As if having IC wasn't enough to handle, many of us also have allergies, fibromyalgia, or irritable bowel syndrome (IBS). But have you ever had a mysterious "annoyance symptom"? You know, an annoying irritation of this or that which comes and goes? Your doctor doesn't know what causes it. You can't figure out exactly what's triggering it, and it's more annoying than debilitating. But it just adds insult to injury and makes life with IC a bit more difficult. If you've experienced this, you're not alone. As I heard one urologist and IC researcher put it, "You folks with IC just seem to have all these little problems..."
A Personal Tale
A Personal Tale One day a few months ago I was telling one of my doctors about the minor itching I've had inside my ears. I've had this problem on and off for the last several years but, compared to a raging case of IC, this annoyance was not high on my list of medical priorities. He examined my ears and proclaimed them perfectly healthy. Then he wrote out a prescription for an anti-itch ointment. It was the best he could offer he said, since he really couldn't see anything wrong with my ears. Maybe it was just "overactive nerves" he shrugged. I resigned myself to living with the itchies.
Then a few days later my urologist and I agreed to discontinue one of the medications I had been taking for my IC and fibromyalgia and replace it with another. As soon as I began taking the new medication I saw that it helped my IC but made my IBS (irritable bowel syndrome) worse. In an effort to find out what colon irritant might be in the new medication, I called the manufacturer. A lady in the company's customer relations department cheerfully read me the list of inactive ingredients (binders, preservatives, and colorants) in my new medication. After listing two yellow dyes (FD&C yellow #10 and FD&C yellow #30) in the tablet's coating, she said, "You know, I get quite a few calls from people who've had bad reactions to yellow dyes...lots of people are allergic to them. "Suddenly the light bulb went on in my dimly lit brain. Of course! IBS, allergies, migraines, and interstitial cystitis are all mast cell-related conditions. Could it be that the pill's yellow dyes provoked my IBS colon symptoms?
I got out my exacto knife and a magnifying glass and began carefully scraping the coating off a peppercorn-sized yellow pill. When I was done, I had a white pill and a tiny pile of yellow dust not much bigger than the head of a large pin. For the next few days I dutifully scraped the yellow coating from each tiny pill before taking it. My IBS flare subsided within a day or two. What was really curious though, was that the ear itching that had plagued me for years totally disappeared too. But how could that be? This was a new medication. Or had I inadvertently been consuming yellow dyes in previous medications?
Well, to make a long story short, this new medication I was taking had simply replaced an old one that, you guessed it, was also colored yellow with those same two dyes. I thought of all the effort I had put into eliminating foods, only to find that the culprit all along was in the medicines I had been taking!
Happily itch-free, I then worked with my pharmacist to find another manufacturer of my new medication... one that doesn't include dyes in the pill. I'm also now more wary of the potential for misery caused by tiny, tiny amounts of some substances.
Some yellow dyes in medication are also in larger amounts in foods. A couple of years ago I had a severe reaction to some yellow-colored buttered popcorn. I had a hard time breathing for a few minutes and the next day I had a terrific flare-up of my IC symptoms. Though I have no idea what ingredient caused the reaction, looking back now, I wonder if it was a yellow dye... in a much larger amount than I had been taking in my medications.
Food Colors, Allergies and the FDA
In 1960 Congress passed the Color Additive Amendments. This was a federal law that required all the dyes and colorants in food, drugs, or cosmetics be tested for safety before being used in any item sold. All the colorants then in use were tested. Of the nearly 200 substances used back then, very few survived the testing process. Today there are less than 35 dyes approved by the FDA for use in foods, drugs, and cosmetics.
Any food made with multiple ingredients must carry an ingredient list on the label and, if food dyes are used, the label must identify each individual dye. Research indicates that FD&C yellow #5 (tartrazine dye) may cause allergic reactions for at least one or two out of every 10,000 people in the U.S.. This dye is so notorious for adverse reactions that Scandinavian countries have banned it entirely. Items most likely to contain FD&C yellow #5 include: ice cream and sherbets, gelatins, cheese and prepared cheese dishes, candies, flavor extracts, Easter egg dyes, puddings, and cake and frosting mixes. The food coloring that comes in little bottles you buy at the grocery store also contains yellow #5.
Reactions to food colorings may be a true allergy or may be some other kind of sensitivity. Signs and symptoms of allergies vary from person to person but may include gas, stomach or uterine cramps, nasal congestion or runny nose, breathing difficulty, rashes or hives, swelling of the lips or tongue, and itching of the nose or roof of the mouth. In fact, a food allergy can trigger itching anywhere on the body and may not be accompanied by a rash. [3,4]. These symptoms are triggered by the immune system cells we have all over our bodies, called mast cells. In the bladder, mast cells are also involved in interstitial cystitis. For this reason, it's plausible that IC patients could have a bladder reaction to allergenic coloring substances.
Another substance to watch for is a red dye called carmine. It's a natural dye extracted from a red South American insect.  In the U.S. it is often used in place of man-made red dyes in products found at natural foods stores and health food establishments.
One reason food additives are so difficult to ferret out as a cause of one's IC bladder flare-ups is that the reaction could be an allergic "type 4" reaction. That is, it could be delayed by a day or so after you consume the offending item. Another problem is, as British allergist Dr. M. H. Lessof puts it, "In some cases, it is also possible that it may require the potentiating effects of exercise, mental stress, or in the case of asthma, the inhalation of an additional irritant substance, before the adverse effects of food additives can be clearly demonstrated".
Allergenic Substances and Labeling Errors
Seeing no bladder-provoking substances on the food's label doesn't guarantee the bladder-friendliness of the item. On rare occasions manufacturers slip up. For instance, in publicly available FDA enforcement records for the years 1992 through 1997, the FDA noted dozens of instances where food products as diverse as tortilla chips and ice cream were sold to the public in containers not correctly labeled. Many of these products in fact contained the notoriously allergenic FD&C yellow #5, but that ingredient wasn't listed. Sometimes the manufacturers were forced to recall erroneously labeled products and sometimes they did so voluntarily when they first noticed the error. Often items were sold to unsuspecting consumers before the product was recalled.
Yellow dyes weren't the only undeclared allergenic substance the FDA found. Sulfites, monosodium glutamate, peanuts, and other bladder-provoking substances were contained in products recalled from grocers shelves. (Although rare, mislabeling is a serious FDA concern. We as IC sufferers may react with bladder pain. Inadvertent ingestion of these substances by some asthmatics or highly allergic individuals could result in anaphylactic shock or even death).
So how can we protect ourselves from occasional product mislabeling? Well unfortunately we can't, without taking a lot of time and trouble. But mislabeling is rare and there are some things we can do to minimize the risk of eating something we didn't know about:
- Make as much food as possible "from scratch" rather than buying frozen, boxed or
prepared foods. There are alternatives to dyes for coloring foods you prepare at home. The spice
turmeric, when used in tiny amounts, colors food bright yellow without appreciably affecting
taste. For red or pink, try beet juice.
- If you have a bladder symptom flare-up and haven't eaten anything or done anything
unusual, check the ingredient labels of recently consumed foods anyway. Manufacturers often
change ingredients without notice.
- If eliminating foods still doesn't turn up the culprit, don't forget to look at any medications
you might take: Are any of them new to your regimen? Did the pharmacy change your meds
(from generic to brand-name for instance)? You can talk to the pharmacist and find out exactly
what is in each pill by each maker. If you are sensitive to sulfites in foods, be aware that they
may also be in some medications as antioxidants.
- Check for recalls of food products due to mislabeling: The Food Allergy Network provides
an e-mail notification service for food recalls. You can sign up at their web site at: http://www.foodallergy.org.
- Even if you can't figure out what ingredient in a meal caused the symptoms, write down all
the ingredients in each food consumed and save the information. You may stumble upon an
explanation, or at least a clue, later.
- Last but certainly not least, we can save ourselves from jumping to conclusions and
avoiding a safe food unnecessarily by
bladder testing any suspect item more than once.
If You React to Food Dyes
If you do have a reaction (bladder or otherwise) to some dye or other additive in food or
medication, you can register a complaint. (And if enough complaints are received the FDA acts.)
The FDA has posted this notice at one page on their web site: "Though reactions to color
additives are rare, the FDA wants to know about them. The agency operates the Adverse
Reaction Monitoring System (ARMS) to collect and act on complaints concerning all food
ingredients, including color additives."
People can register complaints about reactions to food additives two ways. First, by
contacting their FDA district office
(see local phone directory), or else by sending a written report of your reaction to:
Food and Drug Administration
200 C. Street, NW
Washington DC, 20204
There is also help available in the form of medications that stabilize mast cells and reduce
symptoms. For gastrointestinal food allergy reactions for instance, there are several studies that
indicate oral sodium cromoglycate (sold as the prescription medication, Gastrocrom) may be
beneficial. This is the same substance which is sold over-the-counter in the U.S. as
Nasalcrom-- a preventive for sinus-related allergy symptoms. The Interstitial Cystitis
Association also mentions that sodium cromoglycate has been used successfully in rare
instances to reduce IC bladder symptoms.
This article originally published March 2000, revised and updated by the author February 2003.
1. "American Dietetic Association's Complete Food and Nutrition Guide", R. L. Duyff,
Chronimed Publishing, 1998
2. "Reactions to food additives", M. H. Lessof, Clinical and Experimental Allergy, Vol. 25 ,
Supplement 1, pp 27-28,1995.
3. "Food Allergies", Merri Lou Dobler, American Dietetic Assn., 1991
4. "Adverse Reactions to Food", American Academy of Asthma, Allergy and Immunology, J. A. Anderson et al, NIH publication #84-2442, 1984.
5. "Occupational Asthma and Allergy Due to Carmine", S. Acero et al., Allergy (Denmark), pp 897-901, Sept. 1998.
6. "Oral sodium cromoglycate: its use in the management of food allergy", A.M. Edwards, Clinical and Experimental Allergy, Vol. 25, Supplement 1, pp 31-33, 1995.
7. "Treatment Guidelines", Interstitial Cystitis Association, 1999.