Thursday, May 30, 2013

Your friend is newly diagnosed - here is what (not) to say

If you have talked with me in the past two months I have probably discussed or pushed you to read this article. It has some many applications and it is a great example of clear, concise writing. I love it for so many reasons!

Just go read it, it will take you 5 minutes and it is way better than any summation I might try to make.

See why I love it?! Comfort IN, dump OUT.

It is so incredibly simple, but so easy to forget. 

If you have a friend or loved one who is recently diagnosed with celiac disease, or anything else for that matter, you don't get to complain to you friend. It is that simple. And trust me, you do need to get to complain, and vent, and be comforted, but not by the person in the middle of the circle. Just remember as hard as it is for you to learn all of these new rules about where gluten can hide, how to rearrange your life (because you are a fucking amazing and supportive human who isn't going to ostracize your loved one from social interactions or make their lives even harder right now, cause you are reading this and you are a decent human being), it is still a lot harder for your friend. Way harder, TONS HARDER. Because at the end of the day, you can make a mistake and not be violent sick for making a mistake and you get to take a breather from reorganizing your kitchen, your brain, and your life - your friend doesn't. So don't complain to your friend, but for your sanity find someone to help you through this.

Being a newbie to anything is hard, but going gluten free is still a giant pain in the ass. There are no federal guidelines that define what gluten free is (or isn't), mainstream media thinks it is still ok to act like the medically required need to avoid eating all gluten is some kind of joke or fad, and it is incredibly difficult to not get glutened at a restaurant. These are some of the factors that contribute to to hire rates of eating disorders and depression for those with celiac disease.

While I am in the doling out advice mood, here are some other suggestions:
-avoid the phrase "oh this is soooo good, shame you can't have any" (this is cruel)
-never say "just try a little" (gluten is poison to celiacs, small amounts are never ok)
-if you invite someone to share a meal with you try to do a little leg work to make them feel welcome and safe...
-but understand that s/he is going to need to ask a lot of questions to feel remotely safe and it is not questioning your commitment, is is their need to feel like they aren't going to digestive-ly and mentally set back again for a few weeks

Most of all, thank you for being not a jerk to someone who just got handed a giant mental and physical challenge.

Friday, May 17, 2013

When a restaurant gets it wrong

I tweeted about Jamie Oliver's Restaurant getting fined, and it sparked some interested discussions. Stories about getting glutened at restaurants poured out. What was most fascinating was the stories about the secondary effects of ingesting unwanted gluten. What happens after the initial pain/problems subside and what people have to cope with, sometimes for months. 

The last time I received unwanted gluten at a restaurant I was throwing up for a day, but had to manage dizzy spells, exhaustion, bloating to the point of not being able to button my pants, and brain fog and food regurgitation for two weeks. This is no where near as severe as the woman in England who was unable to receive life-saving organ transplants because of Oliver's staff members mistake, but it is an extreme example that when a restaurant gets it wrong, it is not just the initial response, there are significant lasting effects.

The more I think about it, the more I feel that $12,000 isn't enough. A chef with as much media presence (and money) as Oliver needs to do more. He needs to publicly apologize and implement a system where this will never happen again in any of his restaurants.

Even if he did do all of that, and make a donation towards celiac research, I am still not sure I would ever dine in one of his restaurants. Is it possible to forgive and trust a restaurant/chef again? I mean that in all seriousness. I haven't been able to go back to any restaurant that has gotten it wrong, it is too much of a transgression .. but maybe you have.

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Friday, May 3, 2013

Gluten free medical bracelet

I never thought I would need a medical bracelet. I have one minor drug sensitivity, if you give me Vicodin  my body will give it right back to you in under 20 minutes. It isn't a huge issue, unless you are 16 year old me post-wisdom teeth extraction. I am also pretty lucky that I haven't needed very much in the way of pain medication. 

But I am having surgery next week. And there will be a chunk of time where I won't be able to verbally advocate for myself. And while knowledge of gluten has vastly improved in the past few years, there is still no legal requirement for prescription drugs to list the what the origin is of their binding starches. (Starch binders are good - they hold the medicine together so it can be a pill shape, I am all for it, I just want to know what it is: corn, wheat, other?) Come on FDA you can do it!

I have done my best to do a bunch of prep work:

-I made sure my medical records clearly stated I have celiac disease
-I told my surgeon, twice that I have celiac disease
-I verbally asked the surgeon's scheduling assistant to note it in my file... she gave me great advice to make sure I tell the nurses the day of surgery too
-I noted both "celiac disease" on my pre-op paperwork and "gluten allergy" under the "what medications are you allergic to" list (Yes this is fudging the medical reality, but I want them to check ALL medications and I have written before about the current constraints of the English language and I am comfortable about using anything in my toolkit to get my point across - do not gluten me)
-When I spoke to the nurse who reviews all pre-op paperwork I asked what type of medications are usually prescribed and how I could best say that anything given cannot have gluten in it 
-I got a medical bracelet

I was resistant to getting on at first, but then realized it would be a really good idea, especially after my first colonoscopy where the nurse tried to feed me cookies. 

I picked a green band - in honor of celiac disease awareness - and because it is the most obnoxious color. This is one time where I want everyone to pay attention... to my wrist. 

It reads:


I guess it also might be time to upgrade my camera so I can take better photos, after all is said and done. 

What other advice do you have for navigating medical arenas gluten free?