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
I have been on both the Disney Cruise and to DisneyWorld gluten free, and can't say enough great things about Disney! They treat you like a queen (usually I"m used to be treateed like a lepor when I go out!). If going to Disney World, do what the first poster said and contact them now about gluten free options - they will send you a list of all the options in all the parks and resorts (oh, and BTW, I think 18% is now the standard tip in America - I tip 20% or more for great gluten free service). If you are looking to rent a house, there is someone on this site that owns a home right outside of Disney (just a mile or 2) and she rent is out - we stayed there last year and it was so incredible! 4 bedrooms with it's own pool and game room, etc.. There is a Whole Foods in Winter Park (I think that's the town) not too far away, so you could drive there to stock up on gluten-free food (since you are flying and won't be able to pack a lot). Let me know if you want more info on the house and i can dig it up. We also stayed at the Pop Century once, but the rooms are very small (we only stayed there for 3 nights). They did have a fast food type food court though where I got many great gluten free meals! It takes a little longer for them to make (since they use clean grill, etc.), and you have to ask for the manager on duty so they can take your order, but I had wonderful gluten-free pizza, hamburger (with bun), pancakes, and even french fries in a dedicated frier (wow, I never eat this unhealthy, but when you have the choice.....)
On the cruise, you should tell them when you make reservations that you need gluten free, and they will note it. Also, go online and fill out the "disability" form to note gluten free, and then again when you board the ship go to the help desk and make sure they have you down for gluten free. I brougth a whole bag full of gluten-free food for myself (b/c I didn't completely trust that they would get it right), and NEVER ate any of it! Every night at the sit down dinners I had a wonderful gluten-free meal (with gluten-free bread)and dessert, and for breakfast I had pancakes, etc. They really know their stuff. I stayed away from the buffetts as much as I could, but if you have to eat at the buffett just ask for the food manager to come out and they will walk you through the line and let you know what is safe to eat. Your daughter will love it!
I have decided (after just coming back from a week long trip to Hilton Head, where NO ONE understands gluten free) that all our vacations (for the next several years anyway) will be Disney
No, I don't work for Disney (after reading my post I know it sounds like it!) - just love being able to eat safely and not feel like an outcast.
I eat the turkey ones all the time without a problem, so it probably is something else. Could it have been CC (with pans/spoons, etc.)? I never eat hotdogs for this reason - they give me headaches and tummy aches - think it's the nitrates.
I agree with Cruelshoes - I refuse to cook with gluten flour. I LOVE to bake, and at first was devastated when I was dx with celiac 2 years ago, but I have adapted all of my "famous" recipes to be gluten-free and no one knows the difference. I still make sugar cookies at Christmas (gluten-free, of course), and banana bread and rolls and all the family birthday cakes, and they all love it (and are even more impressed that they are gluten free!). You can find a lot of great recipes on this site and other internet sites. I like to use Pamela's gluten-free baking mix for most of my baking, but also do the rice/tapioca/potatoe flour/starch blends (need to buy some xantham gum if you are going to make your own flour mix).
I also just smile and say "no thanks" to all the treats at work. If people give me a hard time I just say I'm allergic (so much easier).
I use pancakes (Trader Joes frozen gluten-free pancakes or home made) to make pbj sandwhiches, and I use waffles or corn tortillas to make turkey/cheese sandwhiches/rollups. Fruit (fresh or canned), pudding, yogurt, gluten-free power bars/granola, rice cakes (NOT Quaker Oats brand) with anything on them, cheese and gluten-free crackers, hummus and carrots/crackers, salad (love a salad with avocado, black beans, corn, and cilantro with lime dressing!). You can put any protein on a salad, too. These are just some of the things I bring (although I will use the office micro with a lid over my food).
Alz - I agree we are pretty pathetic here as far as gluten free offerings go, but we are getting better
The only bread mix I've tried that actually tastes just like normal bread (I nver ate white bread though - just wheat) was Breads from Anna, but they are VERY expensive. I usually just use Pamela's wheat free bread mix (I use the oven, not a bread machine) and it passes for me. If you like white, dense bread (like sourdough), the Gluten Free Pantry french bread mix is good (I make it in a regular loaf pan b/c I don't have french bread pans) - even my husband, who is not gluten-free, raves about it. It makes great garlic bread.
The chebe mixes are good if you like dense, chewy bread/rolls (I don't think they have a bread mix - just rolls/breadsticks/pizza, etc.). I recently made tortillas with the chebe mix and they were the best tortillas I've had since going gluten-free! You have to roll them really flat though or they are too thick to roll. I just ate some of mine plain - they were that good!
I'm with Lee - I store all most of my flours (potato starch/tapioca starch, white rice flour, baking powder/soda and xantham gum) in a sealed container in the pantry (and I live in hot, humid GA!) and have never had a problem. They keep for months and months (I don't use them quickly). The only thing I put in the freezer is the brown rice flour (just keep it in original bag and put that in a ziploc freezer bag). Of course, I've never used coconut or bean flours, so can't speak to those. I tried putting my Pamela's flour mix in the fridge for a while, but like Lee said, it tasted funny b/c it absorbs the orders in the fridge (once opened). Works fine just in the pantry.
Disney is the most accomodating place for gluten free travel that I know of (in the U.S., at least)! We stayed at the Pop Century hotel and I had gluten free pancakes, burgers and fries, and pizza, and all were yummy! They also had prepackaged gluten-free brownies in the gift shop - I stocked up on those! We went to a character dinner at the Grand Floridian and it was very nice - the chef walked me around the buffett line and there was plenty for me to eat. We recently went on a 3 day disney cruise, which was incredible for me (the only celiac in our group). I brought a duffle bag full of my own gluten-free snacks/foods "just in case", and I didn't eat any of it! I had wonderful meals and dessert every day! We will definitely go back to Disney every year if I have my way!
I agree - you definitely need to monitor more than just TSH - you need to check free T3 and T4 (I think that's what they are called) also. I have Hashis (developed in 2004 with my first pregnancy) and have been on various levels of Levoxyl/Synthroid since then. Went gluten free in May 2006 with celiac dx and my celiac levels are now in the normal range, but my thryoid is still changing all the time, and hency my meds are always being adjusted (I also just had another baby, so that's probably why my thyroid levels are still changing). But, I have been to 4 different endos and they all said I will be on meds for the rest of my life to replace the thyroid hormone. My mom is too.
crittermom, do you mind me asking what are your son's symptoms? I haven't been keeping up here, so probably missed it somewhere, but I was just wondering. My 3 year old daughter has horrible constipation (alleviated by Glycolax now) and had reflux as an infant, and my new baby has reflux really bad (however I am gluten free - dx celiac - and he hasn't had any gluten (breastfed), so I don't think that could be related). We had my daughter tested a few months ago for celiac (negative), but I know the tests aren't very reliable, especially at her age.
Thanks for the info. I talked to my dr. and when I mentioned the mayo in FL, he said "no way". He said he can get me into the MN one, but I'm not ready to bite that bullet yet (I have a new baby and a 3 year old, and live in the south, so it will be a difficult task to go up there!). I'm still thinking about it....
My dr. wants me to go to the mayo clinic, and I see that there is one in Jacksonville, FL. Since I live in Atlanta, I would prefer to go there, but was wondering if anyone had any insight into it (is it as good as the original?). I have confirmed celiac dx, hashimotos, raynauds, insulin resistance, and PCOS, but dr. thinks I have something else endocrynology wise going on since all my symptoms are still present after almost 2 years gluten-free (and my celiac blood tests are now normal, so I know I'm gluten free).
Well, first of all, don't beat yourself up for making a mistake - we've all done it and you will make many more And this is the hardest time of year! I've learned to either go hungry at stuff like that or bring my own snacks - I won't eat anything that I don't know exactly what's in it and how it was prepared (i.e. cross contamination) anymore
Second, I had the flu and was vomitting and D for about 5 days just last week, and my husband had the gas/burps that you were describing, but that was it (I'm the celiac in our family), so it could have just been the flu, but it could have been gluten - you just never know. My symptoms vary so much I can never tell. Good luck and try to make it through the holidays
Kara's mom - I just stayed at Pop Century last year and the food court there is great for gluten-free! Just tell one of hte workers your daughter needs to eat gluten-free and you need to speak to the chef/manager on duty about what she can have, and they will come out and talk you through what is safe. They make the gluten-free food separate (gluten free burgers with buns, french fries fried separate, excellent gluten-free pizza, waffles, etc.), so it does take a little longer than the rest of the food. I'd recommend ordering her food first, then have everyone else order/pick up there food if you eat there. We didn't go to the parks (wree there for a wedding), so I ate EVERY meal at the Pop Century food court. They also had prepackaged gluten-free brownies in the gift shop - I bought some for the road trip home and extra for home!