Anybody's Kiddo Have Normal Labs?

[Officersbride]

I have posted before about my 3-year old, whose primary symptom that we have been following is her lack of growth and weight gain. She's almost 3.5 yrs old, still weighs 27 lbs (and has for the last 6+ months); she is 34 inches tall. This puts her at 10th percentile for weight, 3rd percentile for height. The pedi did some labs for her, including serum IgA and Ttg, which have apparently come back in the "normal range", though I don't have specific numbers to give as reference.

She also has some belly pain, frequent BMs (3-6/day), has vomitted a few times, extreme irritability and very fluctuating moods, bruising, etc. We have a history of autoimmune in our family (my husband has Hashimoto's thyroiditis, my mother has Lupus/Rheumatoid Arthritis).

So my question: have any of your little ones had a similar story where your child had issues like this, and had normal labs, but was still diagnosed or benefitted from a gluten-free diet? I'm heavily contemplating gluten-free, and plan on discussing it with her dr. at our next f/u (when she will get re-measured/weighed for progress checks). I don't want to jump straight to gluten-free on my own without the dr being aware of it; primarily due to how closely and attentive our pediatrician is at her care, and would like to follow her if she makes such a drastic nutritional change. But since her labs have come back negative, I was unsure if the doctors would never consider celiac disease again, or even the fact that something similar may be related to her growth issues/other symptoms? I have read several articles that mention that labs are not entirely accurate for kids her age, but now that they are negative, I am afraid they will just write her off as "the petite kid", even though she was not always at these percentiles....(my 14 month old is quickly catching up to her in clothes/shoe sizes as well as weight/height).

Thanks so much for your input.

[melblondin]

I have posted before about my 3-year old, whose primary symptom that we have been following is her lack of growth and weight gain. She's almost 3.5 yrs old, still weighs 27 lbs (and has for the last 6+ months); she is 34 inches tall. This puts her at 10th percentile for weight, 3rd percentile for height. The pedi did some labs for her, including serum IgA and Ttg, which have apparently come back in the "normal range", though I don't have specific numbers to give as reference.

She also has some belly pain, frequent BMs (3-6/day), has vomitted a few times, extreme irritability and very fluctuating moods, bruising, etc. We have a history of autoimmune in our family (my husband has Hashimoto's thyroiditis, my mother has Lupus/Rheumatoid Arthritis).

So my question: have any of your little ones had a similar story where your child had issues like this, and had normal labs, but was still diagnosed or benefitted from a gluten-free diet? I'm heavily contemplating gluten-free, and plan on discussing it with her dr. at our next f/u (when she will get re-measured/weighed for progress checks). I don't want to jump straight to gluten-free on my own without the dr being aware of it; primarily due to how closely and attentive our pediatrician is at her care, and would like to follow her if she makes such a drastic nutritional change. But since her labs have come back negative, I was unsure if the doctors would never consider celiac disease again, or even the fact that something similar may be related to her growth issues/other symptoms? I have read several articles that mention that labs are not entirely accurate for kids her age, but now that they are negative, I am afraid they will just write her off as "the petite kid", even though she was not always at these percentiles....(my 14 month old is quickly catching up to her in clothes/shoe sizes as well as weight/height).

Thanks so much for your input.

My son is exactly the same. At his 2 year check up his labwork was inconclusive (like a point or two away from pos.) and now at his 3 year checkup they were normal, but he is also 3 1/2 yrs old and weighs about 27 pounds. He has tummy aches all the time, explosive BMs, and flaming red cheeks. I have issues with gluten too and just found out that I am DQ2.5 positive, so it gives us a little clue. We meet with our doctor on Thursday to see if we should just do a gluten free trial or have him get biopsied. There are a lot of false negatives for bloodwork in kids, so yes, your daughter still could have it. We accidentaly went gluten free for a day with him and then the next day he had gluten and it took him out completely. Even though our appt. isn't until next week, we're going gluten free until then to see what reaction we get. However if we do decide to get a biopsy he'd have to be on gluten. Good luck on your journey and keep us posted!

[missy'smom]

When my son was in 3rd grade I asked for testing-came back neg. I actually asked for gene testing but ped. refused. Allergist recently wanted to do gene testing and indicated that the ped should have done it when I wanted it, but not enough justification(obvious symptoms)now so he asked me to take one for the team. However, we ran into some snags and it hasn't been done yet. At any rate, back to 4th grade, he had allergy testing after a reaction to a frozen pizza and both blood and skin showed reactions to wheat. The allergist dismissed it but I took him gluten-free for a month and a half and his eczema disappeared and his skin healed and looked so nice. When we reintroduced gluten, back came the eczema so that was motivation and evidence enough to take and keep him gluten-free. He was starting to fall off the growth charts(the doc. kind of dismissed it but we did have a conversation about growth hormones that left me feeling a little concerned, despite her reassurances) but came right back on track after going gluten-free! We also did stool testing with Enterolabs-it showed an elevation-not high but some. I'm still not sure what to make of that. But I have a paper with a test showing a recommendation that he be gluten-free and that make prove useful at some point in the future. There are still some avenues you can explore with testing. In the end you know what's best for your kiddo. My kid may chose at some point when he gets older(high school or college age) to go off gluten-free and then I will educate him about it and my family health history and urge him to get re-tested at some point, if he decideds to consume gluten. Incedentally, his recent skin testing for allergies was negative for wheat, maybe he just not reacting to it on that level anymore because he's avoided it for so long. I don't fully know what is going on in his body. I keep thinking back to when he was in 2nd grade, before I learned about and went gluten-free, he had "clear the room" bad gas occasionally and the year before that when his energy was markedly lower-he no longer ran around the soccer field but just minimized his participation. Otherwise, he had no consistant, ongoing typical symptoms and doesn't seem to feel anything when he ingests gluten. A lady in our support group said her son is much the same-however, now that he is in high school, he has started to be able to notice and express some mild symptoms(he has not been gluten-free). I feel like I still have more questions than answers.

Sorry if this is a little long winded. Hope it helps give you some things to think about and helps you find some direction and answers.

[T.H.]

My son tested negative for celiac disease, but when the whole family went gluten free (myself, daughter, brother, and father all tested positive), he showed remarkable improvement.

He's 81/2 years old and only 48 inches tall, still had that toddler-like melon belly, or so I thought, until it disappeared when we changed his diet. His mood improvement was the remarkable change. He went from a boy who was constantly prone to huge emotional outbursts to one who got angry for a few minutes and then went merrily on his way.

My own GI has said that in his practice, he is noticing that more and more of his patients with auto-immune disorders have a few things in common:

1. They tend to have other food issues: allergies, intolerances, sensitivities. The only tests for intolerances and sensitivities are eimination diets and food logs, unfortunately.

2. They tend to react more to dyes and preservatives in foods, as well as sometimes have more problems with genetically modified foods. (he's seeing abnormal growth patterns in the gut of his patients, that are exactly like the growth patterns seen in lab rats who are fed genetically modified foods)

For my family, the allergy tests have come back positive for me for a number of foods, and while we only did food logs for the kids, both of them have been consistently reacting to a few foods as well, including a few dyes in foods, so I'm inclined to believe my doc at this point.

It sounds to me like your daughter is a definite candidate for having something she is consuming causing her grief. :-( I hope you find out what it is soon!

I have posted before about my 3-year old, whose primary symptom that we have been following is her lack of growth and weight gain. She's almost 3.5 yrs old, still weighs 27 lbs (and has for the last 6+ months); she is 34 inches tall. This puts her at 10th percentile for weight, 3rd percentile for height. The pedi did some labs for her, including serum IgA and Ttg, which have apparently come back in the "normal range", though I don't have specific numbers to give as reference.

She also has some belly pain, frequent BMs (3-6/day), has vomitted a few times, extreme irritability and very fluctuating moods, bruising, etc. We have a history of autoimmune in our family (my husband has Hashimoto's thyroiditis, my mother has Lupus/Rheumatoid Arthritis).

So my question: have any of your little ones had a similar story where your child had issues like this, and had normal labs, but was still diagnosed or benefitted from a gluten-free diet? I'm heavily contemplating gluten-free, and plan on discussing it with her dr. at our next f/u (when she will get re-measured/weighed for progress checks). I don't want to jump straight to gluten-free on my own without the dr being aware of it; primarily due to how closely and attentive our pediatrician is at her care, and would like to follow her if she makes such a drastic nutritional change. But since her labs have come back negative, I was unsure if the doctors would never consider celiac disease again, or even the fact that something similar may be related to her growth issues/other symptoms? I have read several articles that mention that labs are not entirely accurate for kids her age, but now that they are negative, I am afraid they will just write her off as "the petite kid", even though she was not always at these percentiles....(my 14 month old is quickly catching up to her in clothes/shoe sizes as well as weight/height).

Thanks so much for your input.

[missy'smom]

He went from a boy who was constantly prone to huge emotional outbursts to one who got angry for a few minutes and then went merrily on his way.

My own GI has said that in his practice, he is noticing that more and more of his patients with auto-immune disorders have a few things in common:

1. They tend to have other food issues: allergies, intolerances, sensitivities. The only tests for intolerances and sensitivities are eimination diets and food logs, unfortunately.

2. They tend to react more to dyes and preservatives in foods, as well as sometimes have more problems with genetically modified foods. (he's seeing abnormal growth patterns in the gut of his patients, that are exactly like the growth patterns seen in lab rats who are fed genetically modified foods)

You know, I always have dismissed, and still do, his emotional outburts, that he used to have, as stress and discipline issues. My husband commented recently that it's been a long time since he did it and he is so much more well adjusted and balanced now. I hadn't realized it just because we've had so many changes and it's been so long and he's always been good natured at the core. But I do remember those times. Maybe there is some connection with the dietary changes and I shouldn't be so quick to pin it exclusively on other factors.

We did extensive food allergy testing recently, followed by an elimination/challenge diet. I know many say that allergy testing is not helpful but it was very helpful for us. It gave us alot of direction. I was, and still am, amazed by my test results and response to eliminating all that I tested positive for. My primary reactions have been GI symptoms.

As for the lab rats-YIKES!

[Christine E]

My son was diagnosed at age 1 and is now 6. He has never had a positive blood test. His endoscopy showed slight changes, and his genetic test was positive. With those and his gaining weight once on the gluten-free diet, he was dx with celiac. You can now get a less expensive cheek swab test to see if your son has the genetic marker. I'm not complaining about this, but I have the problem that he doesn't like "normal" tasting food since he's never had it! I made a great gluten-free lasagna and he wouldn't even try it! He has a blood test every year and is under 25percent in height and weight, but my other son is pretty average. He hates the blood test of course, so he said, " why do I have to have the test? You know I never eat gluten!"

[philandkyle]

My son had all negative blood test and a positve biospy for Ceiac. I am very new to this as well. Actually still talking to Doctors and haven't started the diet. I did have my son on a Gluten-free Casein-free diet a year ago for ADHD and seemed to help, so I am excited to get back to it as soon as I have clearance from the doctors.