Do you or someone you know have Celiac Disease? How long did you suffer with it before it was diagnosed? How difficult was the diagnosis? Share your stories here!

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I was diagnosed with Celiac Disease last October. I thought I just had IBS. I had a colonoscopy done to have my whole system looked at. I have a family history of colon cancer and non-cancerous polyps. The villi in my intestines doesn't lay completely flat but flat enough to be diagnosed. I had always had intestinal problems and just said I have a nervous stomach. But the pain kept getting worse and worse over time. I hadn't worked in 4 years so I was home and never noticed how many times I actually went to the bathroom everyday to have a bowel movement. I started a job at the beginning of last year that was an office job. I started noticing how often I was literally running to the bathroom and I finally decided to go to the doctor. I intended to only go for the pain and constant potty trips. I am glad I went. I now have medication to help with the pain and the IBS symptoms I get.

Thank you for sharing your story, Jeanette. It sounds like you have been suffering for a long time.

Does your doctor have you on a gluten free diet? Once wheat, rye and barley are removed from your diet, your celiac will disappear...

Shay

Yes I am supposed to eat a gluten free diet. I feel better and better all the time.

It's so great you are feeling better all the time! Do you find it difficult to stay "gluten free?"

Yes actually I do LOL I am diabetic too so it even further limits myself on what I can and can't eat! I am pretty much pain free if I stay on a gluten free menu plan but sometimes, especially eating out or at someone's house, it is difficult. I have lots of out to eat lunches at work because I am in a new department and everyone wants to treat us to lunch or we treat people to lunch. My doctor prescribed Levsin for my pain and to slow my digestive track down. I keep it in my purse at all times just in case. Did you know Donatos Pizza has a gluten free option?? I noticed it today when I went there to get a salad. The gluten free cereals and other items seem so darn expensive! I have basically become vegetarian and eating chicken mostly. I am finding red meats are hurting my stomach too.

I know what you mean about trying to stay completely away from gluten. It's everywhere! I also avoid night shades, eggs, and anything too herby or vinegary. When I eat at a friends house, they all know, and bend over backwards to be accommodating, but I always feel so badly that I'm putting them through the trouble. Sometimes I bring my own food, so they won't need to worry about it. I don't have celiac myself, but my acupuncturist feels that anyone with stomach problems should steer clear of gluten products. I find there are really good rice pastas available, but how right you are about the cost. It really can be expensive to eat right!

We don't have Donatos Pizza here in Vermont that I know of, but how great you have that as an option! Perhaps you could get coworkers to go there when there is a lunch planned!

Shay

Hi, Shay! My son has celiac. There are so many good mail-order sources on the web now for gluten free. Also awesome cookbooks. When Jeff was diagnosed 16 years ago, it was a lot harder. Reading labels on everything in the grocery became a habit for me. The tiniest additive can be suspect. It was easier for me to go natural all the way. Meaning, cooking fresh rather than packaged and becoming a regular at the health food store. We're lucky to have some good ones here in the Nashville area.

It's also interesting to note that autistic kids benefit greatly from a gluten-free diet. Jeff has Down system and is on the autistic spectrum. There's so much research now on the web concerning autism and gluten. Interesting, yes?

Hi Bettyann! It's nice to see you here, though I'm sorry about your son's celiac. But on the up side, I'm so glad that you have been able to keep things natural and gluten free.

Yes, that is very interesting about gluten and autism. I got to see Jenny McCarthy (sp?) on the Oprah show a while back and she spoke at length about gluten and dairy in particular. Both tend to be problems with the GI tract as well. Thank you for bringing that up! Keep up the good work...

Shay

My mother just found out she has celiac - and she has been type 2 diabetic for over 15 years now.

She had been extremely sick for the past 5-6 months. She actually started getting really ill when the big scare about tomatoes started, and that is what all the doctors thought it was, food poisoning from tomatoes.

But she was on 4 different (and strengthening) antibiotics and nothing was happening. Then they started doing tons of tests. She found out she is lactose intolerant (she loves milk) and then they finally found the celiac.

She called me in absolute tears. I was shocked.

They were ruling out things like cancer, so when she said celiac i was like "good - this is something we can manage". She is hysterical, however. All she keeps talking about is what she cannot eat. (no wheat, no sugar, no milk) because of the celiac, diabetes, and lactose problems.

My answer to her is - let's eat natural for at least 2 weeks. Fresh fruit, veggies, meat. She can have rice. Water to drink. i think if I can get her to eat for just two weeks this way, with no preservatives, she is going to feel so much better, she won't freak out so much.

I know she is giving up a lot, but compared to cancer - I can't help but think this is good news.