My Journey through Celiac Disease

Today’s story comes from Lisa, a friend of mine in Montreal, who is a successful entrepreneur, mother of two beautiful boys, wife to our lovely friend Peter, and a happily gluten-free celiac.  Over the years that I have known her, I’ve witnessed pieces of her struggle to come to grips with what exactly was going wrong in her digestive system.  Here, in her own words, is her journey toward better health and an understanding of how to care for herself.


I was around 25 years old, just landing in South Korea to teach English for a few months, before my last semester of university.  I noticed, not for the first time, that my stomach was bothering me.  I didn’t give it much thought, since this always seemed to happen when I flew.  I assumed it was a normal part of a long flight with lousy food, lack of oxygen and hours of sitting in one place.  I also assumed that most people must bloat up and have pain the way I did.  The fact that it would take me days to get back to normal also never seemed odd to me, but just part of the stresses of travel.  I carried on.

Living in Asia was quite a shock to my system:  new sights, new smells, and new sounds.  The first few days, simply adjusting to my surroundings was challenge enough, never mind being thrown into a classroom of kindergarteners, all looking to me for direction!  I had never taught in my life and these beautiful little children were all waiting on what I would say next.  Oh my!  The fact that my intestines were gurgling all the time must surely be due to the stress of my new role, my new life in Korea, and not anything more serious than that.  Right?

And so it went. The two months in Korea passed fairly smoothly.  I got used to my new job, began to enjoy the children and got more comfortable in the classroom.  My stomach rumblings would come and go but were always worst on Friday nights when a group of teachers and I would head down to the local pub for a few pitchers of beer along with some Ojingah or dried squid.  But hey, everybody bloats when they drink beer right?  At the end of the summer, I decided I really liked living in South Korea and I loved teaching.  So I signed up for another year, went home to finish my last semester of university, then flew straight back, bloating in tow.

After two years abroad, I returned to Canada, and my digestive problems had not improved.  It got to the point where I was embarrassed to travel or sleep at other people’s houses because I never knew when or where an attack would happen.  I called them attacks at this point because I had finally consulted a doctor, who diagnosed me with IBS (irritable bowel syndrome).  “What can I DO about IBS?” I asked.  “Try to relax,” he suggested.  “Stress exacerbates it.  There is a drug we can give you if you want.  It’s an anti-depressant.”

An anti-depressant to treat a digestive problem?  This felt like a slap in the face!  I knew that I was not depressed – at least, not more so than might be expected for someone who was in constant pain.  But at any rate, whatever mood-related symptoms I felt, I knew they were caused by the digestive symptoms, and not the other way around.  The problem was not in my head.

Yet the doctor – a leading gastroenterologist – offered me nothing to treat or even validate my physical complaints.  He did no tests.  In fact, he barely examined me – palpating my stomach briefly and asking a couple of questions – before pronouncing “IBS” and sending me on my way.  Over the years, I consulted other doctors, who were generally not substantially more insightful than this first one.

I bought several books on IBS, surfed the internet looking for answers, tweaked my diet here and there, but never came to a complete solution.  I could improve things slightly, but results were inconsistent, and overall, I still suffered.  The closest I came to a solution was the year I went to a naturopath.  He really listened to me and recommended some fairly radical changes to my diet, including removing wheat.   The only problem – I now realize in hindsight – was that I was still eating other gluten containing grains like kamut, rye, and spelt.  So I was part way to a solution, but it would be years (12 to be exact) before I came to my own conclusion that I have celiac disease.

Celiac is an auto-immune disorder where your body attacks the villi in the lower intestine whenever gluten-containing grains are ingested.  The short-term effects of this can range from minor inconveniences like pain, bloating, diarrhea, to more severe symptoms such as headaches, dizziness and vomiting.  In the longer term, however, the effects of the disorder can be very detrimental because the body’s ability to absorb nutrients is drastically reduced by virtue of the villi being damaged or even destroyed.  If undiagnosed or untreated, sufferers can end up with joint damage, bone damage, organs that no longer function properly, failure to grow to one’s full potential (if the disease manifests early in life), and even cancer in worst-case scenarios.

It is not known why some people who carry the gene anomalies responsible for celiac develop the disorder early on, while others never develop it, or develop it later in life as I did.  The tests for it are difficult and invasive and have a very high margin of error.  So finding out whether or not you are celiac is a feat in itself.  And, of course, there are dramatic lifelong dietary changes to make once you are diagnosed.

I am happy to report that, after taking matters into my own hands (genetic testing for celiac at my own expense done through a laboratory in the US) I now have a confirmed diagnosis.  I know, finally, what I am dealing with.  I had already begun a 100% gluten-free diet two years earlier on suspicion that this was my problem, and the fact that I felt better within one week of being on the diet fuelled my conviction that I was on the right track.  But it still took two years to figure out how to navigate my way to actual medical confirmation.

No one wants to be sick, or to be told that they have an illness that will never go away.  But when your body is telling you unequivocally that something is wrong, the need to understand what is going on can become too pressing to ignore.  Finally knowing with certainty what I suffer from, and having validation that there is a real, physiological cause, is immeasurably valuable to me.  It gives me control of my life.

Today, I adhere to a strict gluten-free diet and my problem is essentially gone, regardless of my stress levels.  This is a miracle, in a way.  But in another way, it didn’t have to be, because all I ever needed was to know what I had to change to make myself feel better.

My purpose with this story is to hopefully help others facing similar challenges.  My message is simple: be persistent!  Pay attention to what your body tells you.  We are all stressed to some degree in our lives, and of course that does affect our health.  But if your problem is persistent and you feel unwell often, believe in yourself and what you feel.  Don’t accept that it is just stress when signs indicate that there is something more going on.  Keep pushing and searching for answers.  I am so glad I did.

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