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

I Ordered My Enterolab Test....


JerryK

Recommended Posts

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;)


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



Celiac.com Sponsor (A8-M):



  • Replies 58
  • Created
  • Last Reply
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.


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



Celiac.com Sponsor (A8-M):



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?

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. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    2. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    3. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    4. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

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

    • Total Members
      133,340
    • Most Online (within 30 mins)
      7,748

    Abbyyoung417
    Newest Member
    Abbyyoung417
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
×
×
  • 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.