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

Metoo
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Metoo Enthusiast
Metoo
Posted

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
Scott Adams
Posted

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
Metoo
Posted
  • Author

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
Scott Adams
Posted

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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  • Recent Activity

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      - trents replied to shell504's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Should I get a second opinion?

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    • trents
      Should I get a second opinion?

      By trents · Posted

      I would ask the GI doc about the elevated IGA score of 401. That one is what we commonly refer to as "total IGA" and also known as "Immunoglobulin A (IgA)". It could be nothing but it can also indicate some other health issues, some of them serious in nature. I would google potential causes for that if I were you. Also, if there is a chance the GI doc will want to do more testing for celiac disease, either antibody testing or an endoscopy with biopsy, you should not cut back on gluten consumption until all celiac disease testing is done. Otherwise, you will invalidate the testing.
    • shell504
      Should I get a second opinion?

      By shell504 · Posted

      Hello. I apologize. I didn't know there wasn't a standard.  The standard listed  for the IGA is normal range 47-310.  The others were all listed as <15.0 u/l is antibody not detected and 15> antibody is detected.  And the negative one the standard is negative.  It is a normal PCP dr. I do have a second opinion appt scheduled with a GI specialist in 2 weeks. Honestly, I haven't cut out gluten at all. I just switched to whole fibers and everything has been getting better. She wanted to do the test just to check, which I was fine with. We'll see what the GI dr says. Thank you for commenting. 
    • trents
      Mistakenly eating gluten

      By trents · Posted

      It is also possible that since eating the fries you have been glutened again during the week. I would double check the food in your cupboard and reread the ingredient lists. Food companies can and do change their formulations from time to time such that something that used to be gluten free is no more. What I am saying is, don't assume the distress you are experiencing comes from one incident of glutening. There could, coincidentally, be another one on it's heels. 
    • trents
      Should I get a second opinion?

      By trents · Posted

      Welcome to the forum, @shell504! The IGA 401mg/dl is not a test for celiac disease per se but a check to see if you are IGA deficient. People who are IGA deficient will produce celiac blood test antibody scores that are artificially low which can result in false negatives for the individual antibody tests such as the TTG IGA. You did not include reference ranges along with the test scores and since each laboratory uses custom reference range scales, we cannot comment with certainty, but from the sheer magnitude of the IGA score (401) it does not look like you are IGA deficient. And since there are no annotations indicating that the other test scores are out of range, it does not appear there is any antibody evidence that you have celiac disease. So, I think you are warranted in questioning your physician's dx of celiac disease. And it is also true that a colonoscopy cannot be used to dx celiac disease. The endoscopy with biopsy of the small bowel is the appropriate procedure for diagnosing celiac disease. But unless there is a positive in the antibody testing, there is usually no justification for doing the endoscopy/biopsy. Is this physician a PCP or a GI doc? I think I would ask for a second opinion. It seems as though this physician is not very knowledgeable about celiac disease diagnositcs. Having said all that, it may be that you suffer from NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease. The two gluten disorders share many of the same GI symptoms. The difference is that NCGS does not damage the villous lining of the small bowel as does celiac disease. NCGS is 10x more common than celiac disease. The antidote for both is complete abstinence from gluten. Some experts believe NCGS can be a precursor to the development of celiac disease. There is not test for NCGS. Celiac disease must first be ruled out. So, if it becomes apparent that gluten is causing distress and testing rules out celiac disease, then the diagnosis would be NCGS. Hope this helps. 
    • shell504
      Should I get a second opinion?

      By shell504 · Posted

      I apologize i can't figure out how to get the picture on here.  Results were: IGA 401mg/dl Deamidated Gliadin IGG. <1.0 Deamidated Gliadin IGA. <1.0 Tissue Transglutaminase IGA AB. <1.0 Endomysial IGA. Negative.  Is she just going based off of the IGA alone? And because that is elevated, it's positive? The test states: "Results do not support a diagnosis of celiac disease." 
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