What Else Could It Be?

[mskelly]

I just found out this morning that DS has fallen off the growth chart. Two weeks ago the GI said Celiac is not likely based on the genetic testing we did. However, he is responding very well to a gluten-free diet. I am keeping him on the diet because he is definitely showing me signs that he feels better. We are going to see an immunologist next week.

If he does not have celiac, what could it be?

[CarlaB]

There are genes that represent non-celiac gluten sensitivity, so if they didn't test for those, which they probably didn't, he could be gluten intolerant, which really is as bad as celiac in many cases.

He could also be sensitive to dairy, corn, or soy, all three common allergens. I am sensitive to the casein in milk and have reactions to it that are very much like my gluten reactions.

[lonewolf]

I agree with Carla - it could be non-Celiac gluten sensitivity. I don't have the Celiac genes, but I do have the gluten sensitivity gene and I react to gluten very strongly. It would be a good idea to look into dairy, soy, corn and eggs too. All of these are common foods that can cause digestive problems.

[Ursa Major]

Hi Kelly, and welcome to this board. I believe that what Carla and Lonewolf say is valid advice. If the gluten-free diet appears to be helping your son, keep him on it, you seem to be on the right track. Most doctors don't understand about non-celiac gluten intolerance, and that it can be just as damaging as celiac disease.

[chrissy]

how old is your son?

[mskelly]

Thanks ladies. I definitely am going to keep him on the diet. He is 2 years old. I know that he also has peanut and egg allergies. Dairy I can't figure out, he seems to handle small amounts, but too much makes the eczema flare and sometimes makes him constipated. He has been off soy for a year also, but I recently started to allow the soybean oil.

Is non-Celiac gluten intolerance something you outgrow?

[Guest nini]

Thanks ladies. I definitely am going to keep him on the diet. He is 2 years old. I know that he also has peanut and egg allergies. Dairy I can't figure out, he seems to handle small amounts, but too much makes the eczema flare and sometimes makes him constipated. He has been off soy for a year also, but I recently started to allow the soybean oil.

Is non-Celiac gluten intolerance something you outgrow?

no you don't outgrow it. Celiac is only ONE of the many manifestations of gluten intolerance, just because he didn't have the genes for celiac doesn't mean a thing. Positive dietary response is a valid diagnostic tool and that is how we dx'ed my daughter. I have Celiac so theoretically if it's genetic, the odds of her having it are pretty high, but her Dr. said it wasn't Celiac (well the GI did) her pediatrician agrees that it's Celiac, just not advanced enough for her to have accumulated enough damage yet.)

I would keep him completely off dairy initially, but you may be able to add the dairy back in after 6 months or so. Keep a food journal, it can help you track other intolerances.

[mskelly]

Hmmm. He's been off of dairy for at least 6 months. That's why the dr. wanted to try him on it again. His food choices are so limited and he's seeing an OT for oral aversion. We were hoping that by allowing some dairy it would open up more food choices. I don't like tinkering and experimenting on him, but it seems like it's my only choice right now. Maybe, with any luck, the immunologist will be able to give us some more clear and definite answers.

I've read over and over the path to a final diagnosis is very long. I just wish it was me and not my baby.

[Izak's Mom]

I've read over and over the path to a final diagnosis is very long. I just wish it was me and not my baby.

hang in there, mskelly. i know, it sucks to have to deal with all these food/allergy/intolerance issues (i don't have any issues myself, which makes it more irritating - like why can't my kid just eat the way i want to feed him?) but in the long run, you'll be so glad you persisted with getting to the bottom of things...it's what any good mother would do.