Is there anyone else "pre-celiac" and asymptomatic like me who has had long-term success without losing their mind and still enjoying eating out without feeling like you have to stay in a plastic bubble? I don't have it "Yet" and I am scared. Sorry this is long but I wanted to be thorough:
Two years ago I started experiencing GERD (heart burn, pain under my left rib cage, and regurgitation). After trying probiotics, kambucha, kefir, apple cider vinegar, aloe juice, eliminating chocolate, citrus, tomatoes, spices, cinnamon, mint, alcohol, not eating 3 hours before bed, I was no better.
I got an endoscopy/colonoscopy. The dr found gastritis and esophagitis. No hernia, infection or ulcer. He started me on PPI. I got 99% relief. After 6 months I decided to go off PPI. After suffering for 3 months, I went back to dr and back on PPIs for a year. Because I am young, 39, and the PPIs have side effects, he discussed surgery with me.
I went to a specialist. All the tests showed my esophagus was normal but my lower esophageal sphincter was not closing properly. I was a good candidate and decided on the MUSE, (Endoscopically stapling the esophagus to prevent reflux)
When the specialist did his endoscopy (1 year after previous one and before I was on PPIs regularly) he saw villi damage that looked like textbook Celiac. HUH? I don't have ANY symptoms. No cramps, vomiting, diarrhea, bloating, gas, discomfort, NOTHING. He took biopsies and the results were "non-specific" perhaps "clinically latent celiac sprue" or a number of other things.
So I took blood tests. The celiac gene test was "susceptible" and I had "high" antibodies, but not positive. Dr said go GF to prevent celiac.
Did the PPIs cause the villi damage because I couldn't absorb the wheat properly and triggered celiac in me? It sounds reasonable.
I wonder if now that I have had the MUSE and may be able to stop PPIs, will I be able to digest gluten better?
Very interesting. I plan to call a celiac specialist where I live to discuss this with him.
I have not eaten gluten intentionally for 2.5 months now. It did not help my GERD before the surgery. Dr said they were unrelated anyway. I am concerned about CC, breathing in, and accidental ingestion, but since I have no symptoms, I can never tell. So I take glutenease when I eat out and glutamine powder to try to repair the damage. How careful should I be since I don't have it "yet"?
Amy's GF frozen foods are great, and I read every label at Trader Joe's, eat off the GF menu, corn tortillas @ Mexican, no soy sauce or imitation crab @ sushi, steamed veggies @ Chinese, & GF pasta @ Italian.
Most people with Celiac can handle 20ppm. So is that equivalent to breathing in flour? Having a half a teaspoon of soy sauce by accident in Asian food? I can live without bread and cookies, but gluten is IN so many things.
Some with Celiac have separate toasters, don't eat out, and don't walk into bakeries while there are others that eat out and eat fries made in shared oil at BK. Even I haven't done that. Isn't it dangerous?
How careful should I be? Thank you for you help!!