A Tale of Two Celiacs (Part One)

“I was rounding up all the gluten in the world and launching it into space where it can’t hurt us ever again.” – Deadpool
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Saving the world from gluten. (Photo credit: The Sequence Group)

Gluten: today’s supervillain of the food world

A few years ago, during my food truck days at the Madreat food festival, I had a very real, visceral fear of one kind of customer: the Gluten-Free Food Faddist.

Just imagine me, at the height of the lunchtime rush hour, extolling the virtues of our homemade siopao (Filipino baos) to curious customers, breathlessly reciting the ingredients by heart, and then just as I thought I’d made a sale, I’d hear two words that would crush my spirit:

“¿Tiene gluten?”

With clenched teeth and head bowed, I’d then admit…yes, our baos have gluten.

The gluten-free customers’ reaction would be swift – they’d shake their heads and walk away as if I’d just admitted that our food was laced with rat poison. So I’d try to lure them back:

Wait!! You’re not celiac right? Then you’re ok!

Have you seen Cooked on Netflix?

Gluten won’t hurt you!

Come back! Come baaaack!

But it was just futile. After too many frustrating encounters over the years, I’ve pretty much conceded defeat against the fighters enlisted in the War Against Gluten, as facts are simply powerless against the widespread propaganda demonizing this innocent protein.

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Guilty of many many “Sins”

 

So what exactly is gluten, apart from being the latest leper of the food world since MSG?

Gluten is a storage protein found in grains like wheat, rye, oats and barley, and is the basic component that gives bread its elasticity (an insight into its etymology from the Latin word for “glue”).

Gluten is also in soy sauce, ice cream, ketchup and beer – so basically, giving up gluten for weight loss reasons (or to keep up with the gluten-free Kourtney Kardashian) is kinda like consciously giving up on life.

 

Celiacs of the world

Yet one person’s fad diet du jour is another person’s lifelong struggle.

Celiacs – people who are extremely intolerant to gluten –  make up a small percentage of the global population (and about 1% of the population in Europe and the United States). For these people, ingesting even a tiny bit of gluten can lead to serious consequences.

Amidst the anti-gluten hysteria, I’ve often wondered about what celiacs and patients with severe food allergies thought about the gluten furor. On the one hand, at least gluten-free products and establishments are more readily available for them nowadays, but on the other, perhaps Celiac disease may not be taken as seriously when the likes of Miley Cyrus, Posh Spice and Gwyneth Paltrow have claimed that shunning gluten is their secret to staying in shape.

(In fact I know and work with a lot of chefs, restaurant owners and servers who’ve developed a severe allergic reaction to gluten-free customers, that they sometimes mistake an actual celiac as just another food faddist.)

I finally had the chance to ask two wonderful women – two friends of mine here in Madrid – for whom going gluten-free is not a lifestyle choice but an imperative to save them a trip to the emergency room.

Here’s the first of my eye-opening QnA:

MOODTHY A., 38 year old digital product designer, programmer and founder of Wyld.Media

KM: What is your condition that makes you intolerant to certain food?

I am a celiac, so I can’t have anything with gluten in it. More annoyingly, I have a separate but very, very strong atypical immune response reaction to anything that is wheat-derived. Even beer near me in a stuffy room or wheat in mixed pet pellets near me can trigger an asthma attack.

KM: What type of food and drinks can you not consume?

There’s too many to list. Anything that contains wheat, gluten, dairy, soy, seafood, fish or traces of those. Even dairy-free chocolate contains soy-lecithin, and often, raw chicken fillets, “100% natural” chorizo, and most wines will contain dairy derivatives.

KM: Could you describe your body’s reactions if you accidentally ingested any of these?

I wind up in ER getting my stomach pumped and asking for a cortisone drip, because the last time I had an accident –  a 100% allergy-free food cooked in a common use oven, I was in bed for almost 5 days, so weak that talking was painful and exhausting and it took all my energy to eat grapes and drink water.
It took me about a week after that to get strong enough to walk out of the house. Just going to the bathroom and back was draining. My gut wasn’t digesting properly for months after that. I had all kinds of “female” problems that tend to be related to imbalanced bioflora, and my joints ached with autoimmune arthritis. And this is just a reaction from probably one speck of flour or something in an oven fan. I can’t even allow myself to imagine what would happen if I actually ingested an allergen today.

KM: When did you find out you had this condition?

I’m an emotional eater, so I was probably hitting up the gluten big time. Pasta! Bread! Bagels! Krispy Kreme! Then I developed symptoms that progressively became more scary and non-ignorable sometime in 2009. I had “weird” symptoms like unexplained rashes and bouts of extreme fatigue or swollen glands that seemed to come and go years before, during times when I was stressed.
I was very resistant to the idea it was an allergy for some reason, and it seemed more “obvious” that it was “hormones in meat” or “pesticides” on vegetables. So I did a month or so of veganism, then half a year of 100% organic food – which was expensive – before starting food elimination diets and then getting tested.
That said, there are some really bullshit “tests” out there. I paid a deposit and took a holiday off work to get a food allergy test in a high prestige health food store on Cornmarket Street in Oxford, and had a lady bring an electronic box that supposedly measures electrical currents running through me as I held vials of water with food substances dissolved!

KM: What precautions, lifestyle changes have you had to adopt since being diagnosed as celiac, that most people  take for granted?

Cooking every meal I eat is an obvious time sink, as is shopping for food. I think a lot of people really can’t relate to the amount of time that comes from cleaning up after cooking, storing food, keeping track of items in the fridge, cleaning up messes from spilling things, replacing extractor fans, and even my oven needs deep cleaning regularly.
Cooking on a Wednesday night- when the train from work has been delayed by 2 hours and you still needed to stop for groceries – isn’t the same as cooking for friends on the weekend: you’ll spill more things because you’re starving and rushing to eat.
When it comes to meal planning on a very limited diet, you don’t just crave variety, it’s important to get as much nutrients as you can. The overall cost of food is higher, and I have to buy pretty expensive supplements too, because the cheaper ones still have soy, dairy or other things I’m allergic to in them.
As for carrying food – any form of travel that requires me to be out of the house for hours needs meal prep done in advance for all the meals I’ll need, but I also need to consider if that food will spoil on the trip or if it can be stored.
Travel is not my friend anymore. When we do travel, a car is better so I can have an ice box.

KM: What food and nutrition blogs do you follow, and would like to recommend to anyone who wants to learn more about this issue?

“A year of slow cooking” was a lifesaver. Everything on that site is (or was, in 2009) gluten free and could be dumped in the slow cooker. It gave me back a little bit of time and energy.
Gluten free goddess posts lovely recipes. But the thing with food blogs is that they are not everyday recipes. They are there to look “Instagram-worthy” and have too many steps and expensive ingredients. I would definitely not recommend following a food blogger to anyone new to allergies, apart from A Year of Slow Cooking.
Because I can’t have soy or dairy or most grains, raw vegan and paleo blogs often offer nice alternatives to many popular treats. (Yes, I tried those diets. No, they didn’t help). Otherwise, by now, I’m proficient enough to change any recipe I need to and use Pinterest for inspiration.

KM: What’s your take on the gluten-free global trend? How does it impact those who have legitimate food issues?

It’s mixed. On one hand, it’s awful being in the awkward situation where someone insists a thing that is definitely NOT gluten-free is ok for me to eat because their “mom does and she’s a celiac”. On the other hand, a lot of new products that were not available to me as quick snacks and desserts before now have enough demand to exist.
For example, instant microwavable quinoa bowls that I can find in most Carrefour stores, cashew nut ice cream, raw cocoa and almond butter bars, even gluten-free beer, dairy and soy free blue cheese that really smells and tastes like blue cheese, coconut yoghurt, coconut alternatives to soy sauce (coconut aminos).
A lot of products I couldn’t imagine finding this side of the Atlantic in 2010 are available now in Madrid, or at least via Amazon.co.uk, and the popularity of raw, paleo and “gluten is the devil” diets is probably why. I do worry about sustainability (cashews and coconuts have some serious air miles), and that food purity is replacing sexual purity as a kind of snobbery and virtue signalling.

KM: What are your biggest concerns about fad diets?

I very much worry that people are self-medicating with diets believing that if they cut out enough things, they’ll get results, instead of instead of getting thoroughly checked and treated.
There are people claiming that things like depression and cancer can be reversed with a diet change. There’s a disturbing neurosis and paranoia about the “medical industry” among health food communities online which I think discourages people from seeking real help in favour of increased food fanaticism.
It took me about 5 years all told to find why my health was going downhill even after cutting out allergens and eating an all organic – hella expensive- diet. Had I followed the health food blogger mantra of more green juice and only getting treated by a “naturopath”, I don’t know how I would be doing right now.

 

(To be continued…)

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