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Jim's Story


Jim's Story

January of 2007 will mark my 3rd year anniversary of going gluten free. I am now 49 and feel like I’m living in a body that feels so different than 3 years ago that it is hard to believe it is the same body and mind.

I don’t dwell on the past, but perhaps the story of what I experienced will find its way to someone who recognizes the symptoms. This story is written from today’s perspective of connecting the dots over the decades rather than from the past where the unconnected annoyances were seen as normal penalties of a busy life.

The oddities that might have been early markers of gluten sensitivity appeared in my college days. After a particularly uninspiring meal at the fraternity house one night, when plates of Maryland fried chicken were in abundance, I was challenged to an eating contest by a 170 + pound fraternity brother. I achieved a bit of fraternity house notoriety by continuing to eat after my 6 foot 2 challenger called it quits. As a 5 foot 8 sophomore I weighed a bone rattling 116. Even in my senior year they called me Bones.

Naps were more than a luxury, they were a necessity. I often craved sleep. I walked 10 or 15 minutes back from campus just to sleep between classes if I could. Again, I figured it was the college life, although I was a relatively tame college student compared to most of my peers.

Out in the work world in my early 20s I realized that parts of my days were filled with lethargy and rapid mood swings. After paying more attention to what I was eating I noticed the lethargy and drowsiness came over me after consuming refined sugar. So, I quit putting sugar on my breakfast cereal. I felt better, but still there were bouts of fatigue.

Soon after the success of kicking table sugar, I quit eating products that were made with refined sugar and I quit drinking caffeine. Better still. Then I stopped eating foods made with corn syrup. And finally I removed white bread from my diet. By then I was in my late 20s, but lethargy and bouts of sleepiness were returning despite my now rigorous anti-processed foods diet. I became nearly fanatical in rooting out all forms of processed foods and sugary from my diet.

Another malady that showed itself in my 20’s was canker sores inside the mouth. At 25 I had one on my tongue that was so painful, so large, that I went to a doctor. He ripped it, quite literally, out of my tongue for a biopsy. The result was nothing to worry about. He quizzed me on what I was eating. He suggested more vitamins and a better diet. Eat what your body tells you to eat, was his response to my question about how I know what a better diet is.

At 28 I moved across the country to the city that never sleeps and entered a graduate program. I ignored the ongoing fatigue problems attributing them to the high course-load and long hours at part-time jobs. Once settled into a new career I figured that whatever fatigue and lack of zest in life was part and parcel to my new life and as long as I avoided refined sugar and all their processed cousins I would be fine.

Yet, after 3 years of that attitude, and no trend of improvement, I consulted my doctor about the fatigue in my day to day life. He took blood to test for Lyme disease, Epstein – Barr virus and other maladies. When each test came back negative he suggested getting proper sleep and eating regularly at set times and manage the stress and that all would be well. He didn’t believe hypoglycemia was causing my fatigue but did confirm that I had a flat sugar curve. .

Meanwhile, now in my early 30’s, I began noticing a tendency to have soft stools alternating with extremely painful constipation. Again, I consulted my doctor since the problem was becoming a chronic situation. He asked about my water intake and my diet. He took blood tests. In the end there was no real conclusion except to drink 8 cups of water per day or more.

I also asked him about my ravenous appetite. He ran blood tests looking for this and that and was satisfied nothing untoward was going on down there. He said that I was a simply a man with a healthy appetite. I had faith in his diagnosis.

At 35 I came down with mono after returning from 2 week trip to Australia. In the years after that whenever a particularly bad rash of fatigue set in I would remind myself that it was probably residual effects of mono as my doctor had suggested.

If someone had graphed my toilet paper usage during my 30’s it would have to show a steady climb year after year. This mirrored the amount of time spent on the toilet during the day. By age 38, every bowl movement was either soft stools or a delayed and excruciatingly painful one. Needless to say I got some extra reading done.

My appetite now was getting out of control. What I now know as traditional hunger pangs of the stomach didn’t exist; my entire body was hungry. It was a sense of depletion, of energy exhaustion. And so I ate constantly just to get rid of that depleted feeling. If I went somewhere I always carried a substantial snack; something to keep my body from getting hungry between meals. At 35, I weighed a mere 2 pounds more than I weighed when graduating college (119) 17 years before; and yet I was stuffing my body with the equivalent of 4 meals a day and then some.

The tendency for the inside of my mouth to break out in cancer sores also increased steadily in my 30’s. So, by the end of my 30’s I had a canker sore open and festering about 80% of the time. Most of the time sores alternated sides and so I could chew on one side to avoid the pain. During those years I consulted my dentist to see what the treatment was for these. The answer always came back, if you don’t treat it, it lasts a week. If you treat it, it lasts 7 days. Medical humor was wearing thin.

So through my 30’s I focused efforts on sleep habits, meal habits, exercise and taking care not to let the stress of life erode my daily life. But still the lethargy and sudden bouts of sleepiness came around. And into my late 30s they became more pronounced. I resigned from a very high-powered 5 day a week career when I was 38. I was burned out.

After leaving, I had no desire and no immediate need to work. So, I took 18 months off traveled, got heavily into my art work and of course ran through my money.

Back in the hunt for work, I insisted to my new boss, that 3 days a week is all I wanted. I decided to spend the other days on my art work. But the fatigue and sleepiness still dictated the ebb and flow of my daily productivity and alertness. That, along with soft stools, constipation, canker sores, constant body hunger and now lactose intolerance followed me into my 40s.

At the new job, I got a reputation as a big eater quickly. I got to know the folks at the company cafeteria quite well because I was eating two full meals every day. Often I ate alone as I wanted to eat as soon as the cafeteria opened. Sometimes I was so eager to eat that I would have to wait for the cafeteria doors to open.

In my early 40’s I noticed my body didn’t like certain foods anymore. Besides the bloating and diarrhea from lactose; citrus and other acidic foods now gave me a pruritus of the anus that was unbearably uncomfortable and woke me up at night. So, I learned to avoid those foods. The list grew longer and included many spices as well. Nuts of all kinds, except cashews, would cramp my stomach, sometimes painfully so.

Work was uninspiring. The daily falling asleep at the keyboard was just part of life in the slow lane I thought, and the micro-naps while talking on the phone, seemed strange, but it must be just the dullness of the job I thought. After all, my doctor said nothing was wrong.

That 3-day-a-week job lasted 3 ½ years. I traded my part-time job for a dot com business that required travel across 5 time zones. Perhaps, unconsciously what I was looking for was a lifestyle that would give me flexibility to fall asleep when needed? I sunk my savings into the company. Jet lag masked whatever fatigue issues I was having for the next year until the fledgling business flamed out and crashed into the towering heap of dotcom exuberance. Promptly, and fortunately, I found another 3 day a week job.

The effects of the fatigue and sleepiness were taking more of a toll day to day. I would unexpectedly doze off at the computer several times a day, sometimes losing data. Equally by surprise, I would begin to slip into a dream while talking on the phone. I struggled to hold the tendrils of a coherent conversation so I could politely disengage from the call, concerned that the other person would notice talk had suddenly shifted from corporate bonds to snorkeling in beach balls or some equally hallucinogenic vision.

The most dangerous part of these bouts of sleepiness was while I was behind the wheel. Drowsiness would overcome me quickly and I awake to find I drifted onto the shoulder or into another lane at 65 mph. But never would I pull over. What I didn’t realize at the time was that the fatigue equally dampened judgment. So, my reaction to dozing off was to turn up the radio, roll down the windows and tell myself that I was still in control. And then I would doze off again.

Then one sunny day I was driving my little niece and nephew. I started dozing. It took every shred of willpower to do, and maybe something else too, but I did pull over to sleep. In my foggy state I just sloughed the incident off. I was embarrassed this was happening. This was just something that was happening in my life that had no answer. Looking back on those times, I realized I was too muddled to ask any questions.

Once, on a two-lane back road at 55 mph I nearly rear-ended a car that had stopped in traffic. After that, there were times I thought that I as long as I kept driving, my number would come up. Yet, it was impossible to think that I would stop driving altogether.

Falling asleep on the phone, in business meetings, at my computer and generally lacking in motivation because of very low energy levels was not making me a star at the office. I felt for part of the day like I had molasses in my blood. But it wasn’t a lot different than last year or the year before or the year before that. Was it? No, it wasn’t.

A year after I started, it was suggested by my supervisor that perhaps this job wasn’t working out. Of course I had to agree because it was abundantly clear that this wasn’t my type of job because I wasn’t engaging in it, I wasn’t eager to get to work, I wasn’t inspired; in short, I wasn’t doing anything for the company. They did all they could to help me get some traction in the job and graciously gave me 6 months to find something else. I didn’t. And so, at 45 I was out of work again. I struggled to find another job but to no avail. I owed money to friends and family and, without savings, I sold my home.

Exactly one year after I lost my job, my brother mentioned that he heard about someone who had the same fatigue symptoms and similar food intolerances as me. She had discovered 3 months prior that she was a celiac. After 3 months of a gluten-free diet her life had remarkably transformed. He said she was completely symptom-free and finally living a life she never knew was possible.

So two days later, without an appointment, I went to my doctor and asked for blood tests for celiac disease. He hemmed and hawed, but finally I persuaded him that it is better to know than to wonder about it. A week later he called to say the TG blood test showed I was strongly positive for celiac disease and I should immediately go on a gluten free diet. I paused, waiting for him to say something more. After a few seconds he said, I thought that was what you had, but at the time there was no test for it. He recommended a highly experienced nutritionist from a big hospital and gave me her number.

I went online, learned what a gluten free diet was and started it the next day. Within 24 hours I started feeling better. Within 48 hours I had lots of energy and no fatigue. And within a day or so I could drive and not feel fatigued. What a gift! In less than one week the canker sores completely disappeared. Within a week it was like I was waking up to life; felt clean and clear. My mind was fatigue free all day long! It was a miracle.

Other symptoms disappeared over the weeks following my elimination of gluten. Within a month I knew I had finally found full health and could not ever recall feeling as alive as I felt in each waking moment. It was a transformation. It may sound trite, but I felt, and still feel, I have been reborn.

Another peculiar thing happened in those first gluten-free days. My body was no longer hungry. My appetite plummeted from its unbelievably high levels. I didn’t know when or if I should eat because the usual body signal was gone. So, I ate according to what time it was. Noon, for example, was my designated lunchtime.

I didn’t have to eat much at all. I didn’t know how much to eat because I didn’t know what being full was. So, I ate what seemed to be a normal amount. Within a month I began to notice that yes, I did have hunger feelings in the stomach. But never again did I ever have to eat. Never again did I feel the depleted body hunger.

Does this story sound similar to your or a family members? You might have celiac disease. Find out now, take our celiac disease symptoms checklist.

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