3.01.2012

Going Gluten Free: My Story In Sickness & Health

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While my blog isn't only about gluten free eating, I wanted to take some time to talk about my journey through sickness and diagnosis. The fact that I have Celiac Disease makes it impossible to talk about food without referencing my health and well-being. 

This is just my personal story, but as I was trying to figure out what it meant to be gluten free, I found anecdotal accounts to be incredibly uplifting, supportive, and helpful. I am not a doctor or certifiable expert, but my own experiences have taught me much over the past few years. I hope that writing about my experience will help someone else; never hesitate to ask questions!

I'm fairly explicit and detailed in how I describe my symptoms, and there are before and after photos if you scroll down. This is to help others understand exactly what I went through, and to help people understand that this is a serious medical condition. I also hope you'll find that my story comes full circle, and in a weird-silver-lining twist I'm actually grateful for my diagnosis and resulting lifestyle.   

Childhood and Symptom Free

I used to be a gluten-fiend. My favorite home-made meals were bread straight from the breadmaker, pizza with crust made from scratch, and pancakes on Sunday mornings. I lived in white-bread suburbia, where every meal had some sort of gluten attached to it. My parents were amazing providers and we often ate dinner together as a family, but no one told us to watch out for gluten. 

I didn't have many discernable symptoms growing up, except that I constantly had a head cold. My best friend dubbed me "sicky" when we were 7, which seemed appropriate when it sometimes felt like I had a cold every month. However, until middle school, nothing else seemed to be happening. 

Then came that dreaded awkward stage known as pre-teen. This is when the fog started. Many people with Celiac Disease talk about having a fog over their brain, which for me manifested as depression, low energy, lack of concentration, and feelings of boredom. It wasn't so bad for a while, and just seemed like normal "teenager" stuff. 

Useless Doctors and High School

In high school, things started getting worse. I definitely had low energy and was depressed, and I started having terrible cramps off and on. I remember conversations with my doctor going something like this (remember, I was an awkward, sick teenager with very little knowledge about nutrition and health): 

Doctor: So, anything you'd like to talk about?
me: Well, I have stomach aches a lot. And my skin has been breaking out a lot.

Doctor: Stomach aches, like cramping? That's normal for a girl your age. 

me: Yea, feels like it, but it seems to hurt more than what my friends describe. 

Doctor: Well, everyone is different, but bad skin and cramping is just a part of life. 

me: But could my skin be breaking out because of something I'm eating? 

Doctor: No, there's really no connection between acne and what you eat. You may just be making this all worse by thinking about it too much. 

Yea, don't get me started on western medicine. After being told that everything that was happening to me was either in my head or "normal", I did my best to stop complaining. I didn't tell my parents when I'd feel sick, and just tried to suck it up in class. Sometimes I'd try to take a painkiller, which effectively did nothing. I didn't want to be the girl that always complained about phantom pains so I learned to bite my tongue. 

Low Weight and Gluten Binges

Mainly because of genetics, I'm a small person. I'm about average height, but have always been on the lower end of the spectrum weight-wise. Not such a bad issue to have, right? 

The funny thing about being a skinny person is that people feel free to comment on your size with abandon. People constantly tell you how lucky you are, because you can eat "whatever you want!" No one told me that nutrition is more complicated than carbs and calories. My small size meant that I've had more than one teacher pull me aside and ask me about eating disorders, and people were constantly pinching my "knobby" knees in high school. This made me want to prove that I definitely did not have any sort of eating disorder. How did I prove this? By eating more gluten-containing things, like pastries. In large amounts. 

No wonder I started getting really sick. 

At My Worst

By the end of high school, my skin was breaking out so much that it started scarring, and it hurt to touch any part of my face. I had started taking iron supplements after being diagnosed with anemia, and I occasionally threw up (involuntarily!) a few hours after eating. It was like my stomach was doing everything in its power to get gluten out of my system, even if it meant sending it back where it came from. The cramping wasn't every day yet, but it sometimes felt like someone was sticking a knife in my stomach - and twisting. I was also a vegetarian, which probably didn't help in that it reduced the diversity of foods that I was eating. 

I'm not really sure how I held it all together. I think I was convinced that as long as I made straight-A's, I'd still look good on paper.

I went off to Middlebury College, a small liberal arts college in Vermont, and the stomach pains grew worse. I was restricted to the three on-campus cafeterias, with only one grocery store (you try walking 20 minutes in the snow to get your food!) and nowhere to keep food items. I remember a salad bar and a lot of pasta. I've never felt worse in my life. 

I was also really unhappy. I couldn't deal with the now constant pain, and the depression made it hard for me to remember things or focus. I couldn't be peppy at get-togethers, I hated meeting people and making small talk, and I was increasingly self-conscious about my now very-scarred and painful facial skin. It also costs a lot to attend a fancy liberal arts college, and I just felt like nothing was working. I came back to the Pacific Northwest and transferred to the University of Washington. I was now 20 years old. 

The Discovery

Then something happened. I don't even remember who it was or why they said it - heck, for all I know I was eavesdropping - but someone mentioned gluten allergies and the connection to stomach pain. 

This was revolutionary, to me. I had asked my doctor if any of my problems were food related, but the brush-off I received made me assume that I wasn't making any sense. Now I learned that there might be a connection after all, and all I'd have to do was stop eating gluten? 

I know a lot of people are scared at the thought of giving up such a staple part of their diet, and I went through varying degrees of withdrawal, but I was so happy to find a potential fix to my problem that I didn't even think twice. I stopped eating bread and other gluten items. 

I did test the waters a bit. I ate out once and dunked my sushi in soy sauce, and was rewarded with stomach pains later that night. So that was it - I stuck with it. 

Starting Gluten-Free 

All in all, almost immediately after cutting out gluten, the throwing up, intense stomach pains, and general fogginess went away. I remember feeling a lightness that I hadn't felt for a long time, and started feeling more alert in classes. Over the next month, I started to assess: I still got some stomach aches, and while my skin was clearing up a bit, I was still breaking out. I felt good on most days, definitely better than when I was eating gluten, but not 100%. 

Also, I discovered another symptom that I didn't know I had until it went away. I saw my good friend Seihyun a couple of weeks after I cut out gluten, and our conversation went like this:

Seihyun: Michelle! What is wrong with you??
Me: What are you talking about? 

Seihyun: Why are you losing weight? YOU ARE TOO SMALL TO LOSE WEIGHT!

Me: Er....

*brief break while I ran into the bathroom and weighed myself*
Me: I weigh exactly the same as I've weighed for the past 5 years. What are you talking about? 

Turns out that my face and other body parts were slimmer than they had been a couple of weeks before. Eating gluten was making me retain water and bloat in my face and other body parts, giving me a slightly rounder look. 

During this time, I was also struggling to figure out what to eat. I tried replacing bread with gluten-free substitutes, but in 2008 the options were decidedly un-appetizing. For someone who grew up assuming that gluten was a main part of any meal, I wasn't sure how to adjust to life without it. I sometimes dreamed about bread, but after 3 months of dedicated gluten-free eating my body stopped craving it so much. 

For the 9 months following my abandonment of gluten, I muddled through the gluten-free diet. I found a couple of products I liked, and started eating a few more vegetables. I lived on avocados, fruits (especially bananas), and nuts for most of the winter. I mostly felt OK, but was constantly hungry, sometimes bloated or ache-y, and didn't do very well with processed foods or dairy. I was becoming an avid food label reader and never ate out. I wasn't so depressed anymore, but I felt alone and hungry. I was scared to eat almost everything. 

I'm sorry I don't have better photos to show the transition. These "before" shots don't show how bad my skin was at times. (I probably destroyed all those photos, if I even let anyone take them.) I also don't have many in the months following my decision to eat gluten-free. At least these "after" photos show a change in alertness as well as a fundamental change in my face shape, both of which happened within a couple weeks to a few months of going gluten free. 


Road to Recovery

Then I started working at a raw foods restaurant and discovered a diet that worked perfectly. The raw foods diet is vegan, so no animal products are involved, and the food is never cooked above a certain temperature (usually around 115 degrees). The reasoning is that foods in their "raw" form contain digestive enzymes, making it easier for your body to absorb and process nutrients. Seeing as I was still having a hard time digesting food and had previous bouts of anemia (I couldn't even absorb iron when I was eating iron rich foods), I gave raw foods a try. 

I'll have to write more about raw food sometime, but the take-away is this: a raw food diet can be expensive and time consuming, and needs to be done properly so you receive all your nutrients, but can be a life-saver if you're dealing with digestive distress. Raw food gave me more options than I was used to and I was no longer wondering what to eat. I learned how to prepare vegetables and incorporate flavors, and made some pretty killer desserts. I also started to feel healthier. 

My mood lifted. 

My skin cleared up.

My stomach stopped complaining. 

My energy levels felt somewhat normalized. 

My concentration and ability to be passionate and engaged returned. 

If you don't believe in miracles, then what exactly would you call this? 

I also did what is called a juice "feast" for about 4 days. I only drank freshly made vegetable juices, and I drank as much as I needed to feel satiated. I did feel a bit hungry and "light", but it wasn't so bad. Over the course of the next month, something amazing happened: my facial scarring from years of acne started to disappear. Suddenly, I wasn't so self-conscious anymore. 

I continued the raw foods diet for 9 months to a year, sometimes introducing cooked foods like quinoa or stir fried vegetables into my diet. Overall, I estimate that it took me about a year from cutting out gluten to finally start feeling closer to my best health, and a little longer to start venturing back into cooked foods territory. 

Re-introducing Foods

The raw foods diet is hard to stick with, especially when you don't hang out with a lot of raw foodies. I started feeling much better after almost a year on the diet, and wanted to see if I could handle other foods. I started eating yogurts and other dairy, fish, eggs and some gluten free grains like quinoa and brown rice. 

I've learned that I'm not great with dairy. If it's unpasteurized and from a goat, I don't get any stomach aches, and the occasional amount of butter isn't so bad, but I generally try to stay away from dairy products. I also have to watch how much processed food I eat, and try to eat a good amount of vegetables. People with Celiac Disease often have additional food intolerances, and mine seems to be dairy. 

My Sort-Of Diagnosis

In all of this, I haven't actually talked about my diagnosis. That's because I haven't been officially diagnosed. Say what? 

Here's the thing. I was so excited to hear that gluten may be at the base of my health problems that I almost immediately cut it out with very little research. It wasn't until months later that I ventured into a Naturopathic Clinic, intent on discovering whether or not I have Celiac Disease. 

I have a bone to pick with Bastyr, the Naturopathic Clinic and school in Seattle. I think they do a lot of great work, and were attentive to me during my two appointments. But they were grossly mis-informed about Celiac Disease and testing. After giving me a sheet with a list of symptoms to check off, the conversation went like this: 

Me: 8 months ago I had almost every single one of these symptoms. But then I stopped eating gluten, and now I only have a couple. 
Doctor: That doesn't matter, we just need to know what your symptoms are now. 

Me: But doesn't it matter that I have these reactions when I eat gluten? 

Doctor: Just fill it out based on your current symptoms. They we'll do a blood test to check for Celiac. 

They then proceeded to charge me a lot of money to take a blood test. The result? They told me I came back negative for Celiac Disease but I had a slight Vitamin D deficiency. As if that's unique in rainy Seattle. I was told that the test was definitive, and that at least the gluten wasn't causing my body to attack itself. I went about my business, convinced that I had some small intolerance to gluten and didn't have to be particularly careful about issues like cross-contamination. I didn't have Celiac Disease, after all. 

It wasn't until I was reading Gluten Free Girl's about page last summer that I found out that the only way for a test to possibly come back positive is if the patient is actively eating gluten leading up to the test. Even internal biopsies can come up as false negatives if a patient has been gluten free for a number of months. 

I thought about eating gluten in order to get tested, but quickly decided against this. I'm basically an invalid when I'm eating gluten on a regular basis, and I've been accidentally "gluten-ed" enough times in the past three years that I know my body still has intense, painful reactions. So I decided: if I have all the symptoms of someone with Celiac Disease, with the same amount of severity, I should treat this like I have Celiac Disease. Better safe than sorry. 

The Silver Lining

Through all this, I became increasingly knowledgable about the food I was eating. I started researching food production practices to understand ingredients, and became appalled at some of my discoveries. I understood how much a lack of education played in my drawn-out symptoms, and became involved in groups that actively supported and promoted more sustainable and transparent food systems. I had been tentatively majoring in environmental studies prior to my discovery, but switched gears to focus on food systems planning and food-related anthropology. I was quickly becoming the token "food expert" in my circle of friends. 

I also decided to start being more vocal about food. I hated the fact that food made me so sick, but at the same time became incredibly amazed at how good food was healing me. Where western medicine failed me, food became my savior. I devoted myself to the University of Washington Student Farm, which allowed me to connect with people my age who were absolutely in love with fresh vegetables. Gluten free products started improving in terms of taste, and I started getting more creative with my food preparation. 

Suddenly, I realized that after years of feeling like my body did the exact opposite of what it was supposed to, I was in control. I knew what made my body feel better, and was more knowledgable about my food than almost everyone around me. I ended up graduating at the top of my class and now work for the Center for Urban Education about Sustainable Agriculture in San Francisco, where I have easy access to fresh and nutritious food year round. 

It has become second nature to navigate my way through restaurants and grocery stores, and I'm continuing to work on my culinary skills. By talking to people about Celiac Disease, I'm always surprised with how interested everyone is, and how often people bring me little tidbits of food or information that they know I'd be interested in. And while I've had my fair share of socially awkward situations, I also usually get to choose the restaurants I eat at with friends. Not a bad position to be in.  

Embracing Life Without Gluten

I won't claim that I'm always graceful in how I talk about Celiac Disease, and I'm not always prepared for the social awkwardness that comes with turning down food from other people. I've made people uncomfortable by sitting in a restaurant and just ordering tea, and I've probably made more than one host anxious because of my many concerns. However - through all this I've learned so much, and I am often grateful for my condition because it woke up my passion for food. Couldn't have done it without you, Celiac.

I'm also grateful that I have a certifiable medical reason to turn down every random unhealthy cupcake, cookie, and donut that comes with almost any social gathering. 

Even people who don't necessarily have a gluten intolerance or Celiac Disease may have other nutrition-based health concerns. It's still a novel concept in our society that gastrointestinal distress is not normal, and that acne didn't exist before industrialized food systems. Being positive and communicative about my experiences seems to open up space for other people to talk about their own struggle with food. 

Now I eat out at a number of restaurants, all of which know how to prepare food that is absolutely scrumptious and safe to eat. I eat amazing grass-fed and pasture-raised meat, some whole gluten free grains, fruits, vegetables, nuts, eggs, oils, and plenty of other things, all of which give me constant diversity and excitement in my diet. 

I am proud that I found a way to be healthy. I am happy that my experiences can help other people, if only so they don't feel so alone. I'm falling more in love with food on a daily basis, and want everyone to know that living without gluten can be a delicious prospect. 

So what about you? What was your experience like? 

Don't just take my word for it. Other stories of becoming gluten free:  

Other disorders with a gluten connection:
Any others worth posting?

15 comments:

  1. Wild story. My wife found out she was gluten sensitive before she was celiac thanks to Terri at Healing Paths. http://www.facebook.com/HealingPathsVaNutrition I encourage you to check her out.

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    1. Thanks Mike, will do. Too bad it's in Virginia...
      I'm not against naturopathic care by any means, I'm just sad I was so misinformed by Bastyr.

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  2. You bring up a really good point about testing and diagnosis for food intolerances/allergies. I looked into getting tested for lactose intolerance but then found out that the typical test is to drink a whoooole lotta milk (or another lactose-filled liquid) and then do a blood test or a hydrogen breath test. Why would I put myself through that when I can just scale back my milk/ice cream consumption and find a wider variety dairy products where the lactose has already been broken down, like cheese and yogurt? And in terms of getting a calcium, lima beans and many leafy greens are actually more efficient sources. But anyways, thank you for sharing and I'm so happy that you feel healthy and in control!

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    1. Exactly - it's funny how we often don't realize that vegetables are really good sources of nutrients that you find in animal products. Thanks for sharing. Have you tried unpasteurized/raw dairy products? I can absolutely tell the difference between raw goat milk (goat is easier to digest, anyways) and pasteurized cow milk. More and more stores have raw goat cheeses, which is exciting! I treat myself every once in a while.

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  3. I'm so glad you figured it out! It's crazy about the Celiac testing - Makes no sense to me that they can't figure out a way to test without us eating gluten again.

    And a funny fact? Lots of people in sunny Tucson have a Vitamin D deficiency - including me! I guess we use too much sunscreen..

    I'm happy that you decided to write everything down. It will help more than you know!

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    1. Thanks for the note! Yea - We Seattlites may have just convinced ourselves that the lack of sun was the reason for our Vitamin D deficiency, when really it's just that we sit inside all the time...

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  4. Love reading your story. I was diagnosed in August so this is all still new for me. I just wrote about my experience so far - http://inspiredrd.com/2012/02/dude-this-is-harder-than-i-thought.html

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    1. Hi Alysa, thanks so much for commenting. I read through your post, and added it to the end of my blog post. Seriously, best of luck on the road ahead! I really benefited from letting my stomach "rest" and eating a raw foods diet, but it was definitely difficult to manage social situations. My method was mostly to be really excited about raw foods and talk about all the ways they were helping me, and people sort of caught on to my enthusiasm. I also had a few really delicious raw desserts that I'd bring to parties, and it's funny how they'd be the first thing gone once people tried them...

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  5. Thank you for this post. I really appreciate it. And coming from a family full of celiacs (all diagnosed as adults), its nice to hear a different story. I am trying to stick to my guns to get a proper diagnosis before going gluten free (for proper documentation for insurance, taxes, etc), but if I can't keep it up until the test can be performed, I will still try gluten free. Thank you!

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    1. It really is your choice - if I had all the information I have now when I was going gluten free, I probably would have tried to keep eating gluten for a little while in order to get a positive test. But I wouldn't have been able to do that very long - all I can say is that you should be aggressive and make your doctor/naturopath get you tested!

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  6. Love this Michelle. I remember you talking about this briefly with me during the short time you worked at Scream. It's been mildly on my mind since, and I see no reason to go get tested. Probably should sooner rather than later. I don't eat much gluten as it is, but there's a definite ingrained loved of b r e a d in my mind. Thanks for sharing, sooner than later!

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  7. I really enjoyed your article. I have had stomach pains for years and my gastro doctors continue to treat it as acid reflux and it never gets better. So... a PA finally told me to cute gluten and I am feeling better. It is hard initially to think about giving up pastas and baked items but I think I will be fine if my body feels better. Good article.

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  8. I used to be tiny and skinny....then I started to look swollen about last year...my face was getting more round, my whole body just looked bloated although I was very active and eating well ( of course with gluten in my diet). I later learnt about gluten and stopped for a while...no more exercise, just GF food...and miraculously I lost weight and looked normal again....

    Your story just made me that much more inspired to continue a GF lifestlye. I dislike how people assume I starve myself because I do not look "bloated" anymore when i stick to the GF diet....I feel more energetic and happier.

    With holidays approaching I visited my family and of course they told me I dont have allergies and am being sarcastic ( had the same problems as you did in your teens- seen as normal by everyone else) and so I believed them and said what the heck...ate a cupcake, had some cereal with milk ( I knew I was lactose intolerant already...) , had pancakes and normal bread....I felt sick, tired, depressed and looked swollen in less then a day...now I am paying for it..it takes at least a week for the symptoms to fade a bit but I learnt my lesson to stay away from that poisson.

    Doctors I feel are really uneducated in this field and so I do not listen to them only I know how I feel..best and worst.

    I cannot wait to read more of your posts....It's good to know someone else out there stuck through it and now enjoys life healthy, un- bloated and full of energy. :)

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  9. The post is telling all about going gluten free is the story of sickness. Useful post
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