it is all in your head

A few people have been asking me my thoughts on the new search study out of Australia. (And subsequent articles with inflammatory titles.) All of my responses have started with an audible sigh.

Bacteria existed before we had microscopes to see them. Just because we don't have a western medical test to "prove" someone has a disease/intolerance doesn't negate the illness, nor should it prevent her from trying an elimination diet. The media has offered a bizarre double-edge sword where people are simultaneously painted as irresponsible for not taking charge of their own health and belittled for trying alternative, non-western pharmaceutical options.

I am fine with a million more news stories clearly explaining that a gluten-free diet is not an effective tool for weight-loss. It is great if we continue to highlight that a gluten-free diet can cause nutritional deficiencies. But let's also include the fact that most of the processed gluten-containing foods are fortified with additional vitamins and minerals because they too are highly-processed and if you ate them all the ding-dang time you would have nutritional deficiencies. The difference is, instead of promoting the eating of more vegetables, food companies have added these essential vitamins and minerals into foods that normally don't contain them (or contain very little, or did contain them but where processed out).

I am also a big fan of more research; a lone study of 37 people in Australia does not conclusive make. So let's keep funding research, let's keep talking about alternatives to non-celiac gluten sensitivity/intolerance, but let's also keep these conversations grounded in the fact that there is a lot more we don't know.

When I joined celiac.com's message boards back in ye ole 2007, shampoo and face wash was a hot topic. Some people were noticing skin and digestive reactions when using products containing gluten. Others chimed in that there was no research proving one could react to gluten if it isn't ingested through the mouth and that clearly these people were: hypochondriacs, liars, attention seekers, aka "it was all in their head". This cutting hatred and dismissal of people who were in pain, or just seeking information, was part of the reason I departed. I don't see the point in negating people's experience, especially if we don't understand it. And now there are a bunch of gluten-free body-care products and growing awareness that if you slather things on your face it is pretty likely you are going to get some on your lips and in your mouth.

I think what is the most interesting out of this week of everyone-becoming-an-internet-expert-on-who-should-and-shouldn't-eat-gluten is the fact that people are breezing by the fact that the Australian study posited that people were having reactions/issue to other things: FODMAPS. So if by eliminating gluten are eliminating what is causing you discomfort/symptoms/reactions... isn't that a good thing? If a gluten-free or better yet an elimination diet is the key or gateway to figuring out what is wrong and feeling better, isn't that the goal?

So yes, more research, but until then let's be more support of those who are trying to get well and stay well rather than drawing more lines in the sand.

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?

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!!!

nytimes

I really really love this image of intestines. (Yup, that phrase just happened) And the article in the NY Times that accompanies it is equally as rare and exciting.

Reading through the piece, I also got the feeling that perhaps I am a honey bee. Beyond being fond of flowers, I just kept thinking about the "mysterious" decline of honey bees in the past decade. That there is some environmental shift that is occurring, but humans are still struggling to figure it out. The timeline isn't the same, but that huge explosion in the number of persons with celiac disease, and who have the gene markers for the disease, has gone up exponentially in the past 50 years.

The article touches on environmental research as one of several different factors in "triggering" celiac disease, including changing gut flora. This is really cool from the dorky science perspective, but it has real implications in understanding celiac and other autoimmune diseases. Part of me thought that this type of research would never happen. I am really excited. Even if it doesn't mean a cure for me - perhaps we can work towards eradicating the triggers of the disease for future generations.