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|Posted By : Tribny - 2/7/2016 7:43 PM|
|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!!
|Posted By : Captaindd - 2/8/2016 5:25 PM|
|I found that I had to be 100% gluten free other wise the diarrhea start backup. I am currently in my second week of quitting taking anti acid medications. I am drinking 3 times a day a glass with orange flavor fiber with about a half oz of apple cider vinegar. The fiber helps to keep your digestive system from backing up and the vinegar cuts down on the acid.|
10/9/06 PSA.05 11/04/2010 PSA 1.8 10/22/2013 PSA 4.1 3/03/2014 PSA 4.4
10/08/2014 PSA 5.9 VA 11/10/2014 PSA 7
11l20/2014 Started Gluten Free Diet Weight 268 Pounds
12/12/2014 Biopsies Parts 1,2,3,4,and 5 Benign Part 6 Positive 10% Gleason Score 3+3
3/32/2015 PSA 5.1 9/16/2015 PSA 9.0
9/17/2015 Stopped eating red meat,dairy, eggs,chicken,turkey 11/09/2015 PSA 10.5
12/18/2015 All Biopsies negative
|Posted By : SLLRunner1 - 3/4/2016 4:14 PM|
|Tribny, I suggest you read the book Celiac Disease: A Hidden Epidimic by Peter H.R. Green, MD and Rory Jones. It's an excellent resource. |
If you have celiac disease you are supposed to have a dietary plan where you don't include any gluten at all. Cross-Contamination happens, but it's important that you strive for no gluten for your intestines to properly heal.
By the same token, if you have celiac in your family and suspect you have it or have the propensity to develop it, I would certainly apply this same rule.
Celiac is serious business, and some people have silent celiac to where they experience few or no symptoms at all.
|Posted By : mudmagnetmum - 7/26/2016 9:32 AM|
|My situation has some similarities - my reflux started 6 years ago, treated initially with PPIs which caused me other problems (itching in particular). I changed to Zantac 2 years ago and gained much better control of my reflux symptoms and my Barretts wasn't visible on my last gastroscopy (woo hoo). |
I have had wheat and dairy allergy for over 30 years but last year I found my eczema just wouldn't settle down (it is set off by my food allergies). I took a good look at my diet and regressed it, especially my breakfast ingredients, and had only "safe" (not officially gluten free but reliably sourced) oats and corn based things. My eczema cleared up and I thought "job done". I then started with IBS (morning diarrhoea) and I can't identify consistently any triggers. Found couple of things that make it worse (xanthan gum, coconut milk......) but nothing that seems to really hit the nail on the head.
I've just been told I've got the gene variants for CD and I'm starting to wonder if my original diagnosis of wheat allergy was wrong. Or, did the anti-acid treatment set something else in motion (though not my genetics obviously!!).
I think quite a few folk on the GERD side of the forum report IBS alongside. Very hard to know what came first.
GERD (6 years and counting)
Past 1 year - IBS
Lifelong stuff: Food allergies/intolerance, eczema, asthma
|Posted By : Mybrides - 8/5/2017 3:56 PM|
|Mudmagnetmum- I agree with you...which came first my Celiac or my CD! Been suffering with Gerd for the past 2 weeks. Thought I was having a heart attack (57)!! Was put on Prilosec 2x/daily and today whammmo I have acute gastritis. Going for an endoscopy on Tues but, had to come off the Prilosec and now taking Pepto Bismal. It seems to have settled the gastritis but, I'm feeling that tightening in my throat again. WTH 😡|