"My Daughter Has Celiac, But She Wants To Be Like Everyone Else"

It happened a few months ago when an eight-year-old girl from the Neve Yaakov neighborhood in Jerusalem sent a letter to Mayor Moshe Leon. She wrote that her siblings enjoyed receiving the candy bags he distributed to children in Jerusalem for Simchat Torah. "But I didn't enjoy it," she added, "I was a bit tempted because I'm not allowed to have gluten, and I couldn't even eat one candy." The girl concluded her letter with: "Surely there are many other children who are not allowed gluten. I would be happy if next time there would be at least one thing I can have."

She didn't expect such a warm response. Shortly after, the mayor sent her a reply letter, along with a package of gluten-free candy, promising: "In the future, when we distribute gift bags, there will be candies suitable for those sensitive to gluten."

This story continued during Chanukah when the girl was surprised to receive a special holiday package from the mayor, with gluten-free candies and a large balloon attached.

The story went viral and reached the ears of Esty Erlichman, a leading advocate for raising awareness about gluten issues. "I myself have a child with celiac disease who cannot eat gluten. I was so moved by this gesture. I'm sure Moshe Leon, as mayor, has done much more important and substantial things, yet what touched the public was that he brought a cellophane bag with gluten-free waffles and cookies. It shows how important it is for us to think of others. So why should this only happen in such cases? Why isn't there initial consideration for celiacs everywhere? Why don't we as a society always care for them?"

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Lack of Awareness

Esty, a parent coach and integration kindergarten teacher with a degree in special education, shares, "Over the years, I've encountered many cases of kids sensitive to gluten. Parents would consult with me, and I certainly understood there's an aspect of coping involved, and what's crucial is mainly the parental mediation. This topic intrigued me greatly, and then one day it reached my home when my six-year-old daughter was diagnosed with celiac disease. It wasn't a surprise, as we identified some digestive sensitivity since she was born, but previous tests showed negative for celiac. So we were indeed surprised when she was finally diagnosed as celiac."

During this period, when her six-year-old daughter became a celiac, Esty started to learn more about the issue up close. "I noticed an interesting phenomenon – 20 or 30 years ago, we hardly heard of celiacs, but suddenly it became so prevalent and common. Almost every building has a family with a gluten-sensitive child, and lately, we hear about more and more adults being diagnosed with celiac, even at the age of 50 or 60."

Esty claims there are various reasons mostly tied to increased awareness of the issue. "But along with the diagnostic awareness rising over the years," she says, "unfortunately, awareness of the care that should be given to the sensitive population isn’t rising."

Why do you think this population needs special treatment?

"Let me give you an example," she says, choosing to talk about the world of yeshivas: "Take a yeshiva boy who is supposed to eat three meals a day in the yeshiva, and repeatedly finds himself struggling, since the meals are based on foods with gluten. In Shabbat kiddushes or various events, he sees everyone eating burekas, rugelach, and cholent, with nothing he can taste; the only thing he can have is a cola. I'm not saying the entire menu needs to change, but it would be enough to have a few foods suitable for the sensitive, too.

"Even in kindergartens and schools, there's a noticeable high lack of awareness. Often, snacks like Bissli are sent for birthdays, or cakes baked for events or parties, not considering there might be a celiac child in the class. These kids find themselves in a situation where they're really tempted. Some can't resist and taste the food distributed. When it comes to gluten sensitivity, often the body's response isn't immediate, meaning – they won't develop a severe allergy or need an EpiPen, but it does harm them. By the way, most snacks are also safe for kids with celiac since most don't contain gluten. So why stick with Bissli every time? Opt for chips, Cheetos, Pops, Doritos, Bamba, Dubonim, and more."

(Photo: shutterstock)

Putting On 'Gluten Glasses'

So what do you propose to do?

"Above all, I recommend increasing awareness – simply being more considerate of them. Not treating them as sick, miserable, or weak children. I don't mean that. On the contrary, treat them as a regular population, because they really are, but just like a large part of the population needs glasses, they also need 'gluten glasses,' and they want to wear them with respect.

"We simply need to think ahead. Honestly – it’s not hard at all to make sure that at the synagogue's kiddush, there will also be potato kugel and not just noodle kugel, or that the kindergarten hands out chips instead of Bissli. I’ve heard so many mothers say their children don't want to go to class or avoid eating at friends' houses or participating in kiddushes, because they feel they can't be part of the atmosphere. As a mother, when someone calls to invite me for Shabbat, I find myself hesitating because of the celiac, then asking them to think together about the menu, and also lugging my daughter’s bun from home and a few special products for her. It doesn’t take much to change this feeling, just a bit of thought and minimal respect. Really, no more."

Esty emphasizes that the awareness shouldn't only be heightened among friends and surroundings but also from various companies, food businesses, and restaurants. "Not everyone knows, but abroad for example, there are many restaurants where as soon as you sit down, the waiters ask if you want a gluten or gluten-free menu. It's just part of the procedure, and almost all the dishes can be served in both ways. Someone told me she signed up for a course abroad, and one of the first questions she was asked was whether she is sensitive to gluten, because they wanted to ensure the refreshments offered would also be suitable for celiacs. That doesn’t exist here at all. People with celiac have to fight to get food suitable for them, and it’s unjust."

On the other hand, you can see that stores have many gluten-free products – crackers, pretzels, various cereals, and so much more!

"True, there are companies that produce gluten-sensitive products. Among others, this happened after the issue was raised in the Knesset a few years ago. For instance, the company Osem makes pretzels and Petit Beurre cookies that look just like the regular products, even with the same packaging. The taste is almost identical, except they're marked boldly ‘gluten-free.’ Today, almost all products are available for those avoiding gluten. You can even find pizzas and cookies of various kinds. I don't think anyone should abstain, but the problem is the prices are very, very high. For example, if you want to use flour that is relatively similar to real white flour, you have to pay 14.90 shekels for half a kilo. Let’s not forget that this isn't a luxury, but the most basic food – bread. Some families have one celiac child, and they manage, but what about families with five such children?"

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A Visionary Struggle

So maybe the fight should indeed be to lower prices?

"True, there were quite a few attempts in the past to lower prices, partly through the Knesset. Eventually, the only success was lowering the price of a certain type of flour that became cheaper, but it isn’t tasty enough. Most of those sensitive to gluten don’t use the cheaper flour.

"The main problem is the companies fear that people will exploit the lower prices, consuming the products even if they aren't celiacs, just health enthusiasts or those trying to exploit it for certain diets."

Esty emphasizes that she believes changes can be made to allow health funds to issue a 'gluten-sensitive seal,' in exchange for waiving medical confidentiality. Concurrently, she is in contact with numerous companies in the market, aiming to influence them to act in every possible way – to add more gluten-free products and offer them at as low prices as possible to the public. "I want to emphasize that the struggle is conducted solely in pleasant ways. I never try to make noise, shout, or shake things up, but simply explain the situation we’re in. I believe a company that produces food should be proud of thinking about such a large and central population, and celiac sufferers shouldn’t be embarrassed by it but enjoy the right products happily and without fear. Institutions and schools can also join this mission. It shouldn't burden them, but just the opposite – kids should feel privileged learning in schools that show attention to such issues, where schools operate with heart and soul.

"I want to emphasize that all product types have substitutes, they all exist, but they're very expensive. However, the heart can't be manufactured and can't be bought anywhere in the world, and that’s exactly what they ask – see us, think of us at any event with food, let us feel included. We're healthy, and just avoid gluten. That’s all.".

Do you believe the struggle will succeed?

"I believe it’s a process. I’m starting the work, and my goal is for things to progress on their own. I believe that in a few years, we'll feel like it’s a distant dream when we remember there were days when gluten alternatives weren’t a natural part of the products on the shelves.

"By the way, today there’s already the ‘Celiac in the Community’ organization that works a lot to lower prices through periodic sales, as well as events and conferences for those dealing with sensitivity, but it’s just a drop in the ocean for a basic need."

Finally, Esty shares a particularly moving story: "A few days ago, my daughter was invited to a friend’s house, and after a long time playing there, I called to check in. The mother said, ‘What a celebration we had today, we did a baking activity, made a chocolate cake with sprinkles, and Ruti was really enjoying and busy with it.’ I felt really bad, imagining Ruti's experience of making a cake she can't enjoy after baking... I dared to ask: ‘Do you remember Ruti is sensitive?’ and she said to me so simply: ‘Of course, for her we made a cake from Passover recipes with potato flour.’ I felt a huge heart, something beyond mere humanity, someone looking at Ruti and saying to her, you’re worth this attention. It demonstrated to me how simple steps can cheer up our celiacs. So why not do it?"