Soy Stories – Fresh Tastes by Bev

By Bev Laumann, Author of A Taste of The Good Life: A Cookbook for IC & OAB

Lillie’s story

Lillie had the disease more than twenty years. Still, she felt she had her IC symptoms pretty well under control and rarely had flares. On this day she was in a hurry to get home from work and just had one quick stop to pick up groceries. At the store, she headed straight for the bread aisle. Once again, she didn’t see her favorite whole wheat bread. The store had suddenly stopped stocking it and she’d done without it for three weeks. In its place was a stack of Millbrook 100-percent Whole Wheat loaves, a nationally distributed brand. She checked the label for things that she was sensitive to. The preservatives were ones she was okay with (she had eaten those in other foods with no problems) so she figured it would be fine. She tossed one in the cart. Over the next week she used the bread for everything from french toast to turkey stuffing. It didn’t seem to bother her bladder so it became her new bread of choice.

About three weeks later, Lillie noticed her bladder seemed slightly more sensitive than usual. “What lousy timing,” she thought. For the past week, she’d had more than her usual amount of interest in her husband’s physical affections. “Maybe that’s the cause of my bladder flare-up,” she thought, “too much of a good thing irritating the bladder. I’ll try staying away from that for two weeks…. let my bladder heal up.” But even sexual abstinence didn’t help. Her bladder was hurting more and more every day. She began regularly taking the pain pills her doctor gave her.

By the time she had been eating the bread daily for nearly five weeks, she was in a constant and increasingly severe IC flare-up. By then, she didn’t associate her pain with the bread. (After all, almost all of the food-triggered flares she’d ever had came on within hours of eating the offending food. Only on very rare occasions would one hit her the following day.)

When she couldn’t take it anymore, she called in sick at work. She had her doctor check for a bladder infection or a vaginal yeast infection. Nothing there. She checked and rechecked labels on foods she ate. Nothing her bladder reacted to there. Now she was getting frustrated. She couldn’t figure out what was causing the flare-up in bladder pain. Her doctor suggested maybe the disease was just going through a normal phase of fluctuation… worse for awhile, then better for awhile. She was just in one of the “worse” phases. He suggested she increase the dosage of her usual IC medication.

His explanation sounded logical alright, but his explanation for her plight just didn’t “feel right”. She began taking more of her usual IC medication as he recommended, but the flare continued. Was her medication beginning to fail? What if everything that worked for her suddenly stopped working? She sat alone at home with her heating pad. Her mind wandered to increasingly catastrophic scenarios.
She felt helpless and scared, and mostly depressed. The pain just seemed to keep on and on and there wasn’t anything she could do about it. She’d been home from work for two weeks and was seriously thinking about going out on disability.

Then one morning she stood in the kitchen and read the bread ingredient label while waiting for her toast to be done. There it was, toward the end of the ingredient list: soy flour. “How can that be in bread called ‘100-percent Whole Wheat’?” she commented to her husband. “How do they get away with that?” Then she remembered seeing soy products on a list of IC foods to avoid. Her bladder did
flare up with aged and fermented products like soy sauce and tofu. Yet on several occasions she’d eaten soybean oil and some fried soybean snacks with no problems. She wasn’t allergic to soy either… at least she didn’t think so. If the bread’s soy flour was the problem, wouldn’t it have made her bladder flare up the first day or two?

“Just throw the bread out… anything’s worth a try,” her husband volunteered. Within a week of tossing the bread, the flare began to subside a little. Two weeks after that she was back at work and her bladder was back to normal.

Trish’s story

Trish was recently diagnosed with IC. She’d been experimenting with diet since her doctor gave her a list of foods to avoid, and she knew which foods bothered her bladder. She’d had eaten grilled Ahi tuna on several occasions with no problems. Yet she had recently been eating canned tuna in a favorite recipe and every time she tried it, within hours her bladder was on fire. What added insult to injury was that the tuna also gave her a case of sour stomach and indigestion before the bladder pain came on. She switched from tuna in oil to tuna packed in spring water, but the change made no difference in the bladder pain. When she made the recipe with canned cooked chicken instead of tuna however, she had no bladder reaction. She was sure canned tuna made her IC worse.

She checked her doctor’s diet list again. She checked two different IC diet lists on the internet. None listed tuna as a food to avoid. So how come the flares?? Something about the canning maybe?? It couldn’t be anything else in the recipe or the chicken version would have caused an IC flare-up too.

Finally she called another IC patient and together they tried to figure it out. Since her friend’s bladder flared when her allergies did, the friend asked Trish about possible food allergies. “No”, Trish said, “I don’t have any allergies at all actually. I don’t think I’m allergic to tuna… I’ve had grilled tuna plenty of times without a problem.” Trish read the label, “The can here says ‘tuna, water, hydrolyzed soy protein’… could it be the soy protein? Soy sauce is something I avoid… could the soy protein be a problem too?” “Well I don’t know,” said her friend… “maybe the only way to tell is to try some plain tuna in water… some brand that doesn’t have the hydrolyzed soy protein in it.”

Trish found other varieties at her store that contained only tuna and water: Star-Kist “gourmet”, and Star-Kist “low-sodium”. Bravely trying those, she waited for the symptoms…. and waited…. and waited. The change seemed to do the trick, and her tuna recipe– minus the soy protein– is now back on the dinner table at Trish’s house.

Unlike Lillie, Trish’s reaction to the hydrolyzed soy protein was quick and dramatic, occurring within hours of eating it. Most IC patients report that reactions to soy sauce, tofu, or hydrolyzed soy protein are like Trish’s– fairly speedy.

My Own Soy Story

No matter how long you’ve had IC, you’ll always be learning something new. I still learn new things about IC, about my body, and how it reacts to foods even after having bladder problems for years. Just this last winter I learned that not all my IC flares come on in a few hours either.

Aged or fermented soy products like soy sauce, tofu, or miso have always bothered my bladder. They contain high amounts of inflammation-stimulating monoamines.. I usually avoid soy protein isolate or hydrolyzed soy protein too. (The way they’re manufactured results in MSG a notorious nerve sensitizer– being formed. Even the tiny amount of MSG present in hydrolyzed protein products is enough to trigger a bladder flare for me). But I thought I was safe with non-aged, unfermented, unprocessed soy products. I’d had soy sprouts on salad and soy ice cream for dessert on a couple of occasions without any bladder problems. So I assumed that soy was basically alright for me, but there were just a few forms of it I had to stay away from. Well, it was just as my mom always said, “Don’t ‘assume’ it’ll make an ‘ass’ out of ‘u’ and ‘me'”.

One day last winter I was feeling fat and wanted to lose a little weight. I decided to shave some calories from my diet by substituting low-calorie soy milk for my regular milk at breakfast. I bought a quart of soy milk and began using about a cup daily. At first, there seemed to be no problem. Like Lillie, I had never experienced a flare that didn’t come on within hours or a day or so at most. After several days went by with no increase in bladder symptoms, I felt safe in using the soy milk. Then about two weeks into my plan my bladder began to get worse. And worse… and worse. I became super-paranoid about sticking to my diet. I watched my fluid intake, my stress levels, how much driving and sitting I did. I began wearing looser clothing. I exercised like crazy. Then I tried avoiding all exercise. I checked for infections. I reduced my medications. Then I doubled up on them. I checked and rechecked all the inert ingredients in all my medications. I stopped wearing perfume, I changed soap, I changed laundry detergent.Nothing, but nothing, made even the tiniest dent in the miserable and constant bladder pain I was in. What’s more, my facial complexion was a mess, I would get weepy and cry at the drop of a hat. My breasts ached a bit like they did when I was I was pregnant with my kids. I was crabby like I had PMS. It was downright weird. In fact it was almost like the time I tried reducing my estrogen supplement by half. (After having my ovaries removed in my thirties, for years I’ve had to take estrogen in pill form as a replacement.)

As I thought about my body’s reactions to shifting hormones, the light bulb suddenly went on in the dim reaches of my brain’s cob-webbed attic.

Phytoestrogens and the IC Bladder

Phytoestrogens are plant substances that mimic the health effects of the estrogen produced by our own bodies (men also produce some estrogen, though not as much as women do). Soy is loaded with these estrogen-like substances. The well-advertised health benefits of soy’s phytoestrogens and phospholipids are one reason soy is such a popular additive in many of today’s manufactured, canned, or frozen foods. Soy is perceived as healthy. Soy sells. And for that reason alone, it’s becoming increasingly hard for consumers to avoid.
Sure enough, as soon as I gave up drinking the soy milk, my bladder gradually began to improve, though it took about two weeks to get back to normal. Like Lillie, I found that this ‘stealth’ effect of soy was slow to come on and slow to go away. Gradual change is much harder to perceive, and the cause of it much harder to pinpoint.

But wait, there’s a flip side to this. Some womens’ IC gets worse with pregnancy and some women get better with pregnancy. Some women get worse when they take birth control pills and some get better. Some menopausal women have IC flares when they take estrogen supplements and some find their IC gets better when they’re on estrogen. Some women have IC flares just before their period, and others get flares when their period ends. (The latter group actually see their monthly period as a blessed relief from their pelvic pain.) Some women do better when they take progesterone supplements, others do worse. So could some of us actually improve as a result of eating these non-fermented, non-aged soy products?

According to urologist and IC researcher Lowell Parsons of UCSD, some of the cells that comprise IC bladder tissue have estrogen receptors, and he feels that may be one reason we react to changes in our hormonal milieu. Even as far back as eleven years ago, IC researchers like Tufts University’s Dr. Theoharides was investigating bladder mast cells in IC and noting that estrogen stimulated these inflammation-causing cells of the immune system (“Mast Cell Research at Tufts University”, ICA Update (summer 1991), page 5). The scientific evidence seems to suggest that a beneficial effect on IC for soy phytoestrogens is much less likely than an adverse one.

Can plant substances really affect women’s hormone status? It appears they can, whether or not the woman has IC. According to the non-profit scientific organization, North American Menopause Society, and a recent article in the Wall Street Journal (7/8/02, Ron Winslow & Geeta Anand, “More Options and Unknowns”) phytoestrogen products are popular among women who want to treat menopausal symptoms such as hot flashes, but don’t want to use synthetic pharmaceuticals. Both soy products and the herb black cohosh (cimicifuga racemosa), contain substantial amounts of phytoestrogens.

In a review of several studies of black cohosh, one doctor found reasonable evidence for its use for menopausal symptoms. (“A review of the effectiveness of Cimicifuga race-mose (black cohosh) for the symptoms of menopause”, Journal of Women’s Health, 1998). Chaste berry (vitex agnus-castus) and flax seed oil (linum usitatissimum) may also affect women’s hormonal status, though that hasn’t been firmly established in clinical trials yet. Unfortunately, even less research has been done on the long term effects of these plant-based substances than has been done on the prescription pharmaceuticals.(Physicians’ Desk Reference (PDR) for Herbal Medicines, Medical Economics Co., 2001).

The Bottom Line

Whether or not there is a subset of the IC population who is actually helped by eating soy products, I don’t know. There does however, appear to be a quite a few IC people whose bladders react negatively to soy, even when it has not been aged or fermented (as soy sauce has). This soy-sensitive IC population has been large enough and the evidence strong enough in the last few years, to warrant the Interstitial Cystitis Association changing their long-standing list of foods to avoid. It was only relatively recently that they changed “soy sauce and tofu” to “soy products” in general. A possible hormonal connection to our dietary difficulties would be an intriguing research subject to explore too. But meanwhile, for those of us in the trenches, hidden soy in the foods we eat may be something to keep in mind when we go looking for the cause of an intractable long-term flare. And given the latest trends in food marketing, more of us than ever may be dealing with these soy-triggered IC flare-ups.