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Pedatric Gastro Referral...not sure what to do.


Metoo

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Metoo Enthusiast

My son is being referred again to a Pediatric Gastro.  We have been to one probably 3 years ago, and he had a scope with biopsies and it was negative.  My son's symptoms at the time were all skin related.

Well, his blood test numbers are back to positive again.  We had some tests that were negative.  So he is being referred again.  I am not sure I want him to go through the scope again.

Some background...I have celiac, almost all skin symptoms so there have been long periods of time where because I can't control my symptoms my whole house was gluten free...so there for he was eating gluten free also.  Right now....they aren't eating gluten free.  However I am sure they eat less gluten then most people.  Besides lunch at school right now, and some packaged snacks.  Most of his meals are gluten free...just because I am gluten free.  

I am not sure if going through the scope is going to be worth while again.  I am considering asking the Gastro if he could just go 100% gluten free and retest his blood tests and if the number goes down, that that would diagnose him.  Has anyone else asked for this or had a similar situation?

 

Here are his latest blood tests::

Tissue Transglutaminase Ab, IgA, S  0.5 U/mL   Range: 0.0 - 6.9 U/mL

Tissue Transglutaminase Ab, IgA, S Interpretation - Negative

Tissue Transglutaminase Ab, IgG, S 0.8 U/mL  Range: 0.0 - 6.9 U/mL

Tissue Transglutaminase Ab, IgG, S Interpretation - Negative

Anti-Gliadin IgA  11.0 U/mL  Range: 0.0 - 6.9 U/mL High

Anti-Gliadin IgA Interpretation - Positive Abnormal

Anti-Gliadin IgG <0.4 U/mL  Range: 0.0 - 6.9 U/mL

Anti-Gliadin IgG Interpretation - Negative


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Scott Adams Grand Master

This article is older, but still accurate: "IgA anti-gliadin antibodies are less sensitive but are more specific. In clinical trials, the IgA antibodies have a specificity of 97% but the sensitivity is only 71%. That means that, if a patient is IgA positive, there is a 97% probability that they have celiac disease. Conversely, if the patient is IgA negative, there is only a 71% probability that the patient is truly negative for celiac disease. Therefore, a positive result is a strong indication that the patient has the disease but a negative result does not necessarily mean that they don not have it. False positive results are rather uncommon but false negative results can occur."

 I think I would take the 97% odds of celiac disease pretty seriously. Does he have any symptoms?

Metoo Enthusiast

No no symptoms right now.  In the past he had rashes.  Right now besides acne, he doesn't have any skin or gastro symptoms (that he vocalizes anyways).  I did get a gastro appointment next Wednesday.  I am hoping to convince them to let him go gluten free and just do a follow up blood test...if the number goes down then diagnose him.  I really don't want him to go through the scope again.  

Scott Adams Grand Master

It's possible that a gluten-free diet my help his acne improve, as many celiacs have reported this over the years.

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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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