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A new journey


dixonpete

1,289 views

In the last blog entry it was late July 2018 and my larvae had just arrived. Before going further there is a fair amount of history leading up to that moment that probably should be discussed.

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Back in 1999 at age 35 and single again I had my first inkling of what was to come. I was into body building at the time and consumed a fair amount of protein powder. I developed a painful reaction to it. I talked to the vendor. They had never heard of any problems. I shrugged it off. Going forward the reactions came and went. I didn't know what to make of it.

Things were ok GI-wise until 2005, I was 42 and living in Toronto. I developed an abscess. 

It was an incredibly painful experience that required surgery and months of nurse visits. Unfortunately for me, as a result of that surgery a fistula developed that required another surgery and yet more months of nurse visits. More bad luck, that surgery didn't work out and yet another visit to the operating room was required. In the end I was left with a mild disability. Not great, but something I could live with. 

What came next though was a nightmare.

Some months after the last surgery I began to notice blood in the toilet bowl. That worried me but I carried on. Then after an evening of having 3-4 beers I turned the bowl red. Off to emerge I went. Took 5 hours of waiting but eventually a doctor took a look up my butt, looked at me, and said I needed to get that taken care of. He gave me a referral to a gastroenterologist.

That happened within a month or so. The camera revealed ulceration 12" distal in my rectum. Ulcerative colitis. Soon a veritable mountain of boxes containing Mesalamine suppositories were delivered to my apartment. What fun. My GI doc didn't mention that diet can be helpful in controlling colitis. That omission would cost me dearly over the years.

The colitis flares came and went but soon a new trouble developed. Diarrhea. Every freaking day, and in ever-increasing amounts. From late 2005 to July 2008 I was largely restricted to my apartment only going out for food and other necessities. I had many visits with my GP to no avail. Imodium did nothing except mess up my mood. I seriously considered suicide as there was no quality of life. I figured I was done. I couldn't see how that much diarrhea was compatible with life. I figured I'd die from an electrolyte imbalance.

Eventually in June 2008 at age 45 I got smart and started doing elimination dieting. Perhaps I was reacting to something in my food. I started with coffee. No change in the diarrhea but my depression was gone. Turned out what was thought to be a mood disorder was caused by a sensitivity to caffeine. Good to know. Information that would have been useful 25 years ago.

Three weeks after that I got sick in front of my apartment building after having a sandwich at a friend's condo. It was one of those moments in your life when lightening strikes. Bread! It had to be bread!

In 2008 and the Internet was around. I got to searching and in quick order I learned was gluten was and about celiac disease. I stopped eating gluten immediately. The attacks of diarrhea, which had reached proportions of up to 11x a day, stopped the next day.

My GP was on vacation at the time and by the time he got back and I got an appointment a number of weeks had elapsed. I was told that to have a biopsy I would have to go back on gluten, for 6 weeks I think it was. I refused. It was as clear as day gluten was the problem, and I wasn't going to be sick for another full month and a half just to get a result I already knew.

At this point I started keeping diary entries and I made a few posts on Celiac.com. You can see those posts in the archive. My diary entries from this time are grim. The diarrhea was over, except when I was accidentally glutened, but I was dealing with much blood and buckets of mucus. I kept track of what I was eating. I didn't know it then but my type of ulcerative colitis is primarily a reaction to nut and animal protein. Unfortunately for me, that was a large part of my diet back then. My diary entries lasted from Aug to October. It was very ugly.

Eventually I got better. From 2008 to 2018 I mastered being celiac. Because I was highly reactive my diet evolved to eating almost entirely at home and cooking from whole foods. No chances were taken. I believe during those 10 years I was glutened about 20x, half of that being in the first year or so.

This brings us back to the summer of 2018 when my colitis flares were absolutely out of control.

Next week: Hookworms. Really this time.

2 Comments


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Scott Adams

I know dealing with health issues is always an ongoing process, but it sounds like you're on the mend, which is great. Your hookworm treatments are especially interesting, as we've done articles in the past on this, but you're the first person here who has actually tried the treatment. I hope it continues to go well for you!

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dixonpete

The hookworm posts are coming. Figured without a proper background people wouldn't understand why I was driven to consider hookworms.

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