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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About splash

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  • Birthday 01/08/1977

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  • Gender Female
  • Location Washington, DC
  1. I take New Chapter Organics Woman's One Daily. It is food-based and is the only vitamin I've tried that my body really absorbs. Unfortunately, the New Chapter prenatal vitamin contains oats even though it claims to be "naturally gluten free."
  2. I agree that 20 ppm is infinitessimal, but for now I'd be more comfortable eating a product that declares that the equipment used is gluten free than eating a product that is 20ppm gluten free but whose manufacturer is not willing to make the same declaration about its equipment. But I do thank you for clarifying the state of things! And to bring it full circle, to TJ's credit they are following existing regulations AND they make a concerted effort to declare their manufacturing practices - and the latter is something many companies could emulate.
  3. I'm highly sensitive and have not had any trouble with Amy's products - they are some of my staple items. On the OTHER hand, Trader Joe's "Gluten Free" stocks and soups have made me very sick on many occasions. It has been a major problem because I'm often invited to dinner with family and friends that make a commendable effort to buy special ingredients for me but unfortunately have gotten me quite sick. I'm fairly certain that TJ's is to blame for the fact that my Thanksgiving this past year was spent in the bathroom. Some hostesses, for better or worse, insist on feeding me and also will not allow me in their kitchen to see what they've used. It's like being spoonfed impending torture. The problem is that Trader Joe's can label its soups "Gluten Free" when in fact they mean "no gluten ingredients used." I give them credit that they do disclose in the ingredients section that products are manufactured on the same equipment with wheat, but this is fine print that my family does not read once they see "Gluten Free" on the front cover. And because the term Gluten Free is not regulated (and - worse - those who want to regulate it want it to mean that a certain minimum level of gluten is okay), Trader Joe's doesn't know they are doing anything wrong. I adore TJ's for many things, but this problem is literally a major pain in the arse. My absolute least favorite thing to do is to launch a 10-minute conversation at the dinner table about why shared equipment is bad, which inevitably leads the entire table to talk about allergies and symptoms for an entire meal because it fascinates them. I really wish TJ's would save me from this ongoing agony and just take that stupid 2-word phrase off their soup.
  4. I really appreciate hearing these points. I have not baked much since going gluten free several years ago, and I definitely haven't shopped in a typical baking aisle recently. So I haven't had the experience but I can definitely visualize the serious frustration with having to purchase something covered in gluten. I'm also extremely sensitive and that would just send me running. (Maybe it's why subconsciously I've avoided baking even though I love to cook!) And it's so true - why are bags of flour the one grocery product that aren't double sealed in heavy plastic?! It would really do a great service to encourage better packaging for flour. I do think, though, that the art of the "gluten free aisle" still needs to be perfected. It's true that organics and other specialty items also often appear in the same section - and I think that model worked when organic food was a fringe interest that only hippies cared about. But today organic food has become much more popular... one day the Gluten Free/Organic section is going to be larger than the rest of the store ;-) So, what is the best advice to give to grocers that are trying to do the right thing?
  5. Just to add a little reminder to what I'm sure sounds like a fairly unhappy conversation: this diagnosis is GOOD news. Your wife has probably been experiencing confusing and frustrating, and possibly embarrassing symptoms for some time now. Many people go to the doctor and find out that they have permanent illnesses, or that they are doomed to taking medication and having blood taken for the rest of their lives. The diagnosis of celiac disease was, for me, the best news I'd ever heard in my life - and that's still true years later despite all the trouble the diet causes. There's no drug necessary, there are no side effects, and your wife's health is absolutely going to improve. Next time the two of you struggle to explain to your coworker's spouse that, "thank you for the dinner invitation, but please be careful..." just remember that the alternative could be much, much worse. This diet is the best thing that could have happened to her.
  6. Many major grocers are taking up the trend of establishing a separate "Gluten Free Aisle" of the store. What does the celiac community think of this idea? As the author of the poll, I have to admit my own bias: while I'm delighted that grocers are making gluten free selections a priority, in the end I find it fairly inconvenient to finish my shopping with a special visit to the Gluten Free Section for the items that I could not find in the rest of the store. I'd love to know what others think about this, and how this trend came about. Thanks in advance for participating!
  7. Okay that is helpful - so if it takes 2 yrs for the gluten to get out of my system (and my skin) I don't need to start thinking something wacky is going on for at least another 6 months. Somehow that actually is comforting. It still does seem crazy, though, that new blisters keep appearing every day or so for several weeks on end. I just figured a "flare up" meant that you have an incident one day, maybe triggered by stress or a bored immune systems or a bf's beer-lips or whatever it is, and then it goes away. Where are these new blisters coming from? But I take it I need to have patience. And thanks, by the way, to Yola - glad I'm not alone. I can think of men who have been in my life who would be much more understanding that the most recent one ;-) Not that he's a jerk, I think he just couldn't wrap his lazy head around the idea that the sensitivity could be that high.
  8. I have been gluten free for 1.5 years and haven't had any major DH symptoms since I started the diet - until now. When I was a teenager I had the worst rashes on my hands, and at the time we thought it was "seasonal" (that seems hilarious now). It would mainly show up on my palms and between my fingers, itchy blisters either like heat blisters or deep below the skin that would dry up and crust leaving raw skin. Just in the past month, after almost no blisters for 1.5 years, I am having flare ups almost daily again on my hands, even now that I've spent two weeks not eating out, not taking any chances. Have others experienced that the blisters keep popping up weeks after a reaction? I can't have had a very significant amount of gluten - the most that I can think of is that the guy I was dating at the time drank beer before kissing me, and now thinking back I do remember noticing the beer on his breath. And by the way, can I state for the record that this possibility is so disturbing to me - what an annoying thing to have to tell someone when you're first dating!
  9. My reactions to barley are much more delayed than for wheat. After eating wheat I'm usually very sick within the hour. Last week I ate a Nanna's cookie that I accidentally overlooked was "No Wheat" instead of "No Gluten" and halfway through wondered why it was so tasty - it was made of barley flour. Aside from some mild geographic tongue that evening, nothing happened for about 4 days, and then I started to feel lightheaded and bloated, and got blisters under my tongue and a bunch of very irritating exema on my feet that looks like bright red coffee mug stain circles. I've been gluten free for a year.
  10. Results

    PS I have been seeing a nutritionist, who has been a godsend to help me straighten out my symptoms and know how to listen to my body. It's the kind of help that doctors just don't know how to give. If you're in the DC area check out - Charlotte really knows what she's talking about and is a total angel!
  11. Results

    I tested negative on both blood test and gene test (I didn't even bother putting myself through the biopsy) but I have severe reactions any time I eat gluten, and the gluten-free diet after one year has changed my whole life. My genetic test showed that I have double DQ1, and apparently DQ1 in some countries is associated with gluten intolerance. They don't call it celiac if it's DQ1, which never made sense to me, but the point is that gluten is bad. It's tough at first but lots of people are becoming more familiar with gluten so you can find plenty of yummy food, and if you want to avoid eating one or two little ingredients out of the millions of edible things on this Earth, I say you should be free to do that. No matter what disease you have or don't have. In another few years it will be like saying you can't eat peanuts or shellfish so stick to your guns - listen to your body and don't eat it if you don't want to!
  12. PS I was shocked that night that I ate the soy sauce (the tuna was drenched in it) that I didn't have a reaction right away. What's up with that??
  13. I've been gluten free for a year now. Stomach aches are my most noticeable symptom - once the reaction starts my stomach burns intensely and then within about 15 minutes I have urgent diarrhea. (Sorry for the graphics...) So it's pretty easy to tell that I've ingested something bad, but lately it has happened after a couple of possible culprits and I'm wondering if the timing of the reaction could tell me when I had the gluten. For example, yesterday afternoon (4pm) I trusted a home-made oatmeal cookie from a gluten free parent (very tasty but made me nervous), and then in the evening (7pm) had a bean salad that had some unknown kind of vinegar. By 10pm I had a severe reaction. So which one was it? On another occasion I had a bite of soy sauce marinated tuna around 10pm, then had a probably too risky bloody mary around 12 the next morning, and had a severe reaction at 4pm. I'm just wondering if reaction times are consistent enough (and happen quickly enough) that I can say for sure it was something I ate in the 4 hours before the reaction. Anyone who's been doing this longer have thoughts? Can that kind of stomach reaction happen as long as 18 hours after ingestion? Does a person normally have the same reaction time every time?
  14. As much as I would love to have Guinness for a week, it looks like it didn't take more than half a beer after all. I haven't had any skin problems since going gluten free, but last night I started to get a bunch of blisters on my hands and I'm not entirely GI-comfy right now even though that didn't come on all at once like it would with wheat. What I had the other night was an Avery IPA, which has no wheat in it, just barley and hops. Man it tasted good. But, alas, I don't think I'll try it again. Funny that the symptoms for different kinds of gluten are so different!
  15. I'm double DQ1 and have had twitches under my eye a few times. I've now been gluten free for 8 months but they still come back sometimes and I can't tell if it's connected to accidental glutening. It never lasts more than a few hours for me. My mother, who must have at least one DQ1 since I'm double, had an eye twitch that lasted nonstop for two years. She tried everything including hormone therapy but nothing worked until it just finally went away. Now that I'm gluten free, she will avoid wheat from time to time and says she feels better, but she won't commit to the diet. Her mother has had chronic D and C her whole life. The connection with eye twitching was the only thing that convinced my mom that something genetic might be going on... But something interesting about the gene thing: I learned from an article on this site that EVERYONE has two DQ genes. (see It's the DQ2 and DQ8 that are more common for celiacs, but gluten sensitivity (and I still don't understand what the difference is there - from what I can tell sensitivity is actually more severe) can appear with othere alleles. So just because you have DQ-something doesn't bring you closer to being celiac, it just makes you human ;-)