Finally! After a lot of urging, I will be having a celiac disease test next week. I will confirm if my diagnosis is for celiac or IBS (as currently thought) after all. There will also be a flu shot.

[shezbut]

I hope that you finally get the answers that you've been seeking, unhappy guy! Why diagnoses like these take years for doctors to seek solid evidence, I don't know! They sure could save everyone a lot of time and misery if they turned to these tests sooner.

Best wished to you!

The celiac test results came back negative. So, I guess the problem is IBS. Of course, even if I avoid a lot of foods, I still seem to have problems. I am very frustrated with the limited diet and the constant GI problems.

[Yoda]

Have you been on a limited diet for the past couple weeks? Have you limited your intake of wheat and other foods that contain gluten recently? You know that you have to be eating foods containing gluten for the test to be accurate, right? If you have stopped eating gluten before the test you will likely get a false negative.

Originally Posted by Yoda

Have you been on a limited diet for the past couple weeks? Have you limited your intake of wheat and other foods that contain gluten recently? You know that you have to be eating foods containing gluten for the test to be accurate, right? If you have stopped eating gluten before the test you will likely get a false negative.

I have been eating plenty of wheat products. In order to tolerate bread, it cannot have a lot of fiber. I seem to tolerate white rice best. The problem is, neither white bread (which I really don't like) or white rice are particularly healthy, especially for someone like me with prediabetes. Those foods that are a good for my IBS are bad for the rest of me.

[Anika.]

Tests for celiac do come with some false negatives. The tests are not 100%, even after you get a positive test they usually take biopsies with an endoscopy to be certain. And even then they may not get tissue from the affected area, damaged villi is what they are looking for. Sooo many people get false negative tests.. you will see it on every celiac forum. I had three false negatives before they realized I lack some of the antibodies in the first place (IgA deficient) giving false results even tho I had abnormal biopsies.

"a positive result is a strong indication that the patient has the disease but a negative result does not necessarily mean that they don not have it. False positive results are rather uncommon but false negative results can occur." ... this is why they do an endoscopy even after a positive blood test.

To make it all the more complicated you can still have gluten intolerance and not have celiacs. But you still get the same symptoms, but without the damage to the villi in the intestines.

So if your dr suspected celiacs or gluten intolerance, or you suspected it then maybe a good route to try at this point would be to eliminate gluten completely for a few months and see what happens. I know that's it's tricky especially when you have other dietary restrictions. And since it's found in so many foods besides baked goods it's a pain. If gluten was a source of your problems tho, it would really be worth finding out. And it seems the only sure fire way to know is to eliminate it 100% and see what happens.

Thanks, Anika. I am currently in the process of giving up buying red meat. I gave up dairy a long time ago. I will try to take a break from gluten products after the new year starts. I guess that will mean a lot of rice and potatoes. I gave up most candy years ago because I am glucose intolerant. I am feeling so denied already - I am not sure how much more I can stand.

[googley]

I agree with Anika. The celiac tests aren't the most accurate. You could also have non celiac gluten intolerance. It means that you have a reaction to gluten without the IGE (I think that is it) reaction. It will always come up as negative on the celiac tests. it i often simplified as NCGI. So you may want to try going gluten free on your own and see if it helps. Know that gluten hides in A LOT of places. You can get information on going glutne free (and other digestive problems) at celiac.com. They have a message board there that is really helpful.

[Anika.]

No problem.. it took about 32 years for me to get this sorted out. So many different dr's, specialists and tests. I really understand how frustrating it can get. When I went off gluten it was crazy. I had a lot of withdrawal, symptoms got worse for a few weeks but after that it was pretty shocking just how good I started to feel.

My symptoms are so widespread across the whole body from G.I, to skin, bones, muscles.. it's pretty crazy how gluten can do all that. Not only that when I have had some gluten by mistake all my mental health symptoms also come back.

If you decide to give it a shot feel free to PM if you like, I'd be glad to help if you need recipe ideas or just figuring out exactly where the gluten is hiding in foods and other sources. It can be found in some meds as well as toothpaste and the like.

The site Googley mentioned is good. One good thing is that a lot of people with celiacs or gluten intolerance also have other dietary restrictions. Dairy being the most common, nightshades, sulphites etc. So finding recipes you can have might not be too terrible. Once I got off the gluten I didn't really crave grains that much, but there are some good ones out there.

Hope you start feeling better soon!

[bebop]

just a thought here. have you had your gallbladder taken out by chance?

Originally Posted by bebop

just a thought here. have you had your gallbladder taken out by chance?

No. My gallbladder is intact.

I do have a lot of allergies. I emailed my MD with questions about some of the test results and was advised that some of the results are still pending. I am waiting for him to get back to me. So, there might be some gluten intolerance (or others). Like I said, I know that I am glucose intolerant which makes eating fruit and candy problematic - as well as drinking any alcoholic beverages - and, with the IBS, am now lactose intolerant and have cut out dairy. Being on such a limited diet is no fun and it has me very depressed.

[Anika.]

Oh, yes I bet you are getting sick of white rice . Have you tried others kinds of rice? There is volcano rice, I think it's pink, jade rice..green, black rice "forbidden rice" etc. you can find them in health food stores and they have there own unique flavours. Also there are some other really interesting grains, I just saw one in the store.. Bummbeling for the name of it right now. http://www.lotusfoods.com/AllProducts.aspx here is a website so you can see what I am talking about with the rice.. they have so many kinds. I have tried some of them and they are pretty good. I thought there was only brown, white, basmati, sticky rice until I stumbled on these.

There is amaranth, which is a pretty versatile grain too.

Also say if you did have gluten intolerance or celiac it's very common for people with gluten issues to become lactose intolerant, and once off the gluten for a long time many are able to tolerate dairy once again. That's kind of interesting.

I hope you get some answers from your MD, not sure gluten would show up with allergy tests as it is not a true allergy, as in the body doesn't respond the same way with histamines.

If any of those other rice varieties are whole grain/high fiber, I will not be able to tolerate them.

The rest of the blood test report came back yesterday. It found no food allergies other than a sensitivity to peanuts. I have never had a bad reaction to peanut butter.

Perhaps I should heed the advice of a homeopathist I saw long ago to avoid all starches because, being glucose intolerant, they increase the sugar in my blood and sap my energy. He advised that I eat only lean meats and vegetables. I can only eat so many vegs without problems and I am only a so-so meat eater, so the diet did not seem doable.