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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
If anyone is still curious about this topic. I bought Amazing Grass Organic "Amazing Trio" Barley Grass, Wheat Grass & Alfalfa Whole Food Drink Powder, which is labelled Gluten Free & Raw.
And, right now (2 days after drinking it), after having put it in a juice, I feel very raw on the inside! I'm not 100% sure that this caused a reaction, but it seems the overwhelmingly likely candidate, as I am very strict and careful with what I eat. And, I haven't had a reaction like this in years.
I also have post-herpetic (post-shingles) neuralgia, and after two days feel like I was in the ring with Joe Frazier, with a lot of serious diarrhea.
One spoonful of this gave me a major reaction. I have no idea how they separate the seed kernel and the roots from the stalk, but something is amiss!
They note on their website:
"Q.Are Amazing Grass products Gluten Free?
Yes, Amazing Grass products are gluten free. Our cereal grasses are harvested prior to jointing, before the grain forms and any gluten is present. We test for gluten and our products are enjoyed by people worldwide with gluten free diets including celiac disease. Please note, our Energy Bars are manufactured in a plant that processes wheat, milk, eggs, soy, peanuts and tree nuts."
I don't know how they are testing for gluten, but I'd say avoid this is you don't want take the chance.
Our guts take a long, long time to heal. Do you visit any naturopathic doctors? They have helped me figure out what to take and what not to take--how to get my gut working, after a lifetime of it not working right. They focus on helping your body heal, not just diagnosing and medicating.
I strongly agree with KVoght and others who've posted. I was not diagnosed as celiac for 30 years! I tended to avoid things like bread but was sick always with nearly the same symptoms that you describe.
I went gluten-free, and could notice the difference in weeks. I'd say, let the MDs scratch their heads (they can do that for a long, long time)--go ahead and figure out what will make you feel better--try to go gluten-free for a few weeks and see what happens.
I've been trying to meet other celiacs in NYC, but haven't had a lot of luck. I've emailed some coordinators of support groups, but haven't heard back from them. If anyone out there is actually in a NYC support group, could you let me know when a meeting will take place?
I've got a PDA (palm pilot) with the downloadeded food and drug lists from Clan Thompson ($38). I love it and have benefitted from it--for instance, the drug list let me know that Maalox anti-gas tablets and Tums have gluten--something for a celiac to be aware of! Yes, maintaining your own list is a good idea also.
And I believe you can use MS Word on many PDAs nowadays--or you can cut and paste text onto the program (you can type on your computer) and download it onto a palm pilot. It is great--I really rely on mine.
It is so refreshing to hear other people's perspectives on this!
I can sympathize with Tammy a bit, however. My family initially took some convincing to even accept that I have celiac disease--and that it was a "real" disease. I'm amazed at the level of support so many folks on this list have had. My sweetie is my rock and lends me strength, but not everyone simply accepts celiac disease as a serious problem, especially when they first hear about it.
I appreciate when people ask questions about my food--absolutely. But I don't like when they interrogate or go on about how much they would miss pasta! As if I'm asking them to! But what bothers me most is that many people assume that a gluten-free diet is a fad diet or some Atkins spin-off. Ok, I'm taking a deep breath now!
And, yes, I hope people don't mind my venting also!! Thanks,
I don't want to insult the medical profession--or maybe I do just a little--I think you should trust your gut! I did not for decades and instead listened to MDs tell me all sorts of things (such as that I was anorexic even though I ate and ate). Once I went off gluten, I knew it was the right thing for me. Months later medical science "proved" that I have celiac disease, but really only confirmed that gluten and I don't mix well.
Also, don't believe the weight thing about celiacs--many are underweight but nowhere near everybody. No symptoms are identical. I went for a long time with an underworking and then a not-working thyroid--and was not diagnosed with hypothyroidism because I only weighed 145 and am nearly 6 foot.
Listen to MDs but don't think they have the final word on your health--you do. It is something I'm still learning.
When I was first realized that gluten was the culprit behind so many secondary illnesses, I became depressed--or rather my depression became overt. One of the main things that has helped me is that my long-time partner started shopping for gluten-free things and even baking gluten-free cookies and banana bread--her devotion and support showed me that this was possible. I'm sure your wife will appreciate your support--and, perhaps find her some really, really good gluten-free food that she particularly used to like.
Also, when I began to come out of my depression, I got angry. And, I'm still pretty angry about years of misdiagnoses and the fact that the illness won't go away. You might brace for that a bit too--or if it does come, recognize it for what it is.
I don't know, but usually caramel coloring manufactured in the US is not made from gluten-containing grains. And, I think, Quaker manufactures in the US. In Europe, caramel coloring often has gluten--watch out for Ricola cough drops!
Thanksgiving was great, but the day after is not! I've been sick all day--from something I ate last night, I'm fairly certain. Its the same sort of symptoms I had before going gluten-free on Jan. 28th this year (I'll never forget the day).
I went out last night for Thanksgiving with my in-laws to their fav. French restaurant and had turkey w/o stuffing and w/o gravy. All the same, I got sick. I'm wondering if the dark meat of the turkey might have absorbed gluten from the stuffing. Any thoughts on this???? I can't think of what else might have caused this reaction.