The Frustrations of Being Celiac

The first day I was at Apple (a bit over six years ago), I went to Caffé Macs.
And promptly burst into tears when I saw the menu.
Not, for once, out of sadness or frustration, but out of joy: they had four soups that day, and all four were gluten free.
I hadn’t had soup in a restaurant for twelve years.
Being celiac means you have to constantly have the conversation, both with others and with yourself: what’s in this? Do I trust that this person understands what gluten is? Are there any possible gotcha ingredients? Am I going to get sick? Am I in a situation where I can risk getting sick?
It’s. Fucking. Exhausting.
Some of you may minimize the illness. Here are some reactions of celiacs/gluten sensitive people I know.

1. Guy winds up in the ICU with extreme anemia. He’s lost a ton of weight. His identical twin has not, so they don’t immediately think of anything with a genetic component. He’s apparently dying, but from no obvious cause. They give him two units of blood for the anemia. Eventually, they figure out he’s celiac. They are both now on gluten-free diets.
2. Woman who is so sensitive to gluten that she has seizures from cross contamination. Like any seizure, they can be permanently disabling due to brain damage.
3. Friend I know says that his daughter has been losing weight. She’s actually seen a gastroenterologist, more than once, but has continued to lose weight and throws up almost everything she eats. Her doctors have written her off as secretly bulemic. She’s not, though. I correctly call it: gluten reaction. No one had put her on an elimination diet.

Different celiacs have different reaction times. Some actually have part of their reaction in their stomachs. They will throw up their meals. I’m not that lucky. If it goes in, it stays in, meaning it’ll do more damage and I’ll be sick longer. Typical onset is 24-72 hours after a meal. (How many of you remember what you ate that long ago? Now you know why, when I eat out at a new place, I take pictures of my food. Timestamps are wonderful.)
My first reaction is usually a slightly elevated temperature, generally 0.3-0.5 degrees F. Then gastrointestinal cramping. In extreme cases, bleeding.
Not fun.

Celiac Disease Really Is More Common Than it Used to Be

Dr. Joseph Murray of the Mayo Clinic explains. (emphasis added)

Dr. Murray’s team tested the 50-year-old blood for gluten antibodies, assuming that 1 percent would be positive—the same as today’s rate of celiac disease. But the number of positive results was far smaller, indicating that celiac disease was extremely rare among those young airmen. Surprised, the researchers compared those results with two recently collected sets from Olmsted County, Minn. One blood-sample set matched the birth years of the airmen. Those elderly men were four times likelier to have celiac disease than their contemporaries tested 50 years earlier. The second set matched the ages of the airmen at the time their blood was drawn. Today’s young men were 4.5 times likelier to have celiac disease than the 1950s recruits.

Why? We don’t know yet.

But What About the Non-Celiacs? The Ones Kimmel Was Roasting?

I’d love to see a similar segment roasting Meat Free Mondays. Or any other diet fad where the choice is primarily political.
It’d never happen.
Being gluten-free is an extremely hard choice to make and to continue to make. It’s expensive. It lets out whole swaths of comfort foods. Most gluten-free breads suck.
Some days, I’d kill for a real croissant.
Our biochemistry is incredibly complex, and some foods will make us feel better and others will not. If that extremely hard choice makes you feel better, then do it. If not, well, don’t feel bad for having tried it.

How I Feel About the Gluten-Free Fad

My feelings on it are complex, but largely positive. Consider:

1. These days, I can walk into a restaurant, ask if they have gluten-free soups, and probably get the correct answer. That was not true 6 years ago. It definitely wasn’t true 18 years ago.
2. I no longer have to drive 30 miles to buy gluten-free flour like I did 18 years ago.
3. I can walk into a random restaurant and occasionally get a gluten-free menu. My mom and I went to the Union Street Grill in Courtenay, B.C.—not a big city by any means—and they had a gluten-free menu. Because of that (oh, and they’re good, too), we went back two more times. Then we went across the street (practically) to the Atlas Cafe, and they have a gluten-free menu too.
4. I can find dedicated gluten-free restaurants near me. Do you have any idea what it’s like to walk into a restaurant and be able to order anything on the menu after 18 years of not being able to? (Last night, we had dinner at Asian Box in Palo Alto, one of our favorites.)
5. I can visit entire countries with as good or better availability of gluten-free food than we have here in the United States. It might surprise you to know that Italy is one of the better places for gluten-free options. (Also note that that post was written almost 7 years ago, well before the current fad.) Argentina’s working on it. Brazil has pão de queijo as a street food. Yum! But my all-time favorite place for gluten-free food is New Zealand.

So, want to eat gluten free but don’t have a medical necessity to? Knock yourself out. Thank you for increasing my options. I really, truly, sincerely am thankful every single day.

That One Thing I Haven’t Yet Found

Gluten-free regular old meat lasagne in a restaurant with gobs of cheese in and through it. Please, no vegetables masquerading as noodles need apply here. That’s my grail food.

• gluten-free
• medical
• medical-diet

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