The world’s experts in all things celiac and gluten related gathered together in February 2011 to agree on new nomenclature and classifications for gluten-related disorders.  The original article, “The definitions for coeliac disease and related terms” can be found here. The abstract is free, however, to get this article you need a subscription or pay a fee.  There was also an opinion article, “Spectrum of gluten-related disorders: consensus on new nomenclature and classification”, also published in February 2012.  If you want to read the (free) article, check this out.

If you want the down-and-dirty here is the bottom line on the 3 most common gluten related disorders: wheat allergy, autoimmune, and gluten sensitivity.  Let’s review each one in a little more detail.

1. Wheat allergy: an adverse immunologic reaction to wheat proteins.  Does not cause long term damage to the body from repeated exposure.
2. Autoimmune: includes celiac disease, gluten ataxia, and dermatitis herpetiformis
1. Celiac disease-a chronic small intestinal immune-mediated enteropathy precipitated by exposure to dietary gluten in genetically predisposed individuals
1. symptomatic-clear outward symptoms, not limited to gastrointestinal complaints.  Small intestine damage present.
2. silent-no outward complaints but positive blood tests for the celiac markers (link to previous post with alphabet soup on screening blood work)
3. potential-auto-antibodies present in blood but no damage to intestine.
2. Gluten Ataxia:  Ataxia refers to a general lack of muscle coordination during voluntary movements; For example, walking or picking up objects.  In gluten ataxia the immune response triggered by gluten is an attack on the cerebellum versus an attack on the intestine as in celiac disease.
3. Dermatitis herpetiformis: A skin reaction to gluten ingestion. The rash is usually symmetrical and found on the elbows and forearms 90% of the time.  Often itching and burning of the affected areas is also described.  Dermatitis herpetiformis may look like this.
3. Gluten sensitivity: diagnosed by excluding the previous two categories plus a positive response to a gluten-free diet.

It wasn’t that long ago that the medical world didn’t have terminology for this gluten sensitivity group, and many doctors, probably didn’t believe it was a real condition.  As always, the medical world is constantly changing and evolving.  One of the doctors I work with recently told me, “what we know we know now will be different tomorrow”.

A randomized, placebo-controlled, double blinded study (the Cadillac of all research methods) of patients without celiac disease, recently found that the severity scores of pain, satisfaction with stool consistency (lovely) and tiredness were significantly higher for those consuming gluten in the diet compared to the placebo (gluten-free) group, while no evidence for intestinal inflammation or damage or for latent celiac disease was found.

A study completed between 2004-2010 at the Center for Celiac Research, University of Maryland found 6% of the people seen fit the criteria for gluten sensitivity.  Their symptoms included: abdominal pain, eczema, headache, foggy mind, fatigue, diarrhea, depression anemia , numbness in the legs arms or fingers and joint pain.  That’s 6 out of 100 people may have gluten sensitivity in addition to the 1 out of 100 with celiac disease.  No wonder the gluten-free market is booming!  Clearly, a gluten-free diet may be medically necessary for a lot of people!

Why is having a common nomenclature and diagnostic criteria important?  It helps in the medical world if globally everyone is speaking the same language.  This way researchers can compare apples to apples and oranges to oranges to better find trends and supportive research.  In the end, this is helps, you, me, and a lot of other people receive better, more timely diagnosis and treatment.

What do you think?  How many of you went to multiple doctors because the first 1 (or 5) ruled out celiac disease and thought there was no way gluten was your problem?

References:

Sapone et al. Spectrum of gluten-related disorders: consensus on new nomenclature and classificiation. BMC Medicine 2012, 10:13

Biesiekierski JR et al. gluten causes gastrointestinal symptoms in subjects without celiac disease: a double-blind randomized placebo-controlled trial. Am J Gastroenterol  2011, 106:508-514