Doc Told Me Today I Do Not Have Celiacs

[Kimberlee]

Hi! Okay

[Kaycee]

Kimberley, I guess it would've been nice for you to have been told that you had coeliac and then you could work on that, but now you are left wondering what really is wrong. But then again nobody really wants to have coeliac.

!. Not all blood tests will pick up coelaic. There can be false negatives, but not as many false positives, so it is not always black and white. Yes I would ask for a copy of the report, and then maybe you could post it on here, and somebody might be able to help you with it. For all you know it could be verging on positive, and the Doctor read it wrong, who knows?

2. You could try an allergy test, as there is a possibility that you could be allergic to something. Or you could try to eliminate all possible allergens such as peanuts, soy, dairy, gluten and some others, from your diet and see how you feel. It is not easy to do, but for me it has paid off in the long run. Not sure if I did it right, but after a few weeks you can add those items back into your diet, one by one with possibly a couple of weeks between each food you add back in order to see if anything is causing you a problem.

3. Since you have had blood tests and biopsy done, you can now try a gluten free diet on its own, (or in conjunction with an elimination diet) and see if that makes a difference to how you feel. You have nothing to loose, and if you have a positive dietary response to being gluten free, you might just have your answer there. I would probably try the gluten free diet first, remembering that gluten might not be the only food you could have problems with.

4. As for your weird symptom, I don't seem to have it. But on occassions food tend to taste different for me. It is quite a nuiscence and I think it might be due to having eating gluten unawares.

Good luck and I hope you find out what is causing you grief.

Cathy

[Nantzie]

My advice is always to try the gluten-free diet because the testing isn't always accurate. All my tests were negative. I just tried the diet to see if it would help. For me, it ended up that 90% of my health problems for the past 18 years were completely gluten-related. If I hadn't tried the diet, I never would have known.

It's very common for people on this board to not have an official diagnosis, or to have either negative or inconclusive test results. The most trusted test around here is just your response to the diet.

Just give it a shot. Even if it ends up not being the answer to your health issues, you'll at least know if gluten causes problems for you.

Nancy

[Elle4559]

Regarding your fourth symptom it could be gastroparesis also known as delayed stomach emptying. I am diagnosed with gastroparesis and gluten intolerance and I can re taste food for hours because it sits undigested in my stomach. This could be something for you to look into!!

[GlutenWrangler]

You can do one of 2 things. Either try the diet and see if it helps, or get tested through Enterolab. The stool test that they use is much more sensitive than celiac blood tests. Plus you can see if you have the genes that play a role in celiac disease and gluten intolerance. It's like $369 for the complete test, but in your case it might be worth it. The site is www.Enterolab.com if you're interested. I hope you find a solution. Good luck.

-Brian

[Ursa Major]

I agree with the previous posters. Enterolab is the way to go, if you can afford it. Plus, I don't believe your biopsy has any validity, because (if I read what you said right), the biopsy was taken from your stomach, not your small intestine. And even if it was taken from the small intestine, and only one was taken, it could easily have been taken from an undamaged area, with damage all around it that got missed. It is often impossible to see damage without a microscope, and just looking through the camera that went in there isn't good enough to decide if it's celiac disease or not.

Those blood tests are quite unreliable, and result in many false negatives. A positive result can rule celiac disease in, but a negative one cannot rule it out (and the same goes for the biopsy).

So, your negative results don't mean that you don't have celiac disease.

If you can't afford Enterolab, just try the gluten-free diet to see how you feel on it. The diet is the most reliable test anyway.

[Guest cassidy]

My blood test was negative and my gi docs laughed when I told them I thought I had celiac because I had a normal biopsy. I went gluten-free and I feel amazing. It would be nice if doctors knew more about it or if they would at least be open minded and tell patients that the blood tests aren't that accurate.

Also, you may be gluten intolerant and not have celiac, but the treatment is still the same - gluten-free diet.

I struggled with not having an official diagnosis but since all my old problems went away I got over worrying about it. If it was me, I would go on the diet. I felt so much better in about two weeks and I wouldn't want to wait for someone to give me the ok to try the diet or do more testing.

Many people have gotten answers from Enterolab. I don't know if you have to be eating gluten for that, I wouldn't think you would need to for the gene part of the testing at least. If you try the diet for a month and don't feel any better, then you could always go the Enterolab route. I think that would depend on how important it is for you to get a positive test result, and money of course.

Trust your body and hopefully you have found what is wrong. Good luck - lots of great info here and people to help.

[chrissy]

kimberlee-----i do not have celiac, some of my children do, but i have the same problem with garlic and onions that you do. i can taste it into the next day, and i get nauseated when i eat them. i think it is mostly onions for me. i love ranch dressing and i like onions, but i make it a point to try and avoid them as much as possible. i guess i thought everyone could taste those kind of things for hours and hours.

the reason you can smell those things on your breath is because they are absorbed into the bloodstream, and then the blood is carried to the lungs, and we breath out the strong smell (i just learned this during the last year---maybe everyone already knew that)