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.”
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).
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.