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marythemom

Member Since 21 Jan 2004
Offline Last Active Aug 08 2004 09:18 AM
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Topics I've Started

Not Celiac

31 July 2004 - 05:28 PM

We've recently determined that my son does NOT have celiac disease, and if he had a wheat allergy he's outgrown it. We're still barley free, but I have tons of cookbooks, flours, mixes, etc. I live near Austin, TX. I would love to sell/ give away to someone who needs them all of our many pounds of flour, and scarcely used cookbooks. Any suggestions? You can e-mail me at mbrush (remove parenthesis) @ austin.rr.com. Hope noone considers this spam. I just don't want all this stuff to go to waste.
Mary

Totally Confused

21 January 2004 - 07:00 AM

My little boy will be 5 next month. At 10 days of age, he was hospitalized with RSV. At 7 months he had had so many ear infections that he had his first set of ear tubes. His body rejected the tubes in only 4 months. At 13 months he had his second set of tubes and his adenoids removed (he'd had over 20 ear infections before he was a year old!). Four months later they'd fallen out again (probably pushed out by yet another ear infection). He'd also been hospitalized with wheezing attacks and had to have 2 consecutive nebulizer treatments in the hospital.

At two, he was eligible for his 3rd set of tubes, but through a string of circumstances we'd started him on an elimination diet (removing ALL possible food allergens). I went to an allergist since this seemed a bit extreme for a two year old. The allergist took one look at his problem sheet and said, "It's wheat or milk." It wasn't milk. The ear infections stopped. The frequent bowel movements (NOT diarrhea, just 3-5 times a day) that we had assumed were because he was breastfed up to that point, stopped. A couple of months later, he started wheezing again, and we took him off barley. The asthma stopped. Through all of this he NEVER complained about anything hurting so we couldn't use self reporting to tell if things gave him a tummy ache or had an ear infection, etc.

After 18 months of a strict gluten-free diet they said he was old enough to let us do the scratch allergy test. We put him on wheat for a week. It came back negative. They ruled out celiac because it's usually genetic. Daddy realized that his stomach problems improved when he went on a gluten-free diet. Daddy had a colonoscopy. He's not celiac. He has GERD (acid-reflux disease). They said my son might grow out of it at age 5-6 years. We decided to let him try glutens again last week. He complained of a stomach ache. He got a fever, but it went away before we could take him to a doctor. Stomach flu is going around, and he's been "fine" for a week now.

So if you got this far, here's my dilemma. His 5 yr. well check (with a new doctor who believes in food allegies, and has at least heard of celiac disease). is in 2 weeks. The nurse suggested leaving him on glutens for that length of time, and making an appointment with a Gastro-interologist (since it can take months to get in) so he can take the test after having been on glutens for 2 months. Do I need to put him back on Barley too? Every time he has vinegar or things flavored with vinegar he gets sick (can vinegar have barley? I know it can have wheat). He doesn't seem to be suffering on the wheat, but I've been afraid to introduce the barley. I just can't figure out if these are classic allergy symptoms or atypical celiac symptoms. I just don't know where to go from here, but I'd like a diagnosis before he starts public school! He's been on a gluten free diet for 3 years so he isn't craving a "regular" diet. He doesn't even know what that tastes like. At this age, he's totally compliant, and children don't start teasing other children about differences until they're in 2nd grade. Still, he's growing up fast. I would love any support or suggestions. I have friends who's children are gluten-free or Gluten-free Casein-free, but none of them are for celiac or allergy related reasons.

Would really love some advice!

Mary (mother of 2, one gluten-free boy (almost 5), and one non-gluten-free girl (7.5 yr.)