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From:
Kathleen Curet <[log in to unmask]>
Reply To:
Kathleen Curet <[log in to unmask]>
Date:
Fri, 12 Jul 2002 09:54:34 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

Hi everyone -

Its taken me a while to get this summary together...summer company and craziness and over 100 responses for which I'm very greatful and have digested a huge amount of gf info:)    I tried to be as brief as possible, but I received about 80 responses and there was such a response about Dr. Fine/EnteroLab, I thought I should include that info since so many are wondering...  Thanks so much for all the help, support, suggestions.  I have no personal interest/connection in or with EnteroLab, just heard about them on the list and tried them.  From all I read we've decided to do some blood tests on myself and husband with Prometheus...mostly so there's no doubt in my husband's mind that we've dug into this querry in an appropriate/reasonable manner and to encourage through our results the rest of the family who are very symptomatic, that CD is real and present in the family and potentially devastating.  I guess you could say that I'm using us as a test project and hope to dispell doubt.  Until then (only 3 days till blood draw) we're gearing up for gf eating, I've already made lots of gf dinners (but am still consuming plenty of gluten).  It can seem overwhelming, but with all the help here, its manageable!  Hope this is of help to many.

Thanks - Kate in Salmon, ID

12 responses said just go gf, forego the biopsies/more testing, see what happens to symptoms when gf.

3 said don't mess with self-diagnosis - get to a proper GI asap

2 suggested getting self and hubby biopsied; spare the kids.

2 suggested contacting Dr. Fasano, UofMd research, some suggested getting gene tested for self and spouse to dispell any doubt.

1 said Entero test were pos. for IgA, blood tests negative, went GF anyway and health was restored.

The rest responded with either support/sympathy/encouragement/offers of recipes.  The responses specifically about EnteroLab are summarized below.

Response from Dr. Fine to my question:  If your blood IgA is already high, then your stool IgA will definitely be positive and even higher because IgA is the intestinal antibody secreted into the intestine and excreted into stool.  These are not borderline results and high fecal fats mean there is already have intestinal damage and dysfunction. Blood tests are not more sensitive than intestinal/ stool IgA testing. This has been researched for decades.  Doctors in practice do not read research articles and they just would not know. Our test is really no different than the results of IgA testing you received from Prometheus. In fact Prometheus is looking into using my lab for our testing. There are two ways to confirm your family's results. Do the gene tests and go gluten free and get well!  Why would you wait? Most people fear dietary changes. This is normal.

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Entero Lab - good results I had read about Dr.Fine on this list and gave it a try. (Before the CD dx we had done an elimination diet to try to find out what was responsible for symptoms -had identified soy, egg yolk, corn and lactose.) when Enterolab tests showed intolerance of soy, egg, dairy and yeast, all made sense.  After totally eliminating all these things, saw marked improvement and daughter has gotten her life back. The good thing about his tests are finding out about other culprits that can cause symptoms and prevent healing.

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My test from Dr. Fine was positive. My biopsy was negative, so I was diagnosed with IBS.  However, I was tired of diarrhea, so I tried going completely GF, and inside of two weeks saw improvement and was a new woman by two months.

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Many people will respond, probably many who don't believe in Dr. Fine's methods, however, my sister and her two daughters got tested by Dr.
Fine, and one niece has CD and my sister and other niece have the genetic predisposition for CD although not active at this point.  I happen to
believe that he has the best methods of testing. Non invasive is always the best in my opinion.

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Well... welcome to the club. My brother and I were both diagnosed by Dr. Fine too. There aren't really any more tests needed. Sure, you could
go have a biopsy, but why? You already have your answer.

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We had the genetic tests done. My wife got it from her mom and dad.  Our 2 kids couldn't help but get it; at least the genes for it. My daughter had the fecal tests (she had wet stools).  Hers came back positive for Fecal Antigliadin IgA, positive for fecal Endomesial IgA antibodies, negative for Fecal Fat, and positive for Fecal Anti-casein IgA. Regarding more testing: our family has decided against further testing by invasive techniques because the science of Gastroenterology with regard to nutrition is in its infancy.  As a result you will pay Doctors lots of money and they will pretend to be smart and know lots of things, but they don't.
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I was tested by Dr. Fine and came up positive for both gluten and casein antibodies. MANY of us wonder if ANYONE tests negative with his method.  It would certainly be amazing if all 6 of you were positive. I did it for 2 reasons:  1.husband was diagnosed the blood and biopsy
way 2.5 years ago.  Seems once I also went GF I felt better, and when I ate out, I didn't feel well. 2.seems like almost everyone comes up positive on Dr. Fine's tests, I decided to use myself as a guinea pig. I am currently on a gluten challenge and have a biopsy scheduled in a few weeks.  If not for Dr. Fines results however, I never would have gotten the army hospital here to even look at me for celiac.  After this, I will do a separate dairy challenge  Most medical professionals, including those I spoke with at the GIG celiac conference last month in Winston-Salem doubt Dr. Fine's methods. We'll see. As to your family, I would go 100% gluten free for at least 3 months and assess how everyone feels.
Biopsy or not, the way you feel tells all.

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We have a family of 7 and did use Entro-lab with my son and myself just for the gene test. He has the main gene for Celiac and I had 2 copies for gluten sensitivity. We had Promethus test on 4 of us . One daughter was positive for Celiac.(She has had symptoms for 4 years). The rest came out negative. One child has a diagnosis of Aspergers but his test was negative. He had many symptoms when he was younger and I could not get a doctor to test him when he was younger. (We had a niece with the same symptoms and she almost died before they found out she
had Celiac) To make a long story short....We are all on the diet and have seen amazing results.

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i also had the Dr. Fine tests, was fecal positive for celiac.  My dr gave me biopsy, which showed some damage, but not severe...felt better after I had biopsy - also did blood testing which showed I had it. Maybe try gene testing, too.

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I'd be thankful to have Dr. Fine's tests available and that he was able to diagnose all of you, instead of messing around with the the normal and inaccurate testing procedures and episodes with the other gastroenterologists, who really don't know what they are doing.

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Yes all of you can be positive and Dr. Fine's test is enough.  My GI here in Austin uses Dr. Fine's test. My doctor told me that his bet was Celiac disease as the cause of my miserable symptoms.  He gave me the forms for Dr. Fine's tests.  I was positive and I did discuss further testing with him and he accepts Dr. Fine's results and DOES NOT DO A BIOPSY.  As a nurse-patient, I agree with him.  I am all for a non-invasive procedure in preference to endoscopy for diagnosis.  Endoscopy is still in the literature as the "gold standard" for diagnosis, BUT biopsy results are not always positive in the presence of CD.

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We ordered the tests for gluten and casein sensitivities, malabsorption, and genetics. We also were all positive for antigliadin IgA.  Our genetic testing indicated I have the "main" marker for CD (HLA-DQ2), husband and daughter have a less common one, and our son has a marker for gluten intolerance. It is a little mystifying, that the whole family would test positive...but I know that the results of my testing are accurate with my experience.
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In the "old days" the FINAL word on celiac was -- do you get better going GF. IF you do, then that is absolute confirmation. But the tests are good, if they are positive -- they can give false negatives, not false postives. I did use Enterolab too, and I think they are great.

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I really am not suprirsed that you got this result.  I know that someone else posted something similar a month or two ago regarding Fine's test, and an abundance of positive results in one family.

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my son used enterolabs. so happy it was conclusive that he and daughter have the gene. he went for a biopsy and it said he had gastritis, so he didn't have his daughter have one.What's the sense?
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I can understand your shock.  I have sat and talked one on one with Kenneth Fine, and he seems to me to be the authentic, sincere person who knows what he is doing.
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