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
My allergy test for wheat came back negative, but if I so much as put a little dab of a product containing hydrolized wheat protein on my hand, I get a terrible rash, burning and itching. This has happened with four different products. Now, it could be something else that's causing the reaction...I will have to read the labels and cross-reference. Considering wheat is one of the eight known allergens, I tend to think it's responsible. Is anyone aware of another ingredient in shampoo that is likely to cause irritation?
My 11-year-old daughter was biopsied only because I was dx'd with celiac disease. She had NO symptoms, elevated bloodwork. Her gut, however, was a mess. Think I should let her eat gluten? Didn't think so! Stick with the doctor's advice--how lucky you are to have a doctor who actually dx'd you in the first place!
Glen I read that article too, about the ten most underdiagnosed diseases. celiac disease was high on the list. I'm sure it got a fair amount of people thinking, since Reader's Digest has a wide readership. It was a bit vague, but people are very likely to use thier computers to find more info--that's what I did!
Dana, Gloriously gluten-free
The only reason I'm going back to him is to give him the NIH Consensus; he's NOT my doctor anymore! I thought it would be irresponsible for me not to give him the information he so desperately needs. What he does with it is up to him.
Dana, Gloriously gluten-free
I'll try and keep this short I will start by saying I am totally symptom-free from celiac disease since going gluten-free seven months ago! One of the very lucky ones, and I know it. I saw my first GI after I had been gluten-free for six weeks. He was certain I had celiac disease. He didn't see a point in doing a biopsy since I was off gluten already and was not up for a challenge. After a few months, I wanted to see a doctor who was a little more experienced with celiac disease (he only had a few celiac disease patients) to do a biopsy to be sure my gut was clean, so I found a guy who claimed to be an "expert". Well, this doctor (very handsome, charming guy) said, "I will prove whether or not you have celiac disease!" Then he said that while my daughter has celiac disease, I don't because I was constipated, and celiacs are NEVER constipated, they only have diarrhea. (Check page seven of the NIH consensus. It clearly lists constipation as a symptom) Then he ran a celiac disease panel on me--AFTER I was gluten-free for SEVEN MONTHS. (Check page four of consensus--tests MUST be done while patient is eating gluten.) He said the blood tests would show whether or not I had celiac disease! HUH? Then he spoke the magic words: IBS! Do you not LOVE this story?! I told him that I know of celiacs with constipation. I told him the tests would come back negative because I was gluten-free. I told him no gluten=no symptoms. I should have told him he was a horse's hiney. But of course he's an EXPERT, you see. So I am bringing a copy of the 21-page NIH consensus to him next week (after he gets back from vacation (experts need their rest) and I am going to tell him to study it. And that I am the expert!
Dana, Gloriously gluten-free
Deanna, I like your "two cents", and I think it's great that we're discussing co-dependency here. Being dx'd with celiac disease is a huge emotional upheaval for a lot of us; likewise the years leading up to it have often been an emotional roller coaster. I know my illness affected my marriage and my relationship with my children. I think it's fantastic to be able to talk to one another like this--I don't have any other group of people in my life who can relate so well to the feelings I have regarding celiac disease. I am really getting a lot out of this discussion, and I thank everyone for sharing .
Anna--My grandparents are from Eastern Europe, and I really miss pierogis! I won't even attempt a gluten-free version. Some things just don't translate very well.
And I also have a daughter named Anna. She's 11, and has celiac disease, too. I've had to keep a very positive attitude toward my disease for her sake. I also have food allergies, and frequently break out in hives and have other problems because of it. I know what it's like to be severly limited as far as your social life is concerned. Not a lot of choices in the restaurant department! Actually, I, too, think your boyfriend's co-worker hit it in the head--it sucks having all these restrictions! But I agree that it's not a very compassionate attitude, kind of like laughing at a diabetic. But I don't think people are as mean-spirited as they often sound, just ignorant. I have accepted that my dietary restrictions are extreme, and it is really asking a lot for me to expect my friends and family, who are not capable of relearning old habits easily, to accomodate me. Let alone people who barely know me. More logical that I should overlook their shortcomings. Seems unfair, but life is not fair. Having celiac disease has made me a better person. I'm more tolerant myself now. The world hasn't changed just because my life has changed so dramatically. Your friend who always eats the ice cream when she's with you? If you look back at your relationship, you can probably find other evidence of her self-centered behavior that has nothing to do with your celiac disease. I'm sure she's a wonderful friend, maybe a little clueless. Everyone is flawed in some way. None of us are perfect, not even those of us with celiac disease!
I've found that it helps to take it a day at a time. Just for today, I'll figure out how I'm going to eat lunch with my friends. Just for today, I'll find a place to meet my girlfriends where I won't be drooling over the pastries. I try not to look at this as a "life sentance", but a "life style". And if I find just one person who understands what I'm going through and can meet me halfway, I consider myself very, very blessed indeed.
And if that doesn't work, remember the old saying that God must love idiots because He made so many!
Dana, Gloriously gluten-free
celiac3270, this was a very good idea--I've enjoyed reading all the postings so far. I was going to wait until all my tests results were in next week, but I'm just going to go for it! I have a good news/bad news story. My new GI decided, just this week, that my diet-dx'd celiac disease, is not celiac disease at all, but likely a severe allergy to wheat. I won't go into his reasons here. My allergist has already done bloodwork, in fact, I am having extensive skin tests next week because I have had ridiculous reactions to just about everything I eat that isn't fruit, vegetables or brown rice and beans. Fun! The good news is that because of my initial celiac disease dx, my 11 year old daughter was dx'd via biopsy, and is well on her way to being happy and healthy for life! So I will still be gluten-free by way of avoiding wheat, and my diet will be even more restricted by the new allergies we are likely to uncover. BUT I am a happily married 46 year old, living in Southern California, mothering my Silly Yak and her brother, age nine. I homeschool my son, and it's great! My daughter is going to start middle school, and it's scary! My husband has been a real rock through all this, me being desperately ill, the kids in side by side hospital rooms for back to back biopsies, me breaking out in hives every other day...I bake him lots of gluten-free chocolate chip cookies! We all support each other through the trials and tribulations of being a wheat-free, gluten-free family. Uncharted territory, made much less frightening by all the wonderful people I've come across on message boards like this one. Really nice to read about your families!
Susan, I would think your allergist could tell you if you are doing anything harmful to yourself by eating wheat if you are allergic to it even though it doesn't produce any symptoms (lucky you!) Otherwise, have a Twinkie on me! Nice to hear somebody has gotten a reprieve!
Dana, Gloriously gluten-free
I don't know if cigarette paper specifically contains gluten, but wheat starch is used in paper-making. How that would affect a celiac, since you aren't ingesting it, is the big question. Can you get that much gluten from some wheat starch between your lips? One more good reason to quit smoking! (I had to say that! Although the nicotene patches probably have gluten in the adhesive--just kidding!)
I just googled "corn allergy" recently because something's been giving me allergy symptoms, and my interpretation is that if you have an allergy, it would generally show up after ingesting a moderate amount of allergen. If you're like me and make a GIANT bowl of popcorn and refuse to share it with anyone, and ignore the fact that your gut is probably more sensitive than the normal person's anyway because of the celiac disease and hog the whole thing then drink a big glass of water...well, I hope you don't do what I do, but if what you do is similar, yup, that would give you tummy trouble. Otherwise, food allergy symptoms come on after eating say, a regular serving or less, and often include a headache, stuffy nose or hives in addition to the gastro stuff. Which is not to say you aren't allergic to corn, because you may just not yet be ultra-sensitive. Isn't this fun? If you can live with eating moderate amounts of popcorn and chips and not get the symptoms, that sounds like a solution. Me, I must be the little piggy. Oink.
Ezrab (I like that name!) I just found that corn allergy post and it wasn't you, but you may want to do the diary anyway--it really helps give you some clarity. I remember feeling really fuzzy in the head when I was getting the gluten out! Good luck.
Ezrab 12, are these new symptoms, or the same ones you had when you were eating gluten? Did they just not go away? Casein is a protein found in milk. Are you having any gastro symptoms? If so, you may want to avoid dairy while your gut is healing; often, celiacs find that helpful for a while. Are you the one who also posted about the possible corn allergy, too? Because if you are, you seem to be having enough stuff going on that you may want to keep a food diary. Write down what you eat, when, and any symptoms and when they occur. It is not unusual to "feel like crap" after just a few gluten-free months, unfortunately. I found that it helped to keep my diet as simple as possible at first. Not very exciting, but not as many things to react to, either. Hope you get some relief soon, and keep posting questions--the people here are very helpful and somebody is bound to come up with something useful for you. Take care!