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"Pre-Celiac" & scared

tribny

By tribny
in Coping with Celiac Disease

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tribny Newbie
tribny
Posted

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?  This site has been helpful to me these past months.   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 gluten-free 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 gluten-free frozen foods are great, and I read every label at Trader Joe's, eat off the gluten-free menu, corn tortillas @ Mexican, no soy sauce or imitation crab @ sushi, steamed veggies @ Chinese, & gluten-free pasta @ Italian.

Member Lisa wrote, "Even though you eat as gluten free as possible, you probably consume close to that amount of gluten due to cross contamination in processed gluten free food and other exposures. ...Eating 100% gluten free is a total improbability. "
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 on this site 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?

Thank you for you help!!

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jddh Contributor
jddh
Posted

PPIs should not affect your digestion of gluten one way or another. Many folks with celiac disease may have villous damage without obvious symptoms. Others eventually get symptoms after the disease is "activated," but exactly how or why this happens is not yet clearly understood. Biopsies are generally done after someone has symptoms, and likely already has villous damage, so I would imagine your doctor must be necessarily a bit vague about whether you might have "inactive" or "active" celiac disease.

The gold standard is to get a biopsy while still eating gluten, and then another after being on a gluten-free diet for some time, to assess whether you heal without gluten in your system.

Positive genes and blood work, AND villous atrophy would seem like fairly strong evidence, but that's up to your doctor to determine. If you feel comfortable sharing your test results on the forum, some folks here can give you their two cents. But listen to your doctor!

Glutenease might help your digestion, but if you have an autoimmune reaction to gluten, it won't prevent the possible damage that comes with gluten mistakes. Research on l-glutamine is somewhat supportive for healing, but it's not a panacea. 

You will read about various levels of sensitivity and prudence here and elsewhere. Eventually you'll come up with a plan that you consider is "safe," but hopefully will still let you get out in the world. Read up on gluten-free groceries and how to deal with restaurants safely, and you ought to be able to find a happy "middle-path" between prudence and paranoia.

I'm one of the fairly sensitive/paranoid types at this point in my life. I personally don't worry too much about possibly breathing in gluten, but on the other hand I wouldn't eat anything that's been out where flour is in the air. Nor would I use a shared toaster or fryer.

Again, it's important that you form a lifestyle approach that is informed about the risks but still a good life! Most importantly, work with your medical team to determine if you in fact have celiac disease.

  • 2 months later...
tribny Newbie
tribny
Posted
  • Author

Thank you so much for your well-balanced and informative reply.  I did post my full results in a new post.  I hope I can get some opinions on it!

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