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

Terms- Need Help


Warrior Woman

Recommended Posts

Warrior Woman Rookie

What does non-celiac gluten sensitivity mean?

How is it different from celiac?

I am confused and need to know

TIA

Lorraine


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



Celiac.com Sponsor (A8-M):



gfp Enthusiast
What does non-celiac gluten sensitivity mean?

How is it different from celiac?

I am confused and need to know

TIA

Lorraine

You are not the only one confused....

It all hinges on the definition of celaics disease.

Prior ro the 50's celaics was non specific and basically referred to people who were ill when they ate wheat, barley, rye etc.

Then they invented a new endoscope that wnet into the intestine and they saw damaged villi and decided that was the cause.

Today many researchers see many symptoms of people who react in different ways to gluten but depending where you are and who you ask this is either celaic disease or not. Ask a enterologist and they will likely say it is damaged villi, ask a neurologist and they will have a different answer.

I have a page I made about this which summarises my thoughts....but I can't post it directly because it would break board rules ..

Sunday, 12 March 2006

Coeliacs disease was first diagnosed by Galen a Roman physcian to the emperors in 2AD or his contempory Aretaeus of Cappadocia.

Exactly what is it and what is accepted or not as coeliacs disease is rather dependent where you live.

Galen 131-201AD

Image

Many commercial interests seek to control what is and what is not considered coeliacs disease but the most inclusive and simple defintion remains that of Galen. which is an intollerance to eating wheat, barley or rye.

Francis Adams translated the presenved works of Aretaeus and reprinted them for the Sydenham Society in 1856. The original Greek Text of the sections on "The Coeliac Affection" suggests that Aretaeus may possibly have understood a remarkable amount about the coeliac condition or to put it another way we don't know much more now.

From the writings of Dr James S. Steward, Consultant Physician, West Middlesex University Hospital, Isleworth, Middlesex.

"After the 1939-45 war came a fundamental discovery which proved to be the main advance in the treatment of coeliac children and adults alike. This discovery was made and described in detail by a Dutch paediatrician, Professor Dicke, in his doctoral thesis for the University of Utrecht in 1950. He showed how coeliac children benefited dramatically when wheat, rye and oats flour were excluded from the diet. As soon as these were replaced by wheat starch, maize flour, maize starch or rice flour the children's appetite returned and their absorption of fat improved so that the fatty diarrhoea disappeared."

The next step was the isolation of various parts of wheat and identification of one of its two main proteins (gluten) as the culprit.

This is where things start to get confused.

" The original observation which, together with Processor Dicke's discovery, led to our present understanding of the nature of the coeliac condition was made by Dr. J. W. Paulley, a physician in Ipswich, and reported to the British Society of Gastroenology in Birmingham in the same year as Professor Dicke's discovery. Dr. Paulley described an abnormality of the lining of the small intestine found at the operation in an adult coeliac patient. This abnormality consisted of an inflammation, the exact nature of which is still being investigated.

The existence of this inflammatory change was confirmed in several patients by Dr. Paulley and was then found by many doctors in this country, the United States and elsewhere to be the most essential single feature on which the diagnosis of the coeliac condition could be based. Its importance to the patient is that it results in a loss of the microscopic projections or villi which are partly responsible for providing the lining membrane of the small intestine with a large surface area. It is from this mucous membrane lining that the absorption of food into the bloodstream takes place." Fig 1 Healthy ViliImage

From this point on research and diagnosis of coeliac disease focused largely on the intestine and the degradation of the villi which line it. The invention of the gastric biopsy and subsequent modification for the intestine provided a easily measurable metric. The destruction of the villi can be clearly seen in the photomicrographs opposite. However According to netdoctor.co.uk "Half of adults with coeliac disease do not have any symptoms from the bowel." Other common symptoms include depression and damage to the nervous system. Ultimately several other autoimmune diseases are also linked with coeliac disease. The focus on the villi has caused a certain neglect of other areas and most of those who do have recognisable damage to the villi also suffer other symptoms. The common digestive symptoms are summarised below.

Common (classic) disgestive related symptoms

* Anaemia (iron deficiency)

* Bloating and flatulence

* Diarrhoea and/or constipation

* Fatigue, weakness and lethargy

* Nausea and vomiting

* Stomach cramps

* Weight loss

Fig 2 Villi being destroyed Image

However a large percentage of people who react to the protein in wheat, barley and rye also suffer wide ranging autoimmune and neurological problems.

Ataxia is caused by damage to the nervous system. It manifests itself as poor muscle coordination or earlier loss of feeling usually beginning in extremeties.

Depression is also well documented but another difficult to measure property.

A good summary is available here:Open Original Shared Link

In the end the distinction is actually quite simple: The difference between an alergy and an intollerance is defined by the type of anti-bodies produced. An allergy is defined as IgE antobodies being produced by the body. In coeliac disease specific anti gluten IgA and IgG antobodies are produced.

The interested reader is directed to this article on antibody types Open Original Shared Link

Fig 3. Villi completely dissapearedImage

In the end not every biopsy diagnosed coeliac has symptoms they have recognised, many are diagnosed after relatives are diagnosed for instance. Equally many coelaics who suffer neurological or other symptoms do not have the classic damaged villi. Ultimately under a strict Gluten Free diet most coeliacs will repair the damage to the villi but still remain susceptible to further damage by eating gluten.

Last Updated ( Thursday, 27 April 2006 )

Sorry, the photo's and formatting get lost when I cut/paste.

In the end I see no reason for us the sufferers to argue over who is celaic, who is non-celiac gluten sensitivite etc. because we are all in the same boat with our requirements which is to avoid gluten

hope that helps but since the Dr's are confused its only natural we should be!

elye Community Regular

Yeah, my understanding is that non-celiac gluten sensitivity is an inability to digest gluten that manifests itself in ways other than intestinal damage.

evie Rookie
;) very good url!! keep up the good work!! evie
Warrior Woman Rookie

Thanks for the links-

They were very helpful

gfp- that is a great page. I love the history!

gfp Enthusiast
Thanks for the links-

They were very helpful

gfp- that is a great page. I love the history!

Thanks both of you....

edits: Sorry rest is cut to comply with board rules

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. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    2. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Airborne Gluten?

    3. - Kirita posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Recovery from gluten challenge

    4. - annamarie6655 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,241
    • Most Online (within 30 mins)
      7,748

    Martha Kaczmarek
    Newest Member
    Martha Kaczmarek
    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

    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
    • Kirita
      I’m wondering if anyone has had any experience with the gluten challenge. My teenager completed a gluten challenge over the summer, it ended up being 10 weeks although she stopped being consistent eating gluten after 6. Her previous endoscopy was negative but this past August it was positive after the gluten challenge. If you have done the gluten challenge, how long did it take you to feel back to normal? It took about two months before she got “glutened” again but now she’s having difficult coming back from that and has a lot of fatigue. I’m hoping someone has some advice! 
    • annamarie6655
      Hello everyone, I was on here a few months ago trying to figure out if I was reacting to something other than gluten, to which a very helpful response was that it could be xanthin or guar gum.    Since then, I have eaten items with both of those ingredients in it and I have not reacted to it, so my mystery reaction to the Digiorno pizza remains.    HOWEVER, I realized something recently- the last time I got glutened and the most recent time I got glutened, I truly never ate anything with gluten in it. But i did breathe it in.    The first time was a feed barrel for my uncle’s chickens- all of the dust came right up, and most of what was in there was wheat/grains. The second time was after opening a pet food bag and accidentally getting a huge whiff of it.    When this happens, I tend to have more neurological symptoms- specifically involuntary muscle spasms/jerks everywhere. It also seems to cause migraines and anxiety as well. Sometimes, with more airborne exposure, I get GI symptoms, but not every time.    My doctor says he’s never heard of it being an airborne problem, but also said he isn’t well versed in celiac specifics. I don’t have the money for a personal dietician, so I’m doing the best I can.    is there anyone else who has experienced this, or gets similar neurological symptoms? 
×
×
  • 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.