Symptoms and Celiac

Not All of Us Want to Share Our Symptoms

I explained to the white-coated chef at the Marriott Residence Inn that I had celiac disease and a bunch of food allergies so I couldn’t eat the potatoes cooked in butter or the eggs or the yogurt or the cereal.

While I scooped fresh blueberries from the waffle station to top my Bakery on Main oatmeal, she circled me like paparazzi around Gwyneth Paltrow.

I knew what was coming.

“What are your symptoms?” she asked loud enough to make my husband cringe.

I looked around the room full of men and women in business attire and families with young children on school break and said softly, “Unpleasant ones.”

Now I have no problem talking about celiac disease and food allergies. After all, I spill my guts in this blog (pun intended). Of course, you may  notice I hide behind a lemon in sunglasses.

But if I’m in public, I’d rather not talk about my bathroom habits. And I’m almost positive these people eating their bagels and cream cheese didn’t want to hear about my flatulence and IBS.

This gal was relentless. “How unpleasant?”

Really? You really want me to talk about my diarrhea and painful cramps before I’ve even had a cup of coffee?  I glared at her. “I experience gastrointestinal issues.”

She got it. Finally.

Blushing, she said, “Oh, I just asked because I have eczema and people tell me maybe I should go off gluten.”

Why didn’t she just say that!

“Have you gone off gluten to see if it helps?”

“I probably should,” she said. “But I couldn’t possibly live without bread and pasta.”

May is Celiac Awareness Month

Let me share another story.

We are at a restaurant and the waiter asks what kind of allergy I have: “Is it the kind that makes you run to the bathroom, or run to the hospital?”

I know what you’re thinking: I’m making this up. I wish!

I could have told this waiter–who happened to look like one of those bronzed guys with the abs of steel in middle-of-the-night infomercials–if I eat even a crop of the sauce with the cream, I will spend the next three days glued to the toilet seat.  I could–and probably should–have told him it didn’t matter what kind of allergy I have–both symptoms are bad. If I continue to get sick from restaurants like his, I could get cancer.

Actually, I can’t remember what I said.  I’m pretty sure I went to the bar and ordered a goblet of wine, and my husband ordered me a plain filet with olive oil, salt and pepper and steamed broccoli (my go-to-allergy-safe meal).

Food Allergies have many symptoms

Now some people–I can think of several of my fellow bloggers–can easily speak out about their bathroom habits. Erica Dermer has a chapter in her book, Celiac and the Beast, titled “Let’s Talk About Butts: A Story of a Girl, Her Rectum, and the Scope That Loved Her.”  Erica probably wasn’t raised by a mother who ordered “chicken chest” for dinner, as I was.

Ironically, Erica doesn’t have the nasty GI symptoms that many of us do. In the first line of her book, she says, “I wish I could tell you that if I ate a bowl of Pasta Roni right now, I would swiftly crap my pants. I only wish this because then you would plainly see that something is very, very wrong with my insides.”

Erica goes on to say that her symptoms appear days or weeks later–sores in her mouth, a swollen tongue, extreme tiredness. “I experience the same life post-gluten as every other celiac,” she writes.

While we all are in this together, our symptoms may be similar and different. Celiac disease has over 300 symptoms! 300!  Throwing food allergies into the mix only complicates matters.  Your autoimmune system reacts to proteins in foods differently from my autoimmune system.

So when a waiter, a chef, your spouse’s boss, or someone in the grocery store checkout line who sees you buying Udi’s gluten-free bread asks you what your symptoms are, feel free to share if you like. But I prefer telling them to go to one of these websites:

Food Allergy Research & Education (FARE)

Fare has recently launched SafeFare, a resource center to make dining out safer

National Foundation for Celiac Awareness

Make sure you print out NFCA’s Celiac Awareness Month 2014 Toolkit

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May is Celiac Awareness Month, and Food Allergy Awareness Week starts May 11, 2014.  Please share information about celiac disease and food allergies–especially symptoms so people will stop embarrassing An Allergic Foodie.

Not All of Us Want to Share Our Symptoms first appeared at Adventures of an Allergic Foodie.

People Who Don’t Have Eating Issues Should Butt Out

On New Year’s Eve, Ox Restaurant, an Argentina steakhouse in Portland, posted an Instagram photo of myriad sticky notes with dietary restrictions. Eater published the photo under the headline This Is Just a Nightmare of Restaurant Customer Allergies.  

Photo from  Ox Restaurant in Portland on Instagram, 12/31/2013

Photo from Ox Restaurant in Portland on Instagram, 12/31/2013

I was all ready to read yet another negative review of customers with food allergies, but that wasn’t the case. What Ox owners Greg and Gabrielle Quiñónez Denton wrote on their Instagram post, and Eater reported, was that the special orders were “nothin’ special.”

Nothin’ special!

Keep in mind, this was a ridiculously busy night–New Year’s Eve! And the restaurant was offering a prix-free menu. Personally, with my myriad allergies and celiac disease, I would never ever expect a restaurant to “redo” a prix-free menu for me on one of the busiest nights of the year. In fact, I called five restaurants weeks before New Year’s Eve to find one that was offering a full menu and then I asked if they could accommodate me.

I’m nice that way. Evidently not everyone in Portland with food issues feels the same way I do. Again I say, Bravo Ox!

Here’s the part that’s gonna make you mad  . . . the comments that followed Eater’s brief article.

Oh where should I start?  Maybe with this one . . .

Comment #1: The percentage of gluten allergies here is about 20%, the reality is about 1.5% in the country. So most of them must be a choice. Next time choose to stay home.

Not sure where this guy got his numbers, but I’ll go to the National Foundation for Celiac Awareness for mine: “One out of every 133 Americans has celiac disease. That’s equivalent to nearly 1% of the U.S. population. However, 95% of people with celiac disease remain undiagnosed or misdiagnosed. This means that up to three million Americans have celiac disease and only about 200,000 know they have the condition.”

Wow. No matter how many times I hear those statistics I’m still astounded, and I’m always left thinking how many people are suffering and not knowing why.  Maybe they’ve figured out they should eliminate gluten from their diet before a doctor told them to.  They made a choice not to eat gluten. Therefore, according to the guy above, they should not dine out.

For so many of us eating gluten is not a choice but a medical necessity. I would like to think many restaurants are glad I choose to spend my hard-earned cash at their establishments.

Comment #2: They should go to the hospital not a restaurant. People that haven’t worked in a restaurant should not eat in one.

I worked at Friendly’s in high school so I guess I’m qualified to eat in a restaurant. What a weird way to think. I haven’t worked in a clothing store, so I guess I shouldn’t shop in one. I haven’t worked in a grocery store, so I guess I shouldn’t buy groceries. I’m just going to stop here.

Comment #3: What’s the most annoying is that most of these are preferences, not allergies.

Huh? More than 170 foods are known to cause allergic reactions. People can be allergic to odd foods like lemon and pepper and lentils; I know people who are allergic to all of these. I happen to be allergic to asparagus and capers and nutmeg. I usually don’t list all my allergies when I order at a restaurant (we’d never get to eat!), but I do request no asparagus because it’s such a common side. I’m sure waitstaff think I just don’t like asparagus, but the reality is asparagus makes me really, really sick.

Comment #4: [They’re] just begging to have their food spit on. The entitlement mentality of modern US diners is just out of control. Stay at home if you have so many stupid allergies, no one really cares.

This person is just heartless and mean. Obviously he/she has never met someone who has gone into anaphylaxis, or had a child double up in pain because he ingested wheat. According to the Centers for Disease Control, there has been a 50% increase in food allergies since the 1990s. If everyone stays home, how will restaurants survive?

Comment #5: I waited tables in the early nineties with a tyrant of a chef; he would not do special orders and if we asked, he would go berserk. I totally understand the side of the customer saying, we’re paying we should get what we want. But then there is the side of the restaurant, one special order per server upsets the whole flow of the kitchen. People take their demands too far these days.

Did you hear that people? You are taking your  food allergies and celiac disease demands too far!  You are upsetting the flow of the kitchen. How dare you!

Final comment from an allergic foodie: People who don’t have eating issues should butt out.

People Who Don’t Have Eating Issues Should Butt Out” originally appeared at Adventures of an Allergic Foodie.