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Celiac Disease
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Posted Yesterday 10:12 AM (GMT -6)
I wanted to welcome everyone to the Celiac Disease forum!  Please share a little bit about yourselves.  I'll start:

I was dx'd in 2004 after also being dx'd with Crohn's Disease.  My mother has a positive blood test but negative EGD.  My maternal grandmother died of small-bowel lymphoma, which my GI is pretty certain was a result of undx'd Celiac Disease.  I also suffer from A/P and depression, both of which can be compounded by these diseases.

I'm middle-aged, so I have many fond memories of gluten-free foods.  It has been a challenge.  I've been lucky to have only been glutened a few times since going on the gf diet.  My job requires that I be on the road daily, often eating at small-town cafes.  Ordering cheeseburgers with no bun, no fries (often use same oil for breaded items) and an occassional gf side can get old in a hurry.  I often have a crew with me that I need to buy for, so not going isn't an option.

It has been a challenge, but I think it has made me a stronger person because of it.  Please share your journey down the gf road (if you want to.)

Posted 6/23/2009 9:07 PM (GMT -6)

Anyone?  Anyone?

Bueller?  Bueller? :-)

Seriously, please share your stories.  It will help others.

Posted 6/24/2009 4:04 AM (GMT -6)
LOL I didn't introduce myself because I am not the Celiac, my husband is. I am the breast cancer forum moderator.

We are in our early 70s. He was diagnosed way back in 1961 with Dermatitis Herpetiformis when he was in the Navy. The doctors suggested a gluten free diet, but how did you do that in the Navy? He has taken medicine all these years which kept his skin problems quiet. Four summers ago he lost weight, his skin color was gray and he looked sick but didn't feel sick. I made an appointment with our family dr for a physical for him. His blood test showed he was very anemic, so she sent him for a colonoscoy. It was clear. Next she sent him to have an endoscopy and the doctor who did it realized it was most likely celiac because of the flatness of the inside of his digestive tract. He did a biopsy and gave us a packet to understand what needed to be done.

After that we found other celiacs through friends of friends and learned even more. This forum should be good to help others if we find enough celiacs to respond. I hope we do. It is not an easy disease and symptoms manifest themselves in many ways. What affects one person may not be anything like what affects another. Sharing is a good way to learn. In some areas there are enough people to have groups who meet. I know of one group in Conneaut, OH that is sponsored by the hospital there. It is very active, they go out to eat to places that are gluten free as a group. Wish I lived closer.

MK of north central TX
Posted 7/23/2009 8:30 PM (GMT -6)
I was diagnosed with Celiac in 2005. As a kid I had stomach trouble that a GI chalked up to me being "stressed out". So for years upon years I always thought my stomach issues must be related to stress even though I knew I was not stressed out. My mother would tell me that I just did not realize I was stressed out...hmmmm. In any event, my discomfort came to a head on a business trip to NYC where I spent about 2 hours getting sick in the bathroom at Penn Station. Goodtimes. To settle my stomach I got an Aunt Annes pretzel...you can guess what happened after that. I was lucky to have a primary care doc who decided to run the bloodwork on me. Within a few weeks I underwent an upper endoscopy and had my celiac diagnosis. As time went on I realized a lot of the strange issues I was suffering with resolved. Mouth sores, constant cavities, random rashes. My stomach issues got better but not perfect while on the gluten free diet. A few years later I began having issues again and then had kidney stones and some other fun things. After switching GIs I was diagnosed with Crohn's disease which I am now being treated for. I am still on the gluten free diet and I can honestly say that I believe I would be in much worse shape had I not gone glute free.
Posted 5/7/2010 11:30 AM (GMT -6)
Bumping this to the top. If you care to, please share your experiences with us.
Posted 5/7/2010 1:11 PM (GMT -6)
Hello,

I was diagnosed with UC almost 5 years ago and went through some very difficult times to try and get better. I went through the baby food regime, eating just toast and still being very sick. This past October was the worst I have felt. My endoscopy did not indicate Celiac disease and my miserable doctor would not discuss diet with me. I took things into my own hands and began eating a gluten free and Lactose free diet. I found it had to be a dairy free diet and IBS diet too. My bloating, nausea and ill feeling has slowly subsided.

I am 60 years old and have days feeling sorry for myself because I didn't realize how difficult this is. I can't eat fruits, vegetables, spicey, tomato, dairy.... I work in an elementary school where each day brings new misery. Parents bring daily delights of donuts, pizza, bagels, cookies, cakes, chocolate. Students offer birthday cupcakes and the small group I eat lunch with delight in running over to Sonic for cheeseburgers and tots or to McDonalds for Big Macs and fries. Fridays are usually celebrated with Jasons deli or Chinese food. I sit with my gluten free Udi bagel, or rice noodles or leftovers. Staff meetings are buffets of goodies - I with my Glutino pretzels and almond butter.\

I definitely feel much better but I gotta tell you, I still miss the foods I grew up with - real bagels, Harvey's hamburgers, Pastrami on rye, bread, pasta, Tim Horton donuts, Poutine, Swiss Chalet.

I take each day as a one day hurdle. Get through breakfast, then get through lunch, then get through dinner.... then over and over.

Yes there are some good gf foods and I am losing weight and feeling good, but I have removed the Food Channel from my Tivo lineup!
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