I'm new to this Forum, but have been been receiving regular updates from Celiac.coom for over a year now. I don't want to step on toes or start another word war, but there is definitley something called Gluten Sensitivity, and it is very real. I know. I have it.
I have been sick since the birth of my daughter nine years ago. Each time another new malady comes up, the conventional doctor wants to put me on another drug. Up until Aug 2008, I was on 12 prescription meds at the age of 40 years. Yep. Before I moved to where I now live 12 years ago, I never took a prescription med 24/7 in my life. That in itself is enough to make me see boiling red. But that's another article. I have managed to get myself off 7 of those RX meds, and am still working on the other 5 meds.
My route to a normal, healthy life has been my own responsibility. Naively, I thought my conventional doctor and even my Integration Doctor would actually want to help me get better. Nope. It's all me. Next, I'm going to look for a Naturopathic doctor. They seem to be the only ones who are really and truly interested in helping one heal. But that's also another story for another time.
Any one who stands in my face and says I'm not Gluten Intolerant, I'll flat out call them a liar. The first two tests my Integration Doctor made me take was one for heavy metal toxicity (VERY TOXIC!) and the SIgA test. I am severely intolerant to soy and Gliadin (my score was 81; anything over 15 U/ml is positive), and I have an allergy to milk casein protein. I have since learned that many people with Gluten Intolerance and Celiac Disease also test positive for soy intolerance and casein allergy--or at least lactose intolerance.
I went on a gluten-free diet for five months, then off so I could do a Gluten Challenge. After all the endoscopies were done, no Celiac. Took the genetic test; highly doubtful I'll ever have Celiac. Yay me! But boy, was I sicker than a dog after I finally was done with all this testing and could go back to eating a gluten-free diet again. I'm still trying to get my body back since I did that challenge, and it ended the first part of June. Now I am having problems with my liver enzymes/tests going high, and my cholesterol going high, and all these "areas" that are linked with problems with gluten/giadin, going way up.
And am I getting help from my two doctors? No. My Integration Doctor, who has special naturopathic training AFTER her 4 year medical degree, just told me that I probably am getting fatty liver disease and insulin resistance. That's it. That's all. No, try this supplement or do this (well, other than to cut all grains out and just eat meat, veges, and fruit). In fact, she didn't seem concerned at all that I might be in the process of developing diabetes--or trying to help me stay clear of getting diabetes.
Okay. That one, of course, clearly shocked me. I thought an Integration Doctor went into being an Integration Doctor specifically because she wanted to help me help myself get better. Or maybe that's only for those who have a lot of money and can come see her all the time. Hmm.
All I know is, ever since I've discovered I'm intolerant to soy, gliadin, have a casein allergy, and also have 21 other food intolerances, according to my Lame Advertisement test, I don't really trust anyone anymore. Just myself, my body, and what I'm finding on my own to help cure myself. My daughter also needs help, although she didn't test positive for any of the IgA test, but I also haven't had a chance to get her tested for other food intolerances through Lame Advertisement (I have to pay these lab tests myself). We both, though, are horribly, horribly depleted in nutritional elements.
Sorry to rant so long, but those of us with gluten intolerance are just as sick as those of you with celiac disease. The only difference is, my gluten intolerance won't eat away at my villi. But I suffer from all the other maladies associated with celiac disease/gluten intolerance/gliadin as the rest of you. So let's not divide the camp, but rather, work together to help people understand this disease.