Deirdre Saoirse Moen

Sounds Like Weird

Archive of posts with tag 'medical-diet'

: What A Celiac Thinks of the Gluten-Free Foods Fad

[![What I think about the gluten-free fad](/images/2015/04/Depositphotos_24460587_700.jpg)](/images/2015/04/Depositphotos_24460587_700.jpg)Falafel balls with salad, photo by Ilya Shapovalov.

I really, really, really wish someone would ask a few celiacs what we think of the gluten-free foods fad. Instead, we get pieces with inflammatory headlines like this steaming poo and this pile o crap, and I just want to make all of you suffer my culinary life for the rest of yours. With extreme prejudice. (Sorry for the lower digestive metaphors, but if you were celiac, you’d understand where I’m coming from. So to speak.)
Look, I’m a child of scientists, and I do absolutely believe in basing your culinary decisions, at least in part, on science. And I would not wish a gluten-free diet on anyone, not even my worst enemy.
For me, not eating gluten free means feeling like I have food poisoning. In fact, I thought I did recently when I accidentally grabbed the gluten-filled waffles at the store and managed to eat two before I noticed.
Having to eat gluten-free foods all the time has brought me to tears more often than I’d like to admit to. Occasionally, like my first day at Apple, they’re tears of joy because there are four gluten-free soups and you’ve never seen a gluten-free soup in the wild before.
Here is what I’d most like to say to people who eat gluten free and have pressured various restaurants to have gluten-free foods available: Thank you.

That’s it. Thank you.
Because of all of you, I can walk into pretty much any first-tier hotel pretty much anywhere in the world and not starve. I usually can have gluten-free food I like. Better restaurants and hotels have gluten-free bread, even though sometimes it’s so awful I’d rather not actually eat it (glares at the Hilton Frankfurt Airport).
Sometimes, there’s a gluten-free menu. I live for those days.
Sometimes, those menus have cool things on them.
I had, for the first time in the almost 20 years I’ve lived gluten free, gluten-free fish and chips for the first time in a restaurant. It was magical.
Also, I’d like to extend a warm shout-out to those who aren’t celiac but who do have genuine problems with gluten and/or wheat, rye, or barley. There are the people who are flat-out allergic, and there’s at least an arguable case for non-celiac gluten sensitivity.

But: Gluten-Free Foods!

If you don’t absolutely have to eat gluten-free foods….
Look, as much as I appreciate your support, I wish you’d consider your life choices, and also how you’re harming those of us who have no other choice.

  • Because you are willing to accept gluten substitutes, you make us look flaky.
  • Some people will passively aggressively serve us gluten because they don’t believe anyone needs a gluten-free diet.
  • 20 ppm really apparently does harm some celiacs, and a lot of kitchens aren’t celiac safe. Like: pizza places that cut their (formerly) gluten-free pizzas in the same workspaces, with the same tools, that they cut their wheat pizzas. That may be fine for you, but it’s not fine for us. Consequently, we still have to ask All the Annoying Questions.

Doing gluten free right is hard. I get why you sometimes just say fuck it and eat what you’d rather have. (I wish I had that choice.)

While You’re Lobbying for Foods for Us…

Would you please all collectively ask for regular old meat lasagne for me? Something akin to what Marie Callender’s used to serve, but in gluten-free form?
I’ve never seen a gluten-free meat lasagne in a restaurant, and I’d very much like to.
Much obliged.

: 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.

: Why We Don't Sail Carnival

It’s not because of the poop cruise.

It’s not because of the Concordia.

Yet it’s indirectly related to both those things.

Here’s an example. Seabourn had two small ships, carrying 112 passengers. Seabourn was sold to Carnival, and those small ships were replaced with three larger ships with more than double the tonnage carrying 208 passengers. That’s not a bad size.

Except those three ships are now being replaced with 32,000 ton ships that carry 450 passengers. So, a periodic doubling of passenger capacity and a concomitant loss of intimacy.

Seabourn’s original two ships are now owned and operated by SeaDream. We love them. Sure, it’d be nice to have something a bit bigger, but their ships are really great, though designed before good wheelchair-friendly designs came out. (As a mobility-impaired person, it’s a bit challenging at times, but I manage just fine.)

When we first arrived on SeaDream, they knew our names, knew I needed gluten-free food, and so on. On our second cruise, most of the crew was the same, and they all remembered us. You can’t get that kind of intimacy on a large ship, and every time Carnival goes through another iteration, it’s to make things bigger.

Another point about gluten-free food and SeaDream: they mark every menu with what is gluten-free and what is not. They are very careful with it; I’ve never gotten sick from food aboard. Their food is truly world class.

: Confessions of an Imperfect Celiac

I confess: At times over the years, particularly when it came to certain trigger foods, I was a bad celiac. That changed in 2009 when I saw this video. I mention my failings because I’m not the only one out there.
Truth is, I knew I was celiac for at least three years before I was diagnosed, I just didn’t want to know it. At that time, in the era before good web searches and tireless wikipedia editors, I didn’t know how bad celiac disease really was. Then again, I’m not really sure anyone did.
When I was a kid, people thought celiac disease was something you had as a kid and “got over.” I kind of adapted in weird ways: I ate my sandwiches on white bread (less protein and thus less gluten, but also I respond to the bleached protein differently) open-faced (one piece of bread instead of two). I ate lots of pasta sauce with very little noodles. When I made lasagne, I used half the noodles and twice as much other stuff. I preferred corn muffins and oatmeal cookies (but with chocolate chips). I’d use corn tortillas for my tacos. In other words, there were ways I was unaware of that I tried to reduce my gluten consumption. My dad was constantly nagging me to eat more grains, but now he admits he was wrong on that point.
And then there was the time I went vegetarian. I think I lasted a week or two, probably mostly because the wheat germ made me so very ill. It still makes me shudder.
There wasn’t a history of celiac disease in my family. My father carries some of the genes; my mother doesn’t. My stepmother noticed that I sometimes came back from visits to my mom with stomach cramps. I was sent to a shrink as it was believed to be psychological. It wasn’t, it was dietary. (I don’t actually remember the symptoms, I just remember the outrage of being sent to a shrink over it.) I was eleven at the time, so I know I was symptomatic then, but I don’t know when the symptoms actually started, only when they were noticeable by other people.
Even after I was diagnosed (at the age of 37), I would have moments of weakness. Some celiacs vomit up gluten. Lucky them, as it does less damage that way. Some get cramps within an hour. Lucky them.
And then there’s me. My symptoms take two to three days after gluten ingestion, so you can see that would be difficult to correlate food with symptom. Who remembers what they had to eat in detail 2-3 days ago on a regular basis?
There are certain foods I miss a lot.
At the end of the first week I was gluten-free, I missed two things: pizza and chocolate chip cookies. I made a passable pizza from scratch (my first), but the cookies were awful. I didn’t know the difference between potato starch and potato flour and made the grittiest, most awful cookies such that a house full of college students wouldn’t touch the damn things.
I miss croissants and chocolate cake in particular. Sure, you can make a passable chocolate cake without gluten, and Miglet’s bakery does a great job, but it’s not really the same thing. Sadly, croissants are simply beyond what non-gluten flours can do. Actually, I did hear a rumor that someone in either Australia or New Zealand made a passable croissant without gluten, but I remain unconvinced until I try one.
So, for years, we’d go out for lingonberry pancakes every once in a while. I’d have my birthday croissant. I’d occasionally eat something else sinful, and it was touch and go whether I’d hit the bread basket in a restaurant if I was really, really hungry. Now I have the strength to push it away from me (they always put it in front of me, it’s like being the person in a room who doesn’t like cats).
I’m not talking a lot. I’m talking about a slip on average once a month. Later on, it was more like once every two or three months, but it was a significant slip: an entire non-compliant meal in the case of the lingonberries.
Lest I sound like a complete idiot for the above admission — I know of more than one celiac who, when he or she gave up gluten entirely, developed a life-threatening gluten allergy as a side effect. Thus, I thought, maybe it is better to have low occasional doses of gluten.
When I saw Dr. Murphy’s video, though, it stopped me cold. I’m still not perfect, but I feel better for the more strident and continued effort. Unfortunately, it meant food felt more like a war zone than it had before.
On my last trip to Hilo, it was really difficult. Everything’s got soy sauce or teriyaki (which is derived from soy sauce) or some other form of gluten. This time, I picked more carefully and was able to avoid the land mines, but I nearly had an oops when I saw that McDonald’s was serving banana pies. I love hot bananas, and I love pie. One dollar and you can have both. Grrr!
I was thinking about this earlier: I probably need to make a list of foods I associate with gluten that I really, truly love — then figure out a way to work them into my food plan in some gluten-free version. I think I’ll just bronze a croissant, though, that’s a lost cause.
I also remain unhappy with all my lasagne options thus far.
With that exercise, I’ll probably discover that there’s some aspect of foods that I like where there’s some common thing I haven’t thought of.
For example, Rick and I were talking about some foods I didn’t really like. I’ll eat zucchini, pick at it more like, but I’ve never been a fan. I love the smell of cucumbers, but not the taste. The common aspect to both of those is simply that I don’t like the sharp tang they have to me. I don’t like bitter tastes for the most part. So, weirdly, I don’t like cucumbers and I don’t like vinegar, but I do like the occasional dill pickle, because the taste is more than either cucumber or vinegar or the combination of the two.
I’ve never really heard anyone else talk about having trouble staying compliant. Maybe they’re more like me than they’d like to admit, but it sure seems that most people have much more immediate gluten reactions; I’m not that fortunate. For me, these days, it’s more the emotional reaction: it’s not fair, and it’ll never feel fair. But we forge along anyway.