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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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      @Healthierbody2026, as I said above, there is not a separate forum within this community for NCGS people and I do not know of one anywhere else. You sound uncertain whether your physician ordered blood tests for celiac disease or for diabetes. Do you have access online to your medical records and test results?
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      @trents first response: can you direct me to that particular section of this site for NCGS or and are there any groups I can join for people with NCGS? second response: I can’t really remember due to it was some or a few years back but I believe she did blood tests or work on me or I think she did a glucose test on me.
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