The Gluten Spectrum–Why does this Grain Protein Make So Many People So Sick?

Celiac.com 06/18/2021 - Gluten has puzzled me for a long time.  Why does this grain-protein, gluten, make so many people so sick?  I am a professor in pediatrics.  I run the Children’s Gastroenterology and Allergy Clinic in New Zealand.  For over thirty years I have been investigating and looking after children (and their families) who have reactions to food (in other words they have food allergies and food intolerances).  Their symptoms are often due to gluten.  I see a lot of families with celiac disease and gluten sensitivity.

Gluten and Cow’s Milk

The puzzle was this.  Gluten, that sticky protein that makes wheat-flour go all gooey, is well known to make people sick.  But, conventionally, it has been only been implicated as causing celiac disease (that is gut damage of the small bowel caused by gluten).  Consequently, the bunch of symptoms that celiac sufferers experience has been directly attributed to this gut damage (and also to the subsequent nutritional deficiencies).  However, I think that this explanation is too simplistic.

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By contrast, in the area of cow’s milk allergy and intolerance, medics recognize that the cow milk proteins can cause a multitude of different problems (such as: diarrhea, vomiting, gastric reflux, colitis, constipation, enteropathy, migraine, rashes, eczema, urticaria and poor growth).  These complaints are instigated by a number of different immunological mechanisms.

My point is this: if cow’s milk can cause a host of different problems, surely gluten can behave in a similar manner.

Gluten—the Culprit

It is my observation that gluten is the culprit for setting off most of the celiac type symptoms.  It does not seem plausible that all of the symptoms experienced by celiac sufferers are caused through a nutritional deficiency or from the damaged gut.  Clearly, with extensive gut damage, there will be significant malabsorption of foods and nutrients with subsequent diarrhea and poor nutrition.  But these are the more extreme cases.  My theory is that gluten harms the nerve network that controls a person’s gut—this brings about gut malfunction, which in turn sets off many symptoms.

The symptoms reported in association with celiac disease vary widely.  Some celiacs, even some with severe gut damage, have few symptoms.  While others, even with their gut fully healed (because they have been on a gluten-free diet), experience extreme symptoms from exposure to small traces of gluten.  Surely, this can only be explained by people having different degrees of sensitivity to gluten, rather than by the extent of their gut damage.

Medical evidence is accumulating that confirms this picture.  To illustrate this, I would like to tell you about the last ten of my gluten patients who I saw this week.  Their names, ages and problems are listed below (see Table 1).
All of these ten children have had a small-bowel biopsy by endoscopy: only three showed the typical celiac gut damage.  All ten children had high IgG-gliadin antibody levels.  All ten children recovered on a gluten-free diet.  In this group, they were all very sensitive to gluten: that is they all get their symptoms back again when they eat even tiny amounts of gluten.

The things we can learn from these children are:

• Only three have celiac disease.  Most, the other seven, can be called “non-celiac gluten-sensitive”.
• Gastric reflux is a common symptom of gluten sensitivity.
• Eczema can be driven by gluten.
• Gluten causes a wide spectrum of symptoms, including celiac disease.
• We need to actively look and test for gluten sensitivity to ever make the diagnosis.
• They were diagnosed by finding a high gluten antibody level in their blood (elevated IgG-gliadin).
• They improved within weeks of going gluten free.
• They found going on the gluten-free diet is quite easy with a little bit of help.
• The children with eczema and reflux can usually come off their medications once they are established on their gluten-free diet.

Gluten—the Diagnosis

I have now diagnosed many hundreds of children and adults with celiac disease and thousands of people with gluten sensitivity.  After seeing all of these patients, I now realize that I cannot distinguish clinically who has celiac disease and who does not.  Therefore, I test everyone!  My mantra is “Test—don’t guess”.  I test both for celiac disease and gluten sensitivity.  

Celiac Disease versus Gluten Sensitivity

Celiac disease:  The story of celiac disease began over a hundred years ago with Samuel Gee describing the “Coeliac Affection”.  Fifty years later, gluten toxicity was first reported in 1950 by Dr W Dickie.  Gluten was subsequently linked to the gut damage a few years later.  With the clinical picture now described, a small bowel biopsy became, within a few years, a mandatory test for the diagnosis of celiac disease.  Nowadays, celiac disease is still considered to be a gut disease which is confirmed by finding the classic microscopic tissue damage called “villus atrophy”.   Over the last eight years the ‘gut damage blood test’ called tTG (tissue TransGlutaminase) has helped make celiac much easier to detect.  About one in a hundred people have celiac disease.  But doctors seem to still be looking for the classic celiac: sick people with bloated tummies and diarrhoea.  However, most people who are getting sick from gluten have subtle symptoms.

Gluten sensitivity: The recognition of adverse reactions to grains also has a long history.  However, blood tests for gluten antibodies have been only available over the last fifteen years.  This has radically changed our understanding of gluten sensitivity.  Population tests have shown that at least ten percent of the population have high levels of gluten antibodies.  (That is the IgG-gliadin antibodies, also called Anti-Gliadin Antibodies.)  “Non-celiac gluten-sensitivity” is now the term used to describe these people who have the clinical manifestations of celiac disease but who have a normal endoscopy and who recover on a gluten-free diet.  Studies are finding that at least one in ten people are gluten-sensitive.

Glutened for 30 Years

Sylvia is 60 years old.  I saw her last week and she told me: “I never realized how bad I was until now that I feel so good!  Yes!  Now I actually realize how bad I was!”

Next, Sylvia said a sad thing: “I didn’t know that I could get a test!  I have been having trouble with my gut for about 30 years and have been suspicious about wheat but I didn’t know I could be tested.  I get symptoms of tummy bloating, headaches, abdominal pains, extreme tiredness, and sometimes I just feel dreadful.  People think that I am a hypochondriac or something because I am so often unwell.”

“It is such a relief at last to be recognized as having gluten sensitivity.  I have been off gluten for the last six weeks.  I am feeling great for the first time ever!  It’s wonderful!”

What a story!  After 30 years of being unwell, Sylvia has discovered that gluten was the cause of it all.  She has non-celiac gluten sensitivity.  The tTG is normal but she has high gluten antibodies.

How do you know if you are being Damaged by Gluten?

Simply, if you (or your child) have any ongoing symptoms, then you should arrange to get your blood tests.  Why?  Because both celiac disease and gluten sensitivity have a very wide range of symptoms.  You can’t tell if you don’t test.