Suggestions Needed For Next Step...

[tummytroubles]

I've never posted anything to an online message board, so I hope I'm doing it correctly :-)

I think that I may have a gluten intolerance of some sort, but I'm not sure if it is celiac or not. I'd love to find out if my symptoms are similar to what anyone else out there has had, and what suggestions anyone has as to what my next step should be. Should I be tested, if so what tests, etc...

I have been on a gluten free diet for the past 1 1/2 years after suggestions from my husband that avoiding gluten might help my multiple sclerosis (MS) and stomach pain. I had already discovered that couldn't eat any dairy (including casein), sugar, onions, and garlic as the result of an elimination diet.

After starting the gluten free diet, I found that my emotions leveled off. I also found that my thinking was more clear and less "foggy". When I reintroduced wheat back into my diet as an experiment after about 2 months, I had stomach pain, mild facial numbness (similar to MS) and severe depression the next day and it really scared me. I seemed to feel better a few days later. After about 7-9 months of being gluten free, I mistakenly had a lot of wheat for dinner at a restaurant. That night I was in so much abdominal pain and it didn't heal completely for a couple of months.

Recently, I ate out at a fast food Chinese restaurant where I knew that the soy sauce probably contained wheat. I was feeling pretty good so I decided to take the plunge and eat it anyway. My stomach has hurt ever since. The pain is mainly in the upper center to upper right side, and is less when it is empty.

Another bit of info is that one of my cousin's daughters had autistic behavior, and once taken off of gluten and dairy, her personality completely changed. It seems to be from our side of the family rather than from her husband's side.

Thanks for your help!

[Guest nini]

honestly it doesn't matter if it's Celiac or Gluten Intolerance, the end result is you treat both exactly the same, strict lifelong adherance to the gluten-free diet. You've self diagnosed yourself with the most valid diagnostic tool their is, dietary response. You know you need to be gluten-free, and you are also on your way to figuring out your other intolerances.

welcome to the crew!

[SchnauzerMom]

It definitely sounds like you need to avoid gluten. If you feel better without it then avoid it. There is a lot of stuff out there to eat that doesn't have gluten. You don't have to feel deprived.

[tummytroubles]

Thanks for your responses :-)

I'm definitely going to stay on a gluten free diet. I wasn't convinced before that I might have to be concerned about small amounts of gluten. I thought it wouldn't make a big difference; especially since I may not even have celiac disease. For other intolerances I sometimes can have small amounts of the food without major consequences. I guess it must be different with gluten for me for some reason.

Is there any value in getting tested to know whether or not I have celiac disease? It seems that many tests are pretty expensive, but if they're worth it I guess that doesn't matter so much. The thing I was thinking was that it could be important if I were to have children and also to let my family know so they might think about getting tested too. Unfortunately, most of my friends and family think I have gone off the deep end with my diet and that I'm just too "high-strung" and picky. They seem to think that if I would just lighten-up most of my digestive problems would just go away and I would be normal again. It makes it pretty tough.

[sspitzer5]

Is there any value in getting tested to know whether or not I have celiac disease? It seems that many tests are pretty expensive, but if they're worth it I guess that doesn't matter so much. The thing I was thinking was that it could be important if I were to have children and also to let my family know so they might think about getting tested too. Unfortunately, most of my friends and family think I have gone off the deep end with my diet and that I'm just too "high-strung" and picky. They seem to think that if I would just lighten-up most of my digestive problems would just go away and I would be normal again. It makes it pretty tough.

Sadly, the standard medical tests likely won't help in your case because you've already been gluten free for so long. To get the right results, you would have to reintroduce gluten for some period of time and then get tested. I haven't been willing to do this because I know I would be miserable. There are a lot of us in this boat.

The other option would be to do something like Enterolab. They use a stool test and can supposedly pick up gluten intolerance even if you aren't eating gluten. However, mainstream medical doctors don't recognize this test as valid yet. I tested positive with Enterolab. I had 2 biopsies and they were both inconclusive since I'd already been gluten-free for 5 months.

Bottom line is, listen to your body. If you don't feel well eating gluten, don't eat it. But, I do understand that people sometimes think you are crazy. I guess it's one of those situations where you figure out who your real friends are!

S