Permanent Passover Disease (a.k.a. Celiac)

Dear Josep,

So, as you know, one of the Distressing Things™ that happened in my family this summer was the discovery that my middle child probably has celiac. He underwent the endoscopy a week ago, and we won’t have definite results until they finish analyzing the biopsy (which will take another couple weeks), but in the meantime all the signs point to celiac and the doctor told us to commence a gluten-free diet.

Now, I have several family members who are not eating gluten, and Eitan actually tried it for a month earlier this year to see if it would help with his migraines. (Unfortunately, it didn’t.) So I had the basic idea of what would be involved and what we could do to replace gluten in R1’s diet. But here’s the thing: those family members don’t have celiac. They are just gluten sensitive.

What’s the difference?

Well, celiac is not a sensitivity, or a food allergy, or an intolerance. It is an autoimmune disease. The difference is kind of technical, but the point is that for a person with celiac, even the tiniest particle of gluten can trigger the autoimmune response that damages the intestines.

So it’s not just that R1 can’t eat things that contain gluten; he can’t eat things that contain traces of gluten, or even may contain traces of gluten. And you’d be surprised to learn how many things may contain traces of gluten!!! (Our favorite brand of hummus, for one. 🙁 🙁 🙁 ) We have to check all the labels. We have to be very careful not to contaminate things like peanut butter or hummus by spreading it on bread and then dipping the knife back in. And even seemingly innocent products like dried beans or rice can sometimes contain traces. (Fortunately, we can still use them if we check them over carefully and rinse them before cooking.) We had to strip our cast iron pans through high heat to burn off whatever gluten particles might be absorbed into them, and replace our wooden cutting board and cooking utensils.

Hmmmmmm. What does this all remind me of…?

…You should know the answer to this by now. 😛

PASSOVER.

(If you guess “kashrut,” you get half a point! 😉 )

As I’ve mentioned, the reason Passover involves such intensive preparation is the prohibition against eating chametz–leavened products (like bread) made out of one of the five grains.

All these--off limits!
All these–off limits!

We have to clean our houses and kasher our kitchens to assure that not a tiny speck of wheat, barley, etc., will find its way into our food. Sephardim, at least, are permitted to eat things like rice, corn, or beans, as long as these have been produced somewhere where they wouldn’t have any contact with wheat, and have been carefully checked and picked over for the presence of other, forbidden grains before the holiday.

The only differences, really, are that we are supposed to eat matzah on Passover (which is unleavened bread made from one of the five grains), and that the rules about Passover were developed before the advent of such modern cooking materials as stainless steel, and therefore are more strict about absorption. I can cook a piece of French toast in a stainless steel pan, and then scrub it clean and use it to cook an egg for R1 with no ill consequences. If I wanted to use it on Passover, however, I’d have to kasher it first.

…And also, Passover is just a week. Celiac is forever. :-/ :-/ :-/

The thing is, if you haven’t figured this out yet, Jews have a special relationship with food in general and with bread in particular. Bread has a special status in Jewish law: it has its own blessings for before and after eating; we must wash our hands before eating it; and its presence is required in to define a meal in halakhic terms (so if we are required to eat a meal, such as on Shabbat or holidays or at a wedding, the meal must contain bread to fulfill the mitzvah). I think this is because of its status as a staple food in this part of the world.

So this makes things a little tricky for religious Jewish celiacs. They can’t really eat anything that halakha defines as bread, and therefore they can’t fulfill the requirements for this mitzvah… with one notable exception.

Oats appear to be a bit of an anomaly both in terms of their chemical composition and their halakhic status. As my Catholic friend Jonathan so kindly pointed out to me, there is a rabbinic controversy over whether oats are what the Biblical text is referring to. Most authorities agree that oats are the fifth of the five grains. As far as gluten is concerned, they don’t actually contain gluten, but another protein that is similar to gluten, and it appears that there is some medical controversy over whether oats are a problem for celiacs or not. Because oats are often processed near wheat, they can often be gluten-contaminated, too. Apparently some people tolerate them well (when they are gluten-free) and some people don’t. The nutritionist told us to avoid them for the first year.

But! If R1 ends up tolerating gluten-free oats, that will mean that he can have proper matzah on Passover, as well as proper bread made of oat flour that he can eat on Shabbat and holidays and such. So here’s hoping.

I tell you, I was standing in his classroom waiting to meet his teacher on the first day of school, and she was handing out candies, and when she paused and looked up at me and said, “Is this okay for him?” I was suddenly my own mother trying to inform the non-Jewish camp counselors in Pittsburgh about our crazy dietary restrictions.

I had another “flashback” to what it’s like to keep kosher in the USA when I pointed out the “gluten-free” symbol to R1 on the bag of potato chips I bought him after the endoscopy. And another when I walked into the supermarket and started examining all the products I’m used to buying to see whether they have traces of gluten. And another when I was reading the official list of restaurants with approved gluten-free menus on the Israeli Celiac Association website.

When I moved to Israel, my culinary world expanded tremendously. As a child living in the USA, there was only a small handful of options when it came to eating out. I was used to not being able to eat most places and carefully checking the labels of packaged stuff. After moving here, suddenly I could eat practically anywhere, and the entire supermarket was mine to enjoy.
the-shelves-are-alive

After two decades, I became rather used to this glorious reality.

Now, with like a third of the supermarket off-limits and a mere handful of restaurants where I can take my son without having to worry about gluten contamination… it feels very limiting. I’ve become so spoiled!

I really shouldn’t complain; thank God, because of the whole gluten-free fad there are tons of products available that R1 can have. (And I was surprised and relieved to find that they’re not always obscenely expensive.)

I am grateful to live in a modern age where we have access to such a wide variety of foods and don’t need to rely on wheat to provide nutrition. But this is going to be more of an adjustment than I anticipated. :-/

In the meantime, R1 seems to be taking it quite well. I think he’s looking forward to not having constant stomach pain.

Love,

Daniella

3 thoughts on “Permanent Passover Disease (a.k.a. Celiac)

  1. Refuah shelaymah, of course, but thought you might want a challah recipe…my favorite oat challah recipe is from Levana Kirshenbaum. I sure you can find it on the internet……just scroll down thru all the various options in her post for gluten free bread….the challah version has eggs, and none of the other non-gluten flours (soy or rice or whatever) It’s very tasty! Hope you enjoy!

    1. Thank you! The nutritionist told us to avoid oats for the first year, and then reintroduce them and see how he tolerates them. So in the meantime I’ll need to make do with non-hamotzi “bread” for him (and bake regular challah for the rest of us), but I hope to be able to change that at some point…

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