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
Thank you jnh38, for your list of foods to avoid! No one had ever told me this. I am in the midst of experimenting with those foods, and your doctor is right on the money! I am so grateful for this information. Thank God for this Board, since the medics don't seem to know as much as they should about Celiac Disease! Of course, there isn't much left that I enjoy eating that is safe, but I will get by!
Actually, one of the pharmacists at my Group Health Pharmacy told me that gluten is not uncommon in pills. It is used as a binding agent. It is not an issue in gelcaps and capsules, but in pills, always check. One of my prescriptions contained gluten, and it took a week and a half to get something else into my hands. I was not a happy camper for the duration, being off my med for that long. I ended up using the brand name drug, which I had to get filled at a regular pharmacy, as Group Health uses generics whenever possible. Every pharmacy in town used the same generic as GH did, because it was the most economical. There was another generic that was gluten free, but no one had it. To wait for a special order would have kept me off the med for longer, so I elected to pay more and go with the brand name. Group Health has a big notation on the top of my record that I have Celiac Disease, and that they cannot dispense anything to me that contains gluten. Doctors don't know the gluten status of drugs, so my PCP worked with the head pharmacist to get me back on something.
First let me say that I live in Eastern Washington State, and my sister, who was diagnosed almost 4 years ago lives in a small rural town in Eastern Kansas. When I called and told her I had been diagnosed, one of the first things she said regarding eating out is "Don't go to the Olive Garden!" I asked her why, and from her answer I would say their staff has no appropriate training. She said they cooked the gluten free pasta in the SAME WATER as the regular pasta!!!! It was never one of my favorites, and I rarely went there anyway. This has made me very cautious, knowing that having a gluten free menu doesn't necessarily mean anything! Since I have only been diagnosed for 2 months, I am very wary of eating out and haven't been anywhere yet!
I've been reading this board since my diagnosis (2 months ago, just like the OP). This thread pushed me to register! I do not have another autoimmune disease with the celiac disease, but seem to suffer from sequential autoimmune diseases!!! 17 years ago, I was diagnosed with Graves Disease, and inexplicably, a year ago, it went into remission. It doesn't usually do that. For 16 years I was under the care of a wonderful endocrinologist who not only treated my symptoms, but worked with me whenever my dosages needed a change. For me, my symptoms were always connected to my Free T3. Now that I have been symptom free for a year, I only have to have a TSH done unless anything changes. When I told my endocrinologist that I had been diagnosed with celiac disease, she told me that she has quite a few patients that have it, and D3 absorbtion is a problem for them. Mine was low, in spite of my taking a large dose with my calcium, as the Graves caused osteoporosis. I have doubled the dose. My B12 was high, as Pernicious Anemia runs in my family, so I had been taking a good dose of Methyl B12. I have cut that one in half. I always joked that I got Graves instead of Pernicious Anemia! All my other nutritional tests were good/normal. I have been completely gluten free since my diagnosis and am still having issues with fatigue, which is discouraging. But now I see that this could go on for a long time yet. The books I read said it could take up to 2 years to heal! I am glad to hear of some people who felt better after 10-12 months. My sister was diagnosed almost 4 years ago with DH. She has never had GI symptoms, which is all I have. I take it that some people have both. We are absolutely sure our Mom had celiac disease, but in those days they didn't diagnose it, so she was told she had a "spastic colon" and then later they called it IBS. I am a bit discouraged that I am still having to curtail some of my activities.
My avocation is dog training, and I teach at my training club and volunteer at a shelter. (Ruby is one of my Border Collies). I have cut my hours at the shelter, and are between sessions at the club. That is a help. But the brain fog people refer to is hampering my ability to indulge in my personal hobby/passion - sewing and tailoring. When I have the time to work on it, my brain might not be out of the fog far enough.
I sure wish someone could tell me how long this will go on, but I understand that everyone is different, and it not only depends on how much damage has been done (lots), but on how fast an individual may repair herself! (Unknown!)
I am glad to have this forum. I have been through something similar in the past (ovarian cancer 19 years ago) and a similar forum was a great help. Actually, the chemo I had wreaks havoc on the immune system, so I guess I shouldn't be surprised at anything. Heck, celiac disease isn't terminal, so I try to keep it in perspective.