Getting A Diagnosis

[Guest Eagle]

Hello, I recently saw a recommended naturopath who sat down with me and said that I had all the symptoms of celiac disease or gluten intolerance. I went to my GP who did order the celiac blood panel and all of the results were negative. My GP concluded that I did not have gluten intolerance. I went back to the naturopath who ordered the enterolab stool & genetic testing supplies. I haven't yet done the test. I felt so ill I got into a gastroenterologist right away who during the intake interview said that he went by lab testing that was scientifically proven, and the enterolab tests were not among those. In other words, even if the test comes back positive it won't be looked at as having any meaning. I will get an endoscopy and biopsy done but I have heard that sometimes they don't see anything there either. It is very confusing to me and I am quickly getting into severe debt besides feeling horrible. If my enterolab comes back negative I guess I will take it from there, but meanwhile it is hard to have hope when so many doctors have written you off with some psychiatric somatic or hysterical syndrome.

[nikki-uk]

Don't loose hope yet.

My hubby had negative blood results to the celiac disease screen but went onto have a positive biopsy.

One reason you may end up with negative bloods is a condition called IgA deficiency - in this case biopsy is the only way to dx celiac disease.

I assume you are still eating lots of gluten??

Lots of people here have used Enterolab - and it has given them answers where conventional testing hasn't.

..And finally, - even if all the tests come back negative there's nothing to stop you doing a trial of gluten-free to see if it makes you feel better.

Good Luck !

[jerseyangel]

Hi Eagle,

I just want to quickly add that you should not go gluten-free or gluten lite before your biopsy. Doing that will skew the result.

Best of luck with everything--and I agree with Nikki, if all tests come back negative, try the diet. There are lots of people here who are gluten intolerant, and have benefited greatly from the gluten-free lifestyle.

Welcome!

[Nancym]

Even if your biopsy is negative try the diet. So many of us have and feel so much better for it. What've you got to lose?

[LyndaCanada]

I would encourage you to have the biopsy. I too have had 2 negative bloodtests but two POSITIVE biopsies. They did things a little backwards for me, I actually had the biopsy done before the blood test which was probably a good thing because my GP was trying to convince me that I couldn't possibly have Celiac Disease because of my STRONG negative results. You should have seen the GI doctors face when I told him what my GP said, let's just say, he wasn't impressed.

If you do have the biopsy, you should be eating gluten for a proper diagnosis. In my case, I was eating gluten before my first biopsy so they could see the flattened villi but after eating gluten-free for about 2 weeks, my 2nd biopsy still showed signs of damage but there was some healing already. Goes to show though, going gluten-free has helped my healing in a short time.

Good luck! That's horrible that you have to pay for all of these tests. In Canada it's all covered by our health care system.

Good luck!

Lynda

[lisalouryan]

I was diagnosed a few weeks ago by Enterolab as being gluten intolerant and need to go on a permanent gluten-free diet. This after many years of trying to find out what was wrong with me. My own family doctor thinks this is all in my head - I'll be looking for a new family doctor by the way. I had also had all the regular tests ordered by my family doc - all coming back showing nothing unusual.

I have been gluten-free for only a week and am noticing improvements in my health already. If I had stuck with my family doc, I would be still spinning my wheels and feeling like crap.

Try not to give up hope - and as others have recommended, try going gluten-free. If it doesn't help, you've lost nothing, and if it does - imagine the possiblities!!

I'm even starting to have hope again that I can get back to a more normal life!!

[GlutenWrangler]

That gastroenterologist is an idiot, like many other gastroenterologists. If the Enterolab results are positive, you should trust them, especially considering your Naturopath concurs. Good luck.

-Brian