Veghead1234

Very good points! I think her doc is knowledgeable, but I've had doctors in the past that "seem" to know what they're doing, and it turns out they don't at all! So I should definitely be checking up on him. I'll have the office send me over copies of the lab work. That would give me some peace of mind.

That is an excellent question. I have seen people say under 20 is normal. I haven't seen the paperwork that comes back from the lab, and I'm not sure what the antibody is that they're measuring. I also wonder if the standard is different for children. Maybe that's why he says it should be under 4? I'm not even sure how to get that paperwork. Maybe I can ask...

"So, could I cheat and eat something with gluten without vomiting? Yes. Is it a good idea to cheat once per month? Absolutely not. I wish I could recall the study but there was research out of Europe that revealed eating 1 cheat meal containing gluten once per month increased your mortality rate over the long term (several years) by 600%." Whoa! That...

Yes, that's part of the reason I worry. Her first test of course was off the charts (way above 100, the doc said). Second test went to 17, third to 11. Doc says the normal range is 4 or less, and it seems to be taking so long to get there! It makes me wonder what she might be getting that's glutinous, or if it just takes a long time? It's already been a year...

That's a relief to know, because I really have no way to know if my daughter has been glutened. I guess I can still feel OK eating there (but no more Dominoe's for her :-()

When I first went gluten-free, I didn't even know malt came from barley. I bet there are a bunch of people out there that are the same way but haven't taken the time, or known, to find out. But it's not just malt, there are some of other sources that my research shows come from barley - smoke flavor and yeast extract. Obviously the Sprouts pamphlet is wrong...

Thanks psawyer. I had to do a bunch of searching the other day to find that out after I read the Sprouts pamphlet. This is supposed to be an educational pamphlet for people trying to follow a gluten free diet, so it's pretty bad that they had such misinformation in there. It also says brown rice syrup and MSG might have gluten in them. These are common ingredients...

It does if the product is labeled gluten free, so that is a step in the right direction. But only products labeled gluten free have to adhere to that. A can of beans or a condiment or other item is often not labeled gluten free and the hidden barley is still there.

So sorry Red Robin made you sick! Since my daughter doesn't have symptoms, we really wouldn't be able to tell if they are contaminating her food. They tell us there's a separate fryer and a manager usually comes out to talk to us about her needs. Where was the location you got glutened? We are in Colorado. That's awesome about Five Guys, though! I didn...

Thanks for the responses! I'll go look at "find me gluten free" before we try eating out again. It helps to know when people have already tried a place and NOT gotten sick so you can be pretty confident it's safe!

I have noticed that people who have been gluten free for a long time don't seem worried about the barley issue. Maybe they forgot, or don't realize, how hard it is when you're new. We have been gluten free for 18 months, and for the first time ever the other day I found out "natural smoke flavoring" can come from barley. This is not disclosed on labels. Also...

Desperatelady, your doc told you you could never eat out of your home? That's awfully harsh. Does that mean you can never take a vacation? Have dinner with at a friend's house? Traveling must be really difficult/impossible. Not to mention all the work of cooking every meal yourself. That seems like an impossible directive to follow.

I have Turkey Hill ice cream in my freezer right now, and when I started reading your post I thought I'd have to get rid of it! But the Turkey Hill website itself says those ingredients aren't from wheat, and doesn't it have to be disclosed on the label if the are? I don't particularly like buying food with those types of ingredients anyway, but the "pure...

I am new to this community, as my daughter was only recently diagnosed with celiac disease. The first thing I noticed when trying to go gluten free is that, although wheat has to be disclosed on product labels in the U.S., barley and rye don't. It makes it really hard to avoid those items, and allows hidden sources of gluten in our food. Sometimes I wonder...

I thought I saw someone on this forum mention that they had posted a review about a restaurant where they got sick. If there is a site where celiacs can post whether or not they got sick from eating supposedly gluten-free food at a restaurant, that would be very helpful! And, of course, if people can post when they DON'T get sick, that's very helpful too...