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What & Where I Eat: A Q&A on Re-Find Health

I recently had the pleasure of answering a few questions on Re-Find Health about how I handle eating out at restaurants as well as what I eat at home. Here are a few of the questions (and answers) but be sure to click through to the original article on Re-Find Health to read them all.


CA: Do you put much thought into where you eat out? Or do you simply go anywhere and try to make do with what’s on the menu?

NG: I put a fair amount of thought into where we can safely eat out. Unfortunately, I learned quickly and completely that while many eateries say they can provide safe, gluten free food, often that is not the case. Pizzerias that offer gluten free pizzas but they toss the dough into the air are contaminating everything in that restaurant, even the salads. Unless a restaurant has a separate designated gluten free kitchen, the risk of contamination with gluten is enormous. Corporations, fast food joints and restaurants like to jump on the gluten free bandwagon because they understand that many people are interested in eating gluten free, not just the people diagnosed with celiac disease and this is impacting their profits. They offer gluten free options without realizing or taking into account how to prevent contamination and cross-contamination. Additionally, if I am going out to eat with my family, friends or for business, I look for a restaurant that is safe for me with good, quality food that we all can enjoy. I always look for and ideally choose restaurants that are designated gluten free, if that is an option.


CA: Most memorable restaurant meal in (or near) Salem?

NG: I have to confess, my most memorable gluten free restaurant meals have taken place at Eats and Treats Cafe in Philomath, Oregon. Several years ago, when Katy McHenry was employed at Gluten Free RN, we held a community meeting with the intention of having someone (but not us) open up a safe restaurant in our area. Katy’s Dad showed up to take notes for the meeting. It wasn’t long after that initial meeting that Katy’s Mom and Dad opened up Eats and Treats Cafe. The very first meal at Eats and Treats Cafe several years ago was extremely exciting and memorable, as has been every meal since. People, quite literally, travel great distances just to experience the incredible 100% gluten free barbecue, baked goods and other tasty foods on the extensive menu. Whenever Katy is back in town for a visit, we happily, proudly and safely eat out at Eats and Treats Cafe.


CA: Most memorable restaurant meal outside of Salem?

NG: My most favorite and memorable restaurant meal occurred in the Mission District of San Francisco, California at Pica Pica which serves 100% gluten free Venezuelan food. My mouth is salivating just thinking about their great food. The first time we ate there, we just kept ordering more and more food because we could not get enough of the incredible flavors. The arepa are handmade with either white or yellow corn fresh, every day. The meat options are spicy and tasty beyond belief. They also offer yuca fries on the menu. The food is fresh, tasty, gluten free, not expensive and amazingly fabulous. Thankfully, I find myself traveling to San Francisco frequently and always make sure at least one trip to Pica Pica is on the travel agenda.


CA: For people with special diets, how do you suggest they talk with restaurant staff in order to get what they need?

NG: I recommend that people do their homework first by asking people they trust for recommendations for safe restaurants. There are a few restaurants that I recommend that are not 100% gluten free but my criteria is pretty strict. People need to be very clear in communicating their needs to the restaurant staff. It might help to call ahead and ask the important questions before you show up. One app that we rely on when we are traveling is Find Me Gluten Free. We use that as a starting point but continue to ask questions until we are relatively certain the place is safe. Ask as many questions as you need to in order to get the information you need to eat safely. Whenever your food is delivered to your table, always ask the person presenting it to you, “Is this food gluten free?”. It is amazing how many times that simple question at the point of delivery has prompted that server to say that ‘well, no, it isn’t gluten free’. There are times restaurant staff have assured me that food is gluten free, but when I test to with my Nima Sensor or EZ Gluten test strips, it tests positive for gluten. If you really want to have another way to feel safer eating out, invest in either of these options and test the food at your table. You have to be prepared to not eat the food if it comes up positive for gluten.


Read the Rest of My Answers on Re-Find Health
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YOUR Gluten Free Story

Please share your story with us…

Our goal is to spread the word of the many faces of Celiac Disease/Gluten Intolerance. In order to do this we need the stories of those who have achieved a healthy life through a gluten free diet. Please be specific, but do not share anything that you would not be comfortable sharing with the world. We would like to use these stories on the Gluten Free RN’s website and possibly compile them into a book. By giving us your story you are acknowledging that we may publish it. Stories have the ability to remain anonymous, if you would prefer. Please include:

  • Your related symptoms and conditions
  • If you received any other health care treatment in the past (effective or not)
  • When you started a gluten free diet
  • Whether symptoms resolved

Remember, there are over 300 health conditions that have been associated with Celiac Disease. If you have been diagnosed with something in the past that you did not know was related, there is a good chance it might have been.

Please submit your story through the website or by mail to:

The Gluten Free RN
215 SW 4th Street
Corvallis, Oregon 97333

Thank you for your story. With your help, we can spread awareness of this common autoimmune condition not only within the healthcare community, but throughout the nation.

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Chloe Marie: The Amazing Gluten Free Dog

Five years ago when I began looking for a dog I knew I had found the right one when I found Chloe.  She was adorable, energetic, and best of all cross-eyed.  Chloe seemed to be the perfect dog. However, I was unaware of the many vet trips we would take over the next few years.

Chloe’s first trip to the vet occurred only four months after her coming into my home.  To my surprise when I got home from school Chloe had several puke piles around the house, and her stomach was so bloated she looked like a doggy balloon.  Knowing something was definitely wrong I grabbed Chloe, lifted her into the car, and drove her straight to the emergency vet.  Although it was clear she was in pain, she laid on the vet office floor looked up at me with her beautiful eyes and wagged her tail.  It was that moment that I knew I would do whatever it takes to save her.  After a brief examination the vet informed me that Chloe had a gastric torsion.  Essentially she had gotten sick, and started puking so heavily that her stomach twisted.  Chloe had to have emergency surgery.

After Chloe recovered from her surgery she seemed to have little to no problems.  Over the next couple of years she was a really happy dog.  She loved running, swimming, and playing with other dogs. I did however have some small concerns about Chloe’s overall health.  She had occasional diarrhea, a stomach rash, and she always had trouble putting on weight.  Being the overprotective mom I am, I called the vet with questions at every slight chance of illness, and I brought Chloe in for all of her routine check ups. When I mentioned my concerns to the vet he had reasonable explanations for every problem. Her rash was from her surgery, her weight was her breed, and the diarrhea he felt could be worms. He gave me medication for the worms and told me to call with any other concerns.  Over the next few years Chloe’s health was about standard.  She occasionally had some joint pain but other than that she was fine.

It wasn’t until last year that I realized something was seriously wrong with Chloe.  Over the last year my husband and I had noticed her mood, and energy starting to rapidly decrease.  We just assumed it was her age.  We knew she was about 5, and that large breed dogs typically didn’t live long.  Then we noticed every morning Chloe’s dog bed would be soaking wet with urine.  We took her to the vet and without running any tests he let us know that she was going through a hormonal imbalance, and he gave us some medication to give her and sent us on our way.

For a while after the vet visit, everything seemed to be going fine. Chloe would still occasionally wet the bed, and her mood was still decreasing, but we just figured it was something we would have to deal with.  Then about two months ago my husband and I noticed a rapid change in Chloe’s physical appearance and mood.  She was extremely thin, she wouldn’t eat, and she was so fatigued she could barely get off the couch.  After watching her for a few days we took her back into the vet for some answers. The vet examined Chloe and expressed his extreme concerns for her health.  He said she seemed anemic.  She had developed small skin tumors, she was lethargic, and he was concerned about internal tumors.  He drew her blood, gave her a cortisone shot, and sent us home with steroids.  The next day he diagnosed Chloe with an autoimmune disease, and told us to prepare for the worst. He let us know that her mood might get better with the steroids, but we could be in for a long road ahead and that it was quite possible her time was up.

Now to most Celiac patients, Chloe’s symptoms probably sound familiar. She had diarrhea, a rash, she was skinny, lethargic, bladder problems, and now an autoimmune disease.  Not knowing any better I figured she was just a dog who had health issues, and I prayed that she would get better. I expressed my concerns for Chloe with Nadine and she recommended I put her on a gluten free diet. She pointed out the similarities between Chloe’s illnesses and celiac disease, and finally made a connection I couldn’t.

Chloe has been off of her steroids and gluten free for over one month now and she has more energy than she knows what to do with. We no longer have bed wetting problems, her energy is back, her coat is shinier, and for the first time in a year she wants to go for runs and play with other dogs.

Gluten free for your beloved pet
Gluten intolerance and celiac disease have been proven to be prevalent in canines. Unfortunately due to the wide variety in symptoms, it is not something that veterinarians often recognize.  Luckily there are great resources on the web for information involving pets and gluten intolerance.  Below we have attached some fantastic articles that will help you decide if a gluten free diet is right for your animal.

http://www.ehow.com/about_5300217_gluten-allergy-dogs.html

http://www.the-gluten-free-chef.com/pet-nutrition.html

http://www.glutenfreesociety.org/gluten-free-society-blog/dogs-are-gluten-intolerant-2/

http://www.celiac.com/articles/1129/1/Gluten-and-Toxins-in-Pet-Foods-Are-they-Poisoning-Your-Pets-By-Jefferson-Adams/Page1.html

http://distinctivedog.com/2010/08/gluten-and-your-dog/

Cross contamination
When deciding to put your dog on a gluten free diet, please consider the cross contamination issues that come into play with keeping gluten filled dog food in your home. It only takes a single breadcrumb to trigger an autoimmune reaction in a celiac patient.  If you decide to keep your dog on a gluten diet consider wearing gloves, or washing your hands after feeding them.

Food Recommendations
Here at the office all of our dogs have gone gluten free.  We have tested several different “grain free” dog foods, and unfortunately most of them do not test 100% free of gluten.  The only food that has past the test is Natural Balance, LID. This is a great dog food that can be bought at most pet supply stores.  It has a limited amount of ingredients, and comes in several different varieties.  Remember when switching your pet to a different food to always slowly switch them over because their stomachs cannot handle a rapid change in foods.

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Heidi’s Story: “A is for Anxiety”

Heidi lines her kitchen table with a virtual pharmacy of prescription pill bottles; celexa for sadness, ritalin for restlessness, ativan for anxiety, depakote for dark downs and hysterical highs, unisom for insomnia.   Each bottle tells a tale in Heidi’s life.

Sadness
As an infant, Heidi was adopted by prestigious Southern Californians: a psychologist and his wife.  She knows just two things about her origins: 1) her birth mother was very young when she had her, and 2) there was a history of diabetes in her family.  That’s it – nothing more.  No explanation for why exactly she was given up, who her father was, or if she had any more biological siblings.  Very little information; lots of gaps and holes.

What she did have was a privileged upbringing- an estate with a view, the best schools, horse riding lessons, and…she was daddy’s girl.  Her father worked long hours counseling clients out of a home office but always made time for special little rituals with Heidi.  In the mornings they squeezed fresh orange juice together, sitting down at the table afterward with their matching glasses.  Afternoons they walked the same path of their property together until it seemed that their footprints were a part of the landscape.  At night he kissed her on the forehead and called her “butterfly”.

Heidi’s mother was more distant.  Hugs were rare and felt forced.  Approval was hard to come by.  Warmth seemed reserved for her brother Ronnie, who came by way of another adoption when Heidi was three.

“I hated Ronnie for showing up,  I bullied him.  I called him all kinds of names.  I would kick and punch him until he cried.  It makes me sick to think about it now.” The rivalry escalated over the years and created a rift between her parents.  “One day my mom actually looked at me and said, ‘Your dad and I used to be happy and life was easy.  Having children ruined our marriage’.”

Sadness.  The feeling of being unwanted: before her birth and also after.

Restlessness
So yes, Heidi was provided with opportunity.  She attended the best private schools in Santa Cruz, with children of the other local elite.  They had the freshest textbooks, the most ideal student-to-teacher ratios, artists in residence, and unique, challenging, courses.  Where the majority of her peers seized these opportunities and excelled – whether out of self-determination or pressure from parents – Heidi failed and fidgeted.  “Sitting in a classroom was the hardest thing.  Fifty minutes seemed like waaaay too long for anyone to sit in the same chair”.

Heidi’s classroom routine was: bounce knees nervously till someone asks, “where’s  the earthquake?”, drift off in space, doodle caricatures of her classmates, tap pen nervously and to the annoyance of others.  Eventually she just stopped showing up to classes at all.  “I skipped out with this angsty little group of rich kids, doing what kids do when they skip classes.  We smoked pot, we drank in our parents dens, we stole stuff we had more than enough money for”.

All this absenteeism and trouble making led to a string of “fails” on her report card, a ‘Minor In Possession of Alcohol’ charge, the discovery of pot in her locker, and a bust for shoplifting.  By the end of her freshman year in high school, she had been kicked out of one private school and two public ones.  The last resort was an alternative setting for behaviorally and emotionally challenged youth.  “Pretty much all the delinquents,” says Heidi, pulling out the year book from her sophomore year.  Pictured within is a motley crew of kids sporting mohawks, heavy makeup, multiple piercings, and expressions ranging from vacant to brazen.   “I felt more at home here- less weird.  These kids were more like me.  They had real reasons to be angry, real passions, and a real cause for rebellion.”

“The way I looked drove my father crazy.  I think that was even harder for him than the trouble I got into.  Like the trouble he could break down and rationalize as a psychologist.  But the dad in him couldn’t deal with what was right in front of his face”.  Their very last argument was, in fact, about eyeliner.  It was a loud and heated one with a lot of mean words.  It built slowly but ended abruptly, with Heidi slamming the door and driving away.  When she came back it was bedtime but no one was at home.  There was only a note on the kitchen counter.  She can’t remember exactly what it said, but what the words amounted to was: her father was dead.

Anxiety
What followed? “Guilt- for years.  Obviously.  I mean I’d give anything for a better goodbye.  Or wonder if he’d still be here if I had said goodbye.”  Heidi wrestled with those- and other questions- until something came along to help in letting go of them: motherhood.  “I realize as a parent that no matter how ugly things get, you love your kids and they love you back.  There’s just no doubt”.

All grown-up and pulled together, Heidi is now a hardworking mother of two. Mornings are for packing lunches, braiding hair, walking both children to their classroom doors.  Afternoons are for swimming lessons, Little Kickers classes, and playing at home.  Four days a week, Heidi works the swing shift at a psychiatric residential treatment center for youth.

“I see myself in these kids.  A lot of them are going through the same troubles that I was, the same emotions, the same confusion.”  Though the work can be stressful and sometimes dangerous, Heidi thrives on the moments when she gets through to a client, providing them with hope that the future can be brighter.  Underneath the happy veil however, there still lies a lot of worry.  “I always feel like something bad is about to happen.  Or, like something bad’s already happening, but I’ve forgotten what it is.  I’m convinced, always, that there’s something wrong with me.  Stomach cancer, brain tumor…something.”

Heidi has a close network of friends and they are always telling her that the only thing wrong with her is hypochondria.  “They don’t say it meanly-  they’re just honest, and they know better than to feed my paranoia”.  But in the fall of 2009, things really were starting to go wrong in her body.  “Working in residential, there are a lot of germs floating around. That fall and winter, I had strep throat three times and bronchitis twice.  I was almost constantly on antibiotics.  After that I started having a lot of stomach problems.  I would bloat to where it felt like I was pregnant, and always felt tired or nauseous.  My doctor ran all kinds of tests, looking for ovarian cysts and ulcers.”  Looking for an ulcer meant subjecting herself to a stomach scope- the fifteen minute swallowing of a long tube with a miniaturized color TV camera at the end of it, allowing for close examination of the esophagus, stomach, and duodenum.  The result: no ulcer.  More tests and x-rays did reveal something unrelated to Heidi’s digestive troubles.  She was found to have a benign tumor on her liver.

Dark Downs and Hysterical Highs
With surgery invasive, and the small tumor posing no imminent threat, her doctor advised a “wait and watch” approach.  He also prescribed one Zoloft for depression. Through all those appointments, her doctor had picked up on a certain level of sadness that was leading to a lack of sleep and motivation, and a whole lot of hopelessness.  “I went crazy with the first pill I took…literally.  I could go days without sleeping, I was paranoid out of my mind.  I’d always been anxious and nervous around people but now I couldn’t even leave my house”.  She discreetly met with Human Resources at work.  With her job protected through the Oregon Family Leave Act, she hunkered down at home for a six- week leave of absence.

Insomnia
“Those six weeks were a major roller coaster.  Some days I was exhausted, laying in bed, crying over nothing.  Other days I was filled with crazy energy – dancing around the house with my kids, talking hysterically and rapid fire, practically climbing the walls.  Every night my mind was racing.  I could NOT sleep…no matter HOW tired I was”.  Over the course of those weeks she was slowly weaned off of the Zoloft and popping Unisom to get some ZZZ’s.

In the ten months since then, Heidi has been through a cocktail of prescription drugs, and accrued a growing list of labels: Attention Deficit Hyperactive Disorder, Bipolar Disorder, Anxiety.  “I try not to take the labels on and let them define me.  I see that too much in the kids at work.  But I do know something is wrong with me, and I don’t want to feel like this forever.”

The Challenge
Convinced by a friend who has both Celiac disease and experience in the mental health field, Heidi has agreed to join the 6 week long gluten-free challenge.  “I’m willing to try anything.  I can’t deal with this anymore.  The insomnia, depression, and mania are mostly under control but the anxiety is definitely not.  That has always been a problem, and I feel like it always will be.  It makes me feel insane.  Truly.  It limits my life in so many ways.  So if changing my diet can help . . . yes, I will try that.”

Studies show a close link between celiac disease and mental illness, with three theories in explanation.  One idea is that antibodies generated in response to gluten proteins can attack the brain.  A second idea is that the gluten proteins themselves, or the peptides generated from them during digestion, are acting directly on the brain.  A third idea is that your brain is affected by immune responses in other parts of your body.  Celiac is an autoimmune disease; all immune activity sends signals to the brain to change behavior and to recruit a range of defensive responses.

Disturbances to brain function vary from routine effects such as sleepiness, fogginess, and brief episodes of confusion to symptoms of major mental or neurological illness. People with celiac disease may suffer for many years, and under varying labels, before the correct diagnosis is made.  Most will have reported along the way that they never feel well physically; this will typically be attributed to psychosomatic fears.  They will report periods of fatigue, difficulty concentrating, mental “fogginess”, extreme mood fluctuations, tearfulness, and irritability.  Common diagnoses include: Attention Deficit Hyperactive Disorder, Major Depression, Bipolar or Borderline Disorders, Anxiety, and Schizophrenia.  Fortunately, most patients will return to “normal” after fully transitioning toward a gluten-free diet.(1)

A family history of “psychiatric problems” is more common in patients with celiac disease.  While Heidi does not have this sort of information on her biological family, she knows there was a prevalence of diabetes.  She had her own brush with this during her first pregnancy, developing gestational diabetes.  Like most women, her blood glucose levels returned to normal after pregnancy.  She is, however, at greater risk for developing diabetes later in life and her son was, well . . . BIG.  “Noah weighed 10 lbs, 7 oz at birth.”

Celiac disease and diabetes often occur together, at a rate of 10 to 20% in people with type 1 diabetes.  By comparison, the rate of celiac disease in the general U.S. population is about 1 percent.  Diabetes and celiac disease are both autoimmune disorders.  Genetic links between the two diseases are becoming clearer, and it is thought that a malabsorptive disease such as celiac may create the opportunity for hypoglycemia. (2)

Taking a look at Heidi’s more recent health history, we pinpoint two things often related to celiac disease and gluten intolerance: 1) the overuse of antibiotics, and 2) unexplained abdominal pain and bloating, most often after the consumption of food containing gluten.

“My diet is pretty heavy in gluten, I guess.  I eat what my kids eat; lots of pasta, sandwiches, cereal.  At night when they’ve gone to bed I like to relax with a beer.  I never thought of beer having gluten until my friend pointed that out to me.  So, I think the food will be pretty easy to give up, but that nighttime ritual will be hard.”  We sit down and make a list of “food alternatives”.  Heidi agrees that it should be simple to switch the entire family to a gluten-free diet for the 6 weeks.  She’s not at all overwhelmed by the idea of using rice flour bread and quinoa pasta.  As for the beer, I show her a list of gluten-free varieties available at local grocery stores, and also present the option of drinking Hard Apple Cider instead.  She decides she can do this.

Weeks 1 through 3
At the end of the third week of her gluten-free trial, Heidi is happy to report a lot of positive changes.  “I’ve had more energy without a doubt.  And have been sleeping better!  It’s interesting.  Usually when I was falling asleep I’d have this very strange, almost drunken, confused feeling.  I’ve noticed in the last couple weeks that’s gone away.”  Another thing that’s starting to subside is the stomach pain and bloating.  “I do still have troubles on my work days.  I’ve been eating at the cafeteria with the kids at work.  I’m making sure to just go for the salad bar, skipping the croutons and sesame sticks.  But it’s weird-every time I eat there I feel awful afterward”.  We talk about the reality of cross-contamination.  That can be a hard one for people to buy into; tiny traces of gluten can spread through the shared use of cutting boards, utensils, serving trays, and cooking surfaces.  All it takes is one sesame size kernel of gluten to disrupt the system.  This is of great concern, especially in a residential setting such as the one where Heidi works.  “When we take a group of clients to the cafeteria, we mark attendance in a binder.  The first page lists which kids have food allergies, and that’s something we’re supposed to keep an eye on.  A lot of those kids are diagnosed with gluten and wheat allergies or full-on celiac disease!  I know if I’m not getting a good experience when I’m being so careful about it, they aren’t either”.  We talk about discrepancies in care.  A client with an allergy to bee stings will never set foot outdoors without an EpiPen in the hand of a staff.  Those with latex allergy will never come near it.  There is some progress in the recognition of food allergies, but this is mainly relegated to peanuts.

Client care is a larger issue than Heidi and I can tackle.  We can only take care of her.  She makes the decision to bring her own packaged meals to the cafeteria, utensils and all.

Weeks Three through Six
Heidi has made it through six weeks of eating gluten-free amidst the challenge of balancing work, motherhood, and her own emotions.  “Bringing meals to work was definitely the right choice.  I feel much more comfortable with my stomach.  Less self-conscious”.  As for drinking, she says this has actually decreased with the switch to gluten-free beer.  “I don’t know what it is, but I’m good at just one beer when it’s gluten-free.  Maybe part of it is sleeping better?  I don’t know.  But before I would average two or sometimes three drinks in a night.  Now it’s just one, or sometimes none”.

Heidi is not imagining things.  Wheat is one of the most addictive things in existence.  The wheat protein contains a number of opiod peptides which can be released during digestion.  These may affect the central and peripheral nervous system, creating the same addictive attachment to muffins and pasta as to drugs and alcohol.  This also explains why withdrawal symptoms are seen in individuals during their first days of going gluten-free – that “worse before it gets better” effect. (3)

Heidi is also greatly relieved to have lost about five pounds in the last six weeks.  Weight gain is one of the more common side effects of Depakote, and while the medication may have leveled her moods out a bit, she was not exactly pleased with going up a pant size or two.  On a less superficial note, Heidi has been able to decrease her daily use of Ativan.  “Before the gluten-free trial I was taking Ativan up to five times a day.  Pretty much first thing in the morning I would need it, then several times in the afternoon, and then definitely before bed.  I wasn’t really even paying attention to it at first, but all of a sudden I realized I was taking less.  Mostly only on really stressful workdays and sometimes still at night.”  She is enthused at the prospect of decreasing or discontinuing other medications; after her traumatic experience with Zoloft, she knows to work closely with her doctor before making any changes.

The End (and The Beginning)
The question for anyone at the end of a gluten-free trial is: will you stick with it?  The greater the results, the greater the chance that they will.  Heidi is one of those people who has experienced some very positive improvement in both health and mood.  She ends her six weeks with a commitment to carry forth with a gluten-free diet.  “I feel closer to being “normal”, less like this crazy person walking around with a bunch of labels.”

(1) Lewey, Scot MD; Gluten Free Diet Should be Considered for Everyone With Neurological and Psychiatric Symptoms

(2)  Vitoria JC, Castano L, Rica I, Bilbao JR, Arrieta A, Garcia-Masdevall MD: Association of insulin-dependent diabetes mellitus and celiac disease: a study based on serologic markers. 27:47–52

(3)  Sephen Levine, PhD; The Nutrition Notebook: Food Addiction, Food Allergy, and Overweight

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Claire’s Story

Claire fiddles with a napkin, folding and unfolding it, while telling me the story of Her and Food.  “I guess you could say I was raised on gluten, mostly out of boxes.  Mac-and-cheese, cereal, Beef Stroganoff. And- ooh . . . pizza. At least once a week.”  Claire’s story is not unusual.  Being in her thirties means that her own mom was raised in the advent of the microwave and the fast food chain, when suddenly convenience took priority over healthfulness.  Claire’s mom – a busy woman raising three children while working full time – definitely sought out convenience.  “There were lots of ‘fend for yourself’ nights,” says Claire, “There were the nights of cereal.  You know how that goes – the quantities of milk and cereal never quite match up. So you just keep eating more of it”.  She grins.

Gluten and gluttony may have ruled at home, but not in the place where Claire spent a majority of her other hours – the ballet studio.  “It was competitive.  Not just, you know, as far as who was the better dancer.  But for who was the thinnest.  We knew who had the longest limbs.  The smallest thighs.  We knew, literally, each other’s waistlines in inches.”  Claire says that during her actual dancing years, she managed to escape the trappings of an eating disorder.  She credits this not to a well adjusted psyche, but to an incredibly fast metabolism.  “Then around the age of 20 something switched.  Not just my metabolism, but life”.  Claire had quit dancing.  She says she floundered around for a while, looking for a way to expend all that excess energy.  She tried rock climbing (her strong dancer’s toes came in handy), writing (“every girl has her Sandra Cisnero’s phase, right?” she asks), and traveling.  “Travel was a great distraction.  So great that I didn’t even notice as I gained twenty pounds.”  She’d been living off the loaves of bread at restaurants where she bussed tables, and the “most amazing yet also terrible” pink, frosted, sugar cookies found at convenience stores everywhere.  “That bread and those cookies.  I could eat them endlessly.  Addictively.  They tasted so good but made me feel terrible.  And then, you know, there was the twenty pounds . . . which I finally noticed one day when I looked in the mirror.”

Claire started running- first with an inhaler for her asthma, then eventually without.  Initially every other block – then for miles straight.  She shed pounds.  She felt great.  She was eating mostly fruits, vegetables, lean meats, and gluten-free grains.  “I didn’t know anything about being gluten-free back then.  I’d never even heard the word ‘gluten’.  It just so happened that’s what my body wanted.”  Then one night, Claire fell off the deep end.  She made a carrot cake for her and her roommates.  She carefully trimmed around the edges of the rectangular cake, shaping it into a perfect oval.  She began to eat the extra bits.  She figured those would be even better with a little bit of cream cheese frosting. Sort of like the milk and cereal conundrum, one called for more of the other.  She ate that way – cake, frosting, cake, frosting – until her stomach was large and sore.  And then she did something she’d heard from the stall of a ballet studio bathroom, but had never personally done before.  She made herself throw up.

“It was like I’d found this great secret.  There was a way to gorge on food the way I used to, but not be stuck with it”.  Claire still ran a lot and ate well in front of others, but back at home, late at night, was another story: bread, butter, cinammon, sugar; vanilla ice cream with melted peanut butter; cereal and milk, milk and cereal.  “This was seriously how I ate growing up.  And not just me, but my mom and sister, too.  Emotional eating.  That wasn’t even, like, something we were in denial of.”  Claire says she figured this would be a short-lived phase, like what she’d seen in after school specials or the “It Happened to Me” section of 17 Magazine.  But then all of a sudden it was eleven years later, and the eating disorder was still there, bigger and badder than ever.  “I basically destroyed my health.  Bulimia led to ulcers, to throwing up blood, to acid reflux, to an electrolyte imbalance.  Then, at a certain point, throwing up isn’t enough.  You turn to laxatives and diuretics.  You dabble in drugs a bit…cocaine, amphetamines.”  Claire takes a moment to explain that she hasn’t touched drugs in a long while.  She says it was mostly just one summer.  She says it shows how much food had taken control of her life.  “Never, ever, ever would I have thought I’d touch drugs.  I was so against it.  I was the good kid.  I took great care of my health.  I was the dancer.  The runner.  Then all of a sudden I was just the girl who wanted to be thin.”

There were a few times when she did manage to get really, really, thin.  This was usually when there was some kind of impending event.  Like a Christmas when all her family would be back in town.  Or her sister’s wedding.  Or . . . her own wedding.  “I was a little confused on my wedding day.  That’s the day everyone’s supposed to tell you how beautiful you are.  No one was telling me that.  Now I look back on the pictures and I know why.”  We’re sitting at Claire’s laptop and she’s able to pull up one of her wedding photos.  There she is, thin as a wisp – her strapless dress is lovely but barely hanging on.  Her hipbones make sharp slices of the sequined chiffon.  Her chest bones are all lines and edges.  Her arms are like something out of the third world, like from somewhere where you can’t get to food no matter how hard you try.  She is very clearly starving.

After her wedding, with the pressure off, Claire strove to eat more healthfully.  She kept a food journal with the goal of eating at least 1200 calories a day.  Some days she ate lots less, sometimes more.  She looked for patterns.  She was well aware that days of fruits, grains, and meats were better.  She felt comfortable in her body and calm in her mind.  Days of pastries and cereal were different.  Her stomach immediately felt heavy with pain.  Her face puffed.  Her skin hurt.  Even if she hadn’t been binging, even if she’d had just one-half muffin or a triangle of a sandwich, it certainly felt like more.  After years and years of the binge-purge cycle, she could think of no other response to the physical pain than to purge.  “It’s a slippery slope.  At first you’re in control.  You’re able to stop yourself.  You can look at your food journal and know, for a fact, you have eaten healthfully.  You’ve eaten just one muffin, not ten.  But when your body feels like it’s binged, your eating-disordered brain says, ‘well, might as well just go for it’”.

The connection between eating disorders and celiac disease or gluten intolerance is well known and well documented.  Claire’s food diary is not unique.  Studies with bulimic patients reveal classic celiac symptoms not only when the eating disorder is active, but even after recovery.  Patients describe the same thing as Claire – leaving the table feeling quite comfortable, but then experiencing abdominal distention and discomfort to where they can only relieve themselves by purging.  While food diaries show very clearly that the symptoms only occur after meals with gluten, they will be told by doctors that this is entirely psychological.  Rather than being tested for celiac disease (which bulimia is a well recognized symptom of) these patients will be diagnosed as having psychological disorders.

Claire fell heavily back into a phase of bulimia.  She was binging and purging up to three times per day, all unbeknownst to her husband.  “You get good at hiding it.  There are tricks”.  But then the gig was up;  Claire doubled over in the bathroom at work one day, vomiting large amounts of blood.  She was rushed to the doctor, who prescribed her Aciphex for a bleeding ulcer.  “He knew of my long battle with bulimia.  I even asked him, ‘have I done this to myself?’  He told me I hadn’t.  He said it was just an ulcer… just an ulcer”.

The Aciphex took away some of the burning pain in Claire’s stomach and throat, but wreaked havoc on her digestive system.  “While on the medication, I had severe diarrhea.  Food ran through me.  After I was off of it, I could go days without a bowel movement.  My stomach felt like it had a pound of bricks in it”.  One other result of the Aciphex incident?  Her husband was now in-the-know.  “The eating disorder was no longer my problem.  It was ours.  I had to be honest with myself, and honest with him.”

Ulcers are in fact a symptom of long-term bulimia, the result of excess acids in the stomach.  In other patients, ulcers can be a common misdiagnosis for celiac disease.  The two can mimic each other very closely, and doctors are often more aware of ulcers as an explanation for the burning and discomfort that follows eating.  Instead of testing for celiac disease or gluten intolerance, strong medications such as Aciphex will be prescribed, and this may only exacerbate the underlying problem.  In Claire’s case, the combination of medication, drug use, and poor diet likely wreaked havoc on her digestive system.  Where some people are born with the propensity toward celiac disease, others may “acquire” it.  Drugs (prescription or illicit) and poor diet can damage the intestinal villi, flattening it to where an inflammatory response will be had upon eating gluten.  Whether Claire was born with the gene for celiac disease or she triggered the condition along the way is a mystery.  But the result is the same, and painful.

Claire launched back into another attempt at healthy eating.  She kept up with her food journal.  She avoided those “trigger” foods.  “My trigger foods are, by the way, anything gluten.  Cookies, muffins, bread, cereal.  I started to realize it wasn’t just because I love those foods.  Actually, I no longer loved them at all.  I hated them.  They were killing me”.  It seemed though, that all foods were killing her.  “Everything I eat makes me feel awful.  Everything.  It is very frustrating.  It’s like, here I am . . . I’m ready to eat well.  I’m ready to eat for hunger, instead of emotions.  I’m ready to sit down with people three times a day and talk over food, instead of hiding in my room alone with it.  But everything, everything, leaves my stomach feeling twisted and huge.  One bite feels like five hundred.  My skin itches and burns.  I am gaining weight no matter what I eat.”

So there we have it.  Claire’s reason for joining in on the 6 week long, gluten-free challenge.  She feels like she’s been eating “mostly gluten-free already” but we take a look through her cupboards to see how true this is.  Her wheat-free, Barbara’s Bakery Puffins are not gluten-free; same with the Newman’s Fig Newtons.  We talk about the difference between wheat-free and gluten-free foods.  It’s not just that there is a risk of cross-contamination- these products actually contain gluten.  They are made with barley, or oats.  Same goes for the Teeccino she’s been drinking as an alternative to coffee.  Teeccino, tasty and low-acid though it may be, is made with barley.  As for cross-contamination – there is plenty of risk for that in Claire’s cupboards.  There are cans of perfectly good food that has been “processed on machinery shared with wheat and gluten”.  We plop cans of garbanzo beans, black beans, and vegetable soup in a box, then label it “food bank”.

Next we make a shopping list of good alternatives.  There are plenty of cereals that are clearly labeled “gluten-free”.  Same goes for cookies and crackers.  As for the Teeccino, Claire has been drinking it out of concern for her sensitive stomach.  We place better alternatives on her grocery list: New Orleans style coffee (low acid and with a nutty taste leant from Chicory) or black licorice tea (soothing on the stomach, plus rich enough to please most coffee drinkers).

Greeks used black licorice as a thirst quencher and also to get relief from swelling that is caused by water retention.  The anti inflammatory properties of licorice act on the tissues, similar to cortisone, but without the side effects.  Licorice is prescribed by herbalists, naturopaths, and dieticians for treating and avoiding stomach ulcers.  When consumed before meals on a regular basis, licorice can heal existing ulcers at a 91% success rate.  The herb also acts as a protective stomach lining and maintains stomach acid levels.  For anyone who is newly gluten-free and still struggling with stomach pain and/or inflammation, licorice can provide great relief.

The remainder of Claire’s shopping list will remain unchanged, she’ll just know to read the back label more carefully from here on out.

Weeks 1 through 3
By the end of the third week, Claire and I check back in with each other.  She says she is feeling better, and it’s apparent to the eye; her skin is brighter, she looks more energetic. She says that while still dealing with some swelling and weight fluctuation, her stomach swelling has gone down and her stomach no longer distends after eating.   She does, however, continue to experience intestinal pain and occasional constipation.  Because of how sure she is that all gluten has been removed from her diet, we talk about the possibility of maybe removing dairy for the remaining three weeks of the challenge.  “As much as I love, love, love, cheese,” says Claire, “I’m pretty sure I could do it.  I mean, at this point, I would do just about anything to feel better.  I already feel so much better!  But the thought of feeling ‘normal’ again?  That is very exciting.”

On a psychological level, Claire says that sticking to a gluten-free diet has been very liberating.  “As someone with a long history of eating disorders, ‘rules’ obviously make me feel safe.  But in the past, the rules have always been very limiting, and unhealthy.  They’ve been about numbers.  Like, no more than 400 calories in a day.  Or it’s been about food groups; only vegetables, or only fruit, or only…coffee.  Going gluten-free is so different; I feel safe – I feel like the rules are concrete.  But I also feel like I’m nurturing myself – I’m allowing myself to eat with more freedom and less anxiety”.  She drums her fingers on the table top.  “How did it take so long to get here?”

Weeks 3 through 6
We end Claire’s challenge at Market of Choice in Corvallis, where gluten-free items are clearly marked on the shelves and we can shop easily.  With a handful of snacks and two cups of tea, we settle ourselves into a corner table.  “Well,” says Claire with a smile, “six weeks done”.  She says this is the beginning of something great for her: a chance to restore her health.  “My body feels SO much better.  The exhaustion is gone.  Food no longer feels like poison.  After cutting out dairy, my swelling and intestinal pain has all but disappeared ”.  Perhaps greatest of all, Claire says she has not binged on food for the last two and a half weeks.  “That is huge for me – HUGE!  Maybe two and a half weeks won’t sound like a lot to everyone else, but for me . . . it is.  We’re talking about an eleven year battle with food here.  To go that long eating regular portions feels like . . . freedom”.

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Samantha’s Story

Patient:
Samantha

Age:
23

Age when diagnosed:
16

Symptoms:
Overweight, fatigued, lethargic, mood swings, depression, bed-wetting, underdeveloped bladder, anxiety, diarrhea, constipation, sharp stomach pains, gas, headaches, nausea, canker sores, delayed puberty, rashes, consistent tooth problems, heart arrhythmia, and consistent colds.

Family members diagnosed:
Blood sister
Half sister
Cousins
Great uncle and aunt
Mom

My Story:
I will never forget where I was when I realized my list of health concerns were anything but “normal”. I was in a porta-potty in the middle of Eastern Oregon, praying that I could actually go one day without having chronic diarrhea or constipation. I had taken a weeklong road trip with my friends, and although we were expecting to explore the beautiful sights of Oregon, we spent a majority of the time finding bathrooms and listening to my complaints about my horrible headaches and nasty stomach pains. After returning from the road, I made a trip into the doctor’s office and essentially demanded an explanation. I wanted to know why I was sick, and what the doctors were going to do to make it better.

I was born a healthy baby with no apparent health issues. As an infant I had very few health problems aside from a heart arrhythmia, and an unexplained rash. The doctors informed my parents that the rash was no concern and I would grow out of the arrhythmia. Growing up I was a fairly normal kid. I grew up on a farm south of Corvallis, and was raised by my dad. I spent most of my childhood playing in the fields with my sister and cousin. However, my sister and I also spent a lot of time inside the house, sick with various flu’s and colds.

I was sick throughout a large portion of elementary school. In the third grade I missed a month of school because I was sick with a cold that just wouldn’t go away. My weight was becoming a problem. I had previously been a fairly small child, but I started to gain weight that refused to come off. I also had horrible bladder problems, and was a constant bed wetter. My doctor didn’t think much of my weight or flu problems, and prescribed medication for my “underdeveloped” bladder. Another large portion of my childhood was spent in the dentist office. Genetically my whole family had bad teeth so it was only standard that I would make monthly visits to the dentist.

I made it through my middle school years with very few problems, and it wasn’t until high school that my health issues became more prevalent. I started to have problems at home. I had become extremely moody, depressed, and irritable. My dad and stepmom had a hard time dealing with me, but just assumed that I was a difficult teenager. At this point I was obese, anxious, and had become extremely shy. I had also begun to realize how irregular my bowl movements were, and at the age of 14 I was still wetting the bed. Going into the doctor for my annual check up, I expressed all my health concerns and poured my heart out about my depression and anxiety. My doctor decided it would be best to put me on an antidepressant, and told me that otherwise he had no concerns.

As I began to move my way through high school, I put my issues aside and focused on doing well in school. I continued to have the same health concerns, and developed a few more. I started to have stomach pains, I was fatigued, I had constant headaches, I had a mysterious itchy rash on my knee, and I had not started my cycle. My doctor decided that the majority of my problems were developing from being overweight and that my headaches were due to my need to wear eyeglasses. He referred me to optometrist and recommended I started watching my diet and working out. This would be the last time that I saw this doctor.

While I was having my own health concerns, my sister was having severe health problems of her own. My sister Mary had also suffered from health issues her entire life. Unfortunately hers were much more severe and prevalent than mine. Mary was overweight, often presented flu symptoms, and had chronic back pains, stomach pains, chronic diarrhea and a long list of other problems. When our family practitioner dismissed her back and stomach pains, my parents decided to take Mary to the emergency room. Within hours of being in the ER, the cause of Mary’s chronic pain had been discovered. She had a 20 lb benign tumor in her stomach that had wrapped itself around one of her ovaries and was continuing to grow. After removing the tumor Mary made a slow recovery, but still continued to have persistent health problems. After seeing several different doctors and specialists, and developing several new health issues, Mary was finally diagnosed with Celiac Disease.

Knowing that our previous family doctor had severely misdiagnosed Mary, our whole family began to see a new doctor. After returning from my weeklong excursion with my friends I marched into this doctor’s office and demanded answers. To my surprise he listened to me, took notes, asked questions and looked for answers. Although he had not been the doctor to diagnose my sister, this doctor knew celiac disease was a genetic disorder and decided to do a blood test.

One week later, in September of 2004, I was diagnosed with Celiac Disease. In the following year I began to turn my life around. However, attempting to become 100% gluten free was anything but easy. When I was first diagnosed there were no gluten free bakeries, there was little to no selection of gluten free products in the store, and eating at restaurants was near impossible. I was overwhelmed with how to grocery shop, how to eat, and how to go on living a normal life. Unfortunately, my insurance would not cover a nutritionist or specialist and my family could not afford to send me to one; so I started research on my own. I went to the library and searched for hours on the web, and I started my journey to being gluten free.

Gluten Free…. Right?
Within weeks of starting a gluten free diet I began to have normal bowl movements, my mood was improving, my headaches were disappearing, and I was finally beginning to lose weight. As far as I was concerned I was on a gluten free diet, little did I know that everyday I was continuing to harm my body. In January of 2005 I started my first job at a local pizza shop. I would continue to work at this pizza shop for the next 6 years of my life. My first year working was also my first year being gluten free. I remember feeling like I could do anything; most of my symptoms had gone away. I was finally healthy, I had friends, my energy was improving, and best of all I had lost almost 100 lbs.

It wasn’t until 2007 that I realized my job could be causing me health issues. I was feeling sick quite often, I had horrible nausea, sharp pains in my chest, a rash on my hands, mood swings, canker sores, and continuing teeth complications. When I developed the rash on my hands I decided to go to the doctor. I told him about my nausea and sharp pains, and I showed him the rash on my hands. He ordered me a pregnancy test (for the nausea) and told me that the pizza shop could NOT be making me sick. He explained that gluten had to be ingested, and that while I was around gluten I wasn’t ingesting it so it couldn’t possibly be harming me. I was told that if I wanted proof then I could have the endoscopy test done. I agreed and we went ahead with the test. 500 dollars later I still had no results. My doctor informed me that the camera revealed I was fine. He told me to write down everything I ate and if I continued to feel sick to come back and see him in six months. After talking to my family I decided maybe I was being silly, and perhaps this is how I was supposed to feel. This is when I realized that maybe I was never going to feel 100%, and I might spend the rest of my life feeling less than average.

Over the next three years, I continued to have persistent health problems. Although I knew my doctors and family thought I was a hypochondriac, I still continued to make various trips to the doctors for all different reasons. I was given all types of tests and blood work for all different diseases and ailments. I complained of constant nausea and sharp stomach pains. So I was given several different pregnancy tests, stool tests, and ultra sounds. Then when they couldn’t find a problem I was given prescribed medication to ease my pain. I felt fatigued and tired all the time, so they took my blood work for anemia and thyroid problems. When those came back negative I was told to exercise more and stress less. I had severe mood swings and irritability, so I was told that I was on the wrong type of birth control and was put on several different types. I had severe canker sores on every part of my body, so I was tested for herpes… 4 times. When they finally ruled out herpes I was given an ointment to put on the sores to ease the pain. I was also told that I had mono, heartburn, nerve damage, and stress headaches. It seemed that every doctor had a “treatment” for my problems. However I didn’t want a “treatment” I wanted a solution. I was tired of wasting my time and money on doctors who weren’t invested into truly making me feel better.

It was 2010 when I finally realized that my doctors were not going to be my advocate and I had to take my health into my own hands if I wanted to get better. I decided to forget everything my doctors had said and I turned to forums and blogs on the Internet. This is where I discovered the overwhelming consensus that not only were my symptoms related to celiac disease; they were most likely a direct result of my daily exposure to gluten through work. Of course at this point I was outraged. I knew what was making me sick, and I realized I had no idea how much damage had been done to my body over the last six years. I decided the best thing I could do was move forward, and I took every precaution I could. While I was at work I wore masks, gloves, and I didn’t touch any loose flour, but my symptoms were still prevalent and only seeming to get worse. Unfortunately finding a new job was not an easy task. I had worked at the same place for the last six years. My job had become a part of who I was. I developed a strong relationship with my boss, and she had invested a lot into developing me as her manager. However I knew that my quality of life could be dramatically changed if I was able to find a new job. Shortly after I started my job search, I was lucky enough to find an opening working at the Gluten Free RN office.

Luckily Nadine at the Gluten Free office rescued me from my gluten filled job and I have been “officially” gluten free for the last six weeks. Everyday I take note of what I eat and how I am feeling and honestly I did not know it was possible to feel this healthy. If I had known that it was possible to feel this alive, I would have quit my job at the pizza shop years ago. I haven’t had mood swings, I have no nausea, headaches or sharp pains and best of all I actually have energy. I know that my body has a long way to go before it is damage free and I still have an occasional day where I don’t feel 100%. However, I feel truly blessed to finally be on a path to having a truly gluten free lifestyle.

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Eric’s Story

Here’s something a little bit different for this challenge: me interviewing my own brother.  Before we launch into it, let me tell you how things work in my family: I am the clown, my sister is the diplomat, my brother is . . . the skeptic.  Now, if you’ve got even the most basic knowledge of birth order under your belt, you can guess that I just listed us all from youngest to oldest.  You can also guess that the Big Brother Skeptic does not always take too seriously what comes from the Little Sister Clown.

When I came to Eric with the theory that he would do well to eliminate gluten from his diet, he just rolled his eyes.  I know what he was thinking: “Here we go again”.  I’m sure he figured this was one more strange flight of fancy.  Like yoga, or summers lived out of tents.  (And if he thinks this is weird, let me say in return that I am totally mystified by what he and his friends do: meet up in one house with all their individual laptops, set themselves up at couches or tables, then compete video-game-style for hours straight while eating pizza and not speaking, as warlocks, or wizards, or ninjas, or… I don’t even know.)  You get the picture.  We are different, my brother and I.

We are also the same.  There’s just no getting around genetics.  Like my mother, our grandmother, and many other relatives on down the line, we struggle with health issues commonly linked to gluten.  My grandmother’s intestinal troubles, especially, have been romanticized into family lore.  A woman whose frail appearance belied her inner strength, she raised four children with ferocity, love, and a whole lot omy grandmothertomach pain.  The greatest treat in their home was an avocado: one ofhe only things my grandmother could comfortably eat.  On a good day, mom, her sister, and t brothers found enough coins on the sidewalk to run home with a market avocado in their hands.  My grandmother was also known for drinking loads of coffee.  Constantly.  All day long.  Paired with the stomach … in that really makes no sense, but with her limited food options, coffee was an available vice.  I get it.

I am, however, a little suspicious of these few things:

1) Our staunchly Italian family is fond of a gluten-rich diet.  One might describe dinner as strings of gluten, topped with sauce of gluten, mixed with balls of gluten, and a side of sliced gluten with butter on it.  They weren’t big on fresh fruits or vegetables.  I’m wondering how she ever ran into an avocado in the first place.  What I’m saying is, I don’t believe it was all food other than

avocados disrupting her system. I would bet that with some progressive information, and a foray outside of traditional Italian cuisine, she could have broadened her diet.

2) The only explanation my grandmother ever received for her digestive troubles was… bleeding ulcer.  She never underwent a stomach scope or other medical proedure for proving this as fact.  She simply described to her doctor what happened whe she ate, and he offered up the diagnosis of an ulcer.  I wasn’t there for their converstion.  I wasn’t even born yet.  But I do have trouble believing someone with an ulcer wuld have less abdominal pain when drinking copious amounts of coffee.  Peptic and beding ulcers are the most common misdiagnoses given in place of celiac disease and gluten intolerance; their symptoms can mirror each other.

3) Let’s backtrack to that word “diet” for a moment.  We know a lot more about eating disorders now than we did in 1951.  This is not to say that Anorexia and Bulimia did not exist.  They did.  Just not in the same in-your-face, People Magazine, spindly mannequins, Ally McBeal sort of way.  The “avocado and coffee for stomach pain” story? That may have flown back then – I don’t believe it would now.  Several of my more contemporary family members have struggled with eating disorders; they have all woven much more convincing tales.  I’m sure her stomach pain was real.  There’s a reason why          eating disorders are one more symptom of celiac disease and gluten intolerance: if eating food makes you feel terrible, chances are you will develop an issue with it.

I reflected a lot on my grandmother when muddling through my own debilitating health issues a couple of years ago.  Long story short: it was frustrating, it was confusing, I was given multiple misdiagnoses (including bleeding ulcer), then finally I was found to have celiac disease.  Fast forward one entire, gluten-free year later, and I was in pretty excellent health.  I wish the same could have happened for my grandmother.  I was determined to bring the same experience to my own family members; starting first with my brother.

Swaying the Skeptic ,

By the fall of our visit, Eric had been taking a combination of Zantac and Prilosec for eight years straight.  Zantac is prescribed for stomach ulcers, Prilosec for gastroesophageal reflux disease (GERD).  Both drugs come with some pretty hefty side effects – constipation, diarrhea, headache, gas, nausea, stomach pain, vomiting.  These are the most common complaints.  They typically subside over time, and then leave people like my brother with a much higher quality of life. Until stuck in the depths of my own health struggles, I’d never known how sick my brother had once been.  We’d talk on the phone, and I’d tell him whatever illness my doctor was most recently investigating: Lupus, Irritable Bowel Syndrome, Ovarian Cancer.  He would sympathize by telling me how much chronic pain he used to live in and then say, “but at least I knew what it was”.

Or did he?

Celiac disease is passed along the family line through a genetic marker.  While I am the only one in my family to have been tested for celiac disease, symptoms of that and gluten intolerance are rampant throughout our family – arthritis, eczema, insomnia, restless leg syndrome, nose bleeds, mineral deficiencies, intestinal upset, thyroid disease, adrenal fatigue, miscarriage, fertility issues, addictive behaviors, acid reflux, ulcers – we cover the spectrum.  One more strike against us: our Italian heritage.  Celiac disease is more common in Italians, and in that country all children are screened for the disease by the age of 6.  What a difference that must make: an entire upbringing unhampered by the toll taken on the body – physically and emotionally – by food.

I explained this all to my brother on the phone leading up to our visit.  I thought I made a convincing case but he would only say, “there is no way I will go off that medication.  Ever.  I can’t live without it.”  I sighed, “ok”.  And then I packed my bags and my children for the six-hour drive to Bainbridge Island.

A picture is worth a thousand words

Instead of inundating Eric with information and impassioned speeches, I should have just sent a current photo of myself.  As soon as I walked through the door of his house he said, “Wow.  You look GREAT”.  That was huge.  Compliments from a big brother – no matter how grown up everyone gets – are not easy to come by.  But this one was well deserved.  On our last visit, I was fifteen pounds heavier, exhausted, covered in rashes, vomiting on a regular basis, and experiencing other things not meant for polite conversation.  Now there I was, back to my old self: brighter skinned, lithe, and full of energy.  So much energy, in fact, that while Eric worked I tried to make sense of his bachelor pad (he was using red plastic kegger cups in place of water glasses, not even kidding) while pulling it together slightly.  I also made a nightly dinner, which was a little like participating in some Reality TV cooking contest.

My brother travels a lot for work.  He has created a groundbreaking program for improving water quality and consumption, and is constantly in the air or on the road to somewhere, consulting with state and county agencies, or speaking at universities (once at OSU, for my friend’s class, where the professor said it was “a privilege to have him”.  My brother.)  Saving the world does not leave a lot of time for tending to his own health, or even basic grocery shopping.  His cupboards reflected that.  What little food he had did not exactly go together.  It was like the ultimate Top Chef challenge: pull together a gluten-free meal from the refrigerator and pantry of a bachelor pad.  I did it…every night that week.

We had a great visit.  We ate well.  We road the ferry East, where we walked through Pike’s Place Market to munch on juicy plums and select fresh seafood.  We road the ferry West, where my daughter whispered to Eric, “I looked really hard but didn’t see any fairies on the boat”.  (Fairy Boat. Ha!) He showed her jellyfish instead.

Those are the sorts of things we talked about.  But gluten?  We talked about that not at all.  I’d given my brother all the practical facts on celiac disease before our visit, and he wasn’t swayed.  So rather than spoil our time together with confrontation and debate, I figured these two things: 1) I would never change his mind; 2) there was no way he’d stay successfully gluten-free with his hectic, travel-packed schedule.  That would take real dedication.  And belief.

Surprise, surprise

Four weeks after our visit my brother called me to say: he’d gone gluten-free!  My skeptical brother – who professed he’d be on stomach medications and a mac-n-cheese/pizza/fettuccine diet for life – had gone gluten-free quietly and all on his own.  He managed to do this even with back-to-back road and air trips for half that time.  He ate out as much as always, but at Mexican chains like Qdoba, Chipolte Mexican Grill, or Baja Fresh, where gluten free meals can easily be had through choosing nachos, tacos, or (so long as that facility uses a separate grilling station) corn tortillas.  When dining out for business, he used his judgement to pinpoint what might be gluten-free, then made sure to check with the waitstaff.  Not a big drinker to begin with, he found it easy to switch to a glass of wine instead of beer during those same dinners.

I had two questions for him: What made him decide to go gluten free, and why hadn’t he told me earlier?

Eric said it had been hard for him to buy into the theory that gluten could be a cause of sickness.  He believed wholewheat products to be healthy and wholesome, and the gluten-free movement to be a fad –  like the Atkins or Zone Diets.  The information I gave him was not convincing because, he said, anyone can look up anything on the Internet and find the facts to make their case one way or another.  It was only seeing me that convinced him otherwise.  He was astonished to see the difference in my appearance and energy level; amazed that someone could go from being tested for debilitating, potentially fatal illnesses to a full recovery just through a change in diet. He also saw that going gluten-free wasn’t as overwhelming as he thought it’d be.  I didn’t make a big deal out of our meals being gluten-free, but because I was eating with him, he knew that they were.  And he didn’t feel like he was missing a thing.  Except, of course, for stomach pain and acid reflux – which he still dealt with on a minor level even with the constant stream of Prilosec and Zantac.

As for why he hadn’t told me, well, he didn’t want to give me the opportunity say “I told you so” – not unless he got real results from going gluten-free.  And he had!  In just four weeks, Eric had managed to stop taking Prilosec and Zantac entirely.  That’s right.  No more symptoms of GERD and no supposed ulcer.  The pains, bloating, indigestion, lethargy, burning, nausea, vomiting, and headaches he’d once experienced after eating had disappeared.  He was not just committed to remaining gluten-free, he was passionate about it.  This was really a shock for me.  Of all my family members, he was the last one I expected to make a major health change.  But as he said, “it was a no-brainer”.  The four weeks of radical improvement were proof enough.  There was no reason to go back to gluten, and he expressed no feelings of loss over eliminating or swapping out certain foods.  He was now telling his friends and our family members, “it’s really so easy to go gluten-free”.

Fast Forward

That was a year and a half ago.  Things have dramatically changed for my brother since then.  With ulcers and GERD at bay, he noticed other underlying symptoms which lingered, then eased as well.  His ecxema cleared up, he began to fall asleep easily and stay that way throughout the night, became more energetic and lost twenty pounds.  He stopped using red kegger cups for water glasses.  But this has nothing to do with going-gluten free.  This has to do – you guessed it – with a woman.  Eric married his best friend of sixteen years, Miranda, and the two merged their little families into a great big one full of sons: his ten year old; her five-year-old twins and also her seven-year-old.  Oh yes, and the recent addition of a baby girl.

Clearly they have a lot to balance in combining homes, schedules, belongings, personalities and parenting styles.  With all of that, fitting enough chairs at one dinner table was accomplishment enough; filling each plate with the very same foods was not on the agenda.  While Eric’s transition to gluten-free had been a smooth one, he could not imagine imposing his dietary needs on others – especially in a time of such great change and compromise.  It just seemed . . . too much to ask.  So he quietly prepared his own gluten-free version of the same meals.  When they had spaghetti, grilled cheese, pizza, burritos, or pizza . . . so did he – but with rice, quinoa, or corn instead of wheat.

I questioned him gently on this approach.  Was it easier, really, to go through the effort of shopping for and preparing an entire second meal?  Did that make any sense when, in the end, they would all essentially be eating the same thing?  And was he concerned about the risk of cross-contamination?  Or…the high probability that his biological son and daughter would benefit from eating gluten-free as well?  His answers, in short order: yes, yes, no, and maybe.

Even the most informed gluten-free individual can have a hard time buying into the idea of cross-contamination.  Sure, they may realize you can’t just remove breadcrumbs from salad or eat the filling of a pie while avoiding the crust.  These things are visual.  But many will doubt the fact that gluten can be spread through the use of porous (plastic or wood) utensils, cutting boards, and counter tops.  Gluten is insidious.  Trace amounts will remain embedded in these items, even when washed between use. The air itself can pose a risk. Particles of flour remain in the air for up to 72 hours after having been sifted, poured, and stirred during the baking process.  No matter how careful you are to prepare your own, gluten-free meal, you can never be truly gluten-free so long as others in your home are not.

Eric discovered this for himself within the first month of sharing a kitchen and the dinner table with his newly expanded family.  His acid-reflux returned, along with some minor intestinal upset.  It was not as extreme as before and he was able to get by without medication.  Then came a couple nights of vomiting after dinner time, similar to what had caused his physician to prescribe Zantac in the first place.  Eric called me up.  He wanted to know, “could I really be getting sick just from living in a home that has gluten in it?”  Yes, yes, yes!  And just in case he wouldn’t believe me, I posed a challenge.  I invited Eric, Miranda, and their entire family to join in on our 6-week long, gluten-free trial.  Just six weeks!  Surely they could commit to that.

Dinner for Seven

Eric and Miranda went through the process of cleaning out their kitchen.  Items with gluten were discarded or donated to a food bank.  Wooden utensils and cutting boards were replaced.  Every inch of cupboard and counter space were thoroughly scrubbed.  Their shopping lists were altered: pastas, cereals, sauces, soups, and dressings all became gluten-free.  Breads were the hardest to replace.  There is no denying that most gluten-free breads have a different, less satisfying texture.  The boys were less than pleased with their sandwiches.  I suggested they try Udi’s brand sandwich bread, and this was a hit.  Flax-4-Life muffins passed the test as well.  Gluten-free tortillas helped make fresh, filling, wraps a part of the routine.  Nacho night was a favorite.  The whole family was eating gluten-free.  But keep in mind – this family extends beyond more than just one.  Miranda’s three sons spend every other week with their father.  Eric’s son is with his mother during school days.  No matter how amicable ex-husbands and wives may be, asking them to change the way they eat and prepare their food can feel like a bit much.  Convincing others of the risk in eating gluten can be a slow, daunting, process.  While Eric and Miranda informed their respective ex-spouses of the dietary changes in their own home, they did not request that the same be done in these other homes.  Only one of their children was getting a fully gluten-free experience: their infant daughter.  And, yes, gluten is passed through breast milk.

Weeks One through Three

Eric’s acid reflux, intestinal upset, nausea and vomiting subsided very quickly.  By the end of the second week he was eating trouble-free.  While Miranda did not identify any specific health complaints at the beginning of the challenge, she did note an increase in energy.  Both parents were happy to see their daughter sleeping for longer stretches at night and crying less during the day.  Coincidence or not, Miranda felt the changes on their shopping list and in the kitchen were manageable, and that Eric’s health was worth it.

Weeks One through Six

The end of the six-week challenge coincided with a family gathering in Portland.  It was a meet-the-baby, meet-the-in-laws party, held at the home of Miranda’s aunt and uncle.  I traveled prepared not only with gifts, but also a bag full of snacks my children could safely eat on the go – dried apples, Larabars, popcorn, trail mix, beef jerky, fruit strips.  There’s nothing worse than having two small children with you who are, a) hungry, and b) feeling excluded by diet.

Something I could not pack for?  The grown-up version of hungry exclusion: being questioned, grilled, and often even challenged on the necessity of living a gluten-free lifestyle while we eat.  Eric and I both dislike this very much.  We agree it takes all the enjoyment out of dining with others.

I was in for a happy surprise.  Miranda’s aunt had taken the time and consideration to prepare a fully gluten-free snack and multi-course dinner.  She knew even to avoid her regular cutting boards, wooden utensils, and other porous cooking supplies that have been used for preparing food containing gluten.  We spent the afternoon grazing on an array of fresh fruits and vegetables, tasty crackers, homemade dips, chips and salsa.  Dinner was spaghetti with marinara made from scratch; free-range sausage; bread rolls with seasoned butter; marinated golden beets with grilled asparagus, gorgonzola, and walnuts; and (what was of course the biggest hit with the younger set) vanilla cake and chocolate chip cookies.

I could not stop thanking Miranda’s aunt for her kindness and hard work.  She brushed it off like it was nothing.  What she said was, “It’s a lot easier for me to buy a different kind of pasta than it is to prepare two different meals.  And certainly easier than it is for you and your brother to deal with getting sick”.  She was right, of course.  But people rarely see it this way.