how difficult is it to be gluten free

Jennifer Esposito's recent interview got a few wheels turning. Is it actually harder now than it was 4 years ago to be gluten free? Are there really no resources "out there" for Jennifer (and the millions of other humans who need to live gluten free)? 

When people are first diagnosed I cut them a lot of slack. I offer them advice. I tell others to be care, generous, and above all forgiving. When you are first figuring out the gluten-free landscape it can feel overwhelming and one can be prone to hyperbole. But after 4 years, perspective should have set in. There are now more gluten-free cookbooks, online resources, guides, friends, and medical professions who know what gluten is. It is far from perfect, but it is leaps and bounds better. It is also millions of times easier to find information than if you were diagnosed before the mid-90s... you know before the internet. 

I think we need a time out to talk about privilege. Gluten-free privilege looks like this:

If you had the ability to google anything about celiac disease or gluten

If you have the free time do research about gluten

You have a computer

People listen to you when you say your are ill

You found a doctor who would work with you and doesn't say its all in your head

You have a doctor

You have health insurance

You have the time and money to go to multiple doctors visits

You have paid sick time to have medical tests done like an endoscopy and colonoscopy

If you made it this far down the list, there is a high probability that you are white and not suffering from other healthcare disparities 

You have choices in what you get to eat and when

You have access to gluten free replacement foods (like gf bread)

You can afford gluten free replacement foods

You can afford the time and money to research gluten-free options

You have a platform where people listen to you (cough blogging cough)

You have access to gluten free recipes, cookbooks, guides

So why does this matter?

In the US, right now, 15% of people live at or below the poverty line ($23,050 or less a  year for a family of four). That is over 45 million people. It is actually a lot more complicate. Let's put this in perspective. The average actual cost of living for a family of 5 in the US is $58,627 a year. 

There are millions of Americans who don't have access to time, information, or money to buy gluten-free replacement foods. Millions of Americans don't have the privilege that Jennifer does, or that I do. There are people who won't get a chance this year to find out that by not eating gluten, she could feel a whole lot better. 

The second big problem I have with Esposito's comment is the fact that it has the effect of erasing people. By saying that there aren't any resources out there, she is blanketing decades of research, books, advocacy, and lives of people who helped make it possible for her to be diagnosed as having celiac disease and have something to eat before she opened her bakery. 

Jennifer, as does everyone, has the right to feel alone and frustrated with the current gluten-free marketplace in the US. It can be incredibly difficult to navigate through misinformation, cross-contamination, and feel like you are constantly having to educate others. It can be exhausting. But we need to acknowledge that we aren't the first human beings dealing with this and that things would be a lot more difficult with the incredible work of other people who shared recipes, engaged in scientific research without the funding of drug companies, provided support networks in-person and online, and made safe gf food options available before yesterday. Ignoring those people, erasing them from history, that doesn't help us at all. It hurts us. 

boycott barilla

It is really hard to find good gluten-free pasta. So much of it tastes like shoes or disintegrates a millisecond after it reaches al dente.

And now it is a bit harder.

Barilla's CEO's bigoted comments means it is off the table. I implore you to add your voice and tell Barilla that an apology isn't enough. They need to include all types of families in their ads. A boycott is not enough. Leave them a comment on their site. Let's flood them with our voices.

Here was what I wrote them:

As an Italian American, and a human being, I am appalled at the bigoted comments made by your CEO. LGBT pasta eaters and their allies care about such language and will boycott your products until you apologize and add images of all families into your ad campaigns. You need to make reparations for the wrong and painful language used by the head of your organization and acknowledge that you actually care about your consumers. I will not be eating your products until you do so, nor will anyone I know.

the very best gluten free pumpkin bars

I am not one for gloating, but hear me people when I say that I have made the most delicious pumpkin thing ever! (The picture doesn't do it justice - these treats survived the worst public transit could throw at them this morning and still provided joy to others.)

Do you remember when I totally tried to pull of a failed pumpkin bread recipe and call it a "brownie"? We can laugh at that now, because with a few tweaks, that recipe has sprouted a new MOST GLORIOUS food.

Oh yes I did cut them into parallelograms. On-the-bias slices might just be tastier. Don't even think about asking me if one could put chocolate chips in said recipe. Chocolate has no place here. Stop trying to put chocolate on/in everything! Chocolate is good, but it overwhelms squashes in general. While I cannot stop you from mucking about in your own kitchen, I am going to pause and stare-you-down towards the right decision.

Ok, put the bag of chips down, and pay attention.

These guys are spicy, not in the chili pepper way, but in the loads of wonderful, intense spices that make this a borderline spice bar. If you are a traditionalist - aka boringmouth - you can half the spices and you will still have a good pumpkin bar. But why settle for good when you can have the best square of pumpkin in the world? (Seriously, why would you?)

gluten free pumpkin bars
1 stick unsalted butter (aka half a cup)
1/2 cup brown sugar
1/2 cup white or cane sugar
2 eggs
1/2 cup millet flour
1/2 cup brown rice flour
1/2 cup hazelnut meal
1/2 tsp baking soda
1 tsp baking powder
1/2 tsp xanthan gum
1 tsp salt
1 1/2 tsp Ceylon cinnamon
3/4 tsp Vietnamese cinnamon
1 tsp ground ginger
1/2 tsp ground allspice
1/2 tsp ground nutmeg
1 tsp ground cloves
1/2 tsp ground coriander
2 tsp psyllium husk
15oz (canned) pumpkin

Preheat oven to 350F
1. Cream the butter and sugars. You aren't going to fluffy, but you want to take it past the point where it is a ball of grit hanging on to your mixer, to a smear of stuff coating the mixing bowl.
2. Add in each egg, one at a time. Mix till it is thoroughly incorporated.
3. Combine all of the dry ingredients in a separate bowl.
4. Pour half of the dry mix into the butter/sugars/egg mixture and combine. Add half of the pumpkin to the bowl and combine. Repeat.
5. Bake in a 9x13x3 inch baking dish at 350F for 25-40 minutes depending on the awesomeness of your oven. You want to be able to insert a stick into the center and have it come out clean.
6. Cool.
7. Cut and enjoy! 

sarcasm, hyperbole, and access oh my

I treasure sarcasm, so when HuffyP throws at me some sarcasm with science I am in a special little part of hog heaven. It is really really really hard to not respond to asinine blanket statements about "food fads" that hit close to home without exploding in some form of rage. The reality is - it is personal. Being hyperbolic is a fun way of pointing out some pretty ridiculousness without perhaps seeming shout-y.

5+ years later I still get irked when people equate their "diet" with my inability to eat gluten without becoming ill - and opening up long-term health risks. It is not the same. Not remotely.

I am frustrated-at-hypothetical-you, equating your desire to avoid a food for weight loss is no the same. In fact, I have a new speech in my back pocket for you. When you say "oh maybe I should go gluten-free, its so much healthier and I could probably loose some weight" I say "most people gain weight on a gluten-free diet, many because they were malnourished, but a lot of gluten-free replacement foods are higher in calories. And you need to be very vigilant and read every label and you don't get to go to a new restaurant on a Friday or Saturday when its busy, and the biggest hurdle is crumbs and cross-contamination..." At this point your eyes start to widen, or glaze over, and a little piece of me hopes I have dispelled any notion that living gluten-free is anything like that 2 weeks you tried Weight Watchers in the mid-90s.

Also, I have noticed that "you" are a woman under 50. Men don't say shit like this to me. (White men however do feel the need to point at my cane and ask me "so what happened there?" like it is their business, and obviously temporary.) This isn't a controlled study, but 5 years of gf living and I feel like its gotta be a bit more than anecdotal at this point. Women who I speak to about my food needs assume I am doing it to loose weight, nearly every single time. They also assume that I want to discuss weight loss techniques because I am on a "diet". We have a lot of work to do to create a better, healthier social climate for women and girls to talk about food and to do so without having it bound up in the binary of either being on a diet or not.

Don't get me wrong, I will talk to you about what I eat, I will talk to you about what you eat, but if your goal is to have a performative discussion about how we are all on "some sort of diet" I am going to stop you and stop you hard. These discussions are not ok. I am not going to perpetuate how you having a cupcake and eating it in front of me makes you feel bad or guilty. I am not going to do it. First off - your cupcake is poison to my body. Secondly, it is a cupcake. It is a treat, a snack, a celebratory food. I am not going to be part of some food vilification or you feeling the need to go on and tell me about how many extra sit-ups you are going to "make" yourself do tonight as penance. I am just not going to be part of it. We can talk about things, and I will do my best to hear you and understand that you are probably dealing with a whole lot of feelings about your body and its relationships with food, but hear me people: I am not going to make you feel ok about hating your body or yourself for the food you eat.

I bring all of this up because I think one of the points that Sisson misses is that the term "diet" is causing a problem. No one who refers to abstaining from eating peanuts because they have a peanut allergy as a "peanut-free diet", though clearly that is what is going on. I have talked before about the power and limitations of language. The word "diet" conjures images of choice and cheating and the ability to choose, not the inability to choose.

Back to the article, basically it is great because it is a decent round up of research, laws, studies, and cursory trend analysis; plus the bonus of being sasserific. Like nearly every article out there, is misses out on who has access to the information and gf foods - it almost goes there when he talks about gluten-free replacement foods costing more and the current medical advice to not go gluten free without talking to a doctor first - but Sisson falls short of actually having a frank discussion (or sarcastic one) about who is getting the access, knowledge, and option to go gluten free. (Hint it is not those most impacted by the "exacerbated obesity problem")

And yes, clearly Sisson is promoting his own agenda - primal eating. If I am honest, we all have our own agenda. I want people to be less asshattery about gluten-free options actually being gluten free! I want real SNAP and school lunch reform that is socially, economically, and culturally appropriate! I want people to understand the social implications of dietary restrictions!  I want all french fry frialators to be dedicated to potatoes only! I want the US to stop subsidizing corn! I want the price of solar panels to come down! I want the minimum wadge to be a living wage! I want healthcare to not be tied to employment! (hopefully this one is coming soon)

I have a lot more wants, but I feel like I am pretty clear about it. Sisson was being a little sneaky and a few people are feeling touchy about it. I don't know. I could never be fully honest about all of my biases, Sisson at least linked to his site. It feels like a baby/bathwater thing. He offers a lot of information in one spot, and even thought I don't feel like he is making the strongest argument for giving up all grains, he is pointing out how bonkers the whole fad-climate is right now.

This is the third major oversight - so many people are getting it wrong
Fame and publicity is a weird thing. Gluten free being a fad has opened a lot of doors to more options, and more problems. It is a clear way of increasing profits, but not necessarily doing it right. (Thanks GFG for pointing out the hypocrisy in the gluten-free cheesecake with wheat husks) It is really really hard to be truly gluten free since it has become more popular. Yes there are more options, but most of those options aren't really safe. There is a giant false-sense-of-security-blanket draped over crumbs and soy sauce. We need to talk about this more.

Overall, yay for more research. Yay for more people talking about this. Yay for more nuanced discussions about these issues. And I will still hold out hope that one day we will look back and laugh at the amount of time we spent worrying, because there will be a cure. Till then, I think we need to try harder to include more people in the discussions and make sure those who need to be gluten free are and have the tools to do so. 

Daly Dogs - worth the drive

I couldn't believe it was true. Fried dough. Real, gluten free fried dough. Those words are like a unicorn, a mythical beast not to be found, only to be spoken of with yearning. Hold on friends, gluten free fried dough can be yours and it shall be delicious.

Daly Dogs, in Haverhill, MA does it and does it right.

I didn't expect to order a sandwich, but the Ruben was awesome. Overstuffed and messy, on buttered toasted bread - it was nearly perfect. The pizza is Sicilian style with a surprisingly sweet sauce - if I got it again I would cover it in chili flakes to help balance it out. The fried dough is really why I showed up. The texture isn't an exact replica of the gluteny kind, but there is a fantastic crunch and softer interior. The generous amount of cinnamon and sugar help to bring me back to summers on Hampton Beach.

The menu is about half gluten-free, half gluten-filled but the staff is really knowledgeable. The family that owns the restaurant also runs a small detached gluten-free store. They also have ice cream... which I foolishly did not leave enough room for. Who is up for a second trip road trip?

double twist on summer favorites

This is less of a recipe and more of a eureka moment. Same friend who cannot eat any grains, and nearly no carbohydrates, was in town at the start of tomato season. I really love a fried green tomato blt. It is probably my favorite sandwich of all time. The combination of the crunchy fried green tomatoes, soft, sweet ripe tomatoes, plus well there is bacon, which rules in general... it is just prefect.

In attempts to make something similar, and use up stuff in the freezer, I began wondering about the possibility of hazelnuts. I had some left over hazelnut meal from a recipe I tried (hazelnut strawberry tart, pictured on the faceybook, that tasted good but didn't hold together well enough to share the test recipe.)

I combined about a cup of hazelnut meal, salt, ground coriander, ground celery seed, ground cumin, cayenne pepper, toasted onion powder, garlic powder, and ground black pepper. I dipped the slices of green tomato in an egg wash (egg, salt) and then into the hazelnut mix. Fried in bacon fat these rounds wouldn't fool a southerner, but they were tasty and satisfying.

The salad is a slight adaptation of my previous attempt at a blt salad. Instead of a mayo-based dressing I used avocado. Just a whole avocado, the juice of one lemon, and some salt proved to be a fantastic creamy dressing for some mixed greens. Adding chopped, ripe tomatoes and crumbled bacon just took this over the top.

 Be mindful. Bacon-laced foods will attract beasts.

Boston Globe finally getting it right

I have complained about the Globe before, and even wrote a letter to the editor when they got it wrong.

I have to hand it to them, that years later, they finally got it right. Title aside, the April article finally highlighted the problem with contamination and need for dedicated equipment for gluten-free options. It feels like a giant relief to see Melinda's name in print next to accurate information. It is amazing the amount of work and time it takes to get a few hundred words to line up in a way that is truthful and engaging. Really excited to see more and more articles that I read with my head nodding in agreement... rather than shouting and ranting. (Though rants are still fun!)

understanding your intestines

"This is your gut on gluten" is one of my favorite articles I have read in a long time. It does a great job of explaining the autoimmune response to gluten exposure in those with gluten sensitives and celiac disease. It could only be better if it had some rad images to go with it.

satay you stay - very best Thai food

I was always fond of Thai cuisine. Sweet, spicy, sweet, tangy, what's there not to love? Since 2007 I have really ramped up my appreciation and consumption. I think I have unintentionally sought it out almost everywhere I have traveled.

Bloomington, Indiana - Esan Thai (best northnern Thai I have ever had)
Chicago, Illinois - Pho's Hot & Spicy Thai Cuisine (best green papaya salad I have ever had)
London, UK - Manorom Too Thai Restaurant (really knowledgeable staff that double checked everything)
Cambridge, MA - Pepper Sky (always a slam dunk, eat in or take out)
Smile Thai closed in Cambridge, which broke my heart. They actually brewed their own gluten-free soy sauce.
Boston, MA - Chili Duck

See what I am saying? And there are just my greatest hits.

It takes a lot for a place to nudge on my list. It takes even more for me to be surprised. Well Krua Thai blew my expectations out of the water. It is a tiny spot that would be easy to miss because there is a giant service bridge overshadowing this small 10 table restaurant. Photos of food don the walls, but don't let you think there is anything cliched about this find. Dishes are made to order, and before I could even snap pictures half of our meal was devoured. We expected greasy, overcooked pad thai, but could not be more wrong. The server was incredibly well versed in the entire menu and understood allergens and double checked ingredients. I don't have anything bad to say - nothing. The food was fresh, interesting, well prepared. I am not even a fan of eggplant and truly could not stop eating the basil eggplant special we ordered. The satay was truly the best I have ever had... and I sure do enjoy me some meat on a stick.

I didn't realize how much I liked this place until I was plotting how or why I needed to be back near Buzzards Bay just to get a chance to eat here again. 

arthroscopic knee surgery - making it gluten free

Ok so there is no real trick to making a surgery gluten free, it is surgery! But the recovery time can be tricky so here is my list of things I wish I knew before I had arthroscopic knee surgery. (This site is pretty great and has images that didn't make me want to throw up = I recommend.)

BEFORE SURGERY
Pack your bag with all your identification cards, paperwork, doctors' names and contact info, and your allergy list. Pack one or two snacks - you might need to take a small amount of food with your medication when you wake up from surgery.

Wear very loose fitting shorts or pack them for the ride home. You aren't getting any form of pants on for a while.

Narcotics cause constipation - you should have a game plan for dealing with this and a back up plan for when that doesn't work.
Plan A - magnesium citrate. I really like NaturalCalm but found it wasn't enough
Plan B - senna tea. I like Smooth Move but usually don't drink it because it is strong for me. Well this is the time for that strength. A friend brewed up several cups and iced it down and kept it in the fridge. This was a huge lifesaver since I wasn't the most coordinated while on crutches.
Plan C - propylene glycol. I really hate this stuff, but it was useful to help get the wheel going again
Plan D - saline enema - this is not pleasant but some find it necessary

Yes, you read correctly, I had a 4 step poop game plan. It is far easier to plan ahead than have to phone a friend to get you supplies.

Other supplies to have on-hand
Aspirin - you may be put on an aspirin-a-day regiment for a few weeks post-op. I don't normally stock this in my home, so its good to ask and have some ready.

Compression socks - you will be given a set to wear home, and wear for 2 weeks. I am an avid supporter of support hose, but the hospital kind have openings at the foot, which I found itchy and uncomfortable when it was time to get back to work. A good friend went out and bought me a full-foot pair that were easier for me to use while walking. Warning - they don't hurt but are pretty much spanx for your feet and legs - aka will make your feet and legs incredibly toasty. Having a second pair was nice to be able to wash them and air them out.

Baby wipes are a nice-to-have extra. Since you can't shower for a few days post-op it is great to be able to "wash" your face without trying to close your eyes and balance over a sink. They also are pretty fantastic when you spill food down  your arm... not saying that will happen but juice is in general, juicy.

Totally not necessary, but I was pretty grateful for a grab-bar in the bathroom to help get on and off the toilet. It is harder to do with crutches than I thought and it was nice to be able to be able to steady myself and get the crutches up and under my pits. (They cost about $15 at Home Depot - make sure the bar is secured into a stud or you will rip it out.)

DAY OF SURGERY
If you got some sleep, congrats. You are probably waking up to the desire to drink a large amount of water filtered through some delicious beans. Sorry. Grab you stuff, throw on your medical bracelet, and make the trek to the hospital.

After you check in, breathe. This is a great time to give your personal belongings to your designated ride home buddy.

Once you are called back to sport a fancy hospital gown, you will get asked a lot of questions. Your medical history will be gone over several times. If you get motion sickness you might get extra medication. You will be given a prescription for post-op pain meds. Really important to remind them that it needs to be gluten free. They will ask you a bunch of times what surgery you are having and even mark it with a pen on your body. Maybe you will freak out the night before and create your own body art.

After waking up your body might think "that's not so bad". You are on a lot of drugs - listen to the nurses. They are your best allies in getting everything accomplished like not falling down or successfully peeing in the toilet. Nurses are also the ones who tell you the absurd things you said in the operating room, like "I think we should all get donuts together". Nurses are awesome. Nurses will also try to feed you graham crackers. Stay vigilant and stick with your packed snacks.

I got sent home with a knee wrap that contained ice packs - which is probably my second favorite part of knee surgery. If  you can, ask for an extra set of ice packs. It is great to keep one in the freezer at all times.

You will get a take-home sheet of dos/don'ts post surgery. The nurses recommended keeping my knee elevated above my heart to help with the pressure/pain. This is pretty difficult to manage on your own. They suggested a pile of blankets/quilts but my favorite was a giant triangle pillow. It isn't the cheapest thing, but it stayed in one place - unlike the moving blankets - and I could easily adjust it for sitting and lying down.

As you can see, everyone loves geometry!

Since I had a back injury, I also used a cervical back roll for support. It ties around and helps keep the lower spine in a neutral S-curve to prevent further injuries to my less than happy slipped disks. It does make you look like a child in the shallow-end but it was totally worth having one less thing to worry about when slouching on the couch.

DAY AFTER SURGERY
Hopefully you have gotten some sleep. You may be tempted to take a look-see at your wound. Don't. You might need a friend to remind you that that is a horrible idea.

It is really helpful to have paper or a chart so you can write down when you take medication. I found it really easy to forget time. It was also helpful to keep track of things since I needed to take an aspirin 1x a day, but was not allowed ibuprofen. It was the most useful when waking up in the middle of the night with pain to know if it was ok to take more medication or not.

TWO DAYS AFTER SURGERY
This was the most painful day for me. I was pretty surprised.

GOING BACK TO WORK
If and when you are ready to head back to work, you are likely off of narcotics. Pain management is still going to be a pretty important part of your day. I chose to add tart cherries into my daily smoothies and/or taking additional tart cherry supplements. Why? Basically they are close or as effective as NSAIDS for inflammation. They also taste awesome, so it is hard to really complain about eating something that is delicious and helpful.

PHYSICAL THERAPY
PT is not fun. PT is going to make you do unfun things so that in the future, you can do fun things again. Do your PT. Listen to your therapist and be honest about your pain. Just because you could do ____ before surgery does not mean you can do it now. You need to rebuild muscle and it takes weeks to gain back what you lost. Ice after PT is probably my favorite part of PT. Ice is your new best best friend.

DEALING WITH BODY CHANGES
You have stopped being able to do every form of exercise - congrats, you have loss muscle mass and gained weight. There is some of this that you can control and then there is the lure of potato chips. First off, cut yourself some slack. Then realize what you can and can't change. For me, I decided to make a few dietary changes and deal with the rest of the fall out.

- I cut out sugar and cream out of my coffee (hard at first)
- avoid foods that are easy for me to over eat (see potato chips). I asked for a house-wide ban.
- try to make sure there was green veggies at every meal
- breakfast became a green smoothie

None of this caused me to loose weight, but it did help prevent me from gaining more. Normally I don't talk about such things, but if you having surgery on a joint, the last thing you want to do is put more strain on it. Excess weight = strain.

The other great part of going to PT is that if you are anxious to get to exercise again, you can work with your therapist to be able to add more movement to your daily routine. I got really stoked to be able to do plank again so I could start rebuilding my back and core strength, but I only felt comfortable doing so after working with my therapist to make sure I could do it safely.

So there you have it, everything I wish someone told me ahead of time and then some. I hope you never need to use this info, but also feel free to ask more questions.