Celiac or not to be Celiac?

[Awena]

Hi all I would like some input on this.

I have been having stomach problems for the past 2 years. 1 year ago I was tested for Celiacs and two of the 3 antibody tests came back negative the third one was positive but apparently it wasn't the one that dictates celiacs disease. I had a biopsy as well and a colonoscopy and all was clear so I was diagnosed with IBS. The only thing is before I had the biopsy for celiacs I was on a gluten free diet and stopped only 3 months previous..could this of messed up my results? I have an Aunt with Celiacs so it is possible that I can have this? My new Dr said I should try the diet again becuase I did feel better on it. I'm just confused is it easy to misdiagnose celiacs?

Thanks,
Ona

[aklap]

Hi Ona,

Welcome to the board! Maybe we can help clear things up a bit.

Yes a GF diet might alter the test results. More so in the blood tests, but it can affect the biospy as well. Do you know what blood tests were run? Even the biopsy is not fool proof. Damage might be patchy and if the doc didnt take enough samples or samples from a damaged area - those samples would look normal.

Yes it is easy to misdiagnose CD. It happens all the time. There are some 250 symptoms associated with CD. It's often called "The Great Imitater" because it manifests itself in so many different ways. Plus it can be different for each person! Many Doctors often miss it because they are look for the "classic" symptoms (diarrhea, foul smelling stools, etc...gastro type things). Only 50% of the diagnosed celiacs show gastro problems! Some have NO symptoms!

With your family history and your symptoms...it's very possibly you have CD. CD is genetic. This means you have the genes for gluten sensitivity. It does not mean you have it...it just means you are pre-disposed for having it. There is usually some type of trigger that will cause it...an ilness, an infection, surgery, possbily stress.

Studies show that 1 in 133 healthy people have gluten issues. 1 in 56 for those that have related symptoms. 1 in 22 for those that have a 1st degree relative.

I would say that you probably have your diagnosis already...improvement on a GF diet. Some doctors will diagnose CD with that fact.

I would suggest you spend some time here and read as much as you can about this.

I wish you luck on your knowledge quest! Please - don't be afraid to ask questions!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Guest]

It is my understanding that there are only 2 ways to diagnosis Celiac: one is an endoscopy, which you did not have, and the other is a blood test which you had and which proved positive. My doctor was suspicious of Celiac after viewing the results of an endoscopy...which looks at your stomach lining and the top of your small intestine. He confirmed his suspicions with a blood test. My suggestion is you consider an endoscopy before settling on a diagnosis of IRS. Good luck. Bill

[aklap]

There is also a place in Texas called EnteroLab. They do stool testing. This company is not yet widely accepted by the mainstream medical community...yet. But Dr. Fine's stool tests are reported to detect gluten antibodies for up to years after being GF.

I know many that have used this lab to either diagnose or confirm a diagnosis. Our own SKBIRD has been tested there and posted her results. I have a casein test waiting to be finished myself.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[mjbonsais]

I will post mine for the sake of euphony here. I was found to have gluten sensitivity and celiac sprue gene. I also have a nephew that definitely carries the gene. So------- this speaks volumes unspoken to me. There are times when cd will not disclose itself with blood or endoscopy. I feel if you have the gene you can change your eating habits accordingly to offset further/future health issues that could trigger more auto immune tendencies. I am not a doctor but have them in my family and many nurses. If you can solve by diet so be it.

You can also have cd or gluten sensitivity along with other intolerances to different foods. Those intolerances to other food groups CAN represent itself of symptoms similar to gluten. I know because I have milk, egg, yeast, gluten and a suspect for me: soy! Here are my results from Dr. Fine at Enterolab:

EnteroLab www.enterolab.com
Specialized Laboratory Analysis for Optimum Intestinal and Overall
Health
Kenneth D. Fine, M.D.
Medical Director
10851 Ferguson Rd., Suite B Dallas, Texas 75228
email: email@enterolab.com Final Laboratory Report

Date: 10-10-2003
Name: Mary Jo
Gluten Sensitivity Stool Test
Fecal Antigliadin IgA 89 Units (Normal Range <10 Units)

Stool Test for Autoimmune Reaction to Tissue Transglutaminase
Fecal Antitissue Transglutaminase IgA 48 Units (Normal Range <10
Units)

Stool Test for Small Intestinal Malabsorption
Microscopic Fecal Fat Score: 181 Units (Normal Range < 300
Units)

Stool Test for Milk Sensitivity
Fecal anti-casein IgA antibody 30 Units (Normal Range <10
Units)

Gene Test for Gluten Sensitivity
Molecular analysis: HLA-DQB1*0201, 0301

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)

Interpretation: Analysis of this stool sample indicates you have
dietary
gluten sensitivity, resulting in an associated autoimmune reaction to
the
human enzyme tissue transglutaminase, but no small intestinal
malabsorption/damage. You also have antibodies to the cow's milk
protein,
casein, and hence, you are immunologically sensitive to foods
containing
cow's milk.

HLA gene analysis reveals that you have the main gene that predisposes
to
gluten sensitivity and celiac sprue (HLA-DQ2). This genotype also can
predispose to microscopic colitis and other autoimmune syndromes.

For optimal health and prevention of small intestinal damage,
osteoporosis,
damage to other tissues (like nerves, joints, pancreas, skin, liver,
among
others), and malnutrition, recommend a strict gluten free diet and
re-testing in one year to insure this reaction is lessening. If you are
experiencing any symptoms, these may resolve following a gluten free
diet.
Since antibodies to cow's milk are found with a greater frequency in
gluten
sensitive individuals and people with certain autoimmune diseases,
removal
of these foods from your diet may benefit you directly, as well as add
to
the benefits of a gluten-free diet.

As gluten sensitivity is a genetic syndrome, you may want to have your
relatives screened as well.

Analysis performed by: Frederick Ogunji, PhD.
Interpretation by: Kenneth D. Fine, M.D.

Thank you for allowing EnteroLab to help you attain optimum intestinal
and
overall health.




Thank you for the opportunity to serve you.

Sincerely yours,

Your EnteroLab Staff http://www.enterolab.com Reply to: email@enterolab.com
_________________
I Am Someone Special

[aklap]

[mjbonsais]

NOPE-But everyone had been telling me that this can/does go along with celiac and gluten senstitivity quite often. My yeast and egg levels are higher I believe. My gluten was definitely up there! yikes!
_________________
I Am Someone Special

[Guest -Ashlea in Missouri]

Al and Mary Jo,
The stool test you are speeking of, how does one go about having that done, how much does something like that cost, and can anyone request to have that done or how does that work? I am very curious, because I have never heard of it before now. Thanks!
Ashlea

[aklap]

Hi Ashlea,

The info can be found here at EnteroLab site: http://www.enterolab.com/

It explains all the testing. Basically, you pick the tests you want, they ask for a credit card number, a "cool whip" bowl shows up to put the sample in. You throw it in the freezer, call for a pickup. They let you know the resuts in about 3 wks.

Make sure you read the "Before the Villi are gone" paper.

You will also find the tests and how much they are.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa