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      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About Veghead1234

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  1. Red Robin Gluten Free Bun

    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.
  2. Red Robin Gluten Free Bun

    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 for copies next time we go to the doc. I think she has an appointment coming up pretty soon.
  3. "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 is a serious statistic! That makes me rethink my idea to "test" my daughter and see if she notices symptoms.
  4. Red Robin Gluten Free Bun

    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 and a half.
  5. Red Robin Gluten Free Bun

    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 :-()
  6. 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, and that's something I should take up with them. But I think these other ingredients having the potential for gluten come from a pretty good source. Here's a link to the article about smoke flavoring: http://www.glutenfreedietitian.com/articles/BLOGFlavoringsExtractsAreTheyGlutenFreeBlog.10.pdf. I can't find a direct link to the yeast extract article, but it's about half way down the page here: http://www.glutenfreedietitian.com/newsletter/ This celiac dietitian's recommendation is to contact the manufacturer of anything that has smoke flavoring or yeast extract in it. I don't think we should all have to spend 5 hours in the grocery store looking up sources of ingredients for specific products, or calling manufacturers, before we can put them in our carts. Obviously, an easier solution is to avoid the product. But my point is there are countless celiacs out there who don't KNOW they should avoid the product - even probably with malt syrup. There's the rub. I've seen the Australian labeling and it is much clearer than ours (anything sourced from wheat, barley or rye is in bold with the word wheat, barley or rye in it). The main reason I have a bug up my butt about this is because I'm dealing with my daughter having a serious illness. She doesn't have symptoms (other than not growing), so I don't have a way to know if her intestines continue to be damaged without doing another intestinal biopsy. I'm hoping for a little more help from my elected officials to be sure she doesn't end up with some of the serious side effects of untreated celiac disease. As it is, she is already extremely small for her age because of this disease. And losing her is my worst nightmare. I understand that those on this site aren't concerned. I won't push it anymore.
  7. 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 too (though like most people I try to avoid MSG). Where does the gluten come from? Or is that misinformation too? My guess, if there is gluten, is that it comes from barley. Again, would not be at all confusing if the FDA required barley to be listed as an allergen, but they are not required to do that. Just adding an item to the common allergens list in the FLCPA would make life so much easier for all of us! I like the idea of bold, pink lettering too!
  8. 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.
  9. Red Robin Gluten Free Bun

    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't know they had dedicated fryers! My daughter will be so excited - there's one right near our house. We don't have In and Out, but that's good to know when traveling. I thought Wendys fried nuggets in the same fryer with the fries? The Wendys stuff doesn't bother you? My daughter would love to be able to get their fries too (she really misses fries, in case you can't tell!).
  10. Is There A Gluten Free Yelp?

    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!
  11. 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, just the other day, I found out yeast extract comes from barley most of the time (not always, but since it's not disclosed, who knows?). There's also a ton of misinformation out there. Just a couple weeks ago we went to the gluten free food fair in Denver. Sprouts (a natural grocery in the west) was there handing out pamphlets about a gluten free diet. The very first page said maltodextrin comes from barley. I had to go do a bunch of searching, because I didn't think that was the case and maltodextrin is in everything! Still, my understanding is it can come from barley sometimes, but that's unusual. All this stuff could be cleared up by simply having the manufacturer's state barley on the label. After all, it's their product and they know what goes into it, not us! It's after all these realizations hit me that I thought it's really important that barley be disclosed. It only takes a few seconds to sign a petition. I'm sure all of us newbies would really appreciate it! :-)
  12. 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.
  13. What Do U Guys Think?

    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" ice cream with ingredients lists that read like a recipe are just so expensive!
  14. 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 if these sources are negatively effecting my daughter's health. I try to avoid them, but I can't always remember or know all of these sources (which have strange and cryptic names) while shopping. Other countries (Australia comes to mind) have allergy labeling requirements for these items. There is an online petition available, and I hope people who are sick of worrying about hidden barley and rye in their food will sign it. Maybe together we can get this changed! My hope is to get barley and rye added to the list of allergens required to be disclosed by the Food Labeling and Consumer Protection Act. The petition is on the White House website and only has a few signatures so far, so it can't be found by searching. The only way to access it is the link. Here is the link: https://petitions.whitehouse.gov/petition/add-barley-and-rye-list-allergens-food-labeling-and-consumer-protection-act/Bp2Tkj5n (https://petitions.whitehouse.gov/petition/add-barley-and-rye-list-allergens-food-labeling-and-consumer-protection-act/Bp2Tkj5n)
  15. 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. Does anyone know if there's a site like that somewhere?