Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Response From Enterolab


alanalynch

Recommended Posts

alanalynch Rookie

I emailed the thread 'wary of Dr Fine' Phyliss at Enterolab as she has always been interested in what people have had to say. I thought all those involved in that thread might be interested in her response.

Dear Alana,

Thank you so much for this information. I read it from top to bottom.

Though I would love to provide my own response to many questions on

that

message board, I feel it would be unethical of me to do so (kind of

like

ambulance chasing).

However, if you are supportive of Dr. Fine's research and testing

methods

and would like to direct visitors of that message board to my email

address

with questions, I would be more than happy to answer them. My direct

email

is <enterolab@earthlink.net>. This is the same address that is accessed

from our web site. You may even give out our phone number if you wish,

which is 972-686-6869.

Incidentally, Dr. Fine is extremely spiritual in every aspect of his

life.

He began singing in his synagogue when he was younger, then directed

his

musical talents to uplifting messages of hope and thanks in his two

previous CDs (hence, the Kenny Jude name). More recently, he has

recorded 3

new CDs to help launch a new program called "Get On a Mission of

Nutrition"

aimed at improving nutrition and the overall health in children.

Because of

this and other ventures to further improve society's health, he has not

written for the peer review journals until now. He plans on publishing

EnteroLab's findings early in 2006, which will be a wonderful

accomplishment.

Since I came to the lab full time, after leaving a good position as the

RN

to a certified allergist/immunologist at Baylor, I have increased the

accessibility of the lab to patients and physicians both by phone and

email. Because we are operating under the umbrella of the Intestinal

Health

Institute, a non profit organization for Dr. Fine's research and

education,

we try to keep our operating costs down and do not have a large staff.

We

do work hard, however, to answer all the calls we can and return

messages

as soon as possible. Also, many people do not know that EnteroLab's

proceeds are donated back to the Intestinal Health Institute to help

fund

more research, education, and programs. We are definitely not in it for

the

money!

I'm sorry if this sounds like a lecture, but we are all very proud of

Dr.

Fine's work and the work that EnteroLab does for patients who have been

searching for answers for years only to be ignored by their physicians.

We

pray that more physicians will soon see the value and practicality of

EnteroLab's tests so that more people can be helped earlier in the

manifestation of the disease process.

Thank you, again, for providing me with this information. Please let me

know if I can be of any further assistance to you.

Most sincerely,

Phyllis Zermeno, RN, BSN

Clinical Manager, EnteroLab

Open Original Shared Link


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

Thanks for sharing that. :)

What a great idea to email that thread to her...now I've learned some things about Enterolab and Dr. Fine that I wasnt aware of before. All good stuff. :)

Bette Explorer

Can you guys post a link to the thread "Wary of Dr Fine". I am so confused at this point, and was considering doing some of his test.But concerned, since A) my insurance will not cover it and B) his work is controversial.

I have been gluten-free now going on 6 months. Not officially diagnosed, only had some elevated antigliadin antibodies, but decided to go gluten free since my daughters diagnoses. She is 11 and has been gluten free since July. GI symptoms have improved dramaticaly for her, but she still has sinus and chronic tonsilitis issues. Some of her other symptoms have disappeared (yeah) I am beginning to question if there is another problem (namely dairy).

I am torn between just removing dairy 100 percent and see how she does (makes sense to me), but I had to fight tooth and nail to get her the proper diagnoses regarding gluten, put her through biopsy and all- not because I wanted to but because of an uncooperative ex who would not go along with a trial of gluten free diet unless the doctors said it was necessary. Now same with removing dairy, it will be a challenge to get him to help with that one too!!!

And as far as I go, I got good results intitialy, but at the 6 month mark, I am really struggling. Is it too late to get a diagnoses from Dr. Fine? I refuse to go back on gluten.Will his test help you to pin a problem with Dairy? Casein intolerance? Lactose intolerance? The more I have read up on intolerances, the more confusing it seems, and there seems to be misunderstandings among the doctors themselves. I also thought about York Labs, but from talking to another person from another message board, her advice was no. She had a bad experience and considered them very unproffesional. :huh:

Rachel--24 Collaborator

Here's the link :)

Open Original Shared Link

alanalynch Rookie
. Is it too late to get a diagnoses from Dr. Fine?

<{POST_SNAPBACK}>

If you access the Enterolab website you will see that 6 months gluten-free is definately not too late to test for intolerance. In regards to the controversy of using Enterolab, the post I put on today mentions their position on the previous 'wary' thread.

Personally I think Dr. Fine is a pioneer in gluten intolerance, and as all the medical pioneers before him experienced he is going to encounter resistance to his ideas. I believe he gives accurate results, (I was diagnosed with gluten intolerance before I went through Enterolab and his results certainly gave me a whole lot more info than my regular doctor). Dr. Fines tests also showed that I have a reaction to casein, which in my case turns out to be quite important because I sometimes feel worse after ingesting casein than gluten!

But its a personal choice as to how much testing you need in order to feel okay about not eating gluten anymore. My sister has Crohns (and almost undoubtledly Celiacs), yet she tells her doctors not to test for Celiacs because she just couldn't stand to eat food without gluten. Thats her choice. I choose, or at least I'm trying, to be gluten free and healthy again. So doctor or no doctor I say, do whatever makes you feel better!! :)

Guest barbara3675

Remember that if you decide to go with Enterolab, you can have some gene testing done and that will give you more clues to your situation. My granddaughter has celiac disease and her dear mother suggested that I get tested. The doctor came up with negatives so I decided to go with Enterolab and they came up with postives for gluten intolerance and I also have the gene. I also tested casein intolerant, however after some time, that went away as it often does when the healing process is complete. I just feel so much better (no tummy pains or diarreah) so I know I am on the right track. This was all found out at the age of 59 so you just never know when it will come about.

Barbara

skbird Contributor

My two cents - I think Enterolab is great for what they are doing. But I got tested at 5 months and was just under the normal cutoff (9, when 10 is positive). When corresponding with Phyllis and Dr. Fine, they both inferred I was likely over the normal limit before going gluten-free, but who knows? Anyway, it is possible your levels will have gone down by 6 months. Then again I think I read here about someone who tested over a year after gluten-free and was still positive so who knows?

Stephanie


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    2. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

    4. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

    5. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,139
    • Most Online (within 30 mins)
      7,748

    kathleen apodaca
    Newest Member
    kathleen apodaca
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.