 months and then he will take another biopsy. Is 2 months long enough to get any results blood wise and scope wise? He said that if he does start to show symptoms, he'll scope him immediately, so we can put him back on diet. He's actually a REALLY good Dr and he's spent sooooo much time with us and REALLY wants to give us 100% answers so we can move on.

So.... 2 months .... long enough?

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ravenwoodglass Mentor
ravenwoodglass
Posted

It should be but keep in mind that he can still have a false negative. If he needs to be on the diet I don't think he will last that long though and if he doesn't it is very likely the results would be negative. How he feels and acts when you add gluten back in is IMHO a much better indication of whether he should be gluten free than the tests.

Ladycates Apprentice
Ladycates
Posted
  • Author

It should be but keep in mind that he can still have a false negative. If he needs to be on the diet I don't think he will last that long though and if he doesn't it is very likely the results would be negative. How he feels and acts when you add gluten back in is IMHO a much better indication of whether he should be gluten free than the tests.

I totally agree with you. We plan on staying gluten free regardless of what the rest says. It's more to see if he will test + for it. If he does, then that will give us a different perspective on whether or not he has the Crohn's too (which is rare to have both ... 1 in 150,000) ... not sure if any of this makes sense. I was just curious if 2 months would be long enough to show up in the intestines ... I know it may not take that long .... ;)

Ladycates Apprentice
Ladycates
Posted
  • Author

Well, I guess we won't make it the 2 months. 2 hours after he ate his first meal of gluten, he was throwing up. :(

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    • Dr. Gunn
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      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. 
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      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.
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