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. - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Reverse Osmosis (RO) Water

    2. - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

    3. - Scott Adams replied to Yaya's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Great Value Veggies cannot be trusted.

    4. - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Confused about HLA-DQ Celiac gene test result

    5. - ainsleydale1700 replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Confused about HLA-DQ Celiac gene test result

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

    • Total Members
      133,442
    • Most Online (within 30 mins)
      7,748

    Peggy Vorell
    Newest Member
    Peggy Vorell
    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

    • Known1
      I am hesitant to post this as I have seen many people here recommending RO water.  With that said, I want to share my experience and how RO water now impacts me.  Three or four years ago a local store installed a RO water refill station.  I had been buying gallons of distilled and spring water prior to that.  I switched over to using the RO water refill station saving money by brining in my own clean empty gallon jugs.  Every 6-months I would replace the jugs by buying new gallons of distilled water.  This RO water is the only water I would drink while at home.  Two huge glasses every morning before work and two more after work.  I would also use the RO water to make coffee and hot coco. This past December, prior to my celiac diagnosis, my gut was making more noise than anything I had ever experienced.  Seriously, it was crazy, almost like fire works going off in my stomach.  I happened to pick up some distilled water for my 6-month jug rotation.  Literally, as soon as I started drinking the distilled water my stomach settled a great deal.  I could honestly feel the difference after the first glass of water.  I thought that maybe the RO water from the store's refill station was contaminated with some sort of cleaning agent.  I swore to myself I would never drink from that RO refill station again.  Instead I went back to buying distilled along with gallon jugs of spring water.  No issues with either of those as far as an upset stomach is concerned.  Cost, well that's a different story all together. After being diagnosed marsh 3c, I went shopping at Aldi's for the first time in my life.  I noticed they also sell water by the gallon.  Over the course of the last few weeks, I have purchased a total of 6-gallons of their water.  (Thankfully they were out on two of my visits.)  After having my stomach starting to make noises similar to mid-December again, it dawned on me, maybe its the Aldi water?  Initially I had contributed my bubble gut to some sort of gluten exposure or cross contamination.  Even though everything I have put into my stomach is naturally gluten-free or has been labeled gluten-free / certified gluten-free.  I had assumed that the Aldi water was spring water.  Come to find out, that was a bad assumption.  Looking close at the label it says purified by RO or distillation (or something like that). Again, I switched to different water.  Just like last December, the non-RO water instantly calmed my stomach and even felt better going down the hatch.  This was earlier today by the way.  Prior to creating this post, I did a few searches via Uncle Google.  I bumped into a thread on Reddit (where I am not a member) that has multiple people complaining of GI issues related to RO water.  So my initial thoughts on a cleaning agent in the refill station RO water were likely not correct.  Unfortunately, it seems the RO water itself causing me problems.  I am not sure if we are allowed to post links to other sites and hopefully I will not get into trouble for doing so.  I did try printing the Reddit thread to a PDF file.  Unfortunately, the file is 2MB in size, which is well over the 500KB file attachment limit here on this amazing forum.  Again, hopefully this is ok.  🤞  Here is the Reddit thread. This may not be a popular opinion here, but personally, I will not willingly drink another glass of RO water for the remainder of my life.  Who knows, maybe drinking RO water for the past several years is part of what activated my celiac?  No proof, but just a thought.  Come to find out RO water is well known to leech minerals from your body.  With people like us often lacking minerals to begin with, RO water does not seem like a wise choice.  As the Reddit thread mentions, there are RO water filtration systems that will inject minerals back into the water.  However, those systems are likely not being used at the grocery store refill stations nor by the bottling companies producing RO water for sale at your local store. Please do not shoot the messenger as I am just sharing my personal experience and letting others know that most RO water will leech minerals from your body. God bless and stay well, Known1
    • Known1
      My neighbor's mom was diagnosed with celiac disease 16 years ago.  She is a very kind person and has shared some info about local grocery stores and daily (soon to expire) meat deals.  This evening she brought over 2 slices of Papa Murphy's gluten-free pizza.  It looks to be topped with chicken and spinach.  I asked, "aren't you concerned with cross contamination"?  She said no and apparently eats it on a somewhat regular basis. I found an old article here along with another thread pertaining to Papa Murphy's gluten-free pizza.  The article is quite old, so I do not think it holds much weight nowadays.  The thread I found was also a bit dated, but certainly more recent and relevant.  The information in the thread I found was a bit inconclusive.  Some said they trust Papa Murphy's gluten-free pizza and others were a big no way.  One person even took time to train their local franchise on how to ensure the pizza remains gluten-free without cross contamination. Anyway, being recently diagnosed as marsh 3c, I am currently working on week 3 or 4 in my new gluten-free journey.  I do not want to be rude and toss the pizza out, but I also do not want to have a reaction.  Since she has celiac and obviously ate much or at least some of the pizza, I am leaning towards eating the two slices for lunch tomorrow.  As this thread's title states, what would you do?  Would you eat it or toss it out?  I suppose I could also just give it back to my neighbor to polish off. I look forward to reading your thoughts. Thanks, Known1
    • Scott Adams
      That must have been really upsetting to discover, especially after relying on a product you believed was safe. Labeling can change at any time due to supplier shifts or shared equipment, so it’s always important to double-check packaging—even on products we’ve trusted for years. A “may contain wheat” statement usually indicates potential cross-contact risk rather than an added ingredient, but for people with celiac disease that risk can still be significant. If you’ve been having symptoms, it may take days to weeks to fully settle, depending on the level and duration of exposure. In the meantime, switching to fresh produce or brands that clearly state gluten-free status is a reasonable step. It may also help to contact the manufacturer directly to ask when the labeling changed and what their current cross-contact controls are.
    • trents
      If you have been on a gluten-free diet for four years, all of the testing with the exception of the HLA one, was a waste of time. Not sure why your physician would have even considered it.  But that doesn't explain your ongoing celiac-like symptoms. It's beginning to look like they are being caused by some other medical issues unrelated to a gluten disorder. 
    • ainsleydale1700
      Thanks for the insight!  It has been a whirlwind...very overwhelming and frustrating at times.  But what you are saying makes sense to me. I have been on a Gluten Free diet for 4 years now Its been suggested to me to get a second opinion  
×
×
  • 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.