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
First, I would recommend a different doctor. When I was diagnosed 11 years ago, it was much harder to get good information. Now, many grocery stores (Safeway and Kroger for instance) have lists online of their store brand gluten-free items. So do many major manufacturers. Many products, even from mainstream companies, are clearly marked gluten free...all Chex are gluten free except wheat Chex, for instance.
No, you can't just read labels and assume the absence of wheat means no gluten. Gluten-containing ingredients are often used as binders in things like seasonings. McCormick has a great list and many are marked clearly.
At my house, we cook pasta in two pots and use two colanders because my husband doesn't enjoy gluten free pasta. It works, it just takes more time. We have a toaster with four slots - one for me and the rest for non-celiacs or gluten sensitives. We also have three cutting boards - a big one for gluten free shared foods like meats and vegetables. One for the celiac only and one for non-celtics only. You will discover how sensitive you are. I can!t eat French fries cooked in oil where breaded items have been fried, but I can eat cheesecake with a crust of graham crackers as long as It is a thick cake and I don't eat too close to the crust.
Good luck. It is SO worth it not to eat gluten. My fibromyalgia, which was totally out of control before I was diagnosed with celiac disease, is now under good control with no flare ups unless I get super stressed and/or can't sleep.
Being a celiac is hard no matter what your age. I really wish I had gone gluten free in college; that was when I first began having problems. I wasn't diagnosed until I was in my fifties. It is MUCH better for you to start now. I got very discouraged at first...after the initial excitement of feeling MUCH better. I can remember almost crying in the grocery store because I had to read every label.
My main advice is stick with it...it gets easier...and to be very careful. There is gluten hidden in all sorts of things..foods and non-foods. I even had to change toilet paper and my favorite shampoo because both had gluten. I have talked to people who really have had problems because they have eaten dressings, spices and herbs, and lots of other things that they thought were gluten free. Make SURE what you eat is gluten-free. Many items are marked...others (like many of Newman's products) are clearly listed on their website.
Hang in there! You will figure it out. And don't get too discouraged. When I was first diagnosed, my teenaged kids didn't want to go to restaurants with me. They were embarrassed because I had to ask so many questions and my choices were so limited. Now, they try to find new places and new dishes for me!
I had similar problems. However, I was lucky enough to have a doctor who was non-traditional and who thought that antibiotics was making things worse rather than better. He put me on supplements of magnesium, calcium and zinc...pretty high doses of zinc. It worked.
I take medicine called Skelaxin. I have also taken Parafon Forte in the past but it didn't work as well. Heat works wonders...I have both a heating pad and a massager seat cover that both massages and can be heated.
Stretching also seems to help a lot as long as I don't overdo.
Yes. My blood work was either negative or non-conclusive. (It was almost seven years ago so I don't remember.) The gastroenterologist bet me $50 that I didn't have celiac disease but my internal medicine doctor was sure I did. I had already had a colonoscopy that didn't show any major problems a year before. My doctor insisted that the next colonoscopy have biopsies EVERYWHERE. I only had damage in one small area close to my ileocecal valve, but I was diagnosed with having celiac disease and went on the gluten free diet. I got better almost immediately. My problems with fibromyalgia improved immensely and my stomach problems stopped. Now I only have problems when I accidentally get gluten.
Note of caution...there is gluten in LOTS of things - salad dressings, salsa, soy sauce, spices, soup, shampoo, makeup.
There is a lot of information available about what foods are safe. Good luck.
I was diagnosed with celiac disease at the end of May in 2006. When I had been gluten free for about two years (about the same place you are now), I had a similar sort of meltdown where I wanted to cry every time I went to a restaurant, went to the grocery store or was invited to a friend's house to eat.
But, you can get past this. There are many, many sources available now where you can figure out what you can eat and be SURE you are not getting any gluten. First, WalMart (and Sam's Club) have very clearly marked gluten-free products, for instance. You didn't say what grocery stores are near you, but Kroger and several other national chains have pretty good gluten free products. Also, a lot of Indian and Thai foods are gluten free.
You seem to be concerned about vinegar...there is a lot of conflicting information about there about vinegar. I feel more comfortable using apple cider vinegar and staying away from white vinegar, but most sources say it is o.k. in the United States. In any event, I try to stick with pickles that the company says are o.k. Vlasic and Mt. Olive both have a lot of gluten free pickles...check their websites or email or call them. Also www.thatpickleguy.com has an online store and the pickles there are all gluten free. I have never had any problem with any Boar's Head meats, cheese or any other of their products...and I"m pretty sensitive.
I eat a lot of shrimp and fish, but I also cook turkey breast and turkeyloins. I get really, really tired of chicken. I can't have pork or beef because of a tick bite allergy problem, so I feel your pain on being limited. There are a number of refried beans that are gluten free and most corn tacos and taco shells are gluten free. There are also gluten free corn tortillas, and with corn and rice and all the other ingredients, a lot of Mexican made at home is good and inexpensive. There are also a lot of salsas that are gluten free.
Just recently, Betty Crocker has come out with several products that make having dessert less expensive, easier and delicious...now there are cake mixes, frostings, and chocolate chip cookies that are clearly marked gluten free. Also, both Rice Krispies and
and most of the Chex (except Wheat, of course) are now gluten free.
HOpe this helps. Don't get discouraged. There is a LOT of information available online.
It is possible that you actually do have celiac disease. Six years ago, my doctor (internal medicine) was SURE I had celiac disease. The gastro doctor she sent me to (who is reportedly one of the better ones in Memphis) told me he was convinced I didn't have it. The blood test was negative. My doctor told the gastro doc to do exhaustive biopsies everywhere. He told her and me that he would bet both of us fifty bucks I didn't have evidence of celiac disease. Once the results came back, he said that I did have it, but that the damage was only in one small part of colon near the ileocecal valve and that he could easily have missed it if he hadn't done so many biopsies. I have been gluten free ever since and my health has improved two hundred percent. Every time I get glutened accidentally, I get sick and feel terrible....and end up having the old non-colon-related symptoms come back..aches, pains, tiredness, fuzziness, etc.
I really feel for you. I can remember standing in the grocery store choking back tears a few weeks after I was told I had celiac disease. It seemed that I would never be able to eat normally, nor would I be able to figure out what foods have gluten and what foods don't.
However, there are very good lists of gluten free foods of all types. Too, more and more foods are being labeled as gluten free. You do have to go to a lot of trouble at first to figure out what brands of various foods you can have, but it can be done. Keep a list with you, or put information in your phone or on your computer until you learn some of it. Health food stores are good, but actually I have found that WalMart labels a lot of the food it sells. It is great to be able to buy something and know it is gluten free!
Figure out which salad dressings you can eat that are gluten free. Hendricksons makes a pretty good low fat/low cal dressing and now they even have it in individual packets where you can carry it with you in your car or purse. You can get plain salad almost anywhere and baked potatos are available (get them without margarine or sour cream unless you know the restaurant or fast food place carries a gluten free brand) at many places when you are traveling. You can order the Hendricksons at http://www.hendricksons.com/.
I gain weight if I don't plan ahead because fritos and M and M's are gluten free, available everywhere, and are safe....but they also are full of fat and sugar. Fruit and veggies are gluten free, and so are some yogurts - Yoplait has a new Greek yogurt brand that is really good and is marked gluten free. Rice chex and Corn chex are gluten free and there are some great breakfast bars called Think Thin...they are also great for dessert if you want something that seems rich and is chocolatey...without too much guilt.
Hang in there. You will get into the swing of it. Remember that eating gluten sets off our immune system...it is really important that we don't ingest gluten if we want to stay healthy. Start simply. Figure out a short list of things you can easily buy and prepare. Get your own cutting board and make sure nobody uses it but you. Don't eat in restaurants where you aren't sure the waitstaff and kitchen folks understand food prep for celiacs. I have NEVER gotten sick from eating at a Pei Wei or a PF Changs. Too bad that isn't the case at other places where they claim to be careful. A lot of Italian restaurants are now offering gluten free pasta. It is MUCH better than it used to be for us celiacs. And it is getting better every day.
I have had days like this; I couldn't have any wedding cake at my daughter's wedding and, at my niece's wedding, and at the rehearsal dinner and other events on the previous days, I couldn't eat anything but lettuce...although I'd tried to tell my sister that I needed special food. It has gotten better for me as more and more places and people have gluten free food or at least understand that I'm not being picky. I guess it would be a lot harder if I had to worry about feeding kids. So sorry you had a bad time, but I guess I would focus on the fact that you are obviously blessed with friends and family and that many are alone today. Keep your chin up...and just focus on the fact that you are keeping yourself and your kids healthier.
When I was first diagnosed four years ago, it was clear that I'd been glutened...Within 15 to 30 minutes, I'd have to run to the bathroom. This still happens if I get a big dose of gluten (accidentally), but now I get more typical allergic reactions - throat and tongue feeling a little weird, and sometimes even hives. It is definitely more subtle now, or maybe I just never noticed it before because it wasn't that noticeable. I also have flareups with fibromyalgia and joint pain, and break out around my ears and get an itchy scalp, especially if I am exposed to wheat germ oil or other gluten-containing products in shampoos, etc. I've never had or known anybody who had nosebleeds, but I did know another celiac once who had seizures.
This is my fifth Thanksgiving since I was diagnosed with Celiac Disease. They have gotten progressively better. I now know which turkeys are gluten free, how to make gluten free gravy, and even how to make a darn good dressing out of cornbread and gluten free bread. AND, for the first time, I am making myself a pie. (I haven't had pie in five years so I'm pretty excited.) It is hard to eat with other people who aren't gluten intolerant or who have celiac disease, but it works better if you are at your own house. That gives you control you can't have other places. Things will get better. It just takes time. Happy Thanksgiving!!!