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shakes

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shakes Newbie
shakes
Posted

Thought some of you maybe could shed some light on my situation, I know you are not docs, but could maybe give me an ah ha from personal experience. I appreciate anything you can contribute.

About 7 years ago (28 yrs now), I started having reflux problems, went to the gastro, had an endoscopy which saw no damage only a little acid in the stomach, he did not biopsy for celiacs. Since I was a teenager, I've had bad itching problems, and they have worsened in the last couple of years. Also, the stomach problems have never really stopped----the reflux wasn't as bad since I started taking protonix (acid inhibitor) but still have diarrhea, cramping, etc, on a pretty regular basis.

My grandfather, who was wasting away from weight loss and constant diarrhea, and no one could solve his problem, went to a nutritionist who said he was a celiac. Put him on a gluten free diet and the change has been pretty remarkable. Not only did he gain weight (and apparently I've found out lately he had itching problems his whole life), his mind almost seemed to regenerate and he seems more alive today.

I did the blood tests for celiacs which came back negative. Along with the tests, the doc found that my thyroid was low and vitamin D was low. I started seeing the nutritionist about 2 months ago, and started an enormous amount of supplements and her recommendation was to go gluten free, even though the tests were negative. I've noticed a small change. My itching has not gone away, but has been more infrequent, and my stomach has been better, though not completely. I admit I'm still not sure if I'm completely eliminating gluten, and I'm in a job where I'm traveling a good bit and have cheated some.

What do you guys think, I'm still slightly skeptical since my blood tests came back negative, but the nutritionist certainly turned my g-pa around. Otherwise, I'm pretty healthy (other than a cigarette habit) I'm in good shape, have been an athlete since I was younger and still very active and very fit.

Also, does Ice cream affect you? I had some mickey d's ice cream the other night and have been in complete reversal since then. What about soft drinks?

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GFBetsy Rookie
GFBetsy
Posted

Just wanted to drop a quick welcome and a little info . . .but I'll have to be quick 'cause I've been on too long and my children are starting to suffer from negelect!

The most sensitive of the celiac blood tests is 86% sesitive (according to my husband's lab magazines . . . he works in a hosptital lab). So it is not really all that unlikely that your tests could come back negative when you've really got celiac.

Secondly, cheating once in a while is likely to cause enough damage so that your symptoms won't go completely away.

If I were you, I'd give the gluten-free diet a really thorough effort - avoiding all malt flavoring (from barley) and wheat starch and everything. Find the names of restaurants that have gluten-free menus and patronize them while you are traveling. Take your own gluten-free cereal or stick with hard boiled eggs for breakfast while you are out of town. Keep it up for a couple of months and see how you are. Then go back on wheat (if you need more convincing) and see how you feel.

Good luck!

jerseyangel Proficient
jerseyangel
Posted

Hi and welcome, Shakes! :D

Since you have already had the test, I would definately try and go 100% gluten-free. For this to work, you really need to cut all of the gluten out. Not only foods, but personal care products, vitamins and medicines. You need to watch out for cross contamination at home and when you eat away from home.

I realize that your test was negative, but you could still be gluten sensitive. Also, these tests are not perfect. That would explain your symptoms--I also had the itching. It got better on the gluten-free diet, but not right away. After almost a year and a half, it still bothers me sometimes.

The thing that really matters is--do you feel better on a gluten-free diet? If you do, then you have the answer for you. Is gluten the answer to everything? Of course not--but considering your family history and your response to less gluten, I think that at least a trial of gluten-free is reasonable.

Many Celiacs find that they can't tolerate dairy products until they have healed for a while. If you decide to go gluten-free, I'd suggest going dairy free, also for a few months. At that point, you may be able to re-introduce it.

Good luck with everything--feel free to let us know how we can help :)

Lisa Mentor
Lisa
Posted

You have gotten some wonderful answers to you question and I agree 110%.

Go for the diet 100% for several months, see how you feel and you may have your answer.

Good luck to you.

lonewolf Collaborator
lonewolf
Posted

Welcome! I'll just chime in with an agreement on the good advice you've gotten - especially that dairy might be causing you trouble too.

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