Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


Metoo

Recommended Posts

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,836
    • Most Online (within 30 mins)
      7,748

    Art Glassman
    Newest Member
    Art Glassman
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @ABP2025, Here's some studies and articles that will help you learn more about thiamin and all... I will write more later. It's possible that your antibiotic for giardiasis has caused thiamine deficiency.   https://hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/ And... https://hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/ And... Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ and... Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/      
    • DayaInTheSun
      Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid.  Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid.  Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. 
    • Kiwifruit
      This is all really useful information, thank you so much to you both.    I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    • trents
      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
    • Gill.brittany8
      Hi everyone  After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case.   The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much.  result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ  
×
×
  • Create New...