Celiac Support

you really need to follow a strict gluten free diet,
have you met with a nutritionist, they can be alot of help.

What do you miss most?
The key is adapting your recipes... use Bobs gluten free baking mix in recipes that call for flour ( i find this is the best)
also a magazine called living without is a great find its for people with allergies and food sensitivities.

I was just diagnosed with Celiac's Disease and I have oh so many questions. I am 52 and have lived with almost all 300 symptoms. I thought I was a cat with 9 lives because I have used 6 so far. It was the complications from the disease. I am not a medical professional but I will tell you and anyone else that you may not be as lucky as me and have lives to spare!!! No doubt if you love your family and most importantly care about yourself, then never, NEVER cheat on what the professionals tell you, you can eat and cannot eat!!!! Food is really insignificant trust me because I am faced with such an advanced form of the disease nothing and I mean nothing I eat am I able to digest. I am malnurished, losing weight daily, hair, complexion are not right! I go in for a biopsy June 14th and I have been told the Doctor's are hoping I do not have Lymphoma. My small intestines villi is dead and buried. I have had so many health issues my entire life so bizarre not ever thinking they were all related!!!! Remember, Gluten is your murderer stocking you if you have Celiac's Disease!!! Do you really want to die there are easier, shorter and let costly, and painful was to kill yourself!!!!!!!!!!!!!!!!!!!!!!! FOR ME PLEASDE DON'T EVER EAT GLUTEN AGAIN!!! PLEASE!!! bECAUSE IF NO ONE ELSE CARES I DO!!!!!!!!!!!!!!! SINCERELY, Midamericamary

Your arcticle touched my heart and I know it is so hard to imagine that foods that are good for some people can be a killer to others. I was tested in January of 2010 and my Celiac results came back as 3.4. The doctor said it really isn't a concern until it hits 5.0 or higher. But I look at gluten and get sick. One day I feel great and then boom I ate what I shouldn't and i'm right back where I started being sick and tired of being sick. But I can't seem to kick the cravings for bad foods. I'm not even really sure what is bad for me. Sometimes I drink a bottle of water and I get sick. The left side of my stomach grows out anywhere from 3" to as much as 10", where I have to go home and change pants from a 36" waist to a 42 or 44" waist. Also I'm so tiered and it is so painful I start taking pain killers to relax.

How do we get a grip and beat this disease? People at work don't understand and make fun of me everyday that we go to lunch. They always get amd when I want to go somewhere healthy. They think I'm crazy that I can't eat wheat bread or have a sandwhich or a taco or god forsaken a real hambuger.

I hope your test come out negative and you will be in our prayers.

have been dealing with symptoms since middle school and the docs all just said it ibs. I am a mom to 4 kids, i run my own daycare from home and my husband is in the army. I have always put myself on the back burner until with in the past two and a half months my stress level has gone through the roof. So my symptoms returned and i just chopped it up to stress. My husband suggested i take a couple weeks of vacation just for me and go somewhere i can relax and see if that helps. So i decided to go visit my sister in law, she lives out in the country in Kentucky. Two days after i got here my diarrhea turned into straight blood and in my normal fashion i just ignored it and thought i would deal with it when i got back home. Needless to say two days after that i woke up at 4am curled in a little ball in pain. 45 min later we were in the er. they ran test and come to find out they diagnosed me with celiac and colitis. three days later i have been released from the hospital on three different medications and now have to learn to eat a whole new way but if that means that i don't have this ungodly pain any more then i think it will be worth it. Its never easy at first to change your whole life style as u know it but when u look at the what ifs if you don't manage it, is that piece of pizza or cookie really worth it. Good luck with your new indevor and there is one thing that my mother in law always tells me when things get rough....just breath, just take deep breaths and baby steps!

Your best bet may be to go to a nutritionist, and also order some books that will help you determine what is safe to eat. And as everyone else has said... you HAVE to stick to a firm gluten free diet. As you can see here, the long term affects of the diease can be absolutely heart breaking and terrifying.

I have not yet been diagnosed but I am fairly certain that I will be very soon. I am already afraid that is been left undiagnosed for too long and I may have develeoped even more problems.

Please take care of yourself- it will be a difficult and stressful process but you can also have fun with it. Try new recipes and different foods to discover what you like. You can even learn to bake your own gluten free bread. Good luck!! And good luck to all of you... I truly hope that the medical field learns how serious this disease can be so that all of you, and those who have been misdiagnosed can finally find some real relief.

down the line you will live with a toilet strapped to your back side. not mentioning the horrible gut pain, flachuande that will kill the neiborhood. your out come doesnt have to be that rough, almost all stores are carring gluten free items. but protien of all kinds liquide vitamines , try keep trying love to you

I can relate to this I didn't follow the diet either and i'm paying for it now! I also am awaiting a biopsy because of how bad my small intestines are! and I ate gluten for 7 years (thought I had 9 lives too) and I look and feel horriable! I pushed every sickness,poor skin color,low weight,blood in stools,pain,joint pain...the list go on..I will never knowingly eat gluten again...and take every step to prevent it...even taking my own food to resturants! I am 49years old and I'm not going to let gluten kill me anymore!

I was diagnosed several months ago, too, and was thinking of straying off the diet. Thanks for convincing me everyone that it isn't worth it. My hands are finally not swollen anymore and feel like life is better again. Even though I still have abdominal pain, hoping that it will go away soon.

I just miss cake, cookies, etc. Am wondering what to do about Thanksgiving stuffing. I guess I could make something for the family and I could still enjoy the turkey and sweet potatoes and veggies. I found a great sweet potato and banana casserole on the Food Network.

Safeway now has several gluten-free products, even Bisquick, pasta. I love rice and have figured out how to fix risotto, and rice pudding is wonderful. When I get to a totally healthy diet I will probably get back to a slimmer me.

Thanks everyone!

My daughter has Down Syndrome, lot of medical problems. When she was 31/2 stated getting sooo sick. No one could find out what was .I moved to N.Carlina and took meg to Duke University, Down Syndrome Clinica. Took them 1 year of testing to find that she had celiac disease. at age 4-5 started the diet.She was in 18 month close and weighted about 26 lbs. It seemed to go away over the years. But I think I am wrong .She has to have bloodwork for celiac panel. She was sick all winter. I thought she had ecima on skin, in her hair. allergy,asma. She had amonia 2 and broncitous 2 this year. I think its all celiac again .

Daisymor, the 'down-the-line' problems could be quite severe. Celiac disease is, as you know, an autoimmune issue. So each time you are exposed to even a particulate amount, you're going to mount an immune reaction. It doesn't matter how much you take in - even a particle is enough to mount a full response. It's basically all-or-nothing. The problem is, not only do those antibodies attach the gluten, they can also target your own tissues. Some people go on to develop severe joint issues, large amounts of bone loss and a host of other things besides miserable deleterious effects to their GI system. You can end up with an inability to take up the nutrients and vitamins you need which will impact your whole body, not just the GI tract. That can result in peripheral neuropathy and changes in your thinking and cognitive abilities.

Celiac disease is nothing to take lightly. Yes, the diet can be difficult in the beginning but it becomes easier with time. And more and more great products are coming on the market these days. Check the websites of the grocery stores online and see if they have lists of the GF foods they carry. Many do and they're making it easier to find them. Also check online for restaurants that carry GF items on their menus. I believe sites like the glutenfreeregistry.com and others allow you to type in your town name and they'll list all the restaurants in the area that are GF. The larger chains almost all have GF offerings.

Hang in there. It will get easier.

Ellen, celiac does not go away. It's a disease that she will have for her lifetime. If she was diagnosed previously with celiac, she's celiac. Period. Get her back on the GF diet if you haven't been following it.

Thank you. I hope I have not made things worse. Meghan is having the celiac panel done monday. I made her appo. at Yale,in New Haven, with the Gi.Immuology and allergy, also with respitoray. She was born there and all her operations are there. Tried to have tonsils and adnoids out last year at Bacus Hospital. They would not touch her so back to Yale. She had reconstrutive heart surgry at 6 weeks old. 3 dental. which needs more, Tubes,stomach bio,ON wensday she goes to ENT to set up adnoids and tonsils out. Sleep study was done. she of couse has sleep apnea. I dont think Ive sleep scence she was born.
Meghan has gained weight. She is now overweight that I dont understand. And made me think it wasnt that? thanks Ellen