if only we had a crystal ball, or could read minds, or just see into the kitchen

Prompted by this tweet,

which links to this post at The Gluten-Free Life, about said chef, I finally wrote about Casey’s wedding. And about having celiac.

This is a long one, and there aren’t any pretty pictures.

It’s hard to understand the arrogance implicit in that man’s comments – a man responsible for creating food to share.

I was diagnosed – by a medical doctor – with celiac in late 2007.

I did not want my condition to be celiac. Years before, a dear friend had gone through the process of getting progressively more ill, with an eventual, clear diagnosis of celiac. This was long before celiac was part of a national conversation, long before there was a gluten-free niche in the prepared food market, long before any restaurants had gluten-free menus.

She spent enormous time and effort educating herself, and her friends/family, and the servers/kitchen staff on rare restaurant visits. I was eager to learn enough to feed her safely. My initial efforts were sad substitutes for wheat-based dishes, but I wanted to continue to share food with her.

After a hospital stay in the summer of 2004, my own health began to deteriorate. (This was completely unrelated to the hospital stay – that’s not part of this story.) I became ill, but inconsistently. It seemed to be related to eating, but not always. Over time, my condition worsened. It sounded familiar. Naturally, I talked with my friend about this. She said it sounded like celiac, and maybe I should consider an elimination diet, or getting tested.*

As I said above, I did not want my condition to be celiac – I come from a bread-baking, stout-enjoying Irish family, and couldn’t readily imagine a life for myself without hot-cross-buns on Good Friday, bread-stuffing in the Thanksgiving turkey, homemade biscuits with soup, oatmeal-raisin cookies, or any of a thousand wheat-based recipes I had grown up with.

Throughout this time, I started to follow Gluten Free Girl. (She had no idea I existed.) We both live in the greater Seattle area. We have writerly histories. We are the same age. We each met and fell in love with our soul mates later in life. We married these true companions in July 2007. And we both love food. Of course, there are many ways we are different, and she still has no idea I exist, but reading Shauna’s blog, I felt understood, I felt safe, I felt brave. Before that, I had no idea how I would navigate this gluten-free life.

But I did. I figured it out. And I eat very well. When I go out, I eat very carefully.

I am inspired by Shauna’s philosophy that to be gluten-free – even by force – is an opportunity. There are so very many lovely and delicious foods out there that are naturally gluten-free, why would I ever sweat missing the ones that are now poison to me?

It has been many years since I have eaten gluten on purpose. I don’t miss it. What I sometimes miss is being able to share a family recipe the way I remember it, especially around holidays. But the true fact is, not much is actually the way we remember it. And I’ve become really adept – with Shauna’s help and encouragement along the way – at creating lovely new foods to share for holidays, foods that love me back.

And now, the story that came up for me, when I read the tale of the chef assknock who deliberately feeds wheat-based pasta to restaurant patrons who request gluten-free meals.**

I attended a wedding last summer. My cousin married into an Italian family, and, as you might expect, the food was glorious. There were a variety of food concerns with guests, and tables were clearly labeled with menus and the staff was very aware.

I wasn’t worried. We had celebrated the happy couple’s engagement a few months earlier, at a local Italian restaurant. When I called the restaurant the day before to let them know of my dietary needs, I wasn’t looking for them to change any of their dishes. I simply wanted to understand what they were making, so I could know what would be safe for me.  I was pro-active, because I didn’t want to interrupt the wait-staff in the midst of serving a sit-down, family-style meal to 100 people.

The restaurant – closed and serving only this family event on that day – was all kinds of accommodating. The event manager asked me to identify myself to the hostess when I arrived, and they would be sure to bring dishes safe for me, and make clear what was in each dish on the table. They honoured this promise completely, and I had a thoroughly enjoyable evening.

On the night of the wedding, I had confidence in a similar experience. The first two courses were magnificent – an antipasti plate, and calamari. The wine and San Peligrino were flowing, conversation was light and happy. None of the service was rushed and we had time to table-hop a little to connect with family and friends. This is exactly what I had been looking forward to for months.

When the pasta dish came, I didn’t think twice. I had seen the printed menu, and I had gone to the kitchen myself. I had an (interpreted) conversation with someone’s Nonna, and was assured that the sauce had no hidden ingredients. In fact, she was a little offended that I asked – why on earth would anyone put anything but tomatoes and olive oil and garlic and herbs in tomato sauce?

Why, indeed?

So. I believed I was getting a plate of rice penne, with fresh tomato sauce. And I dug in. I was impressed with the texture, and thought to myself, “Wow, the Italians really know what they are doing with gluten-free pasta.” I was reminded of Shauna’s honeymoon in Italy, and how she found it unexpectedly simple to eat safely there. I ate half the plate, and only slowed down because I was saving room for the several-more courses of food to come.

Within minutes I felt off. Ed wondered if we should leave. I wouldn’t hear of it. As I said, I had been looking forward to this huge gathering of friends and family for months. Within 30 minutes, I was doubled over in pain. After some frantic checking, we confirmed (by pasta shape) that my plate had been wheat pasta. Ah, that texture thing was my first sign. Eventually, I had to be carried out of the wedding, making the scene I had hoped to avoid by leaving earlier. I missed my sister’s toast to the couple. I missed the first dance, and all the dances after – with my husband, my brother, my Uncle Ben (the father of the bride).

I was unable to eat much at all for the next three days – a little yogurt, some juice – while I moaned and cramped and clutched my poisoned gut. For months after, eating was painful and accompanied by a handful of several kinds of enzymes prescribed to help digest my food. It took six months for my intestines to heal, for me to trust food again, for me to look forward to eating.

My cousin and her family were horrified that such a thing happened to me at this joyful event.  They felt awful, but it was not their fault.  It just happened.

I have this question for the above-mentioned chef: I believed I was eating rice pasta. How could he possibly think this reaction was just in my head? Who gave him the jackass pill?

Others around the internet have commented on the difference between a celiac reaction to being poisoned and the anaphylactic reaction of someone with, say, a peanut or shellfish allergy. Celiac is not technically an allergy -it is an auto-immune disorder wherein the body attacks the proteins in gluten and, coincidentally, attacks the body itself – specifically the intestines.

It is sometimes simpler to call it an allergy. Most people understand the need to protect against allergies, and truly, most people do not want to hear me talk about my intestines. I get that.

Those of us with celiac have to be vigilant in protecting ourselves and speaking up for our needs.

And still, having said all that, I can understand part of where this guy is coming from: one of the most annoying things I see is someone who claims to have celiac, enjoying a (wheat-based) brownie or pizza as a fun “cheat”.

Honey, if you really have celiac, you’ll put the brownie down and carefully back away, washing your hands immediately. If you think you might be somewhat gluten-intolerant, or are avoiding gluten because you think it is healthier for you, that is fine, you can say that.

But know this: that is a different thing from celiac. It really is.

Don’t ruin it for those of us who have a medical condition, one that poses serious medical complications – now and later in life – if we ever eat gluten.

* But not both at the same time: it is not likely to get an accurate test after following a strict elimination diet. The blood test most commonly used tests for antibodies to the gluten proteins.

** I understand that he is no longer employed at that restaurant.


    • Thank you for your comments, and for highlighting the story in the first place.

      This is a post I’ve had in my head to write for some time – the rogue chef was a catalyst for the thoughts to all come together.

  • I am so glad that I know you now. This is such a cogent piece of writing. There has been anger and apoplexy over this issue all day, all over the Internet. Yours is the calmest, and thus the best, response I have read. thank you.

    • Shauna, thank you so much for stopping by. And thank you for your kind comments! The piece took a long time to get right, because I didn’t want to be reactionary.

      I had no idea what a storm had been raised by the topic – I saw your tweet in the morning, followed the two links in the post, and put my head down to write. It was likely better for me that way – less chance of getting hit by internet-shrapnel.

      And I was wrong. The post does have a pretty picture. Your new profile pic is GORGEOUS.

    • Thank you, Sunny, for your visit and comments. This topic is certainly heated for a lot of people, and that makes it hard to learn anything from each other.

      Compassion and listening go a long way. We all just want to enjoy our food, right?

  • I just found this site through the Twitter uproar regarding this ignorant chef… I think you have done an excellent job addressing this issue, and while I probably can’t add too much to this discussion, I just wanted to let you know that I appreciate that you did, in fact, respond to it with more than just outrage — which really doesn’t get things rolling in a productive way at all. I, too, find that it’s important that we not use celiac and gluten-intolerant interchangeably, as casually tossing these identifiers around (and casually disregarding their implications; i.e., strictly avoiding gluten!) really does influence this stigma of gluten-free being a fad diet. I feel sad that the chef seems to have chosen to remain ignorant, but I certainly hope that the celiac and gluten-free community’s response will help set him on the path to education 😉

    Thanks again.

    • Thank you for your comments. Aside from the issues of using the term “celiac” incorrectly, i.e. for people who do not have this medical condition, I wonder what the overall resistance is to folks experimenting with their food.

      If people change the way they eat, add more variety to their diet, explore new foods, why is that a problem? Why is that named a fad, clearly a loaded word in our media?

      I agree, it is sad that people still choose to remain ignorant, and it is dangerous when those people are in the kitchen making food for unwitting restaurant customers.

      The upside to this uproar must be that we expand the conversation around what it means to be gluten-free, and why it is of absolute necessity for some, and a valid choice for others.

  • Thank you for this thoughtful piece. I too am a coeliac ( that’s how we spell it in the UK) and try to lead as normal a life as possible while never eating gluten. The faddists don’t help but this chef story was incredible. Just shows how we need to keep on explaining.

    • Thank you for your visit and comments, Lesley. (I love to see the British spellings – I am Canadian, and spell everything the way I was taught, with ours all over the place. My daughter, who was born here in the States, does also. Little rebel.)

      Yes, we need to explain, educate, and inform. And we don’t ever need to apologise. No one asks to have celiac. We do ask to know what is in our food, and to eat safely and nutritiously.

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