Friday, April 1

Our BIG FAT Gluten Toxic FAMILY


We've done it! Our family has received the dubious honor of being so afflicted with gluten intolerance that our whole family has qualified for a gluten-free study! Great Grandma had it, her three children all have it and since Grandma has it, all the children (eight of us) can be DNA tested. Those of us who are currently positive for celiac disease (three of us) will be given a maintenance iga/tTg to check the blood gliadins and and everyone else will be tested for titers indicating active cd.

In addition, any of us with symptoms or other autoimmune disorders can also be tested. That means the type 1 diabetic nephew, the Lupus, and Crohn's members.

The purpose of this study is to try to determine why 30% of all blood test samples manifest with positive celiac genes, but only 10% demonstrate positive tTg's.

Duh! Those of us afflicted with this disease know that the blood test is the final indicator of illness. It's like saying, "You have cancer, but don't worry, you haven't metastasized yet," so let's wait to treat it until it shows up in the blood.

I tried to be polite and stifle my frustration as I said, "Could it be because people with positive DNA results become progressively sicker and current blood tests are notoriously inaccurate?" (Speaking as a person whose kids were symptomatic-yet seronegative for 10 years prior to dna/stool testing.) The director of the study did say that it was her personal opinion that there may be a possible continuum associated with this disease.

Ya Think?
Now I just have to wonder why the study doesn't use the latest and greatest most accurate test-a DGP deanimated gliadin peptide or the newest saliva test as an indicator. It seems to the layman that the everyone is running backward in this disease... but what would I know?


Lisa J said...

So after a lifetime of battling violent stomach problems, crazy brain, allergies, anaphylaxis, reactions to meds blah blah blah... I am finally seeing a doc in boulder and had allergy testing done (serum and secretory). Wow allergies to everything from wheat to bakers yeast and cinnamon. I knew I was horribly lactose intolerant but figuring out the rest of it after so many hospital visits is so great. I can totally empathize with that kid in one of the articles you posted a link to, the football player, who was so ill. Imaging spending family vacays filling ziplocs with I don't want to say and knowing the location of every hospital and every rest stop along the way, That was my life! Blah! I have terrible peripheral neuropathy now in my feet and legs and hands but at least I am able to eat without getting what we in my house refer to as "Bad Belly" (that is being kind). I am so excited I stumbled upon your info. Sorry about the novel :)

Terina Dee said...

Lisa, They say when you reach the bottom then everything looks up, but with food allergies, you hit bottom and bounce. Really, when you find what is wrong, it's like smooth sailing straight up that (steep) learning curve because every day feels better. I hope you can find what it is and learn to live again. I love novels! They inspire me to keep on, keeping on.