2 Drs Said They Are 95% Sure My Son Is Celiac, Another Dr Said No. Said No To Biopsy

[Nebraskamommy]

My 3 yr old has always been on the small side and has suffered from constipation for 2 yrs. we did blood food allergy test and celiac test in dec. allergy test said he's allergic to gluten, barley, milk and eggs. Our holistic dr and a pediatric GI said they are 95% sure he's celiac based on test results. We saw a dr at Children's Digestive Institute today and he said the test doesn't show Celiacs and no need for biopsy.

Here are his results,

Endomysial antibody iga - negative

tTg iga <2

tTg igg 8

He's borderline low vitamin D as well but that could also be because it's winter.

Not sure what to do now . I was really hoping a biopsy would confirm 100% but dr we saw today wont even do one bc he said these test results don't show Celiacs.

Anyone else have a similar situation?

[StephanieL]

What kind of Dr.did the allergy testing?

 

From the blood work I would agree that there isn't any indication that it is Celiac.

[GottaSki]

I also am curious what kind of doctor performed the allergy tests.  If your child is allergic to gluten and barley then all gluten needs to be removed regardless of celiac testing.

 

Do you have the ranges for the tests you posted?

 

Not all children test positive on all of the celiac antibody tests.

 

If he hasn't had them, you could add:

 

Total Serum IgA

DGP-IgA

DGP-IgG

 

The Deamidated Gliadin Peptide (DGP) tests can be positive in children before the Tissue Transglutaminase tests.

 

Once you decide you are done with testing, remove all sources of gluten for at least three months to see if his symptoms improve and/or his Vitamin D level rises.  Elimination is the only test for Non-Celiac Gluten Sensitivity which has many of the same symptoms as Celiac Disease.

 

Good Luck to your family

[mommida]

I agree with the previous posters.

I do want to explain that 30% of Celiacs are IGA deficient.  That is why the TOTAL IGA test was suggested.

[Nebraskamommy]

My 3 yr old has always been on the small side and has suffered from constipation for 2 yrs. we did blood food allergy test and celiac test in dec. allergy test said he's allergic to gluten, barley, milk and eggs. Our holistic dr and a pediatric GI said they are 95% sure he's celiac based on test results. We saw a dr at Children's Digestive Institute today and he said the test doesn't show Celiacs and no need for biopsy.

Here are his results,

Endomysial antibody iga - negative

tTg iga <2

tTg igg 8

He's borderline low vitamin D as well but that could also be because it's winter.

Not sure what to do now . I was really hoping a biopsy would confirm 100% but dr we saw today wont even do one bc he said these test results don't show Celiacs.

Anyone else have a similar situation?

The holistic dr is the one who ordered the igg blood allergy test. I think these are often Referred to as food intolerances versus food allergies as he doesn't have an immediate reaction when he consumes these foods. He is a very picky eater and was displaying some symptoms that lead me to Believe yeast overgrowth, that is why we went to the holestic dr to begin with. He also is very moody and I was thinking AdHD. We cut out dairy, eggs and gluten for 3 weeks and the constipation went away and the mood swings lessened. Then we decided we wanted a scope and went back on gluten so that the scope would be accurate.

Here are the ranges.

TTg iga <2 ( range 0-3 negative, 4-10 weak positive, >10 positive)

TTg igg 8 (range 0-5 negative, 6-9 weak positive, > 9 positive)

I'm just so confused as to how two drs (holistic and Ped GI) could say 95% sure Celiacs and yet another Ped GI say its not. They were all looking at the same lab results. The first Ped GI and holistic said something about that since his iga is so low and igg so high it's def Celiacs. Either way I plan to cut out gluten but I would like to know 100% if Celiacs. I plan to call Children's on Monday and ask if another dr there will look at the labs.

Also immunoglobulin a, an, serum is 43 ( range 44-189)

I'm thinking he's iga deficient and that may be altering the dr at Children's opinion. Thinking he's negative when actually the iga results would not be useful based off this info I found. .

"Immunoglobulin A (IgA) deficiency is 10 to 15 times more common in patients with celiac disease (celiac disease) than in healthy subjects. Serological tests have become the preferred methods of diagnosing celiac disease in both symptomatic and asymptomatic patients. However, commercially available serological methods are limited in that they detect only the IgA isotype of antibodies (with the exception of IgG gliadin assays); hence, IgA-deficient patients with celiac disease may yield false-negative"

[GottaSki]

Thanks for adding the ranges.

 

The tTG-IgG is positive which does indicate Celiac Disease.

 

I now strongly suggest having the additional:

 

Total Serum IgA...If your son does not have sufficient IgA it would explain why the tTG-IgA was negative. you edited that he had this test which indeed indicated deficient amount of IgA to make any of the IgA antibody tests accurate/false negatives likely.

DGP-IgA

DGP-IgG

 

Additionally, you mention some improvement after removing gluten.  

 

If you want to obtain diagnosis, keep him eating gluten until you speak with Children's for clarification and requesting Deamidated Gliadin Peptide antibody tests and possible endoscopic biopsies.

 

If you decide he is done with testing, remove ALL gluten to monitor symptom improvement/resolution.

[Nebraskamommy]

Since his immunoglobulin a, qn, serum is 43 ( range 44-189), just one point below the range, is he truly iga deficient?

[GottaSki]

Since his immunoglobulin a, qn, serum is 43 ( range 44-189), just one point below the range, is he truly iga deficient?

 

It is certainly low enough to question the validity of the tTG-IgA.  Given his symptoms I think it wise to at least have the DGPs run along with seeking a GI well versed in Celiac Disease and Non-Celiac Gluten Sensitivity to perform the endoscopic biopsies if you choose to move forward with endoscopy.

[StephanieL]

Igg is NOT accurate for allergy testing. I wouldn't event trust an IgG test for that. Ever IgE testing has a 50/50 accuracy rate, IgG isn't even that.

[mommida]

I questioned how low it was.  That is why I wanted to let you know about being Celiac and IGA deficiency.  It really can throw off the Celiac panel for diagnoses.

[Nebraskamommy]

I questioned how low it was.  That is why I wanted to let you know about being Celiac and IGA deficiency.  It really can throw off the Celiac panel for diagnoses.

I called the lab that ran the results and they said the DGP is included in the tTg. So now what?

Also, the GI at children's told me that IGG tests are not accurate for diagnosing food allergies, he basically told me that the food panel (igg blood test) the holistic dr ran was useless, so I’m wondering why IGG results would be relied on for a Celiac diagnose if they are not reliable for general food intolerances/allergies?

[Cara in Boston]

My son was negative on all tests except the IgG tests.  He was not deficient in IgA.  Our first doctor said he didn't have it because his IgA tests were fine and he was average height and weight and had no GI symptoms.  However, he could not explain why my son had such high IgG numbers (lab error?) and by that time, I had also tested positive for celiac so it was too much of a coincidence.  This doctor told me I had "read too many magazines" . . .

 

I didn't give up.  Took him to Children's where they have a special Celiac unit and his new doctor agreed that he should have further testing.  His biopsy was "very positive"

 

Strangely, my biopsy was negative so go figure . . . we both clearly have celiac disease and the gluten free diet has helped us immensely.

 

Trust your instincts.