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Scope


MaryJ

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MaryJ Newbie

Hello all,

I am new to this so please bear with me. My son's blood test came back positive for Celiac. When I talked with the Doctor she said to watch what he eats, burger no bun, watch wheat and gluten, etc.... Then she called me back and said the wanted to schedule the scope. So I called the Pedicatric GI to schedule and was yelled at for watching his diet. He has been gluten and wheat free for a week, they want me to put him back on gluten and wheat so he can have the scope. I am having a hard time with that because he is actually starting to feel better and has a smile on his face. I am at my wits end. I cannot knowingly give him something that is going to make him feel bad again. I don't know what kind of response I am looking for, just really needed to vent. Thanks for listening.

MaryJ


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cruelshoes Enthusiast

Unfortunately, in order to register results on the biopsy he has to be eating gluten. Otherwise you risk getting hin healed up enough to show healthy villi, when he actually does have celiac. I know it's hard, we had to do the same thing with my son. But if you want to go ahead with the scope/diagnosis (I highly recommend this, especially with children), you have to keep feeding him gluten.

MELINE Enthusiast

Hello...

You didn't tell us when he is going to have his scope...if it is scheduled for the next week for example, then I guess he will not have a problem. There is an article (unfortunately I am not at home and I can't send it to you) that says that the villy needs something like 3 months to look healed in the scope. Of course that depends on the damage that is already done and on the person's ability to heal. But I really don't think that with something like 10 days of gluten-free diet your son's villy will show no damage. It is too soon to be healed. Maybe you could talk to your doc about it. To tell you the truth I had a biopsy after 5-6 months of gluten-free diet and it showed nothing. I tried to get back on gluten before the biopsy but I only could do it for one day. It was just impossible. Most of us don't depend on the scope and think that the gold standard for celiac diagnosis is the response to the diet. My doc thinks so, too.

Any way I hope your doc will tell you what is best for your son. Good luck.

Ursa Major Collaborator

In reality, a positive blood test and positive diet response are diagnostic, and more and more doctors would give him an official celiac disease diagnosis right there.

You are right in not wanting him to eat the food that makes him ill again. If he was my kid, I'd skip the scope. But you will have to make that decision.

If your doctor will diagnose him without the scope, go for that and forget about the rude GI pediatrician.

MaryJ Newbie

Thank you all so much for your advice. He is 13 years old and he knows what he can and cannot eat so trying to get him to eat something that is going to hurt him is hard. He told me that I have no idea how bad he felt and he finally is feeling better. All I have been doing is crying and trying to figure out how to help him live his life so he can feel better. Could anyone tell me what I ingredients I need to look for in shampoo, toothpaste and other items so I don't give him something he shouldn't have. Is there a website that offers this information. Any help would be greatly appreciated. Thanks again to all :)

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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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