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Frank's Story


I was diagnosed a few years ago after a lifetime of being sick all the time and trying to cover it up. I felt I was just weak.

After the diagnosis, looking back I realized that as a child, I was insulated because my mom had worked out what I could eat and what I reacted to. I didn't have as much of a problem away at prep school because we only ate “bad stuff” occasionally, and I think my body healed a lot faster.

But with college eating habits, I did more and more damage, until, in my 20s, I presented weeping rash on my legs, dry itchy skin, gas, diarrhea and ulcers. Classic symptoms, but none of the specialists I went to recognized it. Each looked at their specialty and couldn't figure it out. (This was in the 1970s).

I am adopted, so there was no family history to tip anyone off. The first skin specialist gave me a cream and said it was "some kind of skin thing." The GI guys said it was IBS and that I should relax more.

One of the ironies of celiac disease is the malnutrition issue and weight gain. Near the end, before I was diagnosed, I was getting fatter and fatter, and hungrier and hungrier. I would eat sugary things like cookies and doughnuts in an effort to slake my hunger.

After 35+ years of my body attacking the lining of my small intestine every time I ingested gluten, I likely had no villi left. I was dairy intolerant and malnourished.

Now, my skin is fine, my weight is normal, and I get very few stomach issues.

After a lifetime of misery and illness, and useless diagnoses by specialists, I have absolutely no interest in "cheating" and eating anything that would take me back to that misery. So, the decision is easy for me. I get angry when I run into an episode of cross contamination, and avoid eating out unless I am certain the restaurant has a chef who understands the issue.

I find people who cheat puzzling, but to each his own. There are foods I sort of miss, but there is nothing that would induce me to go through 2 or 3 days of misery just to have a slice of pizza.

It has certainly gotten better in recent years, with better product labeling and gluten-free foods available in stores. But I generally do better with fresh fruits, vegetables and unprocessed meat, fish or poultry.

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