15 Months Old Ds With Possible Celiac

Owen'sMom · August 5, 2006

Hello I'm new and have some questions.

My son Owen has had reflux since birth and was put on meds when he was almost 7 weeks old, he still has some issues but that is not our main issue right now. Ever since we started introducing cereal at about 5 months old his weight/height dropped very low on the charts, right now he is hovering between the 3rd and 5th percentile. We cut out all dairy and soy at around 9 months old and saw some improvement with his reflux but he wasn't tolerating very many foods. He broke out in rashes all over his body, diaper rashes, his exzema got really bad and he would wake constantly at night and during naps holding his tummy crying, he also kept having loose mucousy smelly stools. We had allergy tests done which all came back negative and just recently they tested him for celiac which also came back negative.

About 2 weeks ago we started seeing an alternative medicine doctor and she tested him for food allergies and he reacted to almost all grains, she had us try spelt for a week until we went back to her again. The spelt didn't work out at all since he got horrid smelling watery stools from it. So last week sunday we decided to put him on a gluten-free diet and we have a changed child. He is so much more playful and not as whiney/clingy anymore. His eczema has improved, no more diaper rashes or other rashes so far. And we started introducing more foods in his diet that were causing problems before with great success.

How can we find out if it's just a gluten sensitivity or actually celiac?

I really don't want to do a biopsy if we won't get any answers just like all the other tests that were done.

Is there a list somewhere so I can check which foods are ok for him?

Thank you,

MaryKyburz · August 5, 2006

Sounds just like my DS. My 6 yr old is on a Gluten-free Casein-free diet because he has Asperger's syndrome. My 3 yr old is the one with the similar symptoms (diaper rash, reflux, colic, green mucousy stools, etc.) We had him tested for celiac, but the blood work came back negative. I don't think I'll put him through the biopsy, since it will also probably be negative. I'm just going to keep with the Gluten-free Casein-free diet and hope for some major improvements. His stools are already better. He had bread the other night, and almost immediately got a fever -could have been just a bug he caught, but I think his immune system had to fight harder and couldn't keep the sickness from taking over. I remember him getting a fever a few times in the past after eating wheat/dairy.

How old is Owen? It might be years before you are able to get a positive on a test.

August 5, 2006

the testing in children is highly unreliable. (if you are lucky enough to get a positive then it def. is positive, but a negative only means that it doesn't show up on the testing yet)...

my personal opinion is that you already have your answer and that yes at the very least your son is def. gluten intolerant. He had to get it from somewhere so you and your husband and immediate family members should all be screened for Celiac. Enterolab seems to be a very good option for this, doesn't require a blood draw or a biopsy.

My daughter's blood test was negative, we did not have the biopsy done, but she responded so miraculously to the diet that there is no doubt as to what the issue is. Positive dietary response (which your son has) is a very valid diagnostic tool, in fact it's the most accurate. Whenever my daughter is accidentally exposed to gluten, her reactions are immediate and severe, including rashes and tummy aches and gas, diarrhea and vomiting.

I have a newbie survival kit on my website (just click on the link in my signature and at the bottom of my web page there is a link to download the zip file of the newbie survival kit.)