Newbie Questions

[jaycee]

Hi there. This forum has been so helpful and informative. I'd like to give a little background about myself, and find out if others who are more informed or in similar situations can offer any advice. Thanks.

I was recently tested for celiac disease, and the test that were performed came back negative.

They were:

Tissue Transglutaminase Antibody IGA Results = <3

Explanation of values: <5 = negative, 5-8 = equivocal, >8 = positive

Immunoglobulin A results 226 (reference range 81-463 mg/dL)

Gliadin Antibody (IGA) Results <3

Explanation of values: <11 = negative, 11-17 = equivocal, >17 = positive

I have been struggling for the last 5 years to figure out "what is wrong with me". My symptoms include joint pain, fatigue, diahreeeeea, irritiblity, lack of mental focus, numbness in toes and tingling in arms and hands, bloated belly, weight gain, little pimples on my arms and torso, occasional mouth "ulcers" (ulcers were much more frequent and severe when I was a child).

I am hypothryoid (hashimoto's), and was diagnosed with "fibromyalgia". I have followed the recommendations of my physicians to alleviate these symptoms to no avail.

My mother has chrohn's disease, and I recently had a colonoscopy to rule out crohns, IBS, and colitis. After the procedure, the GI recommended Celiac panel.

I did some internet research, and about celiac, and it seemed to fit. I was actually hoping that I had it.

Anyway, after the test results came back negative, I decided to do an experiment, and cut out wheat gluten from my diet. And I feel better. Sometimes I forget what it is like not to feel bloated and belly achy, and it takes some getting used to! I can feel my toes!

My questions are:

Besides biopsy, are there other tests my doctor could have done?

Perhaps I am "wheat sensitive", and if so, should I be concerned for my children's long term health?

How important is it to get a difinitive diagnosis, if going gluten free makes me feel healthy again?

[confused]

Well first of all, it doesnt look like your dr did the whole celiac panel, he only did IGA blood test. The celiac panel had 5 parts to it. You can ask your dr for an biopsy to see if there is any damage, but since u are gluten free it might not be accurate.

You can test threw enterolab and see if u have the gene and any malabsorption issues.

Or you can just stay on the diet and continue to feel better with no official diagnosis, like many do.'

paula

[jaycee]

Well first of all, it doesnt look like your dr did the whole celiac panel, he only did IGA blood test. The celiac panel had 5 parts to it. You can ask your dr for an biopsy to see if there is any damage, but since u are gluten free it might not be accurate.

You can test threw enterolab and see if u have the gene and any malabsorption issues.

Or you can just stay on the diet and continue to feel better with no official diagnosis, like many do.'

paula

I checked Quest Diagnostics website (that's who did the test), and it looks like they only perform the other two test if the three that I listed come up positive. I am going to speak with my doctor.

Thank you for that info.

[MaryJones2]

Hi there. This forum has been so helpful and informative. I'd like to give a little background about myself, and find out if others who are more informed or in similar situations can offer any advice. Thanks.

I was recently tested for celiac disease, and the test that were performed came back negative.

They were:

Tissue Transglutaminase Antibody IGA Results = <3

Explanation of values: <5 = negative, 5-8 = equivocal, >8 = positive

Immunoglobulin A results 226 (reference range 81-463 mg/dL)

Gliadin Antibody (IGA) Results <3

Explanation of values: <11 = negative, 11-17 = equivocal, >17 = positive

I have been struggling for the last 5 years to figure out "what is wrong with me". My symptoms include joint pain, fatigue, diahreeeeea, irritiblity, lack of mental focus, numbness in toes and tingling in arms and hands, bloated belly, weight gain, little pimples on my arms and torso, occasional mouth "ulcers" (ulcers were much more frequent and severe when I was a child).

I am hypothryoid (hashimoto's), and was diagnosed with "fibromyalgia". I have followed the recommendations of my physicians to alleviate these symptoms to no avail.

My mother has chrohn's disease, and I recently had a colonoscopy to rule out crohns, IBS, and colitis. After the procedure, the GI recommended Celiac panel.

I did some internet research, and about celiac, and it seemed to fit. I was actually hoping that I had it.

Anyway, after the test results came back negative, I decided to do an experiment, and cut out wheat gluten from my diet. And I feel better. Sometimes I forget what it is like not to feel bloated and belly achy, and it takes some getting used to! I can feel my toes!

My questions are:

Besides biopsy, are there other tests my doctor could have done?

Perhaps I am "wheat sensitive", and if so, should I be concerned for my children's long term health?

How important is it to get a difinitive diagnosis, if going gluten free makes me feel healthy again?

I would recommend a biopsy and the genetic test but you have to keep eating gluten for your biopsy. Even if it is negative you can have serious issues with gluten without being celiac. A few people in my family have this problem. We did the genetic tests and have both celiac and gluten sensitive genes. My list of complaints included the stuff you mention. There was a period of time where my Dr thought I had Rheumatoid Arthritis. Every bit of it went away when I went gluten free and only comes back when I get glutened. If you feel that much better on the diet there is no reason not to follow it.

[jaycee]

I would recommend a biopsy and the genetic test but you have to keep eating gluten for your biopsy. Even if it is negative you can have serious issues with gluten without being celiac. A few people in my family have this problem. We did the genetic tests and have both celiac and gluten sensitive genes. My list of complaints included the stuff you mention. There was a period of time where my Dr thought I had Rheumatoid Arthritis. Every bit of it went away when I went gluten free and only comes back when I get glutened. If you feel that much better on the diet there is no reason not to follow it.

Oh my.

My rheumatologists thought I had RA, MS, Lupus. Then hypochondria. By the time we arrived at fibromyalgia, I'd begun to believe it myself.

Endocrinologists told me that I need to accept that i'm in my 40's and this is my new normal.

[CarlaB]

All your symptoms are consistent with Lyme Disease. It's hard to convince doctors to test for it ... but insist on it!

YOU need to call Open Original Shared Link and ask them to send you a test kit. Have your doctor use that one ... it's the ONLY lab that tests for all relevant "bands". When your doctor gets your results, be sure you get a copy of them. Mine were positive and my doctor told me they were negative, plus, most doctors use the CDC tracking criteria for diagnosis and it was never meant to be used that way ... it was meant for tracking purposes only.

Other websites to check out --

www.ilads.org

www.Lame Advertisement

Open Original Shared Link

It is NOT NORMAL to feel bad! I don't know why doctors say that .... makes me wonder how healthy some of them are!

[Nantzie]

I had negative blood tests and a negative biopsy. You may have a form of gluten intolerance that doesn't usually involve biopsy-positive intestinal damage, but involves neuro problems such as fibromyalgia. Problem is - no mainstream medical tests. You just have to try the diet and see what happens, which you already have.

I also had fibromyalgia-type pain, along with some other neuro symptoms. I used to get these nerve pains that felt like painful electric shocks that would just come out of nowhere sometimes. Then there's the GI symptoms. Ugh.

I had the same experience with the gluten-free diet. Not long after I started it my symptoms went away. Poof! All gone.

I don't technically have celiac because the biopsy and blood were negative, but I figure the resesarchers can figure out what they want to call it. The bottom line is that gluten was the answer for me. I'm not waiting around for an official phrase.

I've been gluten-free for close to a year and a half now. The only time I have any pain or mobility issues is either when I get glutened or if I actually INJURE myself. I tweaked my back a couple months ago when we moved. Because I was actually able to lift all the heavy stuff. I got a little She-Ra with it and overdid it.

I think that people should do the medical tests to make sure something else isn't going on that's more scary (like cancer) or may need a different type of diet (like Crohn's).

There are tons of us without an official diagnosis. You're in good company there. Nobody nit-picks about any of it here. There's a lot of evidence that the researchers haven't waded through yet that shows that there is more than one type of gluten-related disorder going on. Classic, biopsy-positive celiac just happens to be the one that they know the most about at this point.

So welcome to the board. Kick off your shoes and make yourself at home.

Nancy

[little d]

HI jacee

Welcome, you sound just like me, I have everything that you just mentioned, the pimpel like things on you arms and torso could be keratosis polaris, I know that i just spelled that wrong sorry, I was diagnosed with that in my early 20's and had it all my life but I have it all over. And I tested all negative and Now I am going over to my GI's office to get a copy of my file so I can have a copy and also to look at my lab results I don't have a clue to what the numbers were, I never thought to ask for a copy of the results. Later.

Donna