This story was produced by the Glimpse Correspondents Program.

“Never heard of it,” said Doctor Amzallag in French, closing a huge medical dictionary with a thump that released a cloud of dust over his wide desk.

“I’ve heard that a lot of information about it was discovered recently…” I said timidly. “Maybe your dictionary isn’t up-to-date?”

“Not possible,” said Doctor Amzallag, looking exasperated with me, the young know-it-all American perched on his examination table. “I mean, I can refer you to a nutritionist if you want. But I promise you, it’s not in the medical dictionary.”

He looked up to glare a little as he scrawled an illegible name on some paper. “And if you want to avoid being sick and getting the flu again, you should be eating a varied diet…including bread,” he said with emphasis.

That was when I gave up all hope of trying to convince my Parisian doctor that I was gluten intolerant.

* * *

Gluten is a protein found in wheat (including durum, semolina, spelt, kamut, einkorn, and faro) as well as in rye, barley, and triticale. This protein causes a lot of trouble for a lot of people. For those with Celiac disease (CD), a lifelong autoimmune condition, gluten damages the small intestine, creating a toxic reaction that does not allow food to be properly absorbed. Even small amounts of gluten in foods can affect those with CD and cause a diverse range of symptoms. People can also experience intolerance to gluten. It’s a milder condition, but the symptoms can be equally unpleasant. Trust me, I know.

According to AFDIAG (Association Française Des Intolérants au Gluten), France has the same rate of people who are gluten-sensitive as most other countries. It’s a number that’s rising — in the US, for example, one person in every 100 is now thought to be affected. Yet in France, AFDIAG has estimated that only 10-20% are actually diagnosed. Many others will continue to suffer “mysterious” symptoms, and, if they have CD, cause irreversible damage to their intestines with each morning croissant.

While you can get a gluten-free Big Mac in nearby Spain, France is far behind its European neighbors in awareness of the disease. But that’s changing, thanks to a campaign led by a small number of people, one gluten-free macaroon at a time.

* * *

I was already living in France when I accepted that I was gluten intolerant, after years of worsening symptoms and my stalwart refusal to acknowledge what I saw as a death sentence.

My skin burned and hurt all over. I felt hot and nauseous. And worst of all, the symptoms dragged on for more than 48 hours.

The “last supper” had consisted of cookies brought to work by my French boss. I ate more than I should have because the cookies were heaven — big lumps of organic chocolate in fluffy pastry. My reaction to them, however, was hell. Half an hour after I had finished the last crumb, my skin burned and hurt all over. I felt hot and nauseous. And worst of all, the symptoms dragged on for more than 48 hours.

In my feverish state, I finally accepted what a specialist had told me, that this pain was attached to what I was eating, that each bite containing gluten was hurting my body. Giving up wheat suddenly didn’t seem that bad as long as I’d never feel that pain again.

And so began my life as gluten intolerant…in France.

“No more baguettes?” my best friend moaned when I told her. I may have accepted it, but for a French person, this life wasn’t worth living.

* * *

France is a country that adheres to tradition with an iron will. Proud of their culture, the French are often resistant to change of old structures and habits, especially in the kitchen. Culinary traditions — like the pairings of certain wines with certain cheeses or the order or hour of the meal — hold great importance. The baguette, the madeleine, and the éclair are all parts of the national identity. These are huge cultural barriers that make life difficult for gluten-sensitive people in France.

“When I was diagnosed, I remember thinking ‘This is going to be difficult,’” said Marine Lauze, a young Frenchwoman who is gluten intolerant. “Bread, pastries, sauces made with a wheat flour base — these are dishes that we are really attached to in France.”

In the US, we’re okay with change. No one blinks if you want to swap your fries for a salad or vice versa. Nobody seems to mind when I ask for my veggie burger without a bun. In France, on the other hand, I was surprised to discover this can cause a scandal.

I have had a horrified waiter balk when I asked for soup to be served without croutons (“But…mademoiselle, it’s not good like that!”) and serve it with croutons anyway. I also caused uproar when I asked staff to “please hold the bun.”

Little did I know, this might have been because I had breached cultural codes of respect for the chef. After several years of living in France, I have learned that asking a cook to change a recipe can be considered an attack on his kitchen savoir-faire, which makes things even more awkward for those who have to ask.

* * *

While kitchen closed-mindedness is rampant, there are others who are much more open. Change is coming, in the form of the hot, gluten-free baguettes that Sylvie Do takes out of the oven every Saturday at Bio Sphere Café.

The tiny restaurant — which opened as an organic eatery in 2010 — has been 100% gluten-free since May 2012. That’s when Sylvie’s months of experimentation resulted in a tasty gluten-free dessert crepe. She had already eliminated gluten from the rest of the menu.

“It’s chemistry,” she said. “The crepe recipe might be simple, but it was the hardest to find a gluten-free recipe that tasted good.”

Sylvie actually first found out about CD shortly after she opened her restaurant.

“The initial concept was to make authentic French recipes with fresh and organic ingredients,” she said. “We had Breton crepes on the menu, which are traditionally made with buckwheat.”

Buckwheat is gluten-free. Thus, traditional creperies that serve buckwheat crepes (galettes de sarrasin) are a go-to for many French people who are gluten-sensitive, myself included. Sylvie heard from more and more customers that they had Celiac disease; she had never heard of the illness before. Curious, she researched and then bought some gluten-free cookbooks and tried out the recipes. She was dismayed with the results.

“How can you publish a cookbook filled with recipes that are disgusting?” she said. So she set out to create her own recipes. First came one cake, then another. Her regular customers became her guinea pigs. And they loved each tasty crumble. So did Sylvie.

“I like making cakes because it makes people happy,” she said. “When I make gluten-free cakes, it is amazingly gratifying. It makes people so happy — I find it motivating. I feel like I am doing something useful.”

The difficulty? Despite having restaurant regulars, Sylvie says that it’s hard to reach out to new clients — French people who are gluten-intolerant or have CD. After years of living without pastries, many are resigned to their fate and would never think to do a Google search for “gluten-free” and “cake.”

But they should, because little by little, things are shifting.

* * *

AFDIAG, the French association for those who are gluten-senstive or who have CD, is also helping foster this shift in awareness. I caught up with Catherine Remillieux-Rast, who serves as the organization’s vice president. Catherine became involved when her baby daughter was diagnosed gluten intolerant by a forward-thinking doctor almost 25 years ago. Catherine and several others founded AFDIAG to bring together other people with the illness.

The association may still be small– it only has 6,000 members today as opposed to much larger groups in neighboring countries– but it has achieved a lot in the past quarter century by steadily lobbying the French government and big business. Concurrently, other European groups have also been working to help those living without gluten and some of their initiatives have since been adopted all across Europe, including in France.

In 2003, for example, the government adopted a law requiring companies to label all ingredients in their products. More recently, one big supermarket chain agreed to start carrying gluten-free products. After that, others were soon on board.

“For the first few years, my relatives would always say ‘oh, so you are still doing that gluten-free diet thing?’”

Another initiative resulted in a partial government refund on gluten-free products for people who are diagnosed with CD. This is the case in many countries, including the US, where you can get a tax deduction for the extra costs due to your gluten-free diet. But to cash in on this program in France, you need a doctor to sign your paperwork. As Catherine explained this to me, I thought of my encounter with Dr. Amzallag. The doctor’s attitude was nothing I hadn’t already encountered in France, but I was surprised to hear such blunt disbelief coming from a medical professional.

Not surprisingly, AFDIAG’s goal for 2014 is to launch an educational campaign aimed at doctors. Sometimes, Catherine gets frustrated with the lack of awareness.

“It’s not right that it is still our group doing so much after 25 years in existence,” she said. “If doctors were misinformed back then, okay. But now?”

She said her organization is constantly seeking the answer to “Why is France so behind?” So far, they haven’t found it.

* * *

A few weeks ago, I was chatting about this subject with François Tagliaferro, the founder of Helmut Newcake, which is arguably the first gluten-free patisserie in France. Over tea and a melt-in-your mouth sticky toffee cupcake, I told him about my experience with Dr. Amzallag.

“It’s normal,” he confirmed. “Most doctors don’t know about it.”

His wife Marie is from a “family of doctors,” but no one had heard of the allergy when she was diagnosed a few years ago. The diagnosis was at first crushing; she was working as a pastry chef at the time. Her entire work environment — at Lenôtre, one of France’s most prestigious bakeries — was making her sick.

Disheartened, the couple decided to move abroad for a few years. They first tested gluten-free products while living in England and were surprised that they were actually good.

“There’s an idea in France that gluten-free means it’ll taste like cardboard,” François said.

Soon, his wife, who missed baking, began to experiment with her own gluten-free recipes, just like Sylvie Do was doing at Bio Sphere Café. Some of them turned out well. Really well. From that sprung the couple’s crazy idea, to open a completely gluten-free bakery in Paris.

“The bankers didn’t know what we were talking about,” François said. “Neither did our friends.”

Helmut Newcake was a risk. It turned into a success. When they first opened, François said they had a lot of customers who would actually cry when — like Proust — they’d eat a madeleine and, for the first time in years, be able to capture the taste of their childhood.

Moreover, the chic café seems to serve almost as a community center for people with the illness: It is piled with stacks of gluten-free cookbooks, and François has become somewhat of a resident expert on the disease.

François says he often has customers who preface their order with: “Well, my doctor says that I am allergic to gluten, so I can’t have wheat, rice, potatoes…”

He often has to explain to surprised — and, I imagine, relieved — customers that gluten is only found in wheat and a few other flours. Potatoes and rice are safe. Still, running a gluten-free bakery in France isn’t without challenges. The biggest one, said François, is fighting the prevalent idea that “gluten-free” is just an American diet craze.

After a bunch of good press, a recent article in the trendy “Obsession” section of French newspaper Le Nouvel Observateur criticized Helmut Newcake. It continued to say, sneeringly, “if our grandmother didn’t make cakes out of rice, it’s because she knew they weren’t good.”

François called the editor and calmly explained that their restaurant was a response to a real medical problem. Helmut Newcake’s customers face a lifetime without gluten; the “fad” won’t dry up anytime soon. The editor wasn’t convinced.

As François recounted this story, I thought about my own experience. I once picked up a copy of the popular French women’s magazine Figaro Madame and saw an article all about people who fabricated their allergies to get attention. “We all have a friend who ‘can’t eat gluten,’” the journalist wrote mockingly.

I was extremely frustrated. Sure, there may be some of these people in the world, but in my opinion, the article made this population seem disproportionately large. To me, it seemed like the real problem was not false allergies, but the people who refused to believe that the allergies were real. Marine, a young Frenchwoman who is gluten-intolerant, has also experienced this in France.

“For the first few years, my relatives would always say ‘Oh, so you are still doing that gluten-free diet thing?’” she said. “It all came from American celebrities like Gwyneth Paltrow who try gluten-free diets to lose weight.”

Catherine, the vice president of AFDIAG, said that this misperception is one of the most difficult parts of having the disease in France. That’s one reason AFDIAG strongly advocates for people to get tested before they stop eating gluten. With diagnosis and blood test results, people have “proof” of an actual illness.

“It’s even worse because people who have Celiac disease are often thin [because the disease doesn’t allow you to digest properly],” Catherine said. “People will assume that you are on a diet and will criticize you for it. This situation can get really awkward.”

Food and the art of eating is such an important part of French culture that people strongly turn up their noses at diet crazes. Food is more often associated with pleasure than with health. And for many people, it is hard to visualize CD.

“Celiac disease is an illness,” Catherine said. “But people are used to curing illnesses with medicine. For celiacs, there is no medicine. The only treatment is to stop eating gluten.”

* * *

Bringing up the problem is so difficult that I find myself avoiding it when I can. Sometimes I just get really tired of explaining that, no, I haven’t died yet from lack of croissants and, no, I haven’t thrown myself into the Seine yet either. Instead, I’ll simply say, “No, thank you” to the offered pastry and accept the quizzical, almost hurt, look from the bearer.

With acquaintances and colleagues, it’s easier.

But I had to tell my friends. Because of the cultural hangups that I had experienced, I was initially afraid they would stop inviting me to dinner when they found out I was gluten intolerant. But, to my surprise, the invitations kept coming, and so did the dinners. In truth my friends make a bigger effort creating elaborate gluten-free dishes than I do.

I’ve had friends trek across Paris in search of gluten-free flour to create delicious quinoa-and-chocolate cookies. Other unlikely candidates have made their first dubious forays into organic groceries on my behalf. Another friend — the master behind olive-flecked polenta one night and Thai noodles with fresh cilantro another — says he loves cooking for me because it is like a “Top Chef” challenge.

I was moved to tears when, upon arrival at a friends’ house, she beckoned me towards a heavily laid table, announcing, “If you wanted, you could eat everything here.” She beamed as widely as I did.

And my friends don’t just make one separate dish for me. Often, in grand sharing tradition, my hosts proudly proclaim that everyone will eat gluten-free…and everyone will eat well.

This makes me believe that the biggest change will happen as the French come into contact with friends or family members who have been diagnosed. The evidence is there. Sylvie Do started experimenting with gluten-free recipes after meeting numerous customers with the illness. Catherine’s life changed when her daughter was diagnosed and she went on to found AFDIAG.

And it’s because of François’ wife’s diagnosis that you find him behind a counter piled with gluten-free delicacies five days a week. Because sharing food — gluten-free or not — is one of the most loving gestures a French person can make.

[Note: This story was produced by the Glimpse Correspondents Program, in which writers and photographers develop in-depth narratives for Matador.]

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