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Retesting Once On gluten-free Diet


Ladycates

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Ladycates Apprentice

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

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

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

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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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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