glutennamelabelBack when I was in TV news Madonna was in the news when she was pregnant with her second child.  I remember our news director came out to the news room and told us not to call her the “Material Mom” on second reference.  It is a label that was being used by every news organization from CNN to your local news station- and still is today.

These days one of the big lifestyle news topics is living gluten free. But I am beginning to wonder if writers are desperate to come up with another label to call us……

The most common is of course being the terms gluten sensitive and gluten intolerant. But more recently I am seeing other terms regarding the gluten free community:  gluten avoiders  and gluten resistant.

What do all these terms mean really?  I think they are all used interchangeably.   Recently during an interview with Jules Shepard on The Gluten Free Voice with JulesDr. Alessio Fasano, founder of the Center for Celiac Research, defined the difference between  using the terms sensitivity and intolerance.  He says those two terms are not synonymous.

“Food intolerance is an intolerance about foods stuffs that we cannot digest properly or we ingest in large amount that we cannot handle correctly,” Dr. Fasano said in the interview last month.  He says FODMAP and lactose are in this category.  “Sensitivity  is immune response to a specific element in food…Non-Celiac Gluten Sensitivity is the immune response to gluten or other wheat containing elements.”

That is a very good clarification!

Gluten Avoiders vs Gluten Resistant

So if you live gluten free, are you considered a gluten avoider or someone deemed gluten resistant? And what do those terms mean?

I know I don’t have the black and white answer to this question.  But they don’t seem as clinical, or medically-based as an intolerance or sensitivity when describing a person.  

Gluten avoider doesn’t bother me for a person who just wants to eat gluten free for their own purposes.  Dictionary.com defines the word avoid as, “to keep away from; keep clear of; shun”.  To me, the word avoid, while accurate according to the definition, in my perspective, doesn’t seem as serious as it needs to be in describing someone with celiac disease. It feels like a marketing term to lump everyone together.

Gluten resistant feels the most negative to me when using it as describing a person.  The term is actually used in the Oxford Textbook of Medicine, when talking about refractory celiac disease, “Patients with this disorder may present with gluten-resistant malabsorption de novo….”  This I am fine with.  

But the medical terminology isn’t saying, “Amy Leger is gluten resistant.” When used that way, or when describing a community, “The gluten resistant don’t eat regular bread…” it feels negative and cold, like we are not open to the option of gluten.  I have seen both terms in practice.  

To me, both gluten avoider and gluten resistant terms sound like people with celiac and non-celiac gluten sensitivity have a choice to eat gluten. Especially for celiacs, who get an autoimmune response when they eat gluten, that protein found in all the breads, pizzas and baked goods…. is 100% a no-no.

I know writers want to have multiple ways of saying the something so they aren’t using the same term over and over.  AKA : Madonna, Material Girl, Material Mom, Madge, etc… But for those of us living the gluten-free life, the labels being used seem to mean different things. What’s next? Gluten Challenged?  

If we are going to label an entire group of people who eat gluten free  — I still just like the good old gluten free community phrase.  To me, it doesn’t hold bias, it is clear that it includes everyone….it works for me.  

 

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2 Responses to “Labeling the Gluten Free Community”

  1. I totally agree with you! When I was diagnosed with celiac disease, I was saved by the love and support from people of the gluten free community. Some had celiac, others gluten intolerance and others were un-named. And I was – and am – totally ok with that. It isn’t easy to start over life by switching to gluten free and we need the support of everyone – regardless of their specific titles – in order to make GF living the easiest and best it can be.

    http://caseythecollegeceliac.blogspot.com/2014/06/starting-over-celiac-style.html

  2. I use the term “gluten intolerant” most of the time. I think “gluten avoider” sounds too much like a choice. I don’t have a choice. I have to avoid gluten. However, I do bandy about the term “allergy” a lot even though I know it’s autoimmune. It seems to resonate with people better. As long as someone doesn’t call it “faking an illness”, I’m fine with whatever respectful label people want to use.

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