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(c) 2012 (Pizza and Photo) Sherman Lambert. Yum–normal enough for you?

Just a note before Celiac Awareness Month officially ends today—although if you have celiac disease or live with someone who does, every month is about celiac awareness, right? What is celiac disease? Whenever someone with the condition—diagnosed or not—eats wheat, rye, barley, and some types of oats, the lining of the intestine can be damaged, leading to many other often serious conditions. Once a person develops this particular autoimmune disease, he or she has it for his or her remaining days.

Lucky for me, I don’t have celiac disease—and, yes, I have been tested.

However, two of the three people I love most in this world do have it. Gluten-free food is not a trend in our family—the need for eating gluten-free will never go away here because my husband and daughter want to live well and live well as long as they are able. They don’t willingly “cheat” on the diet and, not just because they don’t want any temporary symptoms. No, they already have one more autoimmune disease than they’d like to have and they don’t want to attract any more autoimmune diseases nor any horrid cancers such as colon cancer or lymphoma.

You see, that’s how it really is for people who are celiac and who must eat gluten-free. My daughter is young and she meets many people who think she should just cheat on her diet. So she finally decided to answer their “what happens if you eat gluten” questions a little more strongly. Her reply is, “I get cancer.” Seems a little harsh until you repeatedly run up against how little regard many people have for the fact a person with celiac disease needs to follow the gluten-free diet forever—or at least until someone comes up with a miracle medicine.

While young people are more likely to disregard the importance of the diet, they don’t have a corner on not taking the diagnosis seriously. My husband’s co-worker has rheumatoid arthritis—an autoimmune disease that often shows up with celiac disease. Nonetheless, when he watches Sherman work so hard to follow the diet, he says, “I’d find a different doctor.” What, a stupider one? Just because some doctors miss the diagnosis, doesn’t make the condition go away.

I’d like to tell you that it’s not that hard to follow the diet—but it is. I am so glad my loved ones care enough to protect themselves and I’m especially proud about how strong they are in the face of constant temptations and/or exclusions. They used to think I was rather strident about informing people about what celiac disease was, but they are starting to see that too many people just don’t “get” their difficulties nor worry about accommodating them.

Sherman gave up one of the great loves of his life—brewing beer and sampling as many different brews as he could—without a fight. He goes to birthday get-togethers at work and potlucks where he can eat nothing or only a limited selection. But I knew he’d really had it with the cluelessness of certain people when the caterer at his office building’s big holiday party told him he could not have extra vegetables/fruits even though he could eat no other items out of the sizable spread provided.

While living in the dorms, Christiana has had to put up with barley in chocolate milk, promised gluten-free options not being available, and food service workers who treat her as a spoiled brat versus a person with a disability, albeit one who is not getting what she/we paid for. That doesn’t even count the social culture in college built around beer and pizza and not planning ahead . . .

So around here, we are all gluten-aware—whether it’s about food or additives or attitudes or language. Next time you think it’s a hassle to work around someone’s gluten sensitivities, be glad you aren’t the one with the sensitivities—I know I am!

Please, please, please stop asking if we—or anyone else you know with celiac disease—have any “normal” food. And don’t try to pass off “this tastes normal” as a compliment. Do you really think anyone wants to be reminded of how hard it is to live a normal life when an everyday activity such as eating is so difficult? It’s just semantics, but using the word “typical” might save your relationships with your celiac friends and relatives.

Living in a celiac aware world—now that should be the new normal.

P.S. If you’d like to learn more about celiac disease, visit the website for the University of Chicago Celiac Disease Center.


(c) 2009 Christiana Lambert

You know my messy table isn’t really the problem—it’s just an obvious sign that deep down all is not well with my soul.

This is one of those years when I can’t talk myself into seeing the happy endings—or at least the unhappy endings that lead to deeper understanding and long-term happier endings. No matter what I said about wanting to be done with talking about unhappy topics, I am not. I can’t will myself to come up with the neat and happy moral of the story that will tie up a less-than-hope-filled post.

Although I’m feeling a bit like George Bailey on the bridge, I’m not looking to jump into the river. No, I just want to take that suitcase I bought with happy travels in mind—and run—anywhere that isn’t where I’ve been.

You see, I know God is hearing my prayers, but I’m having a hard time saying them. The good thing about God is He hears the prayers that have sunk so deep within us that we can’t even use our voices to speak them—they become so much a part of us that they rise from our very pores.

If nothing else, perhaps He’ll send me a bumbling Clarence to show me a better path than the one I am on.

Sometimes no amount of research or any continued pursuit for new solutions can fix a problem. And you especially can’t make someone else choose to see the hope in their situation if they prefer to see only loss.

You’re probably thinking I must be talking about myself, right? See, that’s the irony, isn’t it? So easy to see how to solve someone else’s problem, but then you look in the mirror and realize that maybe you’re so busy trying to solve someone else’s problem because it makes it easy not to be responsible for solving your own problems.

The years of trying to help others with celiac disease, dementia, depression, and ADD have taken their toll on me. I’m fresh out of perky solutions that are always met with a big “but”—because after all I have no idea how bad it is for someone else.

Well, the truth is they don’t know how bad it has been for me to watch them suffer. If I could, I would wave a magic wand and remove the problem. Would be much better than searching for other possible solutions that will never be good enough because the only solution the person really wants is to wake up completely healed.

They also don’t know how much I’ve suffered watching them refuse to consider anything but Plan A when I would fight to find them Plan B through Plan Infinity to aid in their movements forward. This week I realize I’m done being the pep squad. All that energy spent helping those who at this point won’t help themselves is making me feel like a failure. I know I am not—I tried, as God is my witness, I tried. Maybe I tried so hard that they didn’t think they needed to do so. But in the end all any of us really can do is help ourselves.

And during all those times of caregiving, I did not help myself. In some ways it’s just not possible to take care of yourself in the midst of others’ crises, but in other ways you have to be careful not to see any results as the only proof that what you did mattered. Some problems can’t be fixed despite anyone’s best efforts.

And so, I need a Clarence to come show me how I helped even if I could not beat back the demons of the diseases. I need to know that without me this place would have become a Potterville. Maybe I have a bit of a savior complex, but, by God, I’d like to know that sacrificing my potential trips around the world made some difference to others.

But short of that, the only thing I can control is the direction of my own footsteps in the future. A future where I stop trying to find solutions for everyone else and start looking for my own regardless of who is coming along with me on the trip.

Clarence, are you ready to earn your wings? Then help me climb down from this bridge so I can pack my suitcase for the trip of my lifetime.

It’s not my problem, but I hate that people I know—and don’t know—have to experience less of life as most of us know it—or just have to learn not to put so much focus on what many of us take for granted: the ability to eat whatever’s provided or available.

I grew up with a mother who, for lack of a more precise definition, was sensitive to many things, despite not really getting very clear test results. Was it chemicals or natural substances—or both? Suffice it to say things that were often pleasant to others could make her feel sick. For our wedding, it was kind of a pain to find scent-free candles, even for the church, and provide only grape juice for communion, but I was willing to do it so my mom could enjoy our special day.

Even the extended larger family has various sensitivities, whether it’s to certain sounds, smells, and/or foods. Frankly, it’s a bit of a pain to have to deal with us. But, on the other hand, it’s a pain for regular aspects of life to make us feel bad. We’re the people who run around those perfume-spraying women at the front of the department store, the people who get migraines from certain buildings, the ones who try to be gracious and say “no thanks” to things that are not our friends at all.

The truth is, though, you really have no idea how hard it is for some other people unless you or someone in your family is faced with a life-threatening condition in response to certain everyday stimuli. Yes, it’s a pain not to be able to have a peanut butter sandwich, but imagine having to worry that every peanut butter sandwich can kill your kid.

When I was growing up I had a friend who had diabetes from her preschool days. Now I can truly imagine the courage it took for her mother to let her come to our sleepovers and rely on somebody else to feed her and to wake her up for her shots. Yet she must have wanted her to lead a somewhat normal life, despite the risks. I know I never understood how hard it was for my friend to watch us not worrying about a thing we ate.

The good news in our family is that the fatal risks associated with celiac disease can be abated with long term adherence to the gluten-free diet. My husband decided right away that he wanted to live badly enough to do what it took, even though some told him to look around for a second opinion so he might be able to wish away the future eating difficulties he faced. And I’m guessing that my daughter—who is still a very angry celiac—decided that too, since she’s one of the most compliant, from the start, teen celiacs I’ve met.

I thank God my loved ones “get” what their condition requires and do everything they can to stay healthy, despite all the challenges they now face with eating. But it still hurts to see them shut out from so many everyday eating experiences—including the simple ability to assume you can find something you can eat anywhere and don’t have to plan ahead.

So I’m really disappointed that when I did get a response from Girl Scouts, it was to hear that it wasn’t “economically feasible” at this time for the organization to sell what they call specialty cookies. Apparently, they couldn’t even make a go with it by selling cookies for people with diabetes.

Might I mention it’s not economically feasible to be sensitive to many common products, as well as natural and artificial influences in this world, let alone to have a life-threatening response to any of these things?

It’s also not emotionally feasible, but sometimes you have to accept that things are as they are. As the saying goes, that’s the way the cookie crumbles.

I’d like to tell my friend I’m sorry I wasn’t more sensitive to her food difficulties, but I can’t. Her disease killed her before she reached thirty-five. I don’t know if that could have been avoided, but I do know I could have made her social times with me easier.

Just because I can’t change the fact certain conditions exist doesn’t mean I’m going to stop doing what I can to provide awareness. My wish is that one day everyone who comes to the party will be able to grab onto the joy of worry-free eating.

(c) 2009, Christiana Lambert

My husband used to have an addiction to your Thin Mints. Admit it—you know that type of addiction adds to the funds needed to continue to support your programs. Add the inability to resist the appeal of your young saleswomen and most of us just can’t resist. It’s like cigarettes, only not nearly as bad for us—especially if we control ourselves and freeze those cookies and eat them from time to time—versus just devouring them in February after we’ve bought way too many boxes at the office!

About 4 ½ years ago my husband was diagnosed with celiac disease. That means he can’t eat products made from wheat, rye, barley, and most oats. That leaves out most traditionally made cookies, including yours. In solidarity with my husband, I don’t indulge in buying Thin Mints anymore. Do you know how guilty I feel when those little girls approach me in the grocery store parking lot?

According to the University of Chicago Celiac Disease Center, 1% or 3 million people in the United States have celiac disease, yet around 97% of those people are not yet diagnosed. However, more doctors are becoming aware of subtle symptoms at the same time the blood tests they use as a part of their diagnostic tools have become more reliable, so it’s only a matter of time before many others are diagnosed.

Food giant General Mills introduced a gluten-free version of Rice Chex in April 2008. How much easier our lives have become because finally we can buy a cereal in a non-specialty store. I’m pretty convinced that General Mills is finding this profitable because in October 2009 they followed with five more gluten-free versions of their cereals. In fact, just last month, General Mills introduced a website dedicated both to providing information on their gluten-free products and the gluten-free lifestyle. And, oh yes, those who must eat gluten-free are happy to see Betty Crocker gluten-free mixes—which can also be found in non-specialty stores. Baked desserts are not so easy to find for those who cannot eat gluten—which, of course, brings me back to your cookies.

People who have celiac disease are always looking for products they can eat, and when they find them, they are often so giddy with joy that they tell all their friends, plus they post the information in their support groups and on the Internet. The grapevine is incredibly well used among celiacs.

No doubt, right now, eating gluten-free is also a trend—or a fad—depending upon who you ask. Many people have decided that gluten isn’t really good for anyone, even if they have no physical damage from eating it. Quite a few kids with conditions such as autism and ADD are being placed on gluten-free diets, whether or not they have diagnostic reasons for giving up gluten. Many parents swear by their positive results, although, so far, publicly released studies aren’t really confirming this.

A February 2009 Jefferson Andrews article at reported on how the market for gluten-free products was growing, even in the midst of the recession. The article stated “Nielsen Co., reports that the gluten-free products sector increased 20% in the 12-month period ending June 14 [2009], to $1.75 billion from $1.46 billion the year before.” Not bad in a time when most business segments were losing ground.

An article posted in September 2009 (Josh Sosland) on BakingNews.Com discusses a Hartman Group study on consumer interests in gluten-free foods. Hartman’s statistic of a current 40 million or 13% interest in gluten-free products supposedly strikes terror in the grain-based food product industry, but Sosland goes on to say, with apparent relief, that Hartman does believe interest will diminish with time for the general population.

But why should the grain-based food product industry panic at all? There are many more grains involved in baking than just the traditional wheat flour. Even if interest in gluten-free foods wanes for the general population, people with celiac disease will always have to eat gluten-free.

That’s still one million people, many of whom are children. It’s hard enough to be a kid forgoing most snacks in group settings, but imagine how it must feel to be a Girl Scout during the cookie drive when she isn’t able to eat any of the cookies herself.

It seems to me that Thin Mints would be the easiest type of Girl Scout cookies to make gluten-free. The abundant chocolate coating should help the cookies remain fresh, which is often a concern with gluten-free products. Plus, freezing is a common way for gluten-free baked goods to remain fresh and many people already have great success freezing Thin Mints.

People who have celiac disease are a captive market and many of them are starved for the foods that are part of the social eating traditions in our country. Girl Scout cookies may be more American than apple pie these days. My husband didn’t eat apple pie in the first place, but Thin Mints were always a weakness for him.

So, dear Girl Scouts, wouldn’t now be a great time for you to develop a gluten-free cookie? The market is ripe—there’s a whole group of people out there hungry to support your organization through its products—if only they can. How sweet it would be to savor the satisfaction of helping a group of people who in turn can help the many girls within your organization.

Now for a message from the Girl Scouts in Nebraska–thanks to my friend Cynthe at Girl Scouts Spirit of Nebraska for sharing!

When you struggle with certain everyday aspects of life, it’s amazing how much relief you can find when the struggle is reduced even a little bit.

Wednesday, after I took Christiana to the doctor, we stopped by a King Soopers that we knew carried the Udi’s gluten-free blueberry muffins she likes. But this particular King Soopers, unlike those in our neighborhoods, carries a multitude of gluten-free products.

Christiana may have been sick, but you wouldn’t have guessed it from the ear-to-ear grin on her face. In both the freezer section and the baking section, she encountered a multitude of the products we use—and several more we hadn’t discover yet. In the store her walk turned almost Tiggerific.

Kinnikinnick chocolate-chip muffins and frozen-waffles. Chebe breadsticks. Amy’s macaroni and cheese. A full assortment of Bob’s Red Mill products, including brownie, pancake, and chocolate chip cookie mixes. All gluten-free products in a non-specialty grocery store not too far out of the way for us.

I wondered why until I realized this was the King Soopers closest to Beau Jo’s. The shopping center at Yale and Colorado Boulevard is definitely developing into a celiac’s best friend.

What a difference from our experiences last month. The supposedly simple act of eating just got a little bit easier for our family—thanks to the businesses that cater to this growing market of people who are just as hungry—if not more sometimes—as the rest of us.

And that makes all the difference to this family.

Eating—in any place—is not easy for our family, but eating out is even more difficult. Both Sherman and Christiana have celiac disease, which is an autoimmune response to gluten, found in wheat, rye, barley, and some oats. It’s hard enough to avoid foods that you know contain gluten without adding in the factor that gluten is often used as a filler.

Celiac disease is one of those underdiagnosed diseases since only about 10% of the population exhibits the classic symptoms—you know, feeling sick to the stomach pretty quickly after eating gluten. When a person with celiac disease doesn’t follow a gluten-free diet, he or she is opening the door to much more serious diseases, such as the other autoimmune diseases or even colon cancer or lymphoma. If nothing else, people who eat gluten when they shouldn’t are prone to depression, mood changes, irritability, and attention problems.

Part of the problem in getting a diagnosis is that symptoms are so varied. Sherman was diagnosed in his mid-40s because he was rejected as a blood donor a couple times for anemia. Since anemia in men is often related to a serious health condition, like colon cancer, he was referred to his doctor. Long story, short, he was diagnosed about 3 ½ years ago. But looking back, he’s pretty sure he’s had this for much of his life (celiac disease can go into periods of remission but it never goes away for good.)

Christiana was diagnosed last year at 15—and it’s been a very long year for her. She’s had to give up many of the foods she’s loved. But sometimes the bigger factor is how little access there is to food, unless she’s at home or has really planned ahead.

What teenager wants to be at home all the time or think ahead all the time? Spontaneity is what that period of life is often about. And that includes eating with friends without planning ahead—and often without thinking about calories or any other factors. Kids share things like pizza, donuts, muffins, cookies, and cakes, often on a whim. School groups and sports teams get food together for rewards, motivation, or relaxation.

Just in the last couple weeks Christiana has had a couple of her out-to-eat options pared down. Last weekend we struck out twice. First, Deby’s Gluten-Free Bakery and Cafe had just gone to wholesale operations only. And then Noodles & Company told her that the cheese sauce she’s had on her rice noodles there includes gluten.

Just as doctors are becoming more aware of the various symptoms of celiac disease and are doing a much better job of diagnosing more individuals with the disease, we need more dining options, not fewer.

There must be business benefits to providing food for this growing market. In the past few years a Colorado restaurant, Beau Jo’s Pizza, added a gluten-free menu (thank to a partnership with Deby’s products) and draws many “mixed” families, feeding both those who need gluten-free food and those who eat from their regular menu.

So, on Saturday when once again Christiana was faced with going hungry, as another restaurant did not offer something simple like corn tortillas, we walked over to Beau Jo’s for a little comfort food. She got a huge slice of cake (made by Deby’s), which put some smiles back on her face. But it wasn’t the meal she wanted or needed—all she wanted was a quesadilla made from corn versus flour tortillas.

I do hope that the pen (keyboard!) is mightier than the sword because it’s time for me to do battle, nicely, of course, in the name of my family members and all those others who just want to be able to do something most of us take for granted.

Finding something to eat shouldn’t have to be so hard.

Today I am going with my yoga friends to celebrate the Chinese New Year—the Year of the Ox—by eating lunch at the Twin Dragon. (By the way, Twin Dragon has gluten-free offerings, too!)Chinese New Year reminds me of chi.

Years ago our business worked with a CPA—who wanted to be a healer. Talk about varying interests. Long before I knew anything about feng shui, he told me that clutter was bad chi.

I didn’t understand what chi was at the time, but I knew that clutter was no good for me. Too bad I have always been drowning in it, due to my lifelong difficulties with both knowing where to put things and when to let them go.

Chi is the life force—of the universe, people, even buildings and homes. T. Raphael Simons says, “When (Chi’s) flow (in the home) is obstructed due to clutter . . . your chi becomes obstructed, the elements in your body become unbalanced, and your health and affairs suffer.” (Feng Shui: Step by Step, Crown Trade Paperbacks: New York, 1996, p. 95.)

I keep a pile going for charity donations, but heaven knows the pile is always way too small! Last night when I received my reminder call from the charity’s pick-up service, I had two bags ready. Now seven very full bags sit on the porch.

Kids’ books. Clothes that no longer fit or never get worn. Boots. Hats. Towels from my mother’s place—like I need more towels falling out of my linen closet. But someone out there does need towels.

My bad chi may be someone else’s necessity for living through these tough times.

Sometimes the bad chi is inside us—not that I’m 100% convinced we can really blame the clutter. On the other hand, the clutter is leaving the house at the same time the story is being written down on paper and loosening its grip on a heart.

Coincidence—or not?

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