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GlutenWrangler

Enterolab

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Hey Everyone,

I was just wondering if you think positive Enterolab results count as an official diagnosis. Those of us diagnosed through Enterolab can't really say that our doctor diagnosed us. Just wondering what you think. Thanks,

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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Well, Brian, this is the way I look at it:

Our doctors for the most part are pretty clueless. Dr. Fine is a doctor. If you go through Enterolab, and get diagnosed by them, you DID get diagnosed by a doctor! Maybe not your family doctor, but a fabulous doctor nevertheless.

So, yes, I definitely believe that everybody who got diagnosed by Enterolab has an official diagnosis.

Just wait a few years, I bet that it won't be very long, and stool testing will be considered the 'gold standard' of testing, rather than the biopsy. I am looking forward to that day.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Enterolab IS known and mentioned by some very reputable celiac researchers and experts. Unfortunately, Dr. Fine has not yet collected all the data needed to present for peer review. Since so many doctors barely know anything at all about celiac disease/gluten sensitivity, it's not surprising they know nothing about new methods of testing. My own doctor had to be told BY ME what blood tests to request.

Dr. Fine is a DOCTOR who has specialized in celiac research and testing. He is probably more knowledgeable than 99% of the doctors out there, most of whom know little or nothing about celiac disease.

It's hard for some people to break with the notion that THEIR OWN personal doctor must put a stamp of approval on whether or not you have or don't have celiac disease. We must all use our intelligence with this, and unfortunately, we have to take a lot of the initiative for testing and diagnosis upon ourselves. What Dr. Fine offers is most definitely NOT junk science. Unfortunately, the medical community at large is painfully SLOW to accept new ideas and new knowledge. The wheels of change turn very very slowly. People can and do die before new treatments reach mainstream knowledge.

We are all lucky that the internet and easy of getting information exists for us.....when my mom got severely ill with celiac disease over 40 years ago, she was truly alone in a wilderness of ignorance....a time when doctor after doctor told her that her symptoms were all in her head, psychologically induced. If she had not encountered a rare doctor who just happened to have knowledge and experience with celiac disease, she most definitely would have died.

Hey Everyone,

I was just wondering if you think positive Enterolab results count as an official diagnosis. Those of us diagnosed through Enterolab can't really say that our doctor diagnosed us. Just wondering what you think. Thanks,

-Brian


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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Dr. Fine IS a doctor. I would absolutely trust his diagnosis 100%.


~Angie~

Gluten free since May 2004

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We had low numbers through enterolab but I still consider our family celiac as well all have at least one gene. Whether celiac or gluten intolerance, gluten is still evil to our bodies and being diagnosed before we get real sick (in some people's cases) is a blessing that Dr. Fine offers.

I consider his diagnosis official and I too can't wait until he publishes his work.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Don't get me wrong, I absolutely trust my results. Dr. Fine helps so many people who had essentially given up on finding a diagnosis. If I didn't happen upon Enterolab I would probably be hooked up to a feeding tube by now. As much as I believe in Enterolab, doctors generally don't, so it is hard to say "I was diagnosed with celiac disease through a lab in Dallas Texas to which I have never been". But I hope the day when stool testing becomes the gold standard comes soon. So many more people could benefit from it.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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i personally havent researched up on enterolab, but was diagnosed by blood test. my family entered into a celiac study, i cant remeber what it was called but they test everyone in the family with or without celiac and also do the gene test, some of you guys are probably familiar with this, they are somewhere in california i think but i could be wrong. my mom had a conversation with them and they said they did not accept anyone who had been diagnosed by enterolab. there are no other doctors who have, how do u put it, use it or something. Dr. fine or whatever his name is the only doctor who does that sort of testing, well so far. i'm not saying its wrong, but that is what they told me

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Nancy,

It isn't always necessary to go into detail, but a lot of the time when I have told my doctors I have something, they want to know who the doctor is that diagnosed me. If I say "I have celiac disease", my doctor will say, "oh who is treating you for it". That's all I mean.

Kassie,

A lot of doctors dismiss Enterolab because they don't use blood testing or a biopsy (the "gold standard"). Medicine and technology changes with time so that now we don't need to have a camera stuck down our throats and a piece of our intestine snipped out to diagnose celiac disease/gluten intolerance. I don't think any of the people who have been helped by Enterolab would pay any attention to the doctors out there who dismiss it. Also, regular methods cannot test for gluten sensitivity. They are only able to test for full blown celiac disease. If someone with non-celiac gluten sensitivity has a blood test and a biopsy, they will most likely come up negative. The doctor dismisses gluten intolerance all together, and the patient suffers. I think the one thing many of us here can agree on is that for the most part, doctors are worthless when it comes to celiac disease and gluten sensitivity. If they were more competent, it wouldn't take people so long (an average of 11 years) to be diagnosed. But however you are diagnosed, it is always nice to finally know what is wrong with you.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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Yeah, its up to you to decide whether or not you want to share the information with your doctors. I did and brought them the enterolab results and they accepted it. I was surprised actually. They could have easily pooh-poohed them.

Your doctor probably has nothing to contribute to your ability to manage this issue. So whether or not they know or approve is most likely irrelevant.

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Yeah you're right. My doctor probably couldn't contibute anything to help me manage. Even if he did give me some advice I would come here to check with everyone.


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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