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
Hi--I found three great places to eat in Maui. The best was the General Store in Haili'imaile--helpful waitresses and fabulous homemade food from chefs who know all the ingredients. They even called the people who made the coconut ice cream just to make sure of the ingredients and I hadn't even asked them to. We went there twice. Another is Joe's, up above the golf course in Wailea--associated with the General Store and with the same knowledge of ingredients and readiness to adapt a recipe for you. The other place was unexpected--Fred's Mexican food on the main road (S Kihei road) in Kihei. They had a typed up list of safe and not safe things to eat and even knew the less obvious things like soy sauce.
There is also a health food store on S Kihei road right inbetween Kamaole beach parks 1 and 2 across the street near the sports bar. It's called Hawaiian Moon and they have gluten free bread, non-dairy milks, and other essentials. The prices will make you faint, but all Hawaiian food prices are high.
I'm an elementary teacher and I have celiac. I've only had a few kids on 504 plans (eg for diabetes) but I think it might help. 504 plans just mean getting your child on an IEP for a health reason--it's called other health impaired. It would at least give all the people involved with your son time (since you're a teacher you know how rare that is) to sit down together with you and think out all the implications of his disease. They'd have to write it all out for your approval. At least you could plan out routine food problems like birthdays and tell everybody, all at once, how serious the consequences would be if he ate any gluten. And everyone who works with him would get copies. I'm not sure it would solve everything; people are always behind and in a rush and incredibly ignorant about food ingredients. IF they even thought about him and the school council party they probably thought oh surely there's lots to eat there. I have so many people say they didn't realize pizza, or cookies, or crackers have wheat in them. Hello?
A 504 might be especially good for taweavmo--your daughter is still pretty young and can't read ingredient labels well enough yet. I read labels for two little second grade celiacs at my school, but the fifth grade one knows as much as I do.
I love Dr. Ben Pataroque. He is in Tualatin across from Meridian Park Hospital and just off of I-5. He is not the world's authority on weird diseases (I have celiac and fibromyalgia) so I've been bringing him articles for several years; I think he actually reads them. He is kind, patient, and a very good listener. He spends a lot of time with you and does not give up. He is good about coordinating with my naturopath and gastro. He'll even refer me for tests that my naturopath recommends so the insurance will cover it. His office staff is very helpful too. If you go see him tell him Susan says hi. 503 692 3647
gastroenterologist Dr. Alan Kaynard 503 297 8081 near St. Vincent's in Beaverton, Oregon
I sure wish I'd known him when I was diagnosed 7 years ago! He is patient, listens well, and answers odd questions very respectfully. He did all the followup blood/nutritional type tests that my former gastroenterologist (who sent a letter telling me I had celiac) SHOULD have done.
I was 46, but I'd had dangerously unpredictable digestion since college. One doctor told me I had irritable bowel--I said, "Isn't that just a medical term for we don't know what's wrong with you?" I gave up milk and that helped. I started eating bananas, rice, and eggs before any major event as they were the only foods that I knew didn't make me sick. A new young doctor referred me for a test when my reflux got so bad that I lost my voice for several months.
I have two thoughts. Are you improving? A lot of celiacs don't tolerate dairy because of the intestinal damage--that is where the enzyme for digesting dairy is secreted. Some celiacs regain the ability to digest dairy after they heal and some don't. Some--hopefully you--never have a problem.
My other thought is that most celiacs are very low on calcium. You haven't been absorbing nutrients very well for a while. It is pretty standard for newly diagnosed celiacs of any age to be referred for a bone density test, just to see how things are. We are at higher risk for osteoporosis. The DEXA scans are easy and not scary at all. You should ask your doctor. Perhaps your body "knows" this and is trying to compensate by drinking a lot of milk? (I crave nuts and beans all the time--still not sure why.)
Hopefully when you were diagnosed your doctor gave you a lot of blood tests to check on your nutrition. You might think about taking some sort of calcium/magnesium supplement (gluten-free, and there is lots of info about choices on this forum--just google it on the forum) and it is a very good idea to take vitamin D3. It helps absorb calcium and many people, especially in northern latitudes and most celiacs, are low on it. It helps your immune system too.
It might help to read more on this site about the damage that can occur if you have celiac disease and you keep eating gluten. A lot of us were undiagnosed for years (probably at least 15 years for me) and are paying the price of prolonged nutritional deficiencies or neurological damage.
If you go gluten free again stock up on other things you really like and focus on them instead. I always have guacamole in the freezer and chocolate and peanut butter in the cupboard for when I get into a gluten-free sulk. (I still get angry about pizza, even after 7 years.)
That is exactly what it did to me. I'd log on with same everything, it would say welcome frec, then switch me back to being a guest again. It just rejected me again even with the new email and new password and ID. I left Explorer and used Mozilla to get here and that works. Thank you both very much. And thanks Scott for trying to help. I know you're busy.
I got a new computer in January. It died in a power outage--very sad. I still had the same email, but when I tried to log on to the forum I couldn't. It recognized me and my password but always sent me back to the Guest register here page. I could read the forum but not post. I've been quite frustrated.
Anyway, I finally got new email (for other reasons--long story) and re-registered as a new person with a new password, and now I can post again. I was frec and now I am frecOregon. Can anyone explain what happened? I'm suspecting something about my new computer security or something?
Could I put something on my old frec page to show I'm frecOregon now? Thanks.