I talk a lot about risk management in celiac disease and being gluten free enough to get your disease into remission.

Couple of things here….

Celiac diseaase remission does not mean the disease no longer exists in your bod.  It means your blood tests and endoscopy show no signs of active disease.  More specifically – all celiac blood tests are in the normal range and the endoscopy shows Marsh 1 or Marsh 0. 

It doesn’t mean a return to a gluten filled diet is acceptable.  Returning to a gluten filled diet will reactivate the autoimmune reactions and you will get sick again.

The celiac disease blood tests are not sensitive enough to pick up intermittent low level gluten exposure.  They are not sensitive enough to pick up a number of severe glutenings in a short amount of time either.  To be fair – they are great at diagnosing celiac disease and not so great at monitoring it.

Also note – you are likely exposed to gluten without reactions.  Our food is processed in a variety of ways – many gluten adjacent. Heck, even sitting at the grocery store food has a chance to come into contact with gluten – from shared HVAC systems used in the bakeries or someone spilling flour.

All of this to say, we navigate this gluten filled world every day.  Bobbing and weaving to avoid gluten to ensure we stay healthy.

What are your hard lines for avoiding gluten?

Going to Aunt Susie’s house for dinner?Aunt Susie really understands and supports your gluten free diet.  She asks about ingredients and even invites you over to help cook.  Would you go?

Or what about Aunt Molly’s house? Aunt Molly kind of understands being gluten free and promises a gluten free meal.  She has on the menu ham, mashed potatoes, and asparagus.  Would you go?

Or a restaurant recommended by a friend for a special event.  You look at the menu – nothing is marked gluten free but a couple of things you think could be.  The restaurant speciality is doughnuts – doughnut flight as a starter, doughnut buns for their breakfast sandwiches and burgers.  Would you go?

A Michelin starred, inexpensive and exclusively gluten free restaurant but the cuisine is not something you’ve ever tried.  Would you go?

Hungry at an event and left your gluten free snack bag at home.  You’ve been at the event for four hours and have another four to go.  The snack bar has chicken fingers, burgers, and French fries.  A bunless burger might be okay on the shared griddle and french fries are your favorite food.  What would you do?

Tell me where your red lines are….

Shared fryer?

Cross contact assessment checklists?

Family event vs special occasion?

Tell me how you navigate your gluten free life.

To be honest, if you use the words, “I’m super sensitive”, I’m going to delete your post.  This is about sharing where we see the lines, when are okay bending them, and why.