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”.

Posted by Nadine Grzeskowiak, RN

Nadine is a 'food is medicine’ activist and is very proud of her work to educate all people about the power of food in health and wellness. Nadine is an expert consultant, professional speaker with over 1500 lectures to date, author of DOUGH NATION: A Nurse's Memoir of Celiac Disease From Missed Diagnosis to Food and Health Activism, podcaster, mom and former emergency/trauma/critical care nurse. Nadine is co-authoring her next book on the science of celiac disease.

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