When Gluten Free Isn’t Enough

I have been on a gluten free diet since I was diagnosed with Celiac Disease at age 15 in 1982 (this is my pic just before going in the hospital at age 15, 89 lbs and 5’4″ tall). After my first six months of eating a gluten free diet, I gained 40 pounds and grew 6 inches (this, by the way, was a hilarious growth spurt as I swelled and sprouted 3 week intervals). I remember telling people that if you have to have a chronic health problem, this was a pretty good one. No pills, no operations, just a diet that will probably keep you healthier in the long run. I thought I was cured.

I didn’t expect to reach adulthood and start having new gut issues.


But when I did, I assigned blame to the stress of raising 3 young children, the stress of work, the stress of my husband’s job taking him out of town a lot. Adulthood brings on a lot of stress.

I’m sure none of that stress helped my health, but when I crossed the line from being inconvenienced by my gut to being in continual pain, I went to the doctor.

She did a “scope and go,” letting me know that I had visible damage in my stomach and gut, but she didn’t know why. Steroids were the prescription. They helped a lot. For two weeks. Then, I was back to square one. So I went from a Chinese medicine practitioner, a chiropractor, a manual therapist, a medical intuitive and a natural path. This took about 15 years.

It was the natural path who finally did a slew of food testing on me and found that I was reactive to a plethora of foods that I had been eating every day. From lentils to dairy to nuts to eggs to nearly every fruit, my body didn’t want any of it. She put me on an enhanced “FODMAP diet.”

FODMAP is an acronym for a sugar found in a lot of foods that you might not link together, for example, onions and garlic are two of the biggest offenders. You also can’t have lentils, beans, dairy, stone fruit and any sugar ending in “ol”. If you are FODMAP sensitive, you can’t fully digest the sugar and it ferments in your gut, feeding an overgrowth of bad bacteria in you gut. Ewww, right?

Well, I’ve been on that diet for a year now. I was getting discouraged until about a month ago when I suddenly got completely better! I was on vacation for half that time and was holding off on admitting I felt better until I was home for a couple of weeks. And, wouldn’t you know that two weeks after getting home and mentioning to my husband that I was indeed feeling better, all my symptoms came back (except for the pain, which I’m incredibly grateful for).

Days like these, I feel a lot of despair. My whole life I’ve been committed to better nourishing people through improving public policy, changing our food system, and building healthy family habits. But food is damaging me, not nourishing me.

So what’s next? I’m inspired by my daughter, who unfortunately inherited my complicated gut issues. She’s been put on a FODMAP diet as well and she loves to research recipes and cook. Together, it will be a lot easier to stay on the diet and stay inspired to continue seeking answers.

But I must admit, I no longer think this is an easy-to-manage chronic disease.

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