Input Greatly Appreciated

[JOwens]

Hello,

I've been browsing these forums as a guest for a few weeks now, and have recently started on a gluten-free diet to try to help some of the many symptoms I've been facing recently. I thought I would post with some of my background to see if any of you have some input or insights - it would be much appreciated.

Quick things:

25 years old, male

Canadian

No digestive issues prior to a year ago

About a year back, I started having semi-frequent D (about 40-50% of the time), and a lot of urgency to go after eating (usually within 30-60 minutes). I didn't have a physician at the time (Mine retired), so I didn't think too much of it and blamed it on my relatively poor eating habits.

Then, one day at the beginning of November, 2007, I started having pretty bad acid reflux type symptoms (I would get a really sore throat, and it would actually hurt the muscles in my neck and back) as well as gas, nausea, and early fullness. This happened after pretty much every meal, but especially at dinner time. I wasted a few months going to clinics (tested for Mono, Strep, etc) before I found a new physician, who determined it to be stomach / GI related. I went on Nexium for a month, followed by Zantac 150 for a few weeks as well, neither of which helped at all. They did blood work, tested for H Pylori, etc, all negative.

Throughout this time, I had been continuously losing weight (partially from a lack of calorie intake, as I got full so quickly). About a month and a half ago, I eliminated all milk/dairy products, and stopped eating wheat as well (I didn't understand what celiac was at the time, and didn't realize the number of "hidden" gluten sources, ie: the malt used in Rice Crispies). About three weeks ago, I started having D several times a day, and found myself getting dehydrated, which prompted me to head to the emergency room. The doctors performed the blood antibody test for Celiac, which came back negative using their reference ranges. I started a strict gluten free diet using the info I found on this site and others like it - just in case.

Another week and a half later, I ended up back in the hospital again for extreme fatigue, continuous lower abdominal pain, etc. They performed an Endoscopy, which showed Villi damage consistent with celiac (no hiatal hernia, ulcerations, gastritis etc - upper GI was quite good); however, when the biopsy came back, this too was Negative.

At this point, I have been gluten free (strictly) for about 3 weeks, dairy free for about 1.5 months. I believe that the antibody and biopsy could have been false negatives, given that my gluten intake was quite low when I had the antibody test, and I was on a strict diet for a few weeks when I had the biopsy. I'm maintaining the gluten-free diet at this point, because I believe it can't hurt!

The problem is, that there hasn't seemed to be ANY positive effect yet. In fact, my Acid-Reflux type symptoms (this could also be from low acid, I've read) haven't improved at all. At the moment, the only things I can keep down that don't cause me to be immediately full and in pain are plain eggs, cooked carrots, and grape juice (ie: things that are easy to digest). I'm going to a naturopathic doc in a few days to check for other food allergies; the one thing I haven't tried to eliminate yet is Soy, although I barely eat any of it (my diet has consisted of potatoes, vegetables, lean meat and rice for months, to try to control the reflux, although I've been eating various cereal products, rice milk, etc throughout the process before I became gluten-free).

I'm suspecting another food allergy, bacterial overgrowth, or something along those lines...

At this point, I've lost about 55 lbs, and am concerned about my caloric intake. I still intend to be gluten-free, celiac or otherwise, but I'm wondering if anyone else has experienced similar issues when they started their "healing" process? Any input or suggestions would be appreciated!!

Thanks!

[scotty]

SOY....

[JOwens]

SOY....

Hmm, soy?

I've been considering eliminating it from my diet for a few weeks, along with everything else, and see if it makes a difference. At the moment I'm willing to try anything...

[Darn210]

Feeling full after very little food and acid reflux are symptoms of gastroparesis. You may want to google that and read up to see if anything else about it fits.

How sure are you of the food that you think is gluten free? Rice Dream brand of Rice Milk is NOT OK.

Also, check for cross contamination. Are you using scratched up teflon/coated pans? Old cutting board? Old Strainer? Jars of condiments (didn't sound like you were using any) from pre-gluten-free use that may have crumbs in them?

[JOwens]

I'm quite the analyzer, so I've googled all my symptoms many times and yes, Gastroparesis is something that seems to fit. I've brought it up to my family doc before, but this was prior to the Gastroscopy and so he didn't take it into consideration.

I've heard that this can be the bi-product of Celiac (damage to the small intestine causes food to exit the stomach more slowly than usual). I'm not entirely sure how to deal with it at this point, but I'll bring it up again and see if I can get any input from the doctors.

I'm positive the food I'm eating is gluten-free, as I've had some good advice around this (my grandmother takes care of my grandpa and aunt, both of which have celiac diagnoses - one of the reasons why I'm sticking to the gluten-free diet). The old cutting-board, pan etc idea isn't one I had thought of. I guess it's time to go shopping!

PS: I just double checked, and the multivitamin I started taking in November after this started contains Soy from a variety of sources. So I've been having Soy reintroduced every day - interesting. Although it says "Gluten Free" right on the front.

[Darn210]

If you're a googler, then you've probably already seen this . . .

https://www.celiac.com/articles/50/1/Main-C...illi/Page1.html

which just adds more weight to the soy theory.

If you were mostly gluten free at the time, then your blood test and biopsy could have been affected.

[JOwens]

If you're a googler, then you've probably already seen this . . .

https://www.celiac.com/articles/50/1/Main-C...illi/Page1.html

which just adds more weight to the soy theory.

Yep, I have seen that. And I agree about the soy idea - going to be vigilant around that for the next few weeks (and will likely request an allergy test from the naturopath as well).

If you were mostly gluten free at the time, then your blood test and biopsy could have been affected.

Makes sense.

Thanks for your input thus far, it's been valuable. As you can tell, I've been checking this post fairly frequently (I'm working from home today, after a particularily nasty bought of reflux yesterday).

[Darn210]

I've heard that this can be the bi-product of Celiac (damage to the small intestine causes food to exit the stomach more slowly than usual). I'm not entirely sure how to deal with it at this point, but I'll bring it up again and see if I can get any input from the doctors.

This was supposedly the case with my daughter. She was diagnosed with celiac disease and gastroparesis about a week apart. However she was also on an antacid at the same time and I wondered if that actually was the cause for her slow digestion. The acid reflux appears to be a celiac symptom as that is what happens when she is glutened. Are you still on the antacid? If it is not helping you at all, have you tried stopping for awhile to see if the gastroparesis is better?

[JOwens]

I'm not on any antacids regularily (to cause gastroparesis).

I've taken tums a few times, but then looked them up online and found out that they may contain gluten (ingredients can't be verified).

I've read that Rolaids are gluten-free, so I might pick up some of those instead. Although I've been trying to avoid using any antacids anyways, because they don't seem to help much if at all.