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

* * *

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.

Mom’s Memory Is Going. Could it be Celiac Disease?

Mom is slightly bent over and her hair is thin and white, but she still rakes her lawn all summer long and trims the tree branches, then hauls the overfilled black bags to the landfill—all by herself. She’s the first one in the neighborhood to clear her driveway after a heavy New England snowstorm. She walks her dog around the block at least seven times a day. She rarely eats red meat, preferring salmon or chicken, and she grazes on fruit and vegetables. Mom hardly ever gets sick.

Meme Summer 2011

You could say my mother is the epitome of what we’d all like to be in our silver years.

Until now.

Something is wrong with Mom’s memory.

This past Sunday she told me about seeing The Butler with her neighbor Bonnie. Not once. Not twice. Not three times. She told me at least five times during a ten-minute conversation!

I asked her if she was feeling okay.

“Oh yes, I had a lovely time with Bonnie at the movies, and then we had dinner. Do you remember Bonnie?”

“Mom, maybe you should drink some water. Are you dehydrated?”

“Well, I had coffee during dinner. Oh, did I tell you I went to the movies today. We saw The Butler–”

“Mom, when was the last time you saw a doctor? You’ve lost a lot of weight, maybe your prescriptions need to be lowered.”

“Oh those doctors don’t know what they’re doing . . .”

An hour later, I’d tracked down Bonnie. She told me she hadn’t noticed my mother’s memory being any worse than usual, just the occasional “senior moments.” I felt tons better. Maybe The Butler really was that good.

When Mom called on Monday, she sounded fine.

“I called to see what you and the family were doing for Labor Day.”

“You mean next Monday?”

“Today. Isn’t today Labor Day?”

“No, next week, Mom.”

“Oh, I should look at a calendar I guess. By the way, have you seen The Butler?”

WHAT’S WRONG WITH MOM?

After our call, I typed “memory loss,” “dementia,” and “Alzheimer’s” into the computer and pulled up a few reputable medical websites. I felt relieved to see many plausible explanations for sudden short-term memory loss, ones that didn’t necessarily lead down a dark path. I know Mom needs to see a doctor, but believe me it will take some persuading.

She’s scared.

I’m scared, too.

A few months ago when I attended a seminar on celiac disease at a local pharmacy, I was surprised to see the room filled with recently diagnosed elderly people. Many told me that memory loss was one of their first symptoms. At the time, I figured they were talking about the brain fog we CD folks all experience. But after the frightening conversation with my mother, I can’t help wondering if they were talking about something different.

You see I inherited celiac disease from one or both parents, according to genetic testing, so I I’m worried Mom’s memory difficulties might be caused by undiagnosed and untreated celiac disease. While never tested, both of my parents (Dad is diseased) definitely showed CD symptoms over the years. My brother also shows signs, and one of my sons is severely gluten intolerant.

Based on data from the University of Chicago  http://news.medill.northwestern.edu/chicago/news.aspx?id=150813

Based on data from the University of Chicago
http://news.medill.northwestern.edu/chicago/news.aspx?id=150813

The good little researcher I am, I headed to the Internet. Though my investigation was brief, what I discovered didn’t provide me much comfort. It appears the elderly are just now being diagnosed with CD—and at record numbers. According to The University of Maryland School of Medicine Center for Celiac Research, CD is about two and a half times more common among elderly people than it is in the population as a whole.

Wow! I wonder what is causing this explosion in gluten-intolerant grannies and grandpas.
Holding Hands with Elderly Patient

My research also revealed that older people are pretty much getting left out of the celiac research. Celiac.com’s Jefferson Adams, who deciphers medical research on celiac disease for the layman, says that “despite a growing body of research on celiac disease, very little is known about this condition in older people.”

I would think finding out why older folk are developing a disease that was once thought of as a childhood disease would be incredibly helpful to the medical community. Such research would certainly be helpful to families with genetic links to CD.

But maybe that’s just me–a daughter, a sister, and a mother worried about what celiac disease is doing to her family and wanting to do something about it.

What I Read:

Adult Celiac Disease in the Elderly (ncbi.nlm.hih.gov)
Neurological Disorders in Adult Celiac Disease (ncbi.nlm.gov)
Celiac Disease in the Elderly (celiac.com)

It’s Not Always About the Food

Too often my food allergies become the focus of dinners with friends. Yes, this allergic foodie does appreciate a good meal–and preferably one that won’t cause an allergic reaction–but sometimes dinner isn’t about what’s being served.

It’s about sharing time with people you care about.

Take last Friday night, my girl friend’s birthday celebration. We were dining at the Garden of the Gods Club in Colorado Springs.

The sun was setting on the magnificent rock formations, and deer played outside the picture window.  Yes, deer actually frolicked in the grass! A perfect evening.

Deer in Colorado Springs

The waiter arrived, and I stated my well-rehearsed litany of dietary needs.  He assured me the chef would prepare a spinach salad for a first course and gluten-free scallops with plain rice and a vegetable (sans butter or soy oil) for the main meal.

While my companions enjoyed warm rolls and butter, I sipped my tonic water with lime.  Nothing I haven’t done before.  (Well, I usually have a cosmo followed by wine, but I’ve been cutting back.)

“I’m so sorry you can’t eat these rolls,” my friend apologized.  “I won’t tell you how good they are.”

I chuckled.  “No problem,” I assured her.  “I’ll be hungrier for the salad.”

Then my salad arrived looking rather plain without the cheese and croutons.

“That’s it?  Don’t you want something else?” asked my concerned friend.

I assured her the salad was fine.  Sure, I admit it was underwhelming, but I wasn’t going to get sick and that was the important thing.  Being a part of my friend’s special occasion was what the evening was about.

When the main course arrived,  I immediately knew something was wrong with mine.  The rice and scallops were sitting on a pool of yellowish liquid. I didn’t even bother picking up my fork.

“This looks like a butter sauce,” I quietly told the waiter, not wanting to cause a scene.

“I’m sure it’s fine.  I told the chef no dairy–”  He stopped midsentence as I tilted the plate so he could get a closer look at the creamy liquid.

This is the part I always hate. You know the drill. As the waiter quickly takes my food away, everyone else politely sets their forks down.

“Please don’t wait. Eat while your food is hot,” I say. But that’s improper etiquette, and everyone feels uncomfortable eating in front of me. A few more convincing prompts from me and they finally dig in.

Unfortunately, while I wait, my well-intentioned and kind friends keep trying to give me tastes of their steaks. My husband knows better, of course.

“No thank you . . . no really, I can’t .  . . I can’t eat off your plate . . . mine will be here soon.”

They are halfway through their meals when the scallops sans the sauce arrives. No apology from the waiter.  But no big deal; the tasty scallops make up for the waiter’s lack of concern for my gastrointestinal health.

Even with my meal here, my friends keep trying to feed me. Getting a tad annoyed, I say a little too loudly, “I have my own food!”   Then I laugh, a bit embarrassed.

For dessert, I am thrilled the restaurant serves homemade sorbet. I can have dessert while the birthday girl and the husbands enjoy cake.

The thing is my girl friend still wants me to taste the cake.  When I resist, she insists I at least eat the strawberries.

It is my husband who speaks up. “She can’t eat the strawberries because they are contaminated with the flour from the cake and whatever’s in that sauce.”

Once again, my eating challenges have become central stage.

Of course, those of us with celiac disease and food allergies must be vigilant about what we put into our mouths, but sometimes don’t you want a night off?

Don’t you just want your food issues to take the backseat?  Order your allergy-free food quietly, discreetly take care of any issues that arise, and focus on your dinner companions and the conversation.

Afterall, it’s not always about the food.