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

Group Letter 2 To Dr. Fine


glutenmaestro

Recommended Posts

glutenmaestro Rookie

So many forum members discuss Dr. Kenneth Fine's EnteroLab on a daily, weekly or monthly basis and a significant percentage have pursued gluten/food sensitivity faecal IgA testing.

 

Approximately five (5) years ago, members of this forum discussed writing a Group Letter to Dr. Fine

 

Let me just say that I really admire Dr. Kenneth Fine and his work as a musician and public health educator. I am actually listening to his First DeKade album as I write this.  :lol:

 

I do have some concerns, however, about his EnteroLab service and would like some answers since his last response. After all, since it has been half a decade since the previous response, a lot may have changed and I feel that we should perhaps consider a second group letter to Dr. Fine just to see where they are at and politely voice our concerns and ask any questions that we may have.

 

Who's with me?  :)


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



Celiac.com Sponsor (A8-M):



LauraTX Rising Star

I looked on their website after reading this... I haven't really looked into his stuff too heavily as I was already diagnosed when I heard about his offerings.  They have a fairly detailed FAQ and I don't have any questions unanswered after reading that.  I still hold the same opinion of it that I did before reading it.  I don't want to turn this thread into a debate about that, though.

 

What specific concerns do you have?  I would think that, being a smaller place where you can actually reach people via phone and email, you may get great success in just writing your own letter and letting them know you want to share it with the forum here. 

glutenmaestro Rookie

Thanks Laura. I might do that, however the concerns I have relate to a number of experiences that members of my family have had. Things like cancer, lyme disease, viral infections, IBS, IBD (e.g. Crohns), and a high FODMAP diet for those with fructose/sorbitol/raffinose malabsorption could be causing elevated faecal antibodies (i.e. false positives). A gluten free diet may not actually benefit the patient if the antibodies to gluten/casein/soy/etc. are simply elevated to another medically recognised condition.

 

I just thought people on the board might want to do a 5 year follow up letter from the last one. I'll try writing something and see if any of you would like to add anything. How about that? :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,602
    • Most Online (within 30 mins)
      7,748

    Victor bowden
    Newest Member
    Victor bowden
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
×
×
  • 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.