New To All Of This

[riiimommy]

Hello! My name is MaryAnn and I have a son that is 15 months old. For the last six months or so my ped has been monitoring my son for poor weight gain. Although he has not lost any weight, he has been consistently in the 5th percentile on the growth chart. At our last appointment, my ped suggested that he be tested for Celiac disease. I have read several of the posts that everyone has made here and it seems that a lot of the symptoms are consistent however some aren't even close.

My ds has never had projectile vomiting with formula or breastmilk, only a couple of times when I gave him rice cereal. He ate barley and oatmeal just fine. He is never cranky, always happy, VERY energetic, does not indicate that he is having tummy aches or anything like that. The only symptoms that he has that are consistent with others that I have read are loose stools and the minimal weight gain (are frequent bowel movements and indication too? If so, then he has that too--he poops 3-4 times/day).

You all sound so knowledgeable and I right now am still reeling from the suggestion that he might have this. We had the blood work done last Friday, still waiting for the results. Oh and that's another thing...what should I be paying attention to when I get the results? Not that I don't trust my ped, but I like to be informed when she tells me the results. I've never known anyone to have this and I'll change whatever necessary if he does have it...does it sound like he has it?

My husband is a very small person...he was only 98 lbs when he graduated from high school! I am tall, but was also about 98 lbs in high school. So could my son just be a small person? I'm sure you all know how it feels to have all these questions when the diagnosis may or may not be positive....any information you would share with me would be so greatly appreciated! Thanks in advance--

MaryAnn

[TaylorsMom]

MaryAnn,

First of all you are so fortunate to have a Ped. that is educated about Celiac. I'm still not sure if my daughter has Celiac or not but I would love to have a Ped that would even consider it! As for your son's symptoms, he very well could have Celiac. I have done endless research and have found that Celiac presents itself with an array of symptoms. Some people are even asymptomatic. Your son's loose stools and slow weight gain could both be symptoms of Celiac, but like you said both you and your husband were small so it may just be how he is. Either way it's wonderful that your having the testing done! Your son is very lucky that if he has Celiac that he will be diagnosed early and can get started on the gluten-free diet.

As for what to look for with the blood tests, I'm not too sure. I'm sure the others on this board will give you wonderful advice on that.

Good luck to you and your son!

Megan

[momof2]

My daughters symptoms started out as diarrhea at 13 months old. The only symptoms she had were loose (very loose) stools, large tummy, and being clingy. Other than that, she was happy when held, and slept a lot too. She was always in the 5th percentile in her weight. After 3 weeks of consistent diarrhea, we took her in, and my pediatrician sent her to the lab with every blood test imaginable.

My question to others reading though is this...my daughters blood tests came back positive, but the GI specialist said they still wanted to do a biopsy for 100% accuracy. I know if the tests come back negative, you can still have it too. So, what is the point of putting the kids through blood tests if they aren't accurate? So, as far as I know, whatever the results of the test come back, there is a chance they are wrong.

[kirst4588]

momof2,

My son just turned 2 last month, he was diagnosed with celiac disease 6 months ago - his igg was 25 (borderline) and his iga was 52 (very high) but I had no other tests done because going gluten free was an instantanious improvement - night and day. But *now* the Ped GI wants to do endoscopy and possibly biopsy and I'm wondering WHY also - if I know the gluten-free diet works, why would I do anything different? (regardless of additional test results???) Our appointment is next week, I'll report back - meanwhile, I'm like you and wondering why its necessary - not to mention, the procedures are risky and *not* 100% accurate.

-Kirst

[mat4mel]

Kirst, I am wondering the same thing-- my ped GI wants her to do a gluten challenge as well after having positive IgG and IgA and improvement on the diet. I hear too any stories of false negatives on biopsies, and no procedure is 100% safe. I just don't get their insistence on a biopsy..

To the original poster, my dd didn't have a bloated belly, vomitting, etc... and she would only complain occasionally about a tummy ache. Her main symptoms were loose, frequent bm's and also hung out in the very low percentiles for her weight. She is 2.

Mel

[Kim]

The gold standard for diagnosis is the biopsy. That's why your peds want to have one done -- to be sure. Often, insurance companies won't pay for an endoscopy (biopsy) if you don't have blood tests first. They do put the child under so it is a painless procedure.

As for doing a biopsy after your child has already been gluten-free, you may not get accurate results. First, they must sample at least 6 -7 places to get a true reading. but, if your child is already gluten-free, then the biopsy results may be negative because he/she has already started healing. A person with celiac who maintains a gluten free diet will have a normal biopsy.

As for a gluten-challenge, I'm personally not a believer in them, but I recognize it's a personal decision. If your child is already gluten free (for a significant period of time) and feeling better, then why torture the child. He/she must eat significant amounts of gluten for at least 4-6 weeks in order to sustain some damage to the intestine to be picked up on biopsy.

Good luck to you all.

Kim, Atlanta, GA