Testing

[wadaman]

I'm new to the forum and have a couple of questions.

Has anyone had experience with Enterolab for testing? Is it a reputable lab? If the resluts come back indicating celiac, then is a biopsy necessary? Thanks for any help.

[confusedks]

Enterolab CANNOT diagnose Celiac Disease. They can tell you if you're gluten intolerant, but they cannot tell you if you have villi damage/Celiac.

If you're still on gluten, I'd suggest that you have the blood panel done and/or a biopsy.

[wadaman]

Thanks. I had the boold panel and biopsy done a few years ago at Mayo. The boold work was positive but the biopsy was negative. They told me that since the biopsy was negative that I did not have celiac and that I would not in the future because the biopsy would have indicated positive if I were prone to have it. Somehow that doesn't seem right to me. I still have all of the symptoms that I had then. I have recently read on the web that people can develop celiac at any time in their life...even in later years. Do you know this to be true?

[kbtoyssni]

If your blood work was positive, then you have celiac. Your biopsy could have been negative for a few reasons: you didn't have much villi damage (yet!) or the doc didn't biopsy the damaged spots - it's easy to miss the damaged spots if you think about the few small biopsies they take versus the surface area of the intestine. Intestinal damage will increase over time so I bet if you have a biopsy every year eventually you'd get a positive. You should go gluten-free immediately, and shame on your doctor for saying you didn't have celiac!

[aikiducky]

They told me that since the biopsy was negative that I did not have celiac and that I would not in the future because the biopsy would have indicated positive if I were prone to have it.

What nonsense. Villi damage doesn't just appear out of nowhere overnight, it develops over a period of time. I've read of quite a few people who were periodically tested over a number of years and eventually developed enough damage to get a diagnosis of celiac.

If you want an official diagnosis of celiac you should request another biopsy I think. Otherwise there's nothing to stop you from going on a gluten free diet.

Pauliina

[wadaman]

Thanks. I appreciate all of the help.

[Ursa Major]

A positive biopsy is irrefutable proof of celiac disease, but a negative biopsy can absolutely NOT rule out celiac disease.

If you show improvement on a gluten-free diet, that would, along with positive blood work, be absolute proof that you have celiac disease.

[gfpaperdoll]

although I love Enterolab, I must point out that they are just like the Mayo clinic neither one can diagnosis Celiac Disease!!

[wadaman]

although I love Enterolab, I must point out that they are just like the Mayo clinic neither one can diagnosis Celiac Disease!!

I don't understand. I thought since they do biopsys, they could Dx.

[Lisa]

I don't understand. I thought since they do biopsys, they could Dx.

Yes, a biopsy can diagnose for Celiac. But, with over twenty-something feet in the small intestines, it would be virtually impossible to test everywhere. As stated, a sampling for biopsy can be random and frequently miss effected areas.

I had six biopsy samples and two were positive - enough for a diagnosis.

Your blood test is a diagnosis and a positive dietary response can be your conformation.

[Lizz7711]

I don't understand. I thought since they do biopsys, they could Dx.

Enterolab doesn't do biopsies, they take a stool sample and test for antibodies. I think it's defintely worth going through their testing since they include a gene test, malabsorption test, and casein sensitivity test with the gluten sensitivity panel.

With the positive blood test, you can rest assured you DO have celiac or gluten sensitivity and should not be eating any gluten ever.

good luck,

Liz

[Calicoe]

Does anyone know how much the gluten panel would cost at Enterolab, and if it is still worth it for me to test if I have been gluten-free for a month (more or less not counting mistakes, like yesterday).

[Calicoe]

I found out:

Open Original Shared Link

$369

Gluten sensitivity stool test, tissue transglutaminase stool test (test for the autoimmune reaction caused by gluten sensitivity), intestinal malabsorption test, gluten sensitivity gene test, and for a limited time, free milk sensitivity stool test (Best Test Panel for Gluten Sensitivity). The combination of tests when ordered in this panel saves you greatly over ordering the tests individually.

$249

Combination of stool test for gluten sensitivity, stool test for tissue transglutaminase, and test for intestinal malabsorption. These tests complement one another and are best ordered together. Save money by ordering them together.

Individual tests

Stool Test for Gluten Sensitivity ($99)

Gene Test for Gluten Sensitivity/Celiac Sprue ($149)

[wadaman]

If your blood work was positive, then you have celiac. Your biopsy could have been negative for a few reasons: you didn't have much villi damage (yet!) or the doc didn't biopsy the damaged spots - it's easy to miss the damaged spots if you think about the few small biopsies they take versus the surface area of the intestine. Intestinal damage will increase over time so I bet if you have a biopsy every year eventually you'd get a positive. You should go gluten-free immediately, and shame on your doctor for saying you didn't have celiac!

Thanks for all of the help. I have one more question. I went back to the results for the blood test that I had done a couple of years ago. The IGA was less than 20 and it stated that the normal range was "less than 20". The IGG however was 36, and again normal range is less than 20. I'm not sure what the IGA and IGG represent. Also, what is the significance of one being under 20 and the other at 36? Thanks for any help.

[aikiducky]

The IgA and IgG tests are test for antibodies against gliadin which is a part of gluten. If you're sensitive to gluten your body produces antibodies against it. The IgG is often the first one to go up but there's some doubt about it's reliableness. I don't remember exactly why, I think it might have been that it can be elevated after and infection as well or something like that.

There are a couple other blood tests that test for antibodies against your own tissue. Those get elevated once you start to develop damage in your intestines from celiac. Sounds like those weren't done the last time.

Enterolab does some of the same antibody tests, but instead of testing your blood, they look for antibodies in your stools. The logic of that being that they would appear sooner in stool samples before showing in blood samples. They don't claim to diagnose celiac, since officially they can't diagnose celiac without a biopsy. Basically what Enterolab says is that anyone who tests positive from their tests should feel better on a gluten free diet.

Now here's the crunch for me - if just try the gluten free diet, and you feel better, you've effectively proven just as much as the Enterolab test. So I don't really see the necessity of doing their test, unless you really don't trust your own instincts and want something on paper just for yourself.

If it was me, I'd consider my two most useful option to be either 1. get a new round of blood tests and biopsy, because there might be enough damage now to get a positive diagnosis, or 2. go gluten free and see how I feel.

Pauliina

[veggienft]

What Paulina said. You might need to prove to someone else that you have celiac disease. In that case the tests might be useful. But if you're just trying to satisfy yourself, you're going through a very rigorous, fatally flawed exercise for nothing. There are many doctors who, I believe correctly, test for celiac using nothing but a gluten-free diet.

If the diet works then stay on it. If you need a name for that, then call it celiac.

..

[veggienft]

The more one looks into the research on gluten damage and associated genetic iterations the more one sees that, at this stage, it's a very inexact science. Here are some of the issues:

So far medical science has identified two genotypes associated with celiac. They are generally lumped into HLA-DQ2 and HLA-DQ8. Of celiac cases they represent roughly 92% and 8% respectively.

About 1/3 of the American population carries at least one of these genes. Scientists have identified classic celiac disease, with associated small intestine damage, in about 1% of Americans. So celiac disease is only a subset of celiac genetics. Genetics cannot be used as a test for intestinal celiac.

Scientists quickly discovered that intestinal celiac patients suffer other autoimmune disease at an alarming rate. So they looked into it and discovered that people with genetic markers for celiac, but no intestinal celiac disease have a high rate of autoimmune disease.

So scientists dissected the genetics for these markers, and found this in the DQ2 marker (92% of intestinal celiac cases): The DQ2 gene is recessive for the trait of intestinal celiac, but is dominant for the trait of autoimmune disease. It's known as gene dosing.

In the population of DQ2 carriers, 1/3 can catch intestinal celiac and celiac-related autoimmune disease ("silent celiac"), and 2/3 can catch silent celiac without exhibiting intestinal celiac symptoms. Because far from everyone with a double dose of the DQ2 gene gets intestinal celiac, one must presume an even smaller portion of people with a single dose of the DQ2 gene get silent celiac. So hypothetically, comparable portions of the population have intestinal celiac as have celiac-related autoimmune disease.

But now scientists are following up on another obvious conclusion of this scenario. The above statistics would mean that people with genetically identifiable celiac represent half or less of autoimmune disease cases. And autoimmune disease, by definition, is a disease of molecular mimicry. The body attacks "self" tissue because it resembles "non-self" invaders. So if the DQ2 gene is the autoimmune mechanism for many autoimmune disease patients, then are there other autoimmune disease patients whose non-DQ2 genetics cause celiac-related autoimmune disease?

And the answer is appearing to be ......."Yes". Wheat gluten, via many human genotypes, appears to be a major enabler of autoimmune disease. The problem lies in ingesting glutenous grain. We're just lucky that the DQ2 gene produces digestive symptoms which caused scientists to track their connection to seemingly unrelated symptoms.

The answer to your question is, non-diet diagnosis of celiac is in its infancy, and cannot be trusted.

[veggienft]

A major flaw in the statistics circulating about autoimmune celiac disease is the time-related cross section. For instance, at any given time, X percent have celiac-related autoimmune disease.

Medicine is a population science. Using the above statistical method, populations with a life expectancy of 40 years have very little autoimmune disease .......because things like starvation and malaria kill most people before they can contract autoimmune disease. But in long-lived populations, autoimmune disease is a major killer. A time-cross section of western-society auto-immunity is biased because it tends to report only the autoimmune cases between diagnosis and death.

But we're looking for the prevalence of autoimmune genetics. For this purpose, statistically valid studies would report the percentage of people who contract autoimmune disease sometime in their lives. In western society, the portion is very high, exponentially higher than the portion revealed by a time-cross section.

Because the correlation between autoimmune disease and celiac is very strong, one must conclude the incidence of silent celiac is massive in western civilization.

[wadaman]

Thanks for the help. It does tend to get a little confusing because they are few certainties in the testing.

[veggienft]

The above revelation that roughly 2% of Americans have celiac-related disease at any given time ..........combined with the statistic that 1/3 of Americans possess at least a half dose of the as-yet associated DQ2 and DQ8 genes ........means that up to 1/3 of Americans would probably acquire DQ2 or DQ8 associated autoimmune disease except for those killed by something else first.

There are portions of China where poor growing conditions periodically yield Aspergillus flavus fungal infestation. Native inhabitants store the infested rice in communal bins where the infestation multiplies. The result is the poison "aflatoxin". As a result of ingesting aflatoxin, as many as 90% of area residents contract cancer at some time in their lives. That's a relevant statistic in an overall culture with a roughly 60-65 year life expectancy.

Under a Chinese program, a team of Johns Hopkins scientists is studying this aflatoxin outbreak.

I draw this comparison because of the interim disease step represented by aflatoxin. To the knowledge of science, rice does not cause disease. Aflatoxin causes disease.

An off-chute is the blossoming incidence of American "peanut allergy". Peanuts grow in the ground, where poor growing conditions can cause the same aflatoxin infestation as the above Chinese rice regions. So American allergy patients go in for an allergy panel and test positive for peanut allergy. Are these patients reacting to peanuts, or to the aflatoxin associated with poor farming techniques? Are the peanuts used in the panel similarly infested with aflatoxin? Is the medical establishment mistaking a rise in peanut allergy for a rise in peanut aflatoxin poisoning? Or have American peanut eaters' immune systems been flooded with so much Aspergillus that they've developed a reaction to both?

A parallel can be drawn between rye grain and the fungus which causes deadly ergot poisoning. People get ergot poisoning from the toxin of a fungus which infests rye. They don't get poisoned from the rye itself.

My question is, when evaluating celiac disease: Has science come far enough to even separate the effects of grain proteins from those of the toxins produced by microorganisms which infest those grains. As shown with rice, peanuts and rye, normally people get sick from toxin produced by a fungus which grows on the crop. Sometimes the DNA of the fungus is indistinguishable from the DNA of the crop. And that molecular mimicry plays a part in the human immune reaction, and produces autoimmune disease.

Candida albicans is a fungus which can grow on wheat, if only in the gut. Candida produces scores of chemicals which are toxic to humans. The surface of candida albicans presents proteins which are genetically identical to gliadin protein.

I've read a lot about the individual points of evidence and logic processes which scientists use to conclude that celiac is a grain-caused disease. I believe the evidence can just as easily be assembled to conclude that celiac is a fungus-caused disease. And if compared with other food-produced illnesses, it makes more sense.

All told, I don't believe medical science has even come far enough to determine what actually causes celiac disease, grain gluten, candida albicans, or both.

[nora-n]

Just to comment and add to the candida-celiac connection, there is even an article in The Lancet about Candida triggering celiac antibodies....who knows what else does.

Open Original Shared Link here is just one abstract about celiac genes and another autoimmune disease, hashimoto's. There are more abstracts like that.

Open Original Shared Link

nora