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Network : Fresh Tastes
: August 2002
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.
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
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.
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.
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.
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."
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
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.
Own Soy Story
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.
and the IC Bladder
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
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?
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
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.,
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.
The Interstitial Cystitis Network
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