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My daughter is really sick (long story) and she's been evaluated for Celiac.   The doc looked at these results and said no celiac.  Thoughts on the weak positive and the low total IgA? I read that low total IgA can cause the celiac test to not work. I'm thinking we should see a GI but not sure yet if we need a referral.  Our doc referred us to an immunologist.

She has a higher risk of celiac based off of DNA testing.  She has hashimoto's thyroiditis.  She has gut symptoms, pain and psychiatric symptoms.

Low Total IgA (49 range 66-433)

tTG IgG - negative

tTg IgA - weak positive (4.2 range 4-10)

DgA IgA - negative

DgA IgG - negative

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Having only one positive (DGP Iga and I was not even IGA deficient, but the opposite high out of range) on the celiac panel, my GI proceeded with the endoscopy/biopsies.  I did not even have gut issues, but I was anemic and had Hashi's too.  Biopsies revealed a Marsh Stage IIIB.  The celiac antibody tests are not perfect.  I would get a opinion from a GI.  

Something is wrong with your daughter.  Trust your gut (no pun intended).  Keep advocating on her behalf!  

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Cyclinglady - thank you for the confirmation and support.  I've left a message with her doc to see if they will provide a referral to a GI and I'm also checking with our local Celiac group to see if they have any recommendations for docs that don't need a referral. 

 

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So, I know I'm obsessing but......

University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral.

Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?

 

 

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4 hours ago, sugarsue said:

So, I know I'm obsessing but......

University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral.

Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?

 

 

Ah, more information trickles in......

There are a few things that may elevate a Ttg igA result: 1)  celiac disease, 2) Lyme disease, 3) another autoimmune disorder.  Someone recently posted during the Last month who had a very elevated TTg but ended up not having celiac disease.  Instead he was diagnosed with Lyme disease.  My memory could be wrong, so do the research.   The bottom line is that further research by a GI is recommended.  

Celiac antibody results do not always correlate with the severity of intestinal damage in someone with celiac disease.  That is why an endoscopy/biopsies is still the gold standard for diagnosis.  Europe is opting to avoid the endoscopy in small children, but not the US.  

Her IgG Celiacs tests were negative, so he is checking for a wheat allergy?  

 

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Well, a different doc is checking for wheat allergy not the one who ran the celiac test.

Interesting about the lyme and ttg iga, I didn't know that.  So much to muddy the waters with her.  She's been treated for lyme for many years but they keep coming back with other tick borne illnesses that may be infecting her.  But since  the testing is so poor and nothing is solid in her testing, I am needing to look at every avenue I can to try to help her.  It's just not adding up.

As a young child she had sensory processing disorder, than PANDAS (reaction to strep), then Lyme.  Was gluten free for many years until we added it back in about 4 years ago.  Then 3 months ago started failing fast with psych symptoms of dissociation, anxiety, fears, unwanted laughter, joint pain, random pain, feeling ill after every meal, severe pain after wheat and dairy combo followed by diarrhea. 

I hope we get a good GI who will at the very least be willing to rule out celiac as we are running out of ideas.   I hope after all her testing she will be willing to go gluten-free again regardless of what we find, to see if it will help her. 

 

 

 

 

 

 

 

 

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Interesting thing I learned from my immunologist. Once bitten by a tick you can develop a beef and pork intolerance. We just had IgG testing for beef, pork, gluten, casein and whey. Very telling and several in my family tested positive. Might be something to add to her testing. I'm so sorry! It's very frustrating trying to find answers 

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We found a great GI doc and saw her yesterday.  She said my daughter's total IgA of 49 should be high enough for the test to register correctly.  However due to her symptoms and former positive reaction to gluten free diet, she's scheduling an endoscopy and after that either confirm celiac or assume non-celiac gluten intolerance and she'll start her gluten free diet again and I hope it helps her!  I will post the results just for informational purposes here in case anyone searches for total IgA posts in the future. 

Thanks for your support!

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Hello we got her biopsy results back and they are normal.  The doc is calling her non celiac gluten intolerant and lactose intolerant.  Now we will just wait to see if the gluten-free diet helps her. 

She does have elevated IgG to casein and wheat  I know there is controversy on whether that test is helpful or not but either way we are hoping she gets well going gluten-free  

 

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Hello friends!  I wanted to report that my daughter has been gluten free since her biopsy in August. She told me yesterday that she is almost back to herself.   All her pain is gone and her mental state is so much better.   I think in a few more months she will be 100%!

She he glutened herself one night in error and by the next night she was pretty crazy again. She knows for sure now it was the gluten causing her mental issues and is learning how to watch out for her food. 

As always thanks for your support.  Even without a celiac diagnosis we have learned that gluten is so very damaging.  I wish mainstream docs would suggest gluten-free before just referring kids to psychiatrists for drugs. i spent thousands trying to figure out what was wrong.

 

 

 

 

 

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I am so glad that she is feeling better.    Non-celiac gluten intolerance is real.  Researchers like Dr. Fasano are acknowledging it and will hopefully create a method of testing for it.  Glad you ruled out celiac disease!  

Thank you for reporting her progress.   You will help so many others with comparable issues!  

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