2Yr Old Tested For Gluten Sensitivity - How To Interpret The Results?

[Nikoletta]

Wondering if anyone can help me interpret the results of EMA and tTG and Gliadin antibody tests.

 

I am living in a non-english speaking country and do not have expert advice to hand. The lab was also fairly unhelpful as they do not perform these tests regularly.

 

I am wondering if my child has gluten sensitivity. She is a failure to thrive case (dropped from the top of the charts to the bottom over the course of a year. And she is extremely picky with solids.

 

The results from the blood tests taken from my 2 yr old are as follows. Do they show unusual levels or are these levels quite within normal range?

 

Antibodies to Gliadin:  IgM(?) (perhaps lab made mistake and these are actually IgG?) "Weak positive" 1.15

Antibodies to Gliadin:  IgA   "negative"

 

tTG IgG "borderline"  0.98

tTG IgA  "negative"

 

EMA IgG "borderline" 1.09

EMA IgA "negative"

 

I wasn't initially worried by these findings until the lab told me that the refence values for these tests were 0. That is to say that there should not be antibodies present at all. Is this really true? What I read on the internet seems to indicate otherwise.

 

Any help much appreciated! Thanks.

Nikoletta

[Christine0125]

Someone here will be able to help more but what I have heard is that even borderline positives typically indicates celiac. My 9 year old was recently diagnosed after borderline lab results. I would push for an endoscopy... Sunds scary but it's really a very easy procedure.

[Nikoletta]

Someone here will be able to help more but what I have heard is that even borderline positives typically indicates celiac. My 9 year old was recently diagnosed after borderline lab results. I would push for an endoscopy... Sunds scary but it's really a very easy procedure.

 Hi, and thanks for replying. 

A bit of additional information: My 2 year old wasn't eating huge quantities of gluten in the weeks running up to the test,  because she basically hardly eats anything anyway! So I suppose that that may have made the result a bit weaker.

Anyway, I hope that there might be some other replies to either back-up or otherwise what you say before I go ahead and make up my mind whether to take this further or not.

[nvsmom]

I have no experience myself in the IgG tests... is she deficient in IgA? You didn't mention if she had her total serum IgA tested.

 

A positive ttg (IgA) test is usually around 95 %specific, and a positive EMA (IgA) is almost a sure indicator of celiac disease as the EMA only appears positive after extensive damage has occurred in the gut... Doctors often don't test the EMA test in toddlers because (so the theory goes) they haven't been alive long enough to sustain enough damage for EMA to start showing positve. The AGA tests are considered older and less reliable thant the newer GDP tests, but the fact that that is her third positive celiac test is pretty telling to me.

 

Were those tests all blood tests? I ask because those blood tests do ot usually have a reference range of zero; and you are correct in that most people will have a very low level of autoantibodies... low being the key word.  The tests most commonly go up to around 20 (usually) and the EMA test is a titre in North America (meaning they keep diluting the sample until the autoantibody can no longer be found - positive results would look like 1:20, 1:40, or 1;80... keeps doubling).

 

Assuming that the IgG tests she is positive in mean the same as their IgA counter part (I think they do) I would say it looks like she has celiac disease...  If you are unsure and want further testing, an ednoscopic biopsy with a minimum of 6 samples would be your nest step.  Otherwise, I would put her on a 100% gluten-free diet (no soy sauce, worchestershire sauce, cereals made in a wheat processing facility, supplemenst with gluten, or crackers).  Even if the biopsy is negative, as a parent, I would advise trying the diet for at least 4 months to look for health improvemnets.  Something is wrong, and hopefully you have found the cause!

 

Be aware that many celiacs are lactose intolerant (at least while healing) so you may want to eliminate most dairy for her. Her nutrient levels should be checked too. Celiacs are often low in B12, D, feritin, iron, calcium and potassium.

 

Best wishes.

[Nikoletta]

Hi,

in answer to the part that I have selected below: yes, they were all blood tests. And yes, I was very surprised to find that the reference values at least for the first and third tests were "zero". (The tTG test reference range was apparently <1).

In fact, that is really the whole reason why I have written to this forum. My lab simply told me that each lab has different reference ranges. I know that this may be true, but such low ranges are totally different from anything I can find on the internet. I'm afraid I'm tempted to think that the lab don't know what they're talking about, but then again that's a bit rich coming from a totally uninformed and non-medically educated parent!

My child doesn't really have a lot of symptoms these days, other than that she doesn't eat well, she is often tired or daydreaming and she can get extremely irritable and clingy. And of course she is still "failure to thrive".These things could be attributed to other causes though I suppose.

Thanks for your input, I may try to find another pediatrician round here who would be willing to let me know their mind instead of referring me constantly to gastroenterologists who are hundreds of kms from here.

Were those tests all blood tests? I ask because those blood tests do ot usually have a reference range of zero; and you are correct in that most people will have a very low level of autoantibodies... low being the key word.  The tests most commonly go up to around 20 (usually) and the EMA test is a titre in North America (meaning they keep diluting the sample until the autoantibody can no longer be found - positive results would look like 1:20, 1:40, or 1;80... keeps doubling).

[GottaSki]

Welcome!

 

While I have never seen those particular numbers/reference ranges...what is striking is the words of analysis - "Borderline" and "Weak Positive".

 

Given you mention your child was gluten light and the lab says positive - especially the EMA - needs further investigation.  Should you not be able to find a doctor that is a specialist in pediatric celiac disease near you to conduct an endoscopy - I strongly suggest your remove ALL sources of gluten for at least three months - six is better.  Watch for symptom improvement - in this case does she grow and have an increase in her appetite - often the best indicators of Celiac Disease in young children.

 

Good luck to you and let us know if you have more questions.

[Nikoletta]

Hi GottaSki,

Many thanks. Would ask you many more questions but on further reflection I should probably post those another time under a new heading. (If you have time though: by the time we reach adulthood do not all western adults have at least low antibodies to gluten?)

Anyway, if I do find out more about my daughter's problems I'll try to write one more message in this thread to let you all know how it turned out.

Going gluten free without official diagnosis would be possible but for the fact that there is quite a lot of extended family pressure to do otherwise.

Thanks!

 

[Cara in Boston]

To me, a positive test is a positive test - even borderline.   My son shot up three inches within weeks of being gluten free (diagnosed at age 5)  We hadn't even noticed that he had fallen off his growth curve because he was tall for his age to begin with.  

 

If you decide to go forward with more tests, you have to be sure you get someone who knows what they are doing.  Our first Ped GI said my son couldn't possibly have celiac disease.  By that time, I had been diagnosed too, so it was just too much of a coincidence.  We took him to a celiac specialist and they diagnosed him by biopsy.  I have heard that the biopsy is not always accurate and if you get a negative result, you may have even more difficulty getting your family to comply to your wishes to keep her gluten free.

 

Perhaps you can get your doctor to "instruct" you to try the diet for 3 months to see if there is any improvement.  If the doctor says so, maybe your family will listen.

 

Cara

[Nikoletta]

Perhaps you can get your doctor to "instruct" you to try the diet for 3 months to see if there is any improvement.  If the doctor says so, maybe your family will listen.

 

Cara

Thanks so much for your reply. Went to a new doctor today who was so helpful and had the same opinion as you about the positiveness of the test. However, she has told us to eat more gluten this month and no dairy whatsoever and we will re-test at the end of a month. Then we will probably have to go gluten-free. We'll see. Glad things should be getting cleared up soon though...(but not looking forward to a month of feeding my child lots of gluten.

Nicola