I’ve been working on two or three real science-y posts. I’ve got them in draft form. I cannot get focused enough to finish because each time I get close, I read something in the facebook groups that makes me mad.
The most offensive thing someone can say in these groups is:
Just because you don’t have symptoms from something doesn’t mean you aren’t doing damage.
That is a loaded statement and it can mean a lot of things.
Most often it means – “You are dumb!” Lots of people, especially new people to the facebook groups, ask if something is gluten free. For me, I look at it like they are new and maybe cannot understand all of the ingredients. I always assume people really don’t know because this stuff can be hard.
If the item is questionable, like Cheerios (Cheerios discussion for another day), people responding to the post will say, “I’ve had it without reaction”. Then others will respond with “Just because you don’t have a reaction or symptoms from something, doesn’t mean you aren’t doing damage.” When I hear this in my head, its the snarky woman or kid in a sing-song voice saying this. Taunting me because I’m not smart enough to know better.
I always try to educate people in this scenario about what ingredient or ingredients could be the problem. They are trying to learn and not do further damage to their bodies.
Sometimes it means, “You don’t have this reaction and I do, means I’m more sensitive than you.” Yes, if you believe you are having a reaction because you touched a remote control in your non-gluten free house or inhaled gluten in a bakery or walked into McDonald’s and had a reaction, then you did have a reaction. I’m not going to deny that you aren’t feeling good. I am going to say, that it is unlikely from touching a remote, inhaling gluten, or walking into McDonald’s.
We live in a gluten covered world. Some of us live in a 100% gluten free household. The minute you leave you house, you encounter gluten on a regular basis – door knobs, telephones, conference tables, cars, grocery baskets and buggies, everywhere.
I’m going to go a little extreme here, so bear with me. The place we buy groceries – is probably the least safe place for us. Many have bakeries and most if not all sell flour. At some point, I’m sure someone has dropped and spilled a bag of flour. The flour has become airborne and gotten sucked into the HVAC system. At that point the flour was blown all over the store. Every single item in that store has probably been contaminated by gluten. Or maybe not so extreme – the guy stocking vegetables. Maybe 5 minutes prior to stocking vegetables, he was stocking flour and didn’t wash his hands. Now, this is specific to a grocery store because that is the most common place where flour may come into contact with other food, but it is an example of how is everywhere.
My point is, the world is covered in gluten. You can find it everywhere, but you don’t react everywhere. So, stepping into the bread aisle or inhaling gluten and thinking it is a gluten reaction is unlikely. Bakeries, maybe you could inhale enough to cause a problem, but you would have to be there for a really long time. 😉 Again, I’m not saying you aren’t having a reaction, I’m saying it may be unrelated to your Celiac disease.
My niece has celiac. She was diagnosed before I was. She is sick far more often than me and misses a lot of school. For several years, my sister didn’t know why my niece was missing so much school because they have a 100% gluten free house. They eat out at 100% gluten free restaurants. She had clean blood tests. They always thought her illness was a gluten reaction. Turns out, she has GERD and that was causing much of her stomach distress. If they had not investigated alternate causes to her pain, they might still think she was getting glutened.
I’m not saying that gluten can’t creep into your life and cause issues. But it should not be assumed to be the first cause of the issue. Especially since we are all careful with our diets, eliminate cross contamination as much as possible, read labels, and in general are healthy other than our autoimmune disease.
Finally, when the snark monsters come out with the “Just because….” argument, my response is this. “Having a reaction, doesn’t mean it is related to gluten. There are over 300 symptoms related to celiac disease and all of them can have alternate root causes. Please rule out all other causes before assuming it is a gluten reaction.”
Ok, I’ll get back to the science tomorrow. Sorry for the rant!