A Personal Story of Gluten Intolerance

During the winter of 2002-2003 I found myself in increasingly bad health. In retrospect it is easy to see an escalation of the symptoms, but at the time it wasn't nearly as clear. During the fall of the year I found myself with very little energy, no ambition, and depressed. Living in Maine, these symptoms can be caused by the lack of sunlight during that time of year, but that fall I had it particularly bad.

During the winter I wound up with an ear infection that took two rounds of antibiotics to get back under control. After that things started to get really out of hand as far as my health goes.

I have always had problems with allergies. I'm allergic to household dust, but when things are particularly bad, anything can set me off. As a result, I tend to keep a relatively neat clean house. When my friend butonquail came to visit she had no allergy problems despite the fact that we have two cats and she's allergic to cats, that's how clean the house was in the spring. However, I was taking allergy medicine nearly every day, using eyedrops, using nasal sprays and still suffering. I was completely unable to get things under control again, no matter how much I cleaned. I was frequently completely incapacitated by sneezing, sniffling, and eyes running to the point I couldn't see.

I had problems with "acid stomach" to a certain extent for years. Over the winter it became nearly constant. I eliminated most foods containing tomato sauce in an effort to reduced the acid. I had noticed that many times when I ate something with tomato sauce I got really bad acid afterward. I also had problems with food sitting in a lump right below my sternum for what seemed like days. It became commonplace for me to make 6 or more "emergency" trips to the bathroom per day. In fact I got so I didn't want to go anywhere there wasn't a bathroom immediately available. I was producing more methane in a day than a herd of cattle. It's embarrassing to talk about, but more embarrassing to live.

As things progressed, I began having problems with general muscle fatigue. If I went out dancing, three days later my leg muscles would still be stiff and feel just exercised. Leg cramps at night were becoming the norm.

Normally, I'm a very sound sleeper. During the winter and into the spring I found that I was waking up more and more at night. Even after 10 or more hours of sleep I would not feel rested. At no point would I feel energetic.

The scariest thing to crop up during the spring was eye problems. I began having a persistent twitch in my left eye and started getting eye fatigue very easily. I've had occasional very bad sound and light sensitive headaches since I was a teenager, but these became daily. Sitting in front of the computer for even ten minutes would leave my eyes very tired and give me an excruciating headache for the rest of the day. To treat this symptom I tried: changing resolutions, changing refresh rates, changing monitors, moving the computer to a different room, using my Mac instead of my PCs. None of this made more than the scantest difference. I might buy myself an additional five minutes before having a splitting headache, but it didn't change what was happening.

I was desperate. I was broke. I was uninsured. I was totally and completely fucked.

A friend who's livejournal I read was diagnosed with Celiac Disease in the fall and one day in June I finally got around to trying to understand what she had. I was reading the symptoms in the FAQ at Celiac.com and things started to click. The symptom list sounded damn familiar. I hadn't suffered any weight loss, but most of the other symptoms were right on. Self-diagnosis is always tricky, because it's easy to convince yourself where there really isn't a fit. But I decided to try a Gluten Free diet because I was desperate and because it didn't cost anything.

There are not words to express what happened in the first 48 hours. I couldn't believe it. Problems I didn't even realize I had were disappearing. Within two days my intestinal symptoms were greatly decreased and I was waking up feeling rested. Within two weeks I could sit at the computer for much longer. I truly felt I was given my life back.

As problems started disappearing it made me think of how long I had been suffering. The severe problems had only kicked in around Feb/March, but there were moderate symptoms for at least a year, and at least some symptoms I can trace back years. I had gotten so used to living with different pains/compromises that I had just written off to being me. I know realize that was a huge mistake.

I still haven't been officially diagnosed. I will probably get that done this winter. It will no doubt involve going back on gluten for a while so a measure of the bad effects can be made. I will only do that if I'm ready to be incapacitated for a while.

Things that have changed completely and totally:

Things that have changed at least somewhat:
Gluten Intolerance/Celiac Disease manifests itself in different ways in different people. In the US, it is often misdiagnosed by healthcare providers. I asked my physician about the persistent rash I had and he said, "oh, that's just a minor rash. I'll give you a topical treatment for when it gets bad." I now know that rash was probably DH, which is related to celiac. It's gone away almost completely since I went Gluten Free. Take a look at the FAQ on Celiac.com and see if the symptoms sound like you or someone you know. A week or two on a Gluten Free diet might change a life.

Matt
11/30/03

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