It's good to be a celiac-er

Yesterday I put on my brave girl shoes and drove up to LA all by myself for the Celiac Disease Foundation's annual education day and food faire. I was mostly excited but a little nervous. Would I find a friend? Would the information be interesting or have I already learned everything I need to since my diagnosis 6 years ago?

A-MAZ-ING!! I had no trouble getting to downtown LA (traffic isn't bad at 7:00 am on a Saturday). I was in a room full of about 600 friends! People with celiac have an instant bond and everyone was very friendly. The information presented was fascinating! I was transfixed through every presentation, took lots of notes, and actually caught myself with my mouth hanging open in amazement.

And don't get me started on the food. At the registration desk they handed me a goodie bag that was already full to brimming with samples. Then I spent the next hour wandering through the maze of about 100 vendor tables sampling the wares. I had soup, pizza, muffins, cakes, breadsticks, crackers, cheesecake, ice cream, granola, pancakes, and then I went back to the booths I liked and had more! I collected coupons, fliers, handouts, info sheets, stickers, magnets, chip clips, tote bags and books about celiac disease.

Here's the loot that made it home with me. So much more was already in my tummy that I didn't eat much the rest of the night. (Yes those are two full loaves of GF bread. Gorgeous!)

We heard from Dr's Peter Green and Sheila Crowe, both outstanding doctors and professors in the field of Celiac Disease. I could go on and on about the things I learned. If you are interested, leave me a comment and I will elaborate.

I was thrilled to be able to ask Dr. Crowe about how to introduce gluten to children of Celiac parents. Her recommendation was to first have them tested for the gene (either HLA DQ2 or DQ8). If they do not have one of these genes, they are not at risk for developing Celiac. If they do have either one of these genes, they have a 30% chance of developing the disease and should be watched carefully. Gluten can be introduced in children after 4 months of age, though breastfeeding should be continued as long as possible. Once the child is eating a gluten-containing diet, they should have a blood test to check for the antibodies that indicate their bodies are responding negatively to gluten (that's a tTG + IaG test). If that test is negative, there is no Celiac, but the child should be re-tested about every 3 years because they are still "at-risk" and Celiac can develop at any time of your life. If the test is positive, the doctor may recommend an intestinal biopsy to check for damage to the small intestine. Some people have "latent Celiac" where their biopsies show negative, but their blood tests are positive. These people can continue to eat gluten and just watch out for any change in their condition. Some people have "silent Celiac" where there are no physical symptoms, but the blood test and biopsy are positive. These people need to eat GF even though they don't feel sick since their bodies are still being damaged.

Oh, that was me not elaborating, wasn't it. Sorry I just got so wrapped up and fascinated by all the info I can hardly stop myself. I've been telling Doug stories from the conference almost non-stop since I got home.

Just one other thing I thought was so fascinating -- about 25% of people are diagnosed by a screening and not because they present with classic symptoms. That's how I was diagnosed and it made me feel so good to be part of a fairly large group of diagnose-es.

One other thing I just can't not say, er, I guess that's two things now, is a few words about relatives of celiac-ers. First and second degree relatives (sorry my future kids, siblings, and parents) should probably be screened for the disease. Get the genetic test to find out if you're in the "at risk" category. If you don't have either of the genes - congrats, you're off the hook. If you do have one or the other, you should probably have the antibody blood test every couple of years just to make sure you're still healthy. After all, daughters of breast cancer patients get regular mamograms, children of parents who die from cardiac arrest generally try to keep their heart healthy--the same should be true of relatives of celiac patients.

K, I gotta stop because I'm getting all revved up again and could probably spend way too much time here.

The conference was awesome - I'll leave it at that!!