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

Doc Tomorrow - Which Tests To Request?


Chirpy

Recommended Posts

mushroom Proficient

Chirpy, sometimes people use the terms gluten intolerance and celiac disease interchangeably. While celiac is a disease caused by gluten intolelrance, there are very specific tests and requirements in order to be diagnosed specifically with celiac disease. These include a positive blood test, and visual damage to the small intestine, sometimes to the naked eye through the endoscope and sometimes only by microscopic examination of the biopsy samples. If you have neither of these findings (and most doctors won't do the endoscopy if you have negative blood work, then by definition you do not have what is called celiac disease. That is why they have the ranges on the blood tests; many people will have some antibodies, but you have to reach more than 10 (or 20) in the sample ranges you gave to be labelled celiac.

So that is where the gluten intolerance comes in. If you have all the same symptoms as those who have celiac disease, but do not test positive for it, then you most probably have non-celiac gluten intolerance, which is just is real and causes the same kinds of problems as celiac disease and needs to be also treated with a gluten free diet. It is just that it is always a much neater package if you can tie it up with string and say, yep, this is celiac disease, rather than the somewhat fuzzy gluten intolerance. And many doctors do not acknowledge gluten intolerance as a condition. They are the less well informed :P

I hope this clarifies it a little for you. Keep asking questions about what you don't understand.


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



Celiac.com Sponsor (A8-M):



Chirpy Newbie

Thanks for the additional info, Mushroom.

I just wish I could feel more certain about it. With my lactose intolerance problem, it can't be measured with a test.

I'm going to have to really think this all over carefully and keep reading.

mushroom Proficient

Thanks for the additional info, Mushroom.

I just wish I could feel more certain about it. With my lactose intolerance problem, it can't be measured with a test.

I'm going to have to really think this all over carefully and keep reading.

Well, the lactose intolerance, if it is reasonably recent (i.e., not lifetime) is a sign that your villi in the small intestine have been damaged because the enzyme that digests lactose is produced at the tips of the villi which are the parts that are damaged first. I was lactose intolerant for years before I recognized I was gluten intolerant. And no, I never bothered with any testing because I was not going to eat gluten anyway. You are sounding like the doctors :lol: - if it can't be measured with one of their tests it doesn't exist - NOT!! Gluten intolerance is very real and most of us find we are able to live within that gray area of knowing something that we can't prove.

One thing you could do would be to order the Enteriab stool/saliva testing online. This will measure IGA, casein and soy intolerances, give you a fecal fat score as a measure of how well your digestive system is working, and test for genetic markers for celiac and gluten intolerance. It will not, however, tell you whether or not you have either :(

Skylark Collaborator

Ugh. Your doctor story is so familiar. I finally found a good osteopath who listens to me and doesn't do stupid stuff.

The tests are good news. It means you do not have celiac issues with your intestine that are severe enough for the antibodies to make it to your blood.

You mentioned giving the gluten free diet a try. I'd still encourage you to do so, especially with an itchy rash that looks like dermatitis herpetiformis. If the rash goes away in a few weeks, you have your answer and you will be SO much more comfortable. The canker sores will also go away if they're caused by gluten. I can bite the inside of my mouth now and I don't get a canker sore there. It's like magic. If I get glutened, they come right back.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,933
    • Most Online (within 30 mins)
      7,748

    Kazwal
    Newest Member
    Kazwal
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      The discovery of the vitamin D receptor in multiple immune cell lineages, such as monocytes, dendritic cells, and activated T cells credits vitamin D with a novel role in modulating immunological functions and its subsequent role in the development or prevention of autoimmune diseases.  The Implication of Vitamin D and Autoimmunity: a Comprehensive Review
    • Wheatwacked
      Definitely get vitamin D 25(OH)D.  Celiac Disease causes vitamin D deficiency and one of the functions of vitamin D is modulating the genes.  While we can survive with low vitamin D as an adaptation to living in a seasonal environment, the homeostasis is 200 nmol/L.  Vitamin D Receptors are found in nearly every cell with a nucleus,while the highest concentrations are in tissues like the intestine, kidney, parathyroid, and bone.  A cellular communication system, if you will. The vitamin D receptor: contemporary genomic approaches reveal new basic and translational insights  Possible Root Causes of Histamine Intolerance. "Low levels of certain nutrients like copper, Vitamins A, B6, and C can lead to histamine build up along with excess or deficient levels of iron. Iodine also plays a crucial role in histamine regulation."  
    • AnnaNZ
      I forgot to mention my suspicion of the high amount of glyphosate allowed to be used on wheat in USA and NZ and Australia. My weight was 69kg mid-2023, I went down to 60kg in March 2024 and now hover around 63kg (just after winter here in NZ) - wheat-free and very low alcohol consumption.
    • AnnaNZ
      Hi Jess Thanks so much for your response and apologies for the long delay in answering. I think I must have been waiting for something to happen before I replied and unfortunately it fell off the radar... I have had an upper endoscopy and colonoscopy in the meantime (which revealed 'minor' issues only). Yes I do think histamine intolerance is one of the problems. I have been lowering my histamine intake and feeling a lot better. And I do think it is the liver which is giving the pain. I am currently taking zinc (I have had three low zinc tests now), magnesium, B complex, vitamin E and a calcium/Vitamin C mix. I consciously think about getting vitamin D outside. (Maybe I should have my vitamin D re-tested now...) I am still 100% gluten-free. My current thoughts on the cause of the problems is some, if not all, of the following: Genetically low zinc uptake, lack of vitamin D, wine drinking (alcohol/sulphites), covid, immune depletion, gastroparesis, dysbiosis, leaky gut, inability to process certain foods I am so much better than late 2023 so feel very positive 🙂    
    • lehum
      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
×
×
  • 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.