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. - DebD5 commented on Scott Adams's article in Spring 2026 Issue
      1

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

    2. - Jmartes71 replied to Jmartes71's topic in Doctors
      6

      Second chance

    3. - trents replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Concerning GP advice

    4. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      327

      Terrible Neurological Symptoms

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

    • Total Members
      133,641
    • Most Online (within 30 mins)
      7,748

    JennaK23222
    Newest Member
    JennaK23222
    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

    • Jmartes71
      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? 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.