My 11 Month Old Daughter's Test Results

[emmyl21]

Hi,

I am new on these boards and I am hoping someone can help shed some light on our situation.

My 11 month old daughter is being called failure to thrive, as she has not gained any weight in 3 months. She is super tiny, only 14 pounds. The gastroenterologist ordered a celiac panel and the results came back as follows:

Endomysial IgA - "negative" - no numbers were provided on the lab result

ab IGA - 5 U/mL - "negative"

ab IGG - 55 U/mL - "positive"

The doctor told me that this result is NORMAL and that this test is meaningless (I don't know why he ordered it to begin with, then.) He doesn't think this is worth any further discussion. I am getting a second opinion next week, because I don't accept what this first doctor is telling me. But I want to ask people here who have some knowledge on the subject, don't you think the IGG of 55 is pretty high? The lab result says a normal result is <11. So I would think that a 55 would at least warrant some further testing, but is 55 considered high?

She is exclusively breast fed, refuses solids and bottles/sippy cups of all kinds. But I think that the gliadin could be passing through the breast milk. As of today, I am going gluten free, because I am hoping it will help my daughter.

Thanks, I really appreciate any insights or experiences.

Emmy

[ravenwoodglass]

Hi,

I am new on these boards and I am hoping someone can help shed some light on our situation.

My 11 month old daughter is being called failure to thrive, as she has not gained any weight in 3 months. She is super tiny, only 14 pounds. The gastroenterologist ordered a celiac panel and the results came back as follows:

Endomysial IgA - "negative" - no numbers were provided on the lab result

ab IGA - 5 U/mL - "negative"

ab IGG - 55 U/mL - "positive"

The doctor told me that this result is NORMAL and that this test is meaningless (I don't know why he ordered it to begin with, then.) He doesn't think this is worth any further discussion. I am getting a second opinion next week, because I don't accept what this first doctor is telling me. But I want to ask people here who have some knowledge on the subject, don't you think the IGG of 55 is pretty high? The lab result says a normal result is <11. So I would think that a 55 would at least warrant some further testing, but is 55 considered high?

She is exclusively breast fed, refuses solids and bottles/sippy cups of all kinds. But I think that the gliadin could be passing through the breast milk. As of today, I am going gluten free, because I am hoping it will help my daughter.

Thanks, I really appreciate any insights or experiences.

Emmy

I think you are making a very wise choice. It certainly will not hurt either you or her. Tests on children less than four have an even higher risk of being a false negative than they do for older folks. In countries that test routinely, in all even asymptomatic, usually the first test is done at age 4 and then again around puberty because of the large risk of a false negative.

Does she have other issues in addition to the size? How is her temper and moods, does she have freqent tummy troubles or look like she might?

It concerns me that at her age she is not showing interest in solids though. How are you trying to introduce them? Do you offer her perhaps some cooked veggies from your plate? I found my very fuzzy eater would often eat something if I had a bit first and then gave it to him. Whatever someone else has always looks more appealing. I would strongly urge you to consult with at least one more doctor and also talk to someone in child development. Is she reaching her other milestones like crawling, creeping, cruising, talking?

[confusedks]

I just wanted to say that if you go gluten free, it will be really hard to get a good diagnosis. It is totally up to you, but just keep that in mind. One must be ingesting gluten in order for the tests to come out correctly.

Kassandra

[gfpaperdoll]

If you have a teeny baby then if you go gluten free & the baby gains weight & is up to par on all the milestones that is your diagnosis. (assuming that you have also checked everything possible with the doctors to make sure no obstructions etc etc, but still while doing that it will not hurt you to go Gluten Free)

I highly recommend going gluten-free immediately, I think you will see a difference. For solids I suggest baby rice cereal, the dry stuff (read label to make sure there is nothing else in it) & mix with breast milk, if that is okay after a week, you could add baby applesause to it. Be careful about purchased baby food. I believe in organic veggies cooked with organic meat etc for babies when they are at an age to eat those foods.

stay in touch, we are rooting for you.

[emmyl21]

Ravenwoodglass,

Hi, and thanks for your response. We've been offering her all kinds of foods, baby food and table food. And yes, she shows interest in what's on my plate but if I give it to her, she will only suck on it and then spit it out. Along with the GI second opinion, I'm also getting her a full evaluation (feeding/speech therapist, physical therapist). She is not crawling or pulling to a stand, so she's missing milestones now as well. She does talk, though, she has 3 words and she's very very sociable and happy all day long. She doesn't act like someone who's starving. The whole thing is pretty baffling. I do accept that the refusal to eat is a problem, but I still think the weird celiac result is also worth looking into a little further. Our second opinion doctor is at a children's hospital, and I'm really hopeful that they've got more experience with what we're going through. Thanks again so much for your response!!

[sjust]

I am very interested in what you are going through. I have a 6 1/2 month old who is also labeled as failure to thrive. She was gaining all be it very very slowly but now she is losing weight and is down to 11.5 pounds. They are unsure as to what is causing the problem. She will eat solids if offered although they are very runny, but they do not seem to agree with her. Her stool has been green and mucusy for months now. We just ran a test for celiac but I suspect it will come back neg. no matter what cause I have been gluten free for months now and she has never tasted gluten herself. My daughter is also happy and does not act like she is starving. They find that kind of interesting saying usually kids who are losing weight are lethargic. I wish you the best of luck.

Sarah

[ravenwoodglass]

Ravenwoodglass,

Hi, and thanks for your response. We've been offering her all kinds of foods, baby food and table food. And yes, she shows interest in what's on my plate but if I give it to her, she will only suck on it and then spit it out. Along with the GI second opinion, I'm also getting her a full evaluation (feeding/speech therapist, physical therapist). She is not crawling or pulling to a stand, so she's missing milestones now as well. She does talk, though, she has 3 words and she's very very sociable and happy all day long. She doesn't act like someone who's starving. The whole thing is pretty baffling. I do accept that the refusal to eat is a problem, but I still think the weird celiac result is also worth looking into a little further. Our second opinion doctor is at a children's hospital, and I'm really hopeful that they've got more experience with what we're going through. Thanks again so much for your response!!

I am glad to hear that you are doing all you can to figure this out. I would continue with your plan to make yourself gluten-free to see if that helps.

One quick note on the refusal to eat that may not apply but since it could I will mention it. The antibody response that occurs with gluten can in some cases effect the salivary glands. When this occurs what can happen is that when an item, particularly one that is heavy gluten, is eaten on the first bite or two the release of salivary 'juices' is actually painful. When she is given solid food does she show any indication of this? Does she make a face like she has something nasty in her mouth or show any distress when she spits it out? Does she refuse or push away the food item after that first taste?

In addition with some celiac children the gluten response is addictive, heavily. My DS refused any food that was not gluten laden for years. He would only eat pasta after his first taste of it. My idiot ped told me that was okay and to let him have it for all three meals if that was all he would eat and to sneak veggies in with the sauce. He was also diagnosed with failure to thrive and was 12 lbs at a year. Now as an adult he is barely 5 ft tall and was not diagnosed although he could have been a poster child for celiac until he was 19, way to late.

Celiac can also effect balance and movement which if this is happening to your child could be responsible for her delay in acheiving her milestones. I believe that you are doing the wisest thing by making her and yourself gluten-free for the time being. The diet will not mask any other problems she may have going on and may actually prevent some if it is needed. I hope she is soon thriving and that in 6 or 8 months you are wearing yourself out chasing her around the house.

[EmmaQ]

Did they do an IgG TTG?

Did they do total serum IgA?

If a person is IgA negative or low in IgA then the standard Celiac Panel are not applicable and will be false negative.

Did they do the Gene marker tests?

If it was not done by Prometheus labs, redo it and have it run by Prometheus.

If you are in the VA, PA, MD area, go to the University of Maryland Celiac Center in Baltimore. Shoot, go anyway. The head research guy in Pediatric Celiac Disease is there Dr Fasano. I have heard of families flying in from other places to see him.

And above all that the blood tests for Celiac are something like 29% affective in absence of total villi atrophy. Tests must get better b/c they are mediocre at best.