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Step by Step, Diet by Diet: Nothing seemed to work

Here’s my story.

In 2006, I woke up from a nap with a nasty intestinal infection. The intense pain and fever yielded to antibiotics, but I ended up with an apparently stunned gut (not a medical term, mind you!). It seemed to switch on and off of its own accord, sometimes paralyzed and sometimes … panic dashes. A well-meaning physician prescribed a daily dose of indigestible sugars to get things rolling again. They rolled, all right. It was awful! Soon I poured the lactulose down the sink and prescribed myself a vegetarian diet … with no seeds or nuts, since it might have been diverticulitis. Higher fiber would be healthier, right? And eating vegetarian would be better for the environment, right? I felt good about the changes, and for a while, my symptoms seemed to improve.

Then they got worse. Scary worse. There was a new kind of intermittent pain, and an occasional, distinct crawling sensation near my appendix. A different doctor warned me that if the original infection came back, it could be as dangerous as a burst appendix. “You’ll end up in the hospital on intravenous antibiotics.” She suggested massaging pressure points on my feet, encouraged me to keep eating healthy foods, and admonished me to monitor my situation closely, watching especially for a return of the intense pain and fever. Above all, I must try not to stress out.

Oh, sure. I might die … but I wasn’t supposed to stress.

Things plateaued, no worse but no better. A year later, I tried a naturopath. She suggested I might have developed some food allergies, and she tested my blood. My blood showed a mild allergy to bananas. That didn’t help. I didn’t eat bananas, and I sure hadn’t had any banana-juice transfusions. We were concerned that the months and (by now) years of ongoing “big D” were eroding my intestinal lining, creating a “leaky gut” situation so that even more allergens could pass undigested into my bloodstream, triggering even more food allergies. Wonderful! She suggested supplements and lots of cell-strengthening protein. Determined to get on top of this, I took her advice. I also started a food-and-symptom log. The pain and the crawling sensation became less frequent (ice packs helped), but my gut still seemed to switch on and off, and I just couldn’t seem to identify the culprit. Everything I ate was absolutely healthy. Homemade applesauce. Brown rice pudding, sweetened only with honey. Carefully balanced legumes and whole grains, for complete protein. Freshly baked whole wheat bread. Lots of beautiful salads.

A cross-country move meant finding another naturopath. She was helpful and knowledgeable, and on her advice I gave up lactose and gluten. I was tested for celiac, and when the test came back negative—hooray!—she suggested re-introducing wheat. Two slices of toast left me ill for two weeks. I asked my pastor to pray for me. He suggested the Specific Carbohydrate Diet (SCD), so I tried that. No fresh vegetables were allowed; everything had to be cooked until my symptoms went away. Table sugar was forbidden in all forms. So were all grains, either whole or processed. I got pretty good at baking with almond flour. The only allowable sweetener was honey. No chocolate. Ever. Sometimes, according to the SCD book I studied, it could take two or three years for healing to occur. My symptoms eased a bit, but they still didn’t go away.

Those of you who are FODMAP-wise see the problem, don’t you?

I grew up in a medical family. My first degree was in microbiology. I believe in data collection. My food-and-symptom log grew to two spiral notebooks. Then three. I graphed and color-coded my symptoms. The only pattern that showed up was that my improvement had plateaued again. For months.

To be honest, I was getting discouraged.

Eventually, my sympathetic and wonderful MD agreed I was due for another colonoscopy. He sent me to a gastroenterologist. I went without much hope; a previous GI specialist had essentially said, “You don’t have cancer. Go away.” After all, his training had emphasized cancer care. He had helped a lot of people; he just hadn’t helped me. The new gastroenterologist had a wider interest in current research. He also didn’t spot anything wrong (whew!), but he’d been reading about a new development … in Australia. He wrote the acronym FODMAP on a scrap of paper and suggested I search the internet, saying, “This is so new that there isn’t anything in print for the general public yet.”

Had I wasted another year? Why try ANOTHER diet? Wouldn’t another year on the SCD do me more good in the long run? Had I honestly given myself enough time to heal, according to those authors? The SCD had helped a lot of people, and even on the internet, I couldn’t find much FODMAP information. But what I did find looked well researched. On the first day of 2012, six years after that intestinal infection, I switched diets. Just on a trial basis, of course. I could go back.

Switching diets isn’t easy. It can mean giving away whole boxes of food, stocking up on expensive new supplies, trying a whole new repertoire of recipes. It’s frustration and hope, depression and determination.

It’s a big step.

Less than two weeks into the FODMAP regimen, there was a definite improvement. It looked as if something had been upsetting me. It’s found in many whole, healthy foods, and some people apparently lose the ability to deal with it: an array of short-chain fermentable sugars that the researchers at Monash University in Australia abbreviated FODMAP for Fermentable Oligo-
Di- and Monosaccharides, And Polyols. We eat them in increasing amounts. Even healthy foods can be high in “FODMAP” sugars, especially … get this … fructose.

Fructose, of all things! Honey is loaded with it. So are apples. Looking back at my food-and-symptom logbook, the pattern leaped off the page. Those foods, so healthy and appealing (applesauce was supposed to stop diarrhea, for goodness sake!)—so helpful to other people—had been making me ill because my gut was different. Carbohydrates were the issue, all right—but apparently I had limited the wrong ones for my problem!

I wish I could say I’ve experienced a total cure. FODMAP-aware eating doesn’t promise a cure, since “irritable bowel” is still considered incurable. But as I have read in the research posted online, a substantial majority of patients who try the diet experience this: Symptoms diminish from “overwhelming” to “manageable.” Mine went from “every couple of days” to “once a month or less.”

That’s downright normal.

After a few weeks, many people can reintroduce some of the problem foods. Many people can’t. I’m still trying, a year later. Maybe I did develop some food allergies—for instance, I still can’t seem to eat beef or pork, nor egg dishes or brown rice, and they’re considered FODMAP-friendly. But there’s a wide, wonderful variety of foods that I can eat, including some of my favorites (dark chocolate!). I’m willing to travel again, and even to risk an occasional restaurant meal. I don’t feel so awfully alone (depression is often a symptom of IBS—no wonder!—but it too often improves on a low-FODMAP diet).

Why have I written so much about my journey? Because I’m guessing you’ll recognize at least a few experiences. Because I hope you’ll realize you aren’t alone. Start with a frank conversation with your primary healthcare provider. Make sure there isn’t an underlying, treatable condition. Get help from a FODMAP-trained dietitian too, if you can. And if you’d like some company before, during, and after those visits, feel free to hang out here.

I’ve found some websites that are full of tasty gourmet recipes. I bet you’ll love them, so I’ll provide some good links. Here, mostly, I want to stick to simpler dishes, to the comfort foods that make your home feel (and smell) like home. Fresh bread. Sugar cookies. Safe Ketchup, Safe Barbecue Sauce. Meat loaf. Breading for cube steak. Toasted almonds. Hot chocolate.

And to keep the conversation rolling, I hope to interview some people who touch us in relevant ways: a life-skills coach, a gluten-free chef, a gastroenterologist, a theologian, and a health food grocer are on my target list … and I’m open to suggestions, because (DISCLAIMER!!) I’m not a dietitian. My training is in microbiology (B.S. Environmental Health, 1974), education (certificate 1977), music (I’ve been teaching flute lessons since forever), writing (here’s a link to my author page), and theology (Christianity and the Arts, 2009), and so I know that well-documented research is vital. Consult the experts! Yet for many of us with IBS, dietary trial-and-error is valid research. Keep a food-and-symptom log. Oh, and don’t be embarrassed if you want to go for weeks or even months without trying to add a new food, if what you really need is to feel “safe” for awhile. It’s a long road.

kathy bioBut you aren’t alone.