Enterolabs?

[TJSpin]

I got my daughter tested for gluten sensitivity through Enterolabs and she came back positive (73 units, <10=normal). I'm reading a lot about the stool test debates. Is it just that some think it is a test for celiac when it's actually for GS? OR, is it the test altogether? Do some think a positive gluten sensitivity test could actually be negative?

Tori

[kareng]

Read around on here. Many people who have a scientific background object to them because they will not publish thier findings. So there is no scientific research or evidence that the tests work. I have never heard of anyone who has sent them tests and not had a positive lab result. Maybe someone else has?

Why didn't you get a Celiac blood test from the doctor's office? If you have insurance, they would probably pay for that. All these various " do- it- yourself" places are usually not paid by insurance.

[burdee]

Read around on here. Many people who have a scientific background object to them because they will not publish thier findings. So there is no scientific research or evidence that the tests work. I have never heard of anyone who has sent them tests and not had a positive lab result. Maybe someone else has?

Why didn't you get a Celiac blood test from the doctor's office? If you have insurance, they would probably pay for that. All these various " do- it- yourself" places are usually not paid by insurance.

In order to get scientific work published, you need peer reviews. If other doctors won't review your work, you don't get published. Why would other docs refuse to review important work? The same logic that says a negative blood test means no celiac disease, that even with a positive blood test, a biopsy is required, that even if only 3 (of the recommended 6) biopsy samples are taken and found negative, the patient doesn't have celiac, etc, etc. I'm confounded a population which struggled with doctors to get celiac tests, suffered through (sometimes years of) misdiagnoses, false negative celiac results, and often self-diagnose just to do what works for them (avoiding gluten). After all those struggles with mainstream docs, they won't consider important work and testing, because the same doctors who misdiagnosed them and discounted their test results won't consider Dr. Fine's work at Enterolab.

Dr. Fine is a rebel, just like the doctors who discovered H. Pylori (not excess stomach acid) caused stomach ulcers. For years other docs discounted their work. Progress in the medical community must often overcome long standing beliefs, which are not easily relinquished.

[Lisa]

Here is an excellent article, in my opinion:

Open Original Shared Link

Confusing the picture further are private labs that offer tests of stool or saliva that they say can definitively diagnose gluten sensitivity. Experts say that such tests haven't been validated and shouldn't be relied on for a diagnosis. "If anyone claims they have a test that is specifically for gluten sensitivity, there is no such thing, though I'm not ruling it out in the future," says Dr. Fasano.

[burdee]

Here is an excellent article, in my opinion:

Exactly. There are many opinions out there about what constitutes a valid celiac diagnostic test. Because I didn't want to return to eating gluten for a blood test that depends on enough gut damage to allow gluten antibodies to leak into the gut, I used Enterolab tests to verify that I had gluten intolerance, casein intolerance, high Ttg and genes which predispose me to celiac disease. That info, along with my history of symptoms, convinced both my HMO PC and my naturopath that I have celiac disease. Elab tests may not qualify as the 'gold standard'.patients However patients, who have celiac disease symptoms for years, while they are misdiagnosed, discounted and dismissed, may prefer information which supports their decision to do what they already know works for them (avoiding gluten), rather than continue to eat gluten to support tests flawed by many false negative results (both blood and biopsy tests for celiac).

[Skylark]

The problem with Enterolab is that their own data show that fecal anti-gliadin is a poor predictor of feeling better on the diet. There is also a peer-reviewed study showing fecal AGA appearing and disappearing in the stools of healthy people who are able to eat wheat comfortably. In addition, when Enterolab tested healthy people they got a very high 30% false positive rate on fecal AGA.

If your daughter has fecal TTG that's more meaningful and she may be celiac.

Burdee, you seem to have some misunderstandings about peer review. It is a quality check, where another scientist reads the manuscript and makes sure there are no major issues with the study. If a study can't get into a peer reviewed journal it's generally because the work either shows nothing new (not the case with Enterolab) or is so flawed as to be meaningless.

[TJSpin]

Thanks everyone. I had her tested for gluten sensitivity through Enterolabs because of the ease of the stool test. She's 6 and if I could avoid a blood draw, I would. I am talking to my doc about the blood test but don't we all know how unreliable that is, at least for celiac diagnosis. Is the blood test more reliable for gluten sensitivity testing? Also, being 6 I just wonder how destroyed her intestines could really be? She shows no gut issues but does have tooth enamel issues and geographic tongue. She's the shortest in every class she's in but so are her dad and I. I don't think a removal test would work for her...although we are doing what we can/know to be 100% free of gluten. So, basically, we could be going through all of this worrying for nothing (not that we would eat gluten anyway)?

[Skylark]

Did she have TTG at Enterolab or only anti-gliadin? If she only has anti-gliadin I'm sorry to say it, but she needs the blood draw. The blood test is not as sensitive as one would hope, but it will catch 3 out of 4 cases of celiac so it's well worth doing. Unlike Enterolab, false positives are pretty rare on the blood tests.

If she has no GI issues at all and her short stature is genetic, I am not sure she has that many symptoms of celiac. The poor tooth enamel can be caused by malabsorption, but it can also be caused by diet (a lot of food kids eat these days is very nutrient-poor and loaded with sugar) or overuse of antibiotics. I think of geographic tongue as a sign of allergies more than celiac, though I could be mistaken. When you get her celiac test, you might want to see if the doctor will test her for deficiencies including calcium, vitamin D, B12, and folic acid. If she has deficiencies you have better evidence for malabsorption.

I'm sorry but the only accurate way to test for gluten sensitivity is a strict trial of the gluten-free diet. As that WSJ article Lisa posted points out, there is no accurate diagnostic test available right now. What you have to do is rule out celiac by blood and possibly biopsy and then put her on the diet to see how she does.

[TJSpin]

If she has no GI issues at all and her short stature is genetic, I am not sure she has that many symptoms of celiac. The poor tooth enamel can be caused by malabsorption, but it can also be caused by diet (a lot of food kids eat these days is very nutrient-poor and loaded with sugar) or overuse of antibiotics. I think of geographic tongue as a sign of allergies more than celiac, though I could be mistaken. When you get her celiac test, you might want to see if the doctor will test her for deficiencies including calcium, vitamin D, B12, and folic acid. If she has deficiencies you have better evidence for malabsorption.

I listen to Dr. Tom O'Bryan and he states that only 1 in 8 have the gastrointestional symptoms- 1 of 8 have the silent signs. This is theOpen Original Shared Linkfrom the New England Journal of Medicine that got me interested in testing. There seems to be a possible link. Also, I have read that it can be caused by a Vit. B12 deficiency. So, my thought process was that if she had intestional issues, she may not absorb it well enough. Also, I wrote to Cyrex Labs and they thought it was worth testing. Those things were what made me get her tested. I guess I'll have to go with the blood test, then! Thanks for you information, everyone!!!

[Skylark]

Hopefully you'll get your answers. Be sure to prod your Dr. for the vitamin testing so she only has to go through one blood draw.

[TJSpin]

Hopefully you'll get your answers. Be sure to prod your Dr. for the vitamin testing so she only has to go through one blood draw.

Thanks, will do!

[Lori2]

If your daughter has fecal TTG that's more meaningful and she may be celiac.

I had a high TTG reading from Enterolab (86, negative is less than 20) but I do not have either of the celiac genes. So is this anything to be concerned about?

[Skylark]

I had a high TTG reading from Enterolab (86, negative is less than 20) but I do not have either of the celiac genes. So is this anything to be concerned about?

If I had that reading I would be concerned. The evidence for fecal TTG being abnormal in the literature is much more convincing than that for AGA and you are well above the negative reading. Problem is, fecal TTG is not specific for celiac. It can appear in inflammatory bowel diseases like Crohn's and ulcerative colitis.

https://www.celiac.com/articles/870/1/Anti-Tissue-Transglutaminase-tTG-Antibodies-Also-Found-in-Inflammatory-Bowel-Disease/Page1.html

Celiac is absolutely possible without the celiac genes, but Crohn's Disease or UC is statistically more likely. I remember a post from someone who was really angry with Enterolab. She had fecal TTG and went gluten-free but she was still ill. Eventually she was diagnosed correctly with Crohn's. Enterolab hadn't mentioned the possibility to her and she suffered unnecessarily for an extra year.

If you're still having stomach or bowel trouble on a strict gluten-free diet, you need a thorough workup by a good GI doc.

[Lori2]

If you're still having stomach or bowel trouble on a strict gluten-free diet, you need a thorough workup by a good GI doc.

My GI's advice--"Eat what you want and take Imodium".

[Skylark]

My GI's advice--"Eat what you want and take Imodium".

OMG you poor thing. That's awful. You need another GI.

[Lori2]

That test was a year and a half ago. I've been gluten free for the past year. I just sent a second fecal sample to Enterolab to get a current reading and see if there has been any improvement. Diarrhea very much improved gluten free.

[burdee]

Did she have TTG at Enterolab or only anti-gliadin? If she only has anti-gliadin I'm sorry to say it, but she needs the blood draw. The blood test is not as sensitive as one would hope, but it will catch 3 out of 4 cases of celiac so it's well worth doing. Unlike Enterolab, false positives are pretty rare on the blood tests.

If she has no GI issues at all and her short stature is genetic, I am not sure she has that many symptoms of celiac. The poor tooth enamel can be caused by malabsorption, but it can also be caused by diet (a lot of food kids eat these days is very nutrient-poor and loaded with sugar) or overuse of antibiotics. I think of geographic tongue as a sign of allergies more than celiac, though I could be mistaken. When you get her celiac test, you might want to see if the doctor will test her for deficiencies including calcium, vitamin D, B12, and folic acid. If she has deficiencies you have better evidence for malabsorption.

I'm sorry but the only accurate way to test for gluten sensitivity is a strict trial of the gluten-free diet. As that WSJ article Lisa posted points out, there is no accurate diagnostic test available right now. What you have to do is rule out celiac by blood and possibly biopsy and then put her on the diet to see how she does.

I totally agree with trying the gluten free diet. However, some people need more incentive than just feeling better. I actually was on a gluten free diet for 3 months before I took Elab tests. I knew I felt better, but I needed something to convince my doctors. I also did not want to return to excruciating gut pain and bloating by eating gluten to prepare for a blood test.

I didn't have diarrhea (because I also had undiagnosed Hashimoto's thyroiditis which causes constipation) but I was short underweight and had low energy along with many other common celiac symptoms. However, without that diarrhea symptom, my doc and even one naturopath told me I just had 'ibs', because they followed the rigid profile of diarrhea, underweight, short and fatigued, as celiac symptoms. BTW my mainstream doc also ignored my Hashimoto's symptoms (low blood pressure, cold all the time, horrible fingernails, etc.) because I was not overweight (a common sign of hypothyroidism).

My doctors' rigidity made them ignore my symptoms for 2 diseases for many years (since childhood). Maybe that makes me more open to alternative testing methods used by Enterolab, despite lack of support from the traditional medical community (which ignored my celiac and hypothyroid symptoms for 35 years). I may be mistaken, but I didn't want to use testing methods promoted by the traditioal medical community, which misdiagnosed and/or discounted my symptoms all those years.

[Lori2]

If I had that reading I would be concerned. The evidence for fecal TTG being abnormal in the literature is much more convincing than that for AGA and you are well above the negative reading. Problem is, fecal TTG is not specific for celiac. It can appear in inflammatory bowel diseases like Crohn's and ulcerative colitis.

https://www.celiac.com/articles/870/1/Anti-Tissue-Transglutaminase-tTG-Antibodies-Also-Found-in-Inflammatory-Bowel-Disease/Page1.html

Celiac is absolutely possible without the celiac genes, but Crohn's Disease or UC is statistically more likely. I remember a post from someone who was really angry with Enterolab. She had fecal TTG and went gluten-free but she was still ill. Eventually she was diagnosed correctly with Crohn's. Enterolab hadn't mentioned the possibility to her and she suffered unnecessarily for an extra year.

If you're still having stomach or bowel trouble on a strict gluten-free diet, you need a thorough workup by a good GI doc.

This was your reply to my posting about my fecal tTG testing in July, 2010. At that time it was 86 units (negative below 10 units). I just redid the test and the tTG has dropped to 12 units. I have been gluten-free for a year so I think this means I'm making progress. Might this possibly mean that, even though my blood tests were negative, I might actually be celiac?

[Skylark]

This was your reply to my posting about my fecal tTG testing in July, 2010. At that time it was 86 units (negative below 10 units). I just redid the test and the tTG has dropped to 12 units. I have been gluten-free for a year so I think this means I'm making progress. Might this possibly mean that, even though my blood tests were negative, I might actually be celiac?

Boy, that's encouraging! If you're feeling a lot better off gluten and a lot of celiac symptoms resolved I'd sure be thinking in that direction if I were you.