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Going Gluten Free Before The Biopsy?


zenmama

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zenmama Newbie

My dd had a positive ttg (over 75) and she is 15 mo. At our last appointment we decided to schedule the biopsy in April b/c I am very uncomfortable with it at this time.....

ANYWAYS

I thought that I was told to go Gluten free, but maybe i misunderstood. dd ate something woith gluten in it on accident the other day and has been ill for 4 days.

but if we go off gluten, the biopsy wont be accurate correct? Do i need to call her doctor and tell her about the rash/belly aches and bump the biopsy to sooner than later?

i am so confused!


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dandelionmom Enthusiast

Kids heal fast. So if you go gluten-free before the biopsy, her intestines won't show damage. If you want to have the biopsy, you need to keep her on gluten until she has it. That is one of the reasons we opted not to do the biopsy.

Photobug3 Newbie

I had my biopsy two weeks after diagnosis. In that two weeks I went gluten free and was feeling WONDERFUL. My biopsy came back practically negative but my doctor could still tell I had celiac disease.

I say if she does well on a gluten free diet, you have your answer.

As my doctor says, "If it looks like a duck and quacks like a duck..... it's a duck." :)

Good luck with your decision!

happygirl Collaborator

If the purpose of the biopsy is to look for Celiac damage, then you have to continue eating gluten.

If the purpose is to go on a gluten-free diet and then see how your damage is healing, then you can eat gluten-free.

You need to call your doctor to clarify. If your doctor tells you its ok to go gluten free now but she is checking to see if you have Celiac (meaning, if its negative, then you don't Celiac), you might want to re-consider.

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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.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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