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Beyond Celiac Disease

Journal of Gluten Sensitivity Autumn 2013 Issue

This article originally appeared in the Spring 2013 edition of's Journal of Gluten-Sensitivity. 03/04/2014 - The question. What is the spectrum of gluten related disorders?
“Experience is that marvelous thing that enables you to recognize a mistake when you make it again” – Franklin P Jones.

Photo: CC--simonyatesThe chilling news is that gluten-harm reaches far beyond the concept of celiac disease.  Gluten has now been recognized to cause a widespread spectrum of illness, over and above celiac disease. The two questions to answer in this context are:

  • How many other diseases does gluten cause?
  • How many people are adversely affected by gluten over their lifetime?

Last century, gluten-illness was synonymous with celiac disease.  But, by the turn on the millennium, this concept radically changed.  It was discovered that gluten intolerance was not limited to celiac disease.

Disturbingly, celiac disease is only just the beginning of the scourge of gluten.   Most people with any of these symptoms will not have celiac disease, but are likely to have an illness caused by gluten-harm.  A gluten-related disorder.

A Typical Story
Heidi, in her blog, writes about her life-long struggle to get a meaningful diagnosis for herself and for her family.  She says that testing for celiac disease and gluten sensitivity should be the first diagnosis to think about—not the last!

Heidi says:
“I also believe that the “atypical” symptoms are one of the major reasons why 95% of the estimated 3 million Americans living with celiac disease are undiagnosed.  Add to that, the fact that you can go into any medical specialist’s office in this country and no doubt find patients whose underlying health problem is gluten, whether in the form of celiac disease or non-celiac gluten sensitivity.  If doctors would stop being so eager to treat any of the 300+ signs, symptoms and conditions caused by gluten sensitivity (often with dangerous medications that will only perpetuate the problem), and take the time to practice medicine by seeking out the underlying root cause of the symptom, what a different world it could be!”

The Gluten Syndrome
The eating of gluten-grains is definitely associated with a lot of other serious illnesses. Collectively, I call this “The Gluten Syndrome”. This includes:

  • Brain and nerve damage
  • Auto immune disease
  • Mental illness
  • Skin disease
  • Gastroenterological disorders

A number of names are now in use for identifying gluten-related illnesses.  These include:

  • Non-celiac gluten sensitivity (NCGS)
  • Gluten intolerance
  • Gluten sensitivity
  • Gluten Syndrome
  • Gluten-related disorders

Gluten-related disorders diseases are being indentified by more and more research groups.  The realization of this widespread gluten-harm is so recent that adequate clinical studies have yet to be done.  Therefore, the true extent of the problem remains unknown, although meaningful estimates can be calculated.

The Spectrum of Gluten-related Disorders
With the publication of a landmark paper of “Spectrum of gluten-related disorders (, perhaps it is time for the Health Guidelines (or medical protocols) of celiac disease and gluten sensitivity to be revised.

There have been many developments over the last few years: the diagnosis of gluten sensitivity has come of age.  The concept of gluten-related-disorders has gathered momentum with a number of converging influences: the boundary between celiac disease and gluten sensitivity has become blurred; the “gold-standard” small bowel biopsy for the tissue diagnosis of celiac disease is no longer regarded as mandatory; there has been recognition of a wide range of gluten-related disorders without intestinal damage; the extensive neurological effects of gluten have been well documented; and there has been a widespread adoption of gluten-free diets and lifestyle in the community.

Here is the background of these statements:

a) Spectrum of gluten-related disorders
A group of 15 international celiac experts, who up until a few years ago were skeptical of gluten causing any illness other than celiac disease, have now defined a much wider group of illnesses which they have called “gluten-related disorders”.  This landmark paper “Spectrum of gluten-related disorders: consensus on new nomenclature and classification” places celiac disease in context of other gluten-illness.  Celiac disease no longer dominates the gluten sensitive picture (Sapone et al. BMC Medicine 2012, 10:13, published 7 February 2012).

The abstract reads: “A decade ago celiac disease was considered extremely rare outside Europe and, therefore, was almost completely ignored by health care professionals. In only 10 years, key milestones have moved celiac disease from obscurity into the popular spotlight worldwide. Now we are observing another interesting phenomenon that is generating great confusion among health care professionals. The number of individuals embracing a gluten-free diet appears much higher than the projected number of celiac disease patients, fueling a global market of gluten-free products approaching the $2.5 billion in global sales in 2010. This trend is supported by the notion that along with celiac disease, other conditions related to the ingestion of gluten have emerged as health care concerns. This review will summarize our current knowledge about the three main forms of gluten reactions:

Regarding gluten sensitivity, they say:
“there are cases of gluten reactions in which neither allergic nor autoimmune mechanisms can be identified. These are generally defined as non-celiac GS or more simply, GS. Some individuals who experience distress when eating gluten-containing products and show improvement when following a GFD may have GS instead of CD. GS is a condition distinct from CD and is not accompanied by the concurrence of anti-tTG autoantibodies or other autoimmune comorbidities.”

They go on to say:
“the two conditions cannot be distinguished clinically, since the symptoms experienced by GS patients are often seen in CD … their symptoms included:

  • abdominal pain (68%)
  • eczema and/or rash (40%
  • headache (35%)
  • ‘foggy mind’ (34%)
  • fatigue (33%)
  • diarrhea (33%)
  • depression (22%)
  • anemia (20%)
  • numbness in the legs, arms or fingers 20%
  • joint pain (11%).”

They conclude:
“All individuals, even those with a low degree of risk, are therefore susceptible to some form of gluten reaction during their life span. Therefore, it is not surprising that during the past 50 years we have witnessed an ‘epidemic’ of CD and the surging of new gluten-related disorders, including the most recently described GS.”

b) No definitive test yet for gluten sensitivity
Unfortunately, there is no accurate or reliable test for gluten sensitivity.  However, the IgG-gliadin antibody (also know as AGA, anti-gliadin antibody) has been widely used as the best-available-marker, particularly in the identification of neurological and psychiatric gluten-disorders. Between 40-50% of gluten sensitivity patients may have IgG or IgA anti-gliadin antibodies (AGA Sapone A et al. (2010). Differential mucosal IL-17 expression in two gliadin-induced disorders: gluten sensitivity and the autoimmune enteropathy celiac disease. International Archives of Allergy & Immunology; 152: 75-80; Bizzaro N et al. (2010) Cutting edge issues in celiac disease and in gluten intolerance. Clinical Reviews in Allergy & immunology

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Therefore, if the IgG-gliadin antibody is not elevated, this cannot rule out a diagnosis of gluten sensitivity.  But, if elevated it can contribute to the diagnosis.

Research laboratories are actively seeking specific test.  Until such a test is available, elimination and challenge with gluten remains the most effective option.

c) gluten sensitivity a common illness
Dr. Fasano estimates that 6% of the population has gluten sensitivity, compared to 1% with celiac disease.

Gluten sensitive now has its own Wikipedia page ( which also cites this figure.  The problem of estimating the incidence of gluten-related-disorders is that there is not yet a diagnostic test.  Current estimates are likely to be conservative.

It is now known that no one can successfully digest gluten, and that we all have the potential to get unwell from gluten, and that it can cause illness in many different ways.  Celiac disease has increased five-fold over the last 40 years, ( and it is likely that gluten sensitivity has increased at the same rate.   

d) Change of diagnostic guidelines for celiac disease
No longer is small bowel biopsy necessary for a diagnosis of celiac disease. In certain cases, serology is now sufficient for the diagnosis of CD. This has been discussed for the last 10 years as blood tests have been developed to accurately detect gut damage (EMA, tTG and DGP).  Added to this is the genetics that can identify those people who can sustain intestinal damage with gluten (who carry the HLA DQ2/DQ8 alleles).  Finally, the endoscopy is expensive and unreliable for the diagnosis of celiac disease.  With the rapid increase in the incidence of celiac disease, it is impractical to demand tissue diagnosis for the millions of celiac disease sufferers.

ESPGHAN (European Society for Pediatric Gastroenterology, Hepatology, and Nutrition) has new guidelines for the diagnosis of celiac disease
They conclude: “The diagnosis of CD depends on gluten-dependent symptoms, CD-specific antibodies, the presence of HLA-DQ2 and/or HLA-DQ8, and characteristic histological changes in the duodenal biopsy. In case of high antibody levels the diagnosis of CD may be based on a combination of symptoms, antibodies, and HLA, thus omitting the duodenal biopsy.”
Their key message is: with high tissue damage markers (tTG IgA, EMA or DGP), in genetically susceptible people, celiac disease can be diagnosed without performing a duodenal biopsy.

e) Gluten can harm brains and nerves
Evidence shows that gluten does significantly affect the brain and nerves: gluten damage is not restricted to the gut.  This is elegantly documented by Marios Hadjivassiliou (Gluten sensitivity: from gut to brain. The Lancet Neurology, Volume 9, Issue 3, Pages 318 - 330, March 2010),

They write:
“Gluten sensitivity is a systemic autoimmune disease with diverse manifestations ... celiac disease, or gluten-sensitive enteropathy, is only one aspect of a range of possible manifestations of gluten sensitivity … gluten sensitivity was shown to manifest solely with neurological dysfunction.”

They conclude:
“To improve diagnosis rates, the perception of physicians that gluten sensitivity is solely a disease of the gut must be changed.”

f) Double blind studies
The term “gluten sensitivity” was first used by Prof W Dicke the discoverer of gluten-related-disorders in his 1950 MD Thesis.  He worked out that gluten was the culprit causing the illness (diarrhea, poor growth and irritability).  He made his diagnosis clinically by elimination and challenge (not double blind), and with no blood tests or biopsy. He said “in the clinic, one finds many sub-acute forms of enteritis and dyspepsia which respond poorly to normal therapy but well to wheat deprivation.”

In the 1960s, with the instigation of the small bowel biopsy, the whole perspective of diagnosis became focused exclusively on the gut.  Celiac disease became a strictly gastrointestinal illness.  This focus became so intense that it led to the un-substantiated dogma that: gluten only caused celiac disease … and if the patient had a normal small bowel biopsy, then gluten could not be causing any harm.  This has now been shown to be a false doctrine.

Currently, as in Dicke’s day, to establish if someone is gluten-sensitive, still relies a clinical trial of elimination and challenge.  However, not unreasonably, there is a call for double-blind studies to establish the place of gluten-related disorders outside the framework of celiac disease.

For instance, in IBS patients, who stated that they were gluten-free from self-diagnosis (and who had celiac disease excluded), were randomized to either gluten or placebo treatment groups. The finding was that symptom-severity-scores (of pain, stool consistency and tiredness) were significantly higher for gluten-eaters compared to the placebo-gluten-free group (Biesiekierski JR, Newnham ED, Irving PM, Barrett JS, Haines M, Doecke JD, Shepherd SJ, Muir JG, Gibson PR: Gluten causes gastrointestinal symptoms in subjects without celiac disease: a double-blind randomized placebo-controlled trial. Am J Gastroenterol 2011, 106:508-514.

g) 10% already going gluten-free
Over the last few years there has been a widespread adoption of a gluten-free diet in the community.  Peter Gibson, professor of medicine at Monash University’s Eastern Health Clinical School, estimates that in Australia, up to 10 per cent of people who are avoiding gluten because they think gluten is their problem

However, until there is a reliable way to make the diagnosis, it will remain difficult to quantify the problem. Gibson plans to investigate the prevalence of non-celiac gluten intolerance, why it occurs and whether low levels of gluten can be eaten safely.

In America, the adoption of gluten-free diets is also increasingly common.  This can be measured by the sales of gluten-free products, which have a compound annual growth rate of 28% from 2004 to 2011.  For the year ending 2012, the sales of gluten-free products were up 19%. Also, nearly 20% of the population are actually buying.Gluten-free products, for whatever the reason.

Gluten was first implicated as causing disease 62 years ago by W Dicke.  Initially, it was considered a rare disease affecting only the gastrointestinal tract. But now gluten has been recognized to cause a wide spectrum of illnesses, with a number of different pathological and physiological mechanisms.  Celiac disease is becoming much more common, and gluten-related disorders are thought to affect at least 10% of the total community (and obviously it therefore affects a much higher proportion of the unwell-community).  

Surely it is time for gluten-related-disorders to be part of the medical main-stream differential diagnosis.

This is a chapter from Dr Rodney Ford’s new book “Gluten: ZERO Global” which is available as an ebook at welcomes your comments below (registration is NOT required).

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8 Responses:

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said this on
04 Mar 2014 7:03:47 AM PDT
This is an excellent article and very informative. CD or gluten intolerance should come to mind when patients experience some of these symptoms.

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said this on
10 Mar 2014 9:01:07 AM PDT
A great overview to pass on to relatives who don't "get" this yet.

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said this on
10 Mar 2014 11:12:21 AM PDT
Very informative and the news about other possible diseases linked to celiac or to gluten are very alerting to me as a patient.

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said this on
10 Mar 2014 7:55:51 PM PDT
Very good article. I have to wonder why not very many researchers are looking into gluten as a reason for both Alzheimer's and Parkinson's Diseases. I had symptoms very similar to both diseases before I was diagnosed.

Patricia S. Arnold
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said this on
10 Mar 2014 8:09:12 PM PDT
This is a very informative article and very much needed! I was so glad to read and understand more about gluten. I was diagnosed with celiac in 2009. I work to always avoid gluten but am suffering with neurological symptoms more and more. It is very scary!

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said this on
10 Mar 2014 9:50:27 PM PDT
Excellent article in language easily understood by non medical people.

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said this on
12 Mar 2014 7:28:13 AM PDT
Today, some of my colleagues still do not believe in this disease...too bad!

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said this on
14 Jun 2014 12:52:48 PM PDT
Not once was GMO addressed in this article. Why, there are studies where patients ate wheat products made with heirloom wheat. None had any gluten sensitivity problems from it. I strongly believe that GMO is to blame. Is no one looking into the this? The article did point out sensitivities that none of my doctors ever mentioned.

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Love reading this story as it is rare (I think) to find someone else with the swallowing issues! Hate that this is your experience however! My daughter also has the swallowing issues and it got so severe (we had no idea about Celiac) that she had to do intensive therapy to learn how to swallow again. It got better but never resolved. Once she went gluten-free it got way better though a recent exposure to oats caused it to flare up again. Do you mind me asking - Has your swallowing issues 100% resolved being gluten-free? Does it ever actually go away and stay away or will it always pop up from time to time?

I will say what everyone else says and get tested again with the endoscope and biopsy to confirm, you will need to be on gluten for 12 weeks for blood test 2 weeks for endoscope at least a slice of bead a day. The thing about celiac is many symptoms can be quite minor, hell even before I had my MAJOR symptoms show I had some of the other issues show up in my every day life and I just thought it was normal. Regardless if you keep eating gluten with celiac disease it will slowly eat away at your body internally til it does become a problem. Celiac is a autoimmune disease that reacts to the gluten proteins, and has misdirected attacks on your own body internally by mistake trying to kill the gluten. Now the damage can lead to all kinds of other auto immune diseases, random allergies, food intolerance, and even cancer. I suggest if you do have it, stay on the gluten-free diet, your just basically changing brands there are many gluten-free food versions of everything now days. Be thankful you got this early, I developed issues with dairy, corn, peanuts, and a whole list of others along with another autoimmune disease Ulcerative Colitis that makes it so I can not eat sugars or carbs or my intestines swell. Getting on a gluten-free diet before your damage progresses will not only keep you healthier for longer, and let you live a pretty normal life but also save you from this pain and very limited diet if the damage progresses too much. As to your fatigue, you changed over to gluten-free diet, you stopped eating a bunch of the Fortified foods, and depending on the route you took of either whole foods ore more processed foods. You could be eating to many empty carbs, starches, and not enough nutrients. OR if you took the whole foods approach you be lacking in your daily calorie intake or not the right ratio of nutrients. You might have to supplement a few of them.

REALLY odd call out here, I am attending a anime convention called A-Fest in Dallas come August, I need someone to split the room with it who is gluten-free. I take extra precautions, I COOK all the food, bring only CERTIFIED foods into the room, The room will be Gluten Free, Corn Free, Dairy Free, Peanut Free. I am trying to find someone to split the room cost with, that would be safe to be around I CAN NOT AFFORD to get sick at one of these things, it is one of my few joys left in life and get very paranoid around them. So I need someone who is also gluten-free to make sure the room stays safe (YES I have done with with a non celiac with the rules down and well stuff happens so not chancing it). Room split is food coverage comes to $400 if it is just two people. 4 day convention, I will arrange a meal plan around your diet as long as it is free of my allergens. I will also provide various snacks, baked goods, and even stuff to take home with you. ^Convention info.

Hi Jennifer, This thread might have some information that would help you. Your doctors are pretty lame IMHO. Perhaps you can find a celiac group in your area that has local meetings for support. They might also suggest a different doctor who knows how to treat celiac patients.

The initial reason gluten free diets came about was to treat a condition called celiac disease?an autoimmune disorder known to affect at least three ... View the full article