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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 Ciel121

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  1. Apparently there is a doctor saying the same thing:   Don't know. Don't care. I don't drink coffee anyway. Didn't realize I'd have to do citations like in a dissertation. Do you need an M.D. to chat on here? Didn't realize. Perhaps you have an M.D.? No? Is there absolute proof that Dandy Blend has gluten in it? Probably not.  I thought the forum was for Celiacs looking for help and support. I can do MLA, APA or Chicago Style citations if you want. I mean I am an English Professor. Not good enough I guess.   Not finding a lot of friendly support on I think deleting my profile and refraining from the forums would be best. Won't recommend the site to Celiac friends...Peace out.
  2. Starbucks?!

    I'm impressed by Celiacs who try to eat at restaurants or Starbucks. I won't go to any restaurants...perhaps there are 2-3 exceptions, but I go very rarely. They are always restaurants that are off the beaten path. I'm horribly suspicious of chains catering to Celiacs.  I'm betting on the coffee itself. I know when I'm around gluten I never feel it. I can touch it and it has no effect on me. Of course I don't try to. I avoid it.   I know what we put into our bodies is much more potent than even what is outside. I always bet on something I ingested. And it's just not that easy is it? It seems there is hidden gluten in everything--everything. It's enough to drive you mad.   But I still bet it's the coffee! Here's another article:
  3.    Ha, good question. I have Mitral Valve Prolapse and get heart palpitations. I've had numerous trips to the ER over this, and usually not at my request. A doctor sent me to the ER after he gave me Lidocaine by injection at age 21 when I was in college. All started then. It's not comforting when your doctor starts to panic. I remember sitting there with all the heart attack victims thinking, this is way too young to be in this section of the hospital. Eventually I was told not to consume caffeine. I can't even drink decaf because that is still too much caffeine for me. I drink decaf green tea and decaf black tea. It's bad.    Oh and incidentally...this article explains that the gluten intolerant and Celiacs should not drink coffee... :-(
  4. My Test Came Back

      It's exciting, isn't it? I remember that first week on my elimination diet...ah. I told the doctor it felt like my stomach and abdomen had simply disappeared. I swear I had to look down to see if I still had an abdomen because I felt like a floating head. :-) Great feeling. Congrats to you! Stay with it.   I was lucky and my test came back positive, but my dad refused to go to the doctor to get tested and just went gluten-free. I kind of wish I had more testing done. All they did was a blood test. :-( I know there is genetic testing and the endoscopy, which I never actually had. I'm so excited to go to the Celiac Center at Columbia University at the end of the month. I have learned that it is very important to find a doctor who is an expert on Gluten Intolerance and Celiac disease. Were you lucky enough to find a doctor like that?    I also recommend reading Gluten-Free Girl by Shauna James Ahern. She has a great attitude and some suggestions on how to cope. Love that book.
  5. Um...because I want coffee. Tea gets old. I'm Polish. We drink more tea than the English--much, much more. No more tea. I'm tea-ed out. Sick of it. Green tea, white tea, black tea, darjeeling, Thai tea, jasmine, rooibos... had them all. And the coffee substitutes absolutely do resemble coffee. Have you tried them? Taste much better actually. Don't intend on letting Celiac disease rob me of having a rich life.
  6. I may have found another option in coffee substitutes. I'm contacting the company now. It's called Ersatz and is not made with barley or any extracts of it at all. It is apparently not processed with anything like gluten or barley or soy. They list it as gluten-free. Very excited to check it out. Thought someone else might be interested...
  7.    So funny! I have to agree that there is something that just makes me paranoid and others paranoid about gluten to extreme levels! This can drive you nuts after a while. I've been gluten-free for 4 years, so I'm not new to this and I have read every book, article on the market and internet on this, yet I am still learning something new every day. What is annoying is that I have become even more sensitive to gluten over these 4 years and have ataxia symptoms now when I get badly contaminated...errr. Plus it seems I have a brand spankin' new allergy to chocolate...time for some carob.    I have an appointment at the Celiac Center at Columbia University in late June. It can't come soon enough to answer my tough questions.    As for this company, Betty Lou's, I did read up on gluten testing being inaccurate for ELISA testing for barley. With that being said, Betty Lou's shares equipment with barley. I don't know if the GFCO has a way of testing barley gluten that is more accurate, if not then this might be not gluten-free due to the barley gluten exception.     Ahh...yes this is madness after a while. I have to admit I have days when I've just had it and eat apples, chicken and sweet potato and that's it.     But I swear I never reacted to the Dandy Blend coffee substitute. I gave it up, but I never reacted to it. Weird.     Incidentally, I read an article about Australia certifications for gluten-free being below 8 ppm and Celiacs having less symptoms, so there might be something to that lower gluten rating.
  8. If barley gluten is not accurately tested by ELISA tests then this is quite a problem because barley extracts and enzymes are used in many gluten free products like Soy Dream and Rice Dream.   This was in interesting article:
  9. No, the chocolate peanut butter is a very different issue. I'm pretty sure I'm allergic to chocolate. I never react to Dandy Blend, but it might be time to toss it. Sad. The woman who posted about it and where I found it has a wonderful web site and is a gluten-free vegan. She is a Celiac, so maybe I'll mention this to her.
  10. Thanks! I came to similar conclusions as what some people posted. I might be allergic to chocolate, though I'm not sure. My reaction is definitely not from soy because I never ever get headaches from soy.   So the black circle logo means it is always certified by the Gluten Intolerance Group?  That is what is on the package of this chocolate peanut butter product. I called this company (Just Great Stuff produced by Betty Lou's) and spoke to a man who introduced himself and the son Betty Lou, who was quite rude, might I add... He assured me they do gluten testing and score below 5 ppm, but would not name the group that certified the product. Not sure why. But he kept saying there is only one group that does it, which is not true. Then he went on to complain about how much it is costing him to certify his product as gluten-free and was reminiscent about the old days when he didn't have to go to all this trouble.   Even if this product is truly gluten-free, I would not buy it from a company that has no desire to support Celiacs..   But I totally agree with Adalaide. If it doesn't state who certified it, I won't buy it.
  11. I have been drinking the most delicious and healthy coffee substitute, Dandy Blend. It is a blend of roasted dandelion root (which detoxes) and beets. It is also a blend of rye and barley extracts...I know, I know. Apparently gluten is removed and only the extracts are used and the product is repeatedly tested. I get no reaction to Dandy Blend that would suggest gluten, but I worry that the mild side-effects I get from it could be ataxia. It contains less than 5 ppm of gluten. I'm not sure what that means... I love this stuff, so I hope I can keep drinking it.
  12. I bought a chocolate peanut butter powder by the brand Just Great Stuff that states it is certified gluten-free and felt sick, so I double-checked the package...apparently it is made in a facility that processes wheat, yet it is certified gluten-free... That is very confusing because I can tell you, it's NOT gluten-free. I got a mild headache compared to my gluten migraines, and my stomach hurt. Does this label really mean anything? Does it protect us? I'm not so sure any more. 
  13. Aha, then that could have been it at Jamba Juice...I will stay clear of it. Thanks.
  14.   Does anyone know if wheat grass is gluten-free? I always assumed it was not and avoided it until recently I read an article that stated that wheat grass does not contain gluten. Can that be true?    I was even more confused when I ordered a smoothie at Jamba Juice and felt very sick, definitely glutened. Of course I thought it was from contamination from wheat grass, but perhaps not. Any ideas or articles?
  15. Wow, great idea. A non-processed food diet is ideal, right? Very healthy and great for weight management. I guess that's what I do automatically if I don't have the energy to explain Celiac disease, ha. Also, eblue, tell your family that Celiacs and people with food allergies are officially considered disabled by the government under the Americans with Disabilities Act. That should shake them up. :-D