Friday, March 22, 2013


Look, a sensational title to draw you in. Ha! Gotcha!

So it took me a second to cool off from my knee-jerk reaction to Elissa Strauss's piece on Jezebel this morning. "Will Everyone Please Eat Gluten? Please? Because You Are Literally Killing Me, Kind Of" highlights a legitimate issue, but goes for it by poking a bear with a short stick.

If one more person writes one more article about how hard it is to have celiac disease without acknowledging the rare privilege it is to have the time, money, health insurance, and the unicorn of a medical doctor who gives a shit enough to figure out what is wrong with your shit, I am going to scream. 

Yes, there are people who are attempting to avoid gluten as a fad diet, but don't chastise people who are trying to improve their health by working towards figuring out if gluten is the culprit; there is a good chance they are doing it on their own and dealing with a lot of physical and emotional pain. Before you start clacking away on your keyboard take a moment and realize just how lucky you are. And if you want to keep on typing, do us all a favor and stop embarrassing yourself by acting like getting a diagnosis is something that everyone can do. 

So back to the legitimate issue the article does bring up...
People who don't "need" to avoid gluten are going gluten-free but aren't as adherent and causing confusion and dining out problems for those who must not eat gluten.

So this is something I personally care about, because I would like to be able to go out to a restaurant say "it needs to be gluten-free" and not get poisoned. But I also know it is a lot more complicated. In 2010 I gave a conference paper about this very issue. I am going to dork-out for a second, but hold on, I will get all rant-y again soon. 

My paper, "I Cannot Have It But I Want It: Food Analogs Mitigating Dietary Change" looked at just how people with dietary restrictions (medical, personal, religious, ethic, etc) use language and substitute foods. What was really fascinating was how and when people chose to use the word "allergic". In the US, the word "allergy" comes with very specific visuals - people going into aliphatic shock, people needing an EpiPen, a legitimate threat to life - allergy in the restaurant world also can be code for "potential law suit". The word allergy can be used to traverse language barriers when working with kitchen and wait staff - it is an instant conversation stopper. (Especially in Massachusetts were we have laws that require allergy awareness training for restaurant kitchen staff.)

And this is a good thing. It is good to have language - and one special word - that can explain a whole lot of words, quickly. It saves us time, aggravation, confusion; language is awesome!

So what happens when people use the word "allergy" but aren't allergic?

If I say I am allergic to avocados. I go out to eat and there are free chips and guacamole and only have a little bit of it, what does that do

1. Allergies are tricky - some people have a threshold, aka they can be exposed to a small amount of something and not have a big reaction. So I could eat maybe a tablespoon of avocado before I start getting itchy. This does not mean I am not allergic, it just means I have a higher threshold than someone who's throat would close up if they had a very small amount. 

2. Ok, allergies are not universally similar, but we are all using this same word. So what happens then socially when I don't want slices of avocado in my tacos, but I do want to have a little guacamole?
Here is the trouble. People who are very reactive, or have little to no threshold for avocados, may get really angry when I order food and use the term "allergic" because if a waiter hears me say allergic, but sees me then eat the food I said I can't eat - invoking images of ambulances and lawsuits - perhaps she is going to take the next person a lot less seriously. 

3. What happens when people need to avoid a food, but don't have a word like allergic? Ding, ding, ding - celiac disease! I am technically not allergic to gluten - I do not have a histamine reaction - I have an autoimmune response. They are different, but in the interest of not getting violently ill, not wanting to spend 10 minutes educating waitstaff making $2.63 an hour, I use a shortcut: gluten allergy. People do this all the time. Linguistic shortcuts are awesome! Getting your point across quickly and clearly is wonderful and really important. 

Back to the article...
Strauss highlights a current problem in the U.S. with gluten-free being a food trend. Popularizing gluten-free replacement foods (breads, pizza, cookies, etc.) is a double-edge sword. It is awesome to have more options. Truly it is way better than 5 years ago. But as she points out, with the increase in options, there is a quagmire of problems. Crumbs are a huge problem. Here is the thing - crumbs are only a huge problem for people who are allergic or who have celiac disease - they are not a huge problem for people who are trying to avoid gluten for other reasons. But we are all still using the same language. We are all still trying to quickly convey "hey I don't want/can't have gluten in my food, so don't put it there, ok, no really, no gluten" in a fast, efficient manor. So whether saying avocado allergy, or gluten allergy, people are using the word allergy as a short-hand for don't put _____ in my food. 

But what about those pesky crumbs?
If you are on the Gwenth fad-diet of avoid gluten, crumbs are not going to hurt you - and you likely will never know that your food was not prepared to your specifications. If you have an allergy, or celiac disease you will know. 
Gwenth orders gluten free, the cooks and staff can get it right or get it wrong and if you don't have a reaction - no one is going to know. 
Here is the problem. The next person who requests a gluten-free meal, and the cooks and staff do exactly what they did for Gwenth, but the customer is actually allergic and those few crumbs can be a big problem. 

I get it, I get frustrated too. I cannot stand when the gluten-free bakery option is on the bottom shelf, with crumbs falling on it from the gluten-filled options above it. As gluten-free has become trendy, it is harder to be able to clearly relay no, seriously do not feed be even a small amount of gluten, to servers. I feel Strauss's pain because I live with it. 

*For the record, I am not allergic to avocados. That would be a bummer because they are delicious. 

gluten free digestive tea

Most teas labeled "good for digestion" contain gluten. For some reason, malted barley gets tucked into tea bags as the digestion helper. Since barley is not one of the 8 mandatory allergens that must be disclosed (in the USA), it is often hard to know which teas are safe - I am staring you down "natural flavorings". For the most part, I grab some ginger chews and forgo the landmine of packaged teas.

A little inspiration from a local blog, and I decided to create my own winter mix.

1 part dried elderberry (immune system support)
1 part dried milk thistle (supports liver function)
1 part dried rose hips (high in vitamin c)
1 part dried hibiscus flours (beautiful red color)
1 part dried orange peel (tastes awesome)
0.5 part dried ginger root (pieces, not ground), the digestive aid

The resulting "tea"* really needs to steep for 5-10 minutes. It is a little peppery from the ginger and has a great bright right color with a gentle sourness; you can add some honey to round out the flavor. I hand-filled some teabags and you can see in the back I store them in a zip-lock. The rest I saved for when I am at home can can use a metal brew basket.

*Technically a tea has to include actual tea leaves, but I am going to take the vernacular liberties here.

KABLAM - the result tastes awesome and doesn't ironically cause digestive unrest.

Tuesday, March 19, 2013

call for compassion and rhetoric change

I read, and normally like and agree with, the Triumph Dining blog. They provide clear, concise information about new products, research, etc. On the whole, they get it right.

Today they are guilty, at the very least, of the lack of compassion. We - those who must avoid gluten - are constantly undermined by those who belittle our perceived "choice". When you categorize intense label scrutiny as "neurosis" it is really difficult to not want to give you the middle finger.

For those who react when using skin products containing gluten - it is not "neurotic" to check labels - this is self preservation.

It is time for "us" to change the way we, and others, talk about maintaining our health and safety - because that is what it is. It is not neurotic to not want to be poisoned, it is common sense.

PS - If you are going to reference a study that "some dish soaps use hydrolyzed wheat proteins, and can even trigger reactions if a Celiac eats off that dish washed with “gluten-filled” soap!" cite it. Otherwise your $0.02 isn't really worth anything at all.

Wednesday, March 13, 2013

doctors that "get it"

I had to cover my face to hide my tears at work. I started reading the latest NYT piece on food allergies fully intending on ripping it to shreds. (A friend and I have a fun game of sharing food-related blogs and articles and then getting to talk about what is missing, what is assumed, food access and privilege  It is fun! It reminds me about my favorite parts of being in the Gastronomy masters program.)

So I opened up the link ready to bring the fierce. I was not going to get suckered in by beautiful writing (the clean, tight, yet descriptive prose that pulls you in and is so good you stop looking for flaws). I was not going to let the human stories blind me to the fact that so many people in this country still don't have access to affordable healthcare, that don't have the time or money to get a proper diagnosis. I tucked into this piece ready to hate it.

And then I started to weep.

Dr. Kari Nadeau's caring, compassion, and understanding overwhelmed me. The way she interacts with her patients, their families, and understands that her work does not end at 5pm is key. More than key, it is essential, but so rare. I understand completely the need for healthy boundaries - where care giving professionals need to draw lines between what is and isn't appropriate, but what is great is to see when care givers realize the need to traverse those lines. Accepting a phone call on her vacation to help patients and parents deal with life-threatening conditions is what that family needed at that exact moment. 

Tears streamed down my face for those families, for that doctor, for those times where I have held hands of those in pain, and for the times when I wanted - no needed - a doctor or nurse to feel for me and understand. I wept for the handful of times I have received that type of care. 

I cried for the fear that comes with not being able to eat food, and still not having adequate packaging information; for the sheer panic shared meals can cause. I cried for being told last night that my favorite local food spot no longer feels comfortable serving people with food allergies because they have changed up their menu. I bit the inside of my lip and forced a smile on my face telling the server I was grateful for her telling me, being honest, and it was so much better to know than to be sick. And I cried because I still have hope that someday, just maybe, I took might get to eat gluten again. 

But mostly, I am crying happy tears, because for the first time in 6 years I have a doctor who "get's it". I wish I didn't feel so lucky, that this feeling of compassion, understanding, listening, and engaging with patients was common. I know how rare it is, and how many disparities keep people from getting care and information. Tomorrow I can take others to task for missing out on important facts, talking about why certain disease get attention while others aren't funded, ignoring race, class, gender, age, and language that make access so unequal. Knowing these things is not enough, but for today I am going to acknowledge my privilege and love this article. 

The full article, worth a complete read, possibly with a side of tissues:The Allergy Buster: Can a Radical New Treatment Save Children With Severe Food Allergies?

Monday, March 11, 2013

Working towards a cure

Stuart's article in today's Boston Globe highlights a new "celiac vaccine" that is being developed at MGH. While there is a long road, lots of tests, red tape, and reasonable skepticism, my brain and intestines are in love with this quote:

"Having a treatment that would allow full recovery and return to normal diet would be life-changing for patients, and may motivate more patients to be checked for celiac disease,” he said.

Can you imagine?!

Beyond normalcy and health, can you contemplate a life without having to spend so much time thinking, worrying, reading, planning, back-up-planning your life?! It would be so cool!!!

Monday, March 4, 2013

The bare truth about beer, what a bear

So I have been sitting on a post about Omission beer. It is pretty much my new favorite (ok was my favorite till this morning) but I have been having trouble figuring out just how to write about it.

Omission is brewed with gluten-containing items, i.e. barley. But then the beer goes through a magical process that renders it gluten-free, or really very very low gluten. They post their ELISA tests for each batch online. This level of transparency, plus the taste of REAL BEER, made me feel like this was a slam dunk. (I have consumed it 7 times without a gluten-reaction; and my reactions tend to be pretty strong and violent.)

I was feeling pretty great about this brew until this research came out, and now I am looking long and hard about my beverage decision. The guts of the study show that basically the ELISA test (the one used by Omission) is coming up with false negatives. Yup, you read correctly, the test is not consistently detecting gluten.

This leaves me, and perhaps you dear reader, in the same leaking boat. Without legal standards (still waiting on the FDA), and with faulty testing, it is up to each person to determine what risks to take when eating and drinking. What really infuriates me is what about people who don't have access to the internet, or the time to do all of this research and then extra research about the research to ensure they have the facts about what they are about to ingest?!

Is it worth rolling the digestive and long-term-health dice for a delicious beverage? If you are up for the challenge I have 11 beers with your name on them.

Thanks to Gluten Dude for highlighting the research