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 can't claim an "official" diagnosis of celiac, either. I don't even have the celiac genes. But I have rock solid proof that I have an immune response to gluten: I eat gluten, I get sick.
So I call myself a celiac because that is best word to describe my body. It's not like anybody has ever asked for my membership card!
Please listen to yourself and your body and do what makes you healthy. The really good news about gluten intolerance is that you don't have to get a prescription or negotiate with an insurance company for expensive treatments. Our best and only treatment is in our own hands and that makes us lucky people compared to people with other chronic illnesses.
p.s. I really know the feeling of wanting validation of your concerns... Let us be that for you instead of the stupid doctor!
Our entire family eats gluten-free and attends a Lutheran church. (Lutheran = potlucks at least once a month. )
I don't have any particular ideas to add, but here are my experiences:
One woman at our church always brings the most amazing baked beans to potlucks. Because we are friends, I was able to ask her about the ingredients and the preparation process and have felt comfortable eating her dish. It is in a large container with a long spoon so I don't fear CC.
We always bring something main-dish-y that we really love to eat to share with the others. That way we are sure to get a main dish, we are sure to like it, and we're sure it's safe.
We always bring a little this-and-that from home to fill out our plates just in case no one brings fresh fruit or other safe foods. You can never tell what you are going to get at a potluck, so it's nice to have a fallback plan. The first couple potlucks after diagnosis we got some strange looks from the other members for bringing single-portion extras, but after we explained the rigidity of our diet, no one ever was bothered by it.
Lastly there is a "faction" (haha) at our church that is subversively plotting to require allergen/irritant labels on potluck foods. We're only kidding of course, but this person has celiac, that man is on a salt-restricted diet, this little girl hasn't outgrown her egg allergy yet, and that person has a nut allergy, etc. We've gotten a few good conversations started and people are beginning to realize that when a person on a restricted diet asks you detailed questions about your recipe and cooking methods, they aren't being rude, they're being safe.
I wonder if Frito-Lay products vary in safety by region. At a support group meeting, someone told me that the products processed in the Plano, Texas plant were safer than other Frito-Lay products. This was only her subjective opinion based on eating Frito-Lay products on road trips that had been processed at other plants.
Since I live in Austin, most of the Frito-Lay products available to me are from the Plano plant. I have never reacted. I do check to make sure I'm buying Plano processed product before I purchase.
I'm curious where the chips that caused reactions were processed...
Thanks to everyone for your support! This is the best forum I've ever belonged to.
Just for the record! I have been properly taught my manners. The thank you note went out in the mail immediately and I absolutely know the family didn't mean anything by it. I know that $40 is amazingly generous for a teacher gift. I would never, ever ever ever ever express these kinds of emotions to people who don't have celiac. I only needed to whine and cry for a minute in the presence of people who know what it's like.
Maybe in a few years I can just pass the gluten gifts along without even paying them much thought. THIS YEAR, it feels like a cosmic conspiracy trying to make me feel worse. For example, a huge tin of Ghirardelli MILK chocolates arrived in my mailbox today and I'm CF in addition to gluten intolerant.
Our extended family will be cashing in on all these goodies when we go visiting... everyone in my house is Gluten-free Casein-free. (And we'll be left out of the Christmas meal festivities for the first time ever this year too... I saw this coming and made a Gluten-free Casein-free Turkey dinner for Thanksgiving and everyone came to my house so we've already had it "our way" and they get it "their way" once too - a good compromise.)
I haven't posted in awhile... mostly because we're rockin' and rollin' on our diet and I'm uber-busy. But I really need a gluten-free friend today!
I just received a $40 gift certificate to California Pizza Kitchen as a Christmas present from a mother of a student where I teach. Luckily I didn't have to open in in front of her or the student, I would have no idea what to say!
ALL of my students know that I'm gluten-free because I make them clean up extra after having a gluteny snack (this is high school and they always have some snack to nibble on from home). The kid in question even said he pitied me that I can eat "real" pizza. I guess he isn't the kind of kid that tells his mom everything.
Anyway, $40 is a generous gift and I want to be happy and thankful, but instead I just feel sad and left out. I've already researched my CPK menu options and I can't say it's too exciting (unless anyone has new information to add!). I might re-gift the card after sending a vague but grateful thank you note to the family who sent the gift.
Why CPK?!?!?! Why not PF Chang's? The universe hates me. This is my first Gluten-free Casein-free Christmas and I didn't expect to get so easily bummed out over a stupid gift card...
A "504" is a document that enforces section 504 of the Americans with Disabilities Act. The law says that people with disabilities have to have equal access.
Most of the time, when someone has a "504" it's a document at a school that states what accommodations must be made for the student for the student to have equal access to education.
For a celiac, a 504 document might state that the student is entitled to gluten-free meals in the cafeteria, or it might state that the student has access to a fridge and microwave for bringing meals from home.
Some people think that having a 504 document is necessary. I'm a high school teacher and I know my daughter's elementary school principal and nurse really well, and I think she's safe without a 504. But if I didn't know the people in charge of her building, I might think twice about not having one.
Drink 24 oz of milk in 24 hours and you'll lose weight! God, that annoys the heck out of me. I'm very biased against the dairy industry, I'll admit it, but if I drank all that milk it would kill me. Who needs to be skinny when she's dead?
I also think the talking shredded wheat is annoying.
All IBS commercials make me mad. If there were a pill for celiac, we'd have a commercial and our diagnosis rate would go up 500%. As it is, the industry is keeping celiacs miserably sick.
The main reason the Activia campaign makes me want to spit nails is because the "patented" bacterial strain is just a garden variety bacterium with a fancy Latin name. No reason to pay more for it. Or to eat it as a dairy product, for that matter. Ugh.
My advice is to go off dairy completely (including whey) for awhile before you try something like that. Then you'll know if you are reacting to it. You won't be casein-free if you eat whey. You'd be more like casein-lite.
I think your dogs are likely suspsects here! Check their food and biscuits for gluten ingredients! We continue to feed our dog as we always did, but we always, always, always wash our hands after any contact (food or play) with the dog.
Also, have you segregated your kitchen stuff from the gluten eaters in your house? You can share dishes, stainless steel items, etc. But you need your own toaster, colander, can opener, and any other gadget that has small holes and crannies. You also need your own wooden items (wood spoons, cutting boards, etc). They can hold gluten pretty much forever because they are so hard to clean.
I agree with the person who posted above that said your blood numbers being low is a really good sign!!!
Do you live with gluten eaters? (Maybe your adorable furry friends?) Could you be getting gluten on old cookware or through your cosmetics and personal care items? Do you take communion at church?
The stool test is supposed to be way more sensitive. Maybe those high numbers are "down" for you. Since you don't know what your Enterolab numbers were before going gluten free, you can't compare them to anything. It does seem really high though. It could be that your healing process is taking longer than average. Maybe you could call and chat with the nurse at Enterolab.
Anti-gliadin is an antibody for gliadin (part of the gluten molecule). If you have it, your body has identified gluten as an enemy.
Tissue-transglutaminase is an enzyme that works on gluten. If you have an antibody against it, your body has identified one of your own enzymes as an enemy (hence the label auto-immune disorder).
High numbers mean that you had a high concentration of these antibodies in your stool (although Dr. Fine believes that high numbers don't necessarily correlate to more severe symptoms). If you stop eating gluten, these numbers will come down.
The protein in whey is lactalbumin (casein is the curd), but the CC risk is pretty high.
I eat chocolate with "may contain traces of milk" warnings every once in awhile. My main casein symptom is a horrible acne break out and upscale dark chocolate doesn't break me out.
I could take or leave chocolate. It's cheese I really miss. I read a study out of Europe where two years on a casein free diet cured the casein intolerance (not so for gluten - same study). I'm going to eventually do a dairy challenge and see what happens. I know Dr. Fine would disagree with that decision, though!
I did a quick google search on "wheat allergy oats" and the wheat allergy community doesn't seem to be as concerned with it as we are required to be. That doesn't really answer the question though... now I'm curious!