Update: Went To Allergist For Re-Check Since Biopsy Was Inconclusive

[brendab]

Ok, I have NO clue where to go with this and there isn't a Doctor out there that can figure this out for my little guy. Please help out a frustrated and worried mommy! I know I am not a member that posts a lot here so here is the short and skinny of our little guys history:

* Allergy tested at 7 months-pos. for delayed allergies to wheat and dairy, inavertently went gluten free at that point with him AND me since I was nursing, he's now 2 3/4 years old

* He was still having symptoms as if he was ingesting his food allergies, did an elimination diet and through hard work and close attention I pinpointed gluten at 2 years.

*Ped. GI doc saw him at 2, blood test was neg., stool sample was normal, blood test showed he is VERY allergic to foods, biopsy by naked eye was normal and by microscope there is inflammation and damage but was told not Celiac but to food he's allergic to. Told to go back to allergist for re-test.

* Just retested for foods by blood, scratch and patch testing and ALL are now negative. So GOOD for losing the wheat and dairy allergy but BOO for not having answers STILL!

So, why did the blood test numbers come up so high showing he's very allergic to foods with visible intestinal damage when he's not food allergic? Before his biopsy he had to eat gluten in mass quantity (NOT fun) so I thought perhaps that was the damage but now the testing says no allergies? What is causing the damage?

I'm worried because I don't know where to go from here and if he does have Celiac's disease we certainly would do things like buy a new toaster and most likely have the house go gluten free because there are 8 people living here. It's a nightmare to keep gluten contained around here with so many mouths! It would be SUPER easy to be glutened here. If he is Celiac then continual damage is happening on accident because we have been told he's fine. Is there anything else we can do? My only other thought is to go to his Ped. and ask his advice, tell him my concerns and see what he says. I also worry about school, airline food, camps, etc. Some of these things need doctors notes (special airline foods) and if we don't have the diagnosis, nobody takes us serious. I'm freaking out a bit and I apologize! I'm a mama at the end of her rope and patience and worry doesn't help.

[mommida]

What and where was his "allergic to foods" damage?

What did the doctor "rule out" from the tests that were done?

Sorry, I was interupted and have forgotten the rest of my questions.

If you feel this doctor isn't working out ~ get another doctor.

If you think the medical field in general has failed to help your child. The elimination diet of gluten and all top 8 allergens and probably peas too. can be done. If there is improvement, you can add in one at a time of your possible reaction allergens. Allow for up to 12 days for a reaction (eosinophils can stay active for 12 days once activated)

In the time until your next doctor appointment, FOOD JOURNAL everything. time, amounts, BM, reactions, mood, amount of sleep, and even what your child's activities might be. ie went to petting zoo, Zoey's house for play date, played with play dough.

The doctors even asked about our hygeine and preffered cleaning products.

[brendab]

What and where was his "allergic to foods" damage?

What did the doctor "rule out" from the tests that were done?

Sorry, I was interupted and have forgotten the rest of my questions.

If you feel this doctor isn't working out ~ get another doctor.

If you think the medical field in general has failed to help your child. The elimination diet of gluten and all top 8 allergens and probably peas too. can be done. If there is improvement, you can add in one at a time of your possible reaction allergens. Allow for up to 12 days for a reaction (eosinophils can stay active for 12 days once activated)

In the time until your next doctor appointment, FOOD JOURNAL everything. time, amounts, BM, reactions, mood, amount of sleep, and even what your child's activities might be. ie went to petting zoo, Zoey's house for play date, played with play dough.

The doctors even asked about our hygeine and preffered cleaning products.

I think it was the upper intestines. She said it wasn't Celiac's or Crohn's, not parasites either. She told me that it was damage done from food allergies. My confusion comes from going back to the allergist to find that he's outgrown his food allergies so how can the damage come from them?

I've done the food journal and that is how I figured he was allergic to dairy and wheat (at first) and now I know it's gluten. I went to the allergist to confirm what I found out. I am going through the food journal and poop-check each day with him still and now I am also doing it again with our newest addition because she also displays symptoms of food allergies. Yippy-skippy