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.

Follow me on twitter.

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:

CELIAC
NO GLUTEN
CHECK FOOD 
& MEDICATIONS

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?

Tuesday, April 30, 2013

I am not ok

I have written, erased, re-written, and sat with this post in my "drafts" for a while now. It is not my best writing and I didn't feel ready to post this. I didn't want to post this. It really isn't about gluten free stuff... but it is. It is about me. It is about how we silence and shun those with mental health issues - chronic and acute. 


When I was recovering from my celiac diagnosis - and yes, I just referred to the process of dealing with the diagnosis and re-figuring-out-my-life as recovery - I was depressed. The gluten-free community is really great about being supportive with recipe ideas, managing family dynamics, managing work and social parties, but the giant elephant in the room is often the mental health implications of getting glutened and dealing with the recovery process. 

So I decided to post this. I hope that it helps. I hope it helps me, and I hope it may help others who are trying to figure out how to cope and manage these days.   


I am not ok; and that is ok for now.

I woke up on Wednesdays and was crying. I didn't know what to do, but then I called someone because I knew I needed some extra help.

I am an exceptionally lucky person. Everyone I know who was at the marathon on Monday is physically ok.

I work at the site of the Boston Marathon Finish Line. I was at work on Monday when the building slightly shook, twice. We tried our best to work through a 3 hour building lock-down and get information out to friends, colleagues, and loved ones.

I have felt angry, grief, and that I didn't deserve the luck of not going outside to watch and cheer people on. I have hated the images and words of hate on Facebook and Twitter, and the false reports by the NYPost - they all feel like more pain.

I have been filled with lots of feelings about feelings. Am I suppose to feel this way? Why does this feel different than other tragedies. Why is this getting reported differently? I have felt a weird mix of guilt and bile over the fact that I know how disproportionately this is getting media attention and financial aid.

I got so angry I yelled at my computer for people telling others "don't feel fear, if you do, terrorists win". Please stop telling people how to feel.

I am scared. It is scary to ride to work on the T with armed national guards - who I am so grateful are here - but I can also be afraid and worried. I can cry for those I do not know, and it doesn't make me any less.

This past weekend was very hard. I have never been more grateful for social media - allowing for a space for people who were trapped in apartments and homes to let people know how they were doing, and for people to still feel connected.

I am so very lucky and that is why I am writing. There are a lot of us who are "very lucky" who are also hurting and feeling a lot of different feelings right now. There are people who are all over the globe who are affected by this. Please know you are not alone, and please reach out to others.

I didn't sleep much last night because I had nightmares of people being injured again - memories of Thursday night and Friday morning came to life in my dream. I know this is not ok.

Not being able to "handle" or "process" this by your self ok. But we need to process this. We need to do whatever we can to get some of this pain, sadness, fear, grief, relief, exhaustion, tension, anxiety out of our bodies. Writing, talking, crying, getting a bit of exercise, meditating, and self care are crucial right now.

I knew I wasn't ok this morning, and I called someone for help. I am not cured, I am not better, and I am still  trying to wrestle with thoughts, feelings, emotions, and images. And I know I am not alone.

And hopefully soon, cooking and baking will be back. And I am excited because tulips are blooming and it means ramps will be ready to dig up.

Resources:
For persons or family members who were injured
City of Boston has set up a special number: 617.343.1373

Resources and information for Copley/Boylston residents and business owners

Boston Acupuncture Trauma Relief

Your place of work may have an Employee Assistance Program (EAP) or OMBUDS office that can also help you access resources.

Monday, April 29, 2013

twitterings

Twitter cannot contain all of No Gluten Required. There aren't enough characters. Fret not!

Slightly less well thought out, sassy, mostly gluten-free, often micro-bursts of rage can now be found on: https://twitter.com/NoGlutenReqd

What are you favorite gf tweeters?

Tuesday, April 16, 2013

Peace Vigil Tonight, Boston Common

There is a peace vigil being planned for tonight on the Boston Common, 6-8pm.

Facebook invite 

The American Red Cross of MA notes the generosity of so many has them not needing additional blood right now. 

Boston Marathon Help - gluten free housing

If you know of someone stuck in or around the city, I have listed my space on the google.docs I have a place to offer.

kristina (dot) nies @ gmail (dot) com

I can accommodate 3, space does have friendly cats. I work down town at the site of the finish line, can pick up/transport.

It is listed as gluten free, but please feel free to share this widely. 

Thursday, April 11, 2013

Curing Celiac Disease

A few years ago, I was in my I-am-going-to-read-every-medical-article-on-celiac-disease phase. So many articles and definitions of celiac disease are wrong or incomplete. I was really frustrated. After getting through a few studies, I realized that there is so so so much that "we" don't know about celiac disease. It was really refreshing. It made me a lot less angry at lot of people. There just isn't a ton of research on celiac disease (or wasn't 5 years ago, that is changing a bit now) and the gut is very complicated. Did you know the digestive system has its own nervous system?! Fascinating right?!

A very good friend, who is a scientist, fielded a lot of my questions. One night, in his kitchen, I was asking with all seriousness: well why can't people with autoimmune diseases just get bone marrow transplants?

This came about after a really lengthy discussion about T-cells, they are the pesky cells that make the antibodies that cause the problem for persons with celiac disease. (There are a lot of T-cells that do great things, like creating antibodies to fight infections, but the T-cells that create antibodies that "attack" gluten, cause significant damage to villi in the small intestines, plus a whole lot of other problems - over 300 symptoms have been acknowledged.)

T-cells are created in the bone marrow, and while they create the antibodies that cause damage in the small intestines, they travel throughout the body. So say you got rid of all the T-cells in your digestive tract, if there is still one in your blood stream, you still have the capability of making more T-cells, and more gluten-attacking antibodies, and continue the cycle of active celiac disease.

So this knowledge was probably the most liberating thing for me. It made me feel stronger. For me, understanding celiac disease, made me truly feel like I wasn't going nuts. It made me feel like I had a clue as to what is going on in my body. (I am going to acknowledge that this is only one way of knowing or understanding things, but it is the kind that helped me a lot.) I cannot tell you how grateful I am to have such awesome friends!

Back to the bone marrow...
After this pretty detailed explanation about how T-cells are made, how they chemically "communicate" and how they synthesize antibodies - I sort of blurted out "can I just get a bone marrow transplant?!"

I realize how ridiculous this might sound. Bone marrow transplants are very risky and only work if you basically kill all of the "bad" cells before you add in new bone marrow. That is why it is not done unless absolutely necessary as a treatment for certain cancers or blood disorders. You literally have to compromise your entire immune system, making you susceptible to a lot of things a lot worse than celiac disease - diseases and disorders that can be fatal.

My friend was very kind and let me go down this path of hypothetical bone marrow transplants and talked about how it may or may not work. It was really exciting. Not because I actually wanted the procedure, but because for the first time since being diagnosed in 2007 I felt like I had a true understanding of what was going on, and of the research that had been done so far. Super cool right?! And knowledge is a decent start towards finding a less risky option for treatment and a cure.

I bring this up because there is actual success story! Bone Marrow Transplants Appear to Cure Celiac in Two Patients. Again, these patients had a need, aside from celiac disease, for the transplant. The ability to consume gluten post-transplant, was a bonus. Hopefully this will inform more research. This is so exciting!

Friday, March 22, 2013

YOU SHOULD EAT GLUTEN

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.