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

Gluten Sensitivity Research?


Ellsabeta

Recommended Posts

Ellsabeta Newbie

Hi Everyone

This is one of my first posts, so I just wanted to throw out a thank you to you all. I have been a lurker for months and find this forum a source of comfort, information and community. It's because of you -- the one's who post, who call the companies, the ones who ask restaurants to cook gluten-free -- that the awareness is growing and making life for the newly diagnosed a bit easier.

Now, on to my question:

I'm seeing my PCP on Friday to go over my thyroid numbers (they're hyperactive). My GI doctor (who doesn't trust Enterolab) found these numbers. I don't want to go through the same thing with my PCP (the disbelief that Enterolab is legitimate/that gluten sensitivity is a real issue) so I was wondering if anyone knows of any hard facts/research about gluten sensitivity?

I know Dr. Fine hasn't published his research on his testing methods, but I'm having a hard time finding anything about "gluten sensitivity." My first GI doctor told me "there's no such thing."

This has been a frustrating journey, but at least I know you all can relate.

By the way, here are the results from my Enterolab test (in case they don't post in my signature -- still trying to figure this out):

Fecal Antigliadin IgA 78 (Normal Range <10)

Fecal Antitissue Transglutaminase IgA 43 Units (Normal Range <10)

Fecal anti-casein (cow's milk) IgA antibody 69 Units (Normal Range <10)

HLA-DQB1 Molecular analysis, Allele 1

Thank you!!!

Liz


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



Celiac.com Sponsor (A8-M):



Queen Serenity Newbie

Hi Liz,

I have to tell you that most PCP's are very under educated when it comes to Celiac's Disease. However, since your test results came back about the thyroid issue, there is no reason for the doctor not to trust the results. My PCP tested me several years ago and found that I had Hypothyroidism. There are a lot of us out there with other related problems linked to Celiac's, remember you are never alone. :) Now, there are several websites that have all kinds of answers that may help you. If you type gluten sensitivity into the google spacebar provided on this site, it will give you several sites that you may find very useful. Be bold, and print out the info for your doc! Never be afraid of educating a physician! I had to do it many years ago, and there was hardly any info out there at the time. I hope that this helps, at least a little. :) Good luck!

Vicki

G.F since Sept. 1995

zarfkitty Explorer

Hi Liz,

Most published studies about gluten pertain to celiac itself or to the neurological effects of gluten sensitivity.

My PCP did take my Enterolab results seriously, but only as one piece of evidence in a larger pattern. I made a very thorough packet for her about my symptoms (both GI and non-GI) and which ones resolved when I stopped eating gluten.

I reassured her that I knew Enterolab was a useful piece of information but not a medically accepted test. To her, dietary response was the more important evidence.

She did mark my chart gluten intolerant and supports me 100% on the Gluten-free Casein-free diet.

Email me off-list if you'd like a copy of the packet I made. You might be able to use it as a template. Good luck!

Ellsabeta Newbie

Hi Vicki and Zarfkitty,

Your replies are extremely helpful.

I plan on printing out each thing I find on gluten sensitivity -- and we'll see how open-minded my PCP is :unsure:

That being said, I'm going to email you zk and use your packet as a template -- that's very, very kind of you!

I'll let you all know how the appointment goes.

Thanks again!

Liz

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. - Scott Adams commented on Scott Adams's article in Additional Concerns
      4

      Going Low-Gluten May Harm Good Gut Bacteria, Researchers Warn

    2. - chrisinpa commented on Scott Adams's article in Additional Concerns
      4

      Going Low-Gluten May Harm Good Gut Bacteria, Researchers Warn

    3. - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

    4. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    5. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,497
    • Most Online (within 30 mins)
      7,748

    sturfninja
    Newest Member
    sturfninja
    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)

  • Upcoming Events

  • Posts

    • Flash1970
      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
    • trents
      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
    • Roses8721
      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
×
×
  • 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.