Today I was confronted with a huge reminder of just how far those of us with celiac or any number of gluten/wheat allergies/intolerances have to go.
Every now and again I find myself thinking "wow look at how much better it is now." And it is - it seriously is. When I was first diagnosed with celiac finding anything gluten free was a mysterious journey. I might as well have had a wizard hand me a map and tell me I had to go on a sacred quest through Mermaid Lagoon or something - it felt impossible. The only place I could get GF flours was at the creepy health food store. Seriously this place was rank and was only populated by a crowd that would best be described as unwashed. The flours were outrageously expensive, produced a mealy, crumbly and super dry product - never worth it.
For a few years I chugged along foolishly thinking that the only thing I had to worry about was food. It never occurred to me that the welts on my scalp and body could be from gluten in shampoo and soap. So I got rid of all the gluten soaps & shampoos and found safe products. It then dawned on me that I probably had to be worried about everything that I put on or in my body.
Crap.
This raised a thousand questions. Was my prescription medicine gluten free? What about the OTC stuff like Advil or Tylenol? Can I keep taking my vitamins?
I threw myself into research. A few years ago it seemed like doctors didn't really know what to tell you (other than "your reaction is in the gut it can't possibly happen on your skin" Me - "really, then why do I have an allergic reaction on my skin to gluten?" Doctor "...." Me: "Exactly") and pharmacists were even less help.I sought help of fellow celiacs who had done a lot of research themselves and was able to figure out almost everything.
I've been feeling pretty good for a number of years. I feel like I know just about all there is to know about my disease. I know what I can use, what I can't and rarely seem to be confused or unable to find an answer when I am confused. Plus its all come so far. For crying out loud waiters at chain restaurants know tons about gluten allergies - we've come a long way baby!
I've been living in happy pixie land of celiac disease until today. I clearly haven't looked at the ingredients on the moisture strip of my razor blades recently because it appears the strip must contain gluten. I shaved my legs and broke out into a horrible rash. I did a quick search on the computer for gluten free hydro-cortisone creams and couldn't find anything. What I did find was someone saying that CVS has a list of gluten free medications and that the pharmacy should totally be able to help with any medication. I grabbed my keys and was off.
I approached the pharmacy counter and said "I have a gluten skin allergy and am in desperate need of a hydrocortisone cream could you please let me know which one is safe?"
The pharmacy tech blinked at me a few times, said ummmmmmmmmmm and looked around.
Due to her severe confusion I asked if the pharmacist was available. The pharmacy tech walked to the pharmacist and relayed the situation. The pharmacists did not ask me any questions or even stand up to acknowledge me. I heard the pharmacist mumble something about having the pharmacy tech check the back of packages.
Um...what? Did the pharmacist think that on the back of the box there was going to be a giant GLUTEN written in the ingredients? Does she not understand its much more subtle then that?
I chimed in with "I looked at the back of the boxes already. I'm concerned because I saw retinyl and tocopherol - I don't know the sources and the packaging doesn't list it - can't you look on your gluten free list?"
I was then told there was no gluten free list and there was absolutely no way for them to look it up. The pharmacist suggested I just try one out.
Right. I'll just try one out and potentially suffer from open lesions all over my legs for a week or so. Sure. Not a problem.
This situation enraged me. It took everything in myself to not totally hulk out. 1 in 133 people have celiac or some form of gluten issue in this country. To give you a comparison 1 in 90 people have a peanut allergy and when was the last time you picked up a product that didn't have a huge "CONTAINS PEANUTS OR TREE NUTS" label all over it. I guarantee that CVS has a big ass list of anything containing nuts in their store and yet nothing for celiacs. Is it because we don't have ferocious Mama Bear's fighting for us? And why aren't they? A lot of kids are getting diagnosed nowadays.
Why isn't anyone fighting as hard as they did for peanuts? Is it because the allergic reaction is sudden and so dangerous with peanuts? I think thats really where the issue lies. With gluten the reaction is all internal so there is nothing shocking and well, glamorous about the disease. A five year old dying on the floor after touching a peanut is dramatic and a child who is slowly being malnourished isn't as exciting.
I don't really know where I'm going with all of us- but I know I want to do something. I want to be safe and feel confident that what I'm purchasing is not going to make me or any other celiac sick. I will be writing letters to all of my state representatives until they pass the FDA gluten free labeling measure. This is way too important and I feel like I have been completely complacent and now I'm mad.
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