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I Ordered My Enterolab Test....


JerryK

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JerryK Community Regular

Just want to report that I had a successful rendevous :ph34r: with my Kool Whip container this morning and it looks like success!! Glad that's over...just hope no one gets in the freezer in the garage;)


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Guest Kathy Ann

I'm greatly anticipating Dr. Fine's publishing. I email them now and then and every time they refer to the fact that the main research testing is officially over and that they are now hard at work "writing the interpretation of his most recent research." That sounds mighty close to me. I really think it is forthcoming. It's just a mammoth job to properly present a new discovery like this. Hopefully it will open up a new era of non-invasive gold standard testing, allowing insurances to pay and a lot of questions to be answered! They also have told me that it will be "well worth the wait." I'm excited.

Canadian Karen Community Regular

This thread is bringing back some unpleasant memories for sure!

Try having to collect all your BM specimens in a paint can for 24 hours! Now for most, that won't be too bad at all, but for a celiac with collagenous colitis and who has had nothing but water for BM's for over a decade now and goes 20 - 30 times a day, let me tell ya, near the end of the 24 hours, opening up the paint lid was not a pleasant experience! Also, when the doctor told me what I had to do, the first thing I said to him was "You're only giving me ONE paint can? I'll need two for sure....." He looked extremely doubtful but gave two anyway...... 24 hours later, I dropped off 1 1/2 cans of toxic waste.......

Oh, and this thread has taught me to make sure I don't get into any accidents with UPS brown trucks!!!! I wouldn't want the sh** to hit the fanbelt! ;)

Hugs.

Karen

JerryK Community Regular

I sent my poo to Texas. I hope they find it of satisfactory quality. :blink:

Debra515 Newbie

I want to thank you all for this wonderful thread!

I love to see the debate for Enterolab. I must confess, I'm right there hoping and praying that Dr. Fine will submit his finding very soon. The only road block I see is if the "Mainstream, sorry-I'll call them Traditionalists" decide not to publish his submission.

I think the uncertainty and confusion lies with terminology when it comes to diagnosing "Celiacs" vs. "Non-Celiac gluten sensitivity" which I believe Dr Fine does a much better job at diagnosing earlier. I also really think the Celiac specialists like Dr. Green want to keep the non-celiac gluten sensitive- non DQ2 and DQ8 people out of the picture as to muddy the waters of a true Celiac diagnosis.

Soooo where does that leave all the others who ARE gluten sensitive yet test negative with blood or biopsy or haven't developed a leaky gut and do well on a gluten-free diet? I'm just asking a rhetorical question.

Jerry, I think you should do both tests and hopefully you can educate a few doctors along the way regardless of how inept they are to Celiacs. Did you also order the gene test?

JerryK Community Regular

I ordered the Antigliadin Iga and Antitissue transglutaminase IgA tests. I didn't order gene testing.

You raise a good point about where that leaves us who KNOW we are gluten sensitive. If I test negative..

do I just go on about my business...eating gluten...dealing with the runs and cutting back when it gets too

bad? Do I simply assume all is well because not enough antibodies were found? These are questions I don't know the answer to. I'm hoping I test REALLY high or REALLY low...something in between is going to leave me hanging, wondering what to do next. Mabe a gene test would provide some additional ammo.

Regardless of whatever happens with Enterolab, I promise you that my HMO, Kaiser, will not care! Unless it showed up on the standard IgA blood test, Kaiser will simply label me a hypocondriac. :ph34r:

Jerry

I want to thank you all for this wonderful thread!

I love to see the debate for Enterolab. I must confess, I'm right there hoping and praying that Dr. Fine will submit his finding very soon. The only road block I see is if the "Mainstream, sorry-I'll call them Traditionalists" decide not to publish his submission.

I think the uncertainty and confusion lies with terminology when it comes to diagnosing "Celiacs" vs. "Non-Celiac gluten sensitivity" which I believe Dr Fine does a much better job at diagnosing earlier. I also really think the Celiac specialists like Dr. Green want to keep the non-celiac gluten sensitive- non DQ2 and DQ8 people out of the picture as to muddy the waters of a true Celiac diagnosis.

Soooo where does that leave all the others who ARE gluten sensitive yet test negative with blood or biopsy or haven't developed a leaky gut and do well on a gluten-free diet? I'm just asking a rhetorical question.

Jerry, I think you should do both tests and hopefully you can educate a few doctors along the way regardless of how inept they are to Celiacs. Did you also order the gene test?

CarlaB Enthusiast

Jerry, if you test were to come out low, which it won't, then I would keep looking for what's really wrong!! I didn't get completely well gluten-free, though it certainly is PART of my puzzle. I kept looking and ends up I am not a hypochondriac and do not have a psychosomatic illness as my doctor told me I did, I have Lyme Disease. I encourage everyone to keep looking till they find the answer!!! Took me 30 years to find out what's wrong.


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jerseyangel Proficient

Jerry--

Glad that part is behind you. Keep us posted--can't wait to hear your results :)

Nancym Enthusiast
I ordered the Antigliadin Iga and Antitissue transglutaminase IgA tests. I didn't order gene testing.

You raise a good point about where that leaves us who KNOW we are gluten sensitive. If I test negative..

do I just go on about my business...eating gluten...dealing with the runs and cutting back when it gets too

bad? Do I simply assume all is well because not enough antibodies were found? These are questions I don't know the answer to. I'm hoping I test REALLY high or REALLY low...something in between is going to leave me hanging, wondering what to do next. Mabe a gene test would provide some additional ammo.

Regardless of whatever happens with Enterolab, I promise you that my HMO, Kaiser, will not care! Unless it showed up on the standard IgA blood test, Kaiser will simply label me a hypocondriac. :ph34r:

Jerry

You had positive results on the gluten-free diet, right? Even Dr. Fine says some people that test negative will still have positive results from a gluten-free diet.

Its kind of the "Doctor, it hurts when I do this!" old joke. The doctor always responds: "Well stop doing that!" We pay these guys that kind of money to tell us what should probably be obvious to us.. :P Although nowadays the doctors seem to be telling us to go ahead and hurt ourselves because the blood test doesn't show anything. Geez, you send them to school and this is what they learn?

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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