My Story

I recently told a friend I have known for many years that I have celiac disease. She is actually familiar with it, and her first comment was, “I don’t remember you having any problems with food.” Well, I didn’t, until recently.

I used to say that I had a cast-iron stomach. I could and would eat anything. Well, almost anything. I hate walnuts. Always have. I don’t care for lamb, or beef liver. But otherwise, I never had any problems with food, other than a tendency to eat too much of it.

Then I hit my 30’s, met David at 31, got married at 32, started a new, stressful job, moved just a couple of months later, and my insurance changed a prescription the name brand I’d been taking for years to a generic. That’s when all hell broke loose.

I started to retain water, gaining about 10 pounds of fluid literally overnight. I was puffy and irritable and in pain. My abdomen bloated and hurt. My joints hurt. I couldn’t think straight. And it just wouldn’t go away. For the better part of a year I tried every over-the-counter and folk remedy for water retention available, with no results. I went to the doctor, who said there was nothing wrong with me, except my blood pressure was sky high – 169 over 93. So stop worrying, relax, cut down on your salt intake, here are some prescription diuretics, and see you every 6 months.

The diuretics would make me feel better for a few weeks, then would stop working. Over the course of the next 4 years I followed a strict sodium restricted diet – 500 mg or less a day (try it – the average American eats 3000 mg or more a day), increased dosages and/or switched prescriptions about 15 times. I was checked over and over for all sorts of endocrine problems, cancers, nutritional deficiencies (but never for celiac disease) and my doctors kept saying I was the healthiest person around. They also told me more than once that I must be cheating on my sodium intake (I wasn’t), that it was all in my head (it wasn’t) and maybe I should just stop whining about it all (I didn’t). I just knew something was still wrong with me, and it was getting worse. I was slowly deteriorating, and I honestly believed I was going to die soon.

It took 5 years for me to even consider that maybe my problems might be food related. In July 2006, I started an elimination diet, where I ate nothing but rice, sweet potatoes and bananas until miraculously, I started to feel human again. Then slowly, meticulously, each day I would eat a new food, write it down, and record what happened. My first big reaction was to wheat. Oh, crap. Wheat is everywhere! And I knew about celiac disease, so the next thing I tested what rye. Reaction. Barley. Reaction. Oh, crap.

But at least I knew what it was! Back to the doctor for the celiac blood test. She didn’t want to order the test, because she said I couldn’t possibly have celiac disease, it’s so rare (it’s not). But I finally talked her into ordering the test, and it came back negative. She said see, I told you so, the blood test never lies (yes it does, it’s only about 70% accurate), so here are some more pills, for IBS. I fired her ass.

Now I knew what the problem was, but there was still a lack of validation. David was worried that something else might be wrong. Well, the doctors haven’t been able to find anything else over the last five years, but what the hell? So I did a lot of research, talked to someone who ran one of the local celiac support groups, found another, more accurate test from a place called Enterolab, and a gastroenterologist (GI) who worked with a lot of celiacs in the support group. My new GI took one look at my results from Enterolab, and said “you definitely have celiac disease.” I’ve been gluten-free ever since.

Slowly, I’ve been improving. I hadn’t realized just how awful I felt until it started to go away. I still get accidentally poisoned from time to time, and react to numerous other foods, but the longer I’m gluten-free, the more human I feel. I will never willingly eat gluten again.

About Li

A writer, runner, and Gluten-Free Zealot, I’ve been helping others navigate the gluten-free lifestyle for many years. Life is meant to be enjoyed, and when you’re gluten-free, it’s even better!

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