Celiac Sufferers – How Sensitive Are You? Sensitivity vs Severity of Symptoms

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I have Celiac Disease.  If you’ve read GF Finds for long, you know that.

Because of my work on GF Finds, I regularly communicate with folks with Celiac Disease online.  As far as face to face interactions with fellow Celiacs that mostly happens when I attend my local Celiac Support Group.  If you’re not a part of one of those groups, I highly recommend it.  It’s a great place to learn, fellowship and receive/give support.   See: Celiac Support Organization to find your nearest group.

I will say that I am lately stricken by (at least my perception of) how lax some Celiac Disease sufferers are with regards to eating at home and eating out.

Example: 1: “My children and I share mayo and peanut butter, I just look in the jar and try to avoid the crumbs”, 2: Eating at restaurants that have a “gluten free menu” without inquiring about preparation and cross contamination.  3: Hey… If it says it’s gluten free bread, I should be good to go.  Or… 4: My GF bagel came out on the same plate as my spouse’s regular toast.  I ate it.

Many of these people have years more experience living with Celiac compared to me, some decades more.

I’m left confused.  Am I too careful?  Or, am I uber-sensitive vs most Celiac Disease sufferers?

If you are regularly exposed to small amounts of gluten, here are the options as I see them…

  1. You are not sensitive to small amounts of gluten, you feel well and your body is healthy.
  2. You are not perceivably sensitive to small amounts of gluten but you are continuing to do damage to your body.
  3. You are not perceivably sensitive to small amounts of gluten because you are used to continual exposure.  You are damaging your body.
  4. Your symptoms are relatively minor or have otherwise become normal to you and you just live with them.  You are damaging your body.

3 out of 4 of those options have you doing damage to your body.

To me, there are two factors at play here, I’m not doctor, these are my own terms and understanding…

Sensitivity – My threshold for reacting to foods.  Example – If I just ask Chipotle workers to change their gloves, I will generally will not feel well.  Changing of (presumably magic) gloves doesn’t do it for me when they are serving the exact same mildly cross contaminated food using fresh gloves, my threshold for reaction is lower than that.  Related: How I order at Chipotle

Severity of Symptoms – How badly I feel or react after I am exposed.  This will vary from person to person and presumably vary based on how much gluten you’re exposed to.  Although I believe I’m extremely sensitive, my reactions are relatively minor in comparison how some react.  I do not have to run to the bathroom or go to the ER.

I would make the case that whatever we call these two factors – that we should not confuse the two.

Just because I can make it through the day doesn’t mean I’m not sensitive.

Low level reactions, or symptoms are not acceptable to me as an everyday way of life, because I know I can feel well and I know that when I am having a reaction to any degree, I’m doing a disservice to myself and the people I love.

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