Thursday, August 22, 2013

Mast Cells, Interstitial Cystitis, and Is Diet Alone Enough to Treat Bladder Symptoms?

Mast Cells and Interstitial Cystitis
Hi Everyone! I originally wrote this in response to a crazy thread on a popular Interstitial Cystitis Facebook page. The group asked whether people used antihistamines as a part of their treatment, but the discussion turned into a debate about whether it is ok to use medications at all, or if a person can control IC strictly through "natural" means. The fact that people were judging each other's use of medication or not had me wishing there was a "dislike' button to use on Facebook!

Please think about what you post, my friends. These narrow-minded, judgmental views can really hurt patients who are trying desperately to get better. It is never helpful to "shame" another patient into doing something or not doing something, and often confuses an already confused person. 

As a registered dietitian nutritionist who treats interstitial cystitis patients, I know it is a rare patient who can manage their symptoms only with diet. Using the IC Diet to determine personal food triggers is a HUGE help with symptoms, and around 90% of patients feel some relief when they take out the worst offenders. Indeed, we find that other treatments work better when IC patients manage their diet. Think about it! You wouldn't take sandpaper to a scraped knee three times a day, or soak a cut finger in lemon juice three times a day, why would you eat bladder buster foods three times a day when you are trying to heal it?

Now, while I believe the interstitial cystitis diet is an essential part of the treatment plan for IC patients, I never want to discourage patients from combining it with other treatments. As an example, many IC patients have an excess of mast cells in the bladder lining and when those cells are irritated, either by some allergic response or even stress, they release histamine (you may have heard of degranulation) and this can increase IC symptoms. If you doubt that stress can cause this, think about the fact that some people get hives when they are under stress. Yep, same mechanism involved. Hives are degranulating mast cells too.

So, YES, taking an antihistamine can help control this process, and Atarax or Vistaril (Hydroxyzine compounds) or sometimes other antihistamines like diphenhydramine (Benedryl) or certinzine (Zertec) can greatly help IC patients. In addition, they often have the effect of reducing anxiety and helping a person sleep, again, contributing to the well-being of a sleep-deprived anxious bladder patient.

I have taken hydroxyzine for years, and I have had some other nice side effects! First of all, with my IC better controlled, I can eat a  much wider variety of foods than I could without it. That helps me create a healthier body than I could if I had to continue to restrict the types of foods I eat. I also used to have horrible allergies in the fall and the hydroxyzine that I take for my IC is enough to control that. In addition, I am allergic to cats, and I can now live with my two furry babies. So all around, although I understand the motivation of some people wanting to take the "natural" route, the quality of my life is immensely better with the drug than without.

As with anything you read on this blog, I am not dispensing medical advice. I ALWAYS ALWAYS want you to talk to your physician to determine the best treatments for you. Antihistamines, both prescription and over the counter versions, can have serious side effects or interact with other drugs you may be taking. Always err on the side of caution and work with your doctor.

Finally, Here is an article that explains things in a little more depth: Interstitial Cystitis and Mast Cells


Author, Speaker, Patient Advocate

Helping Yourself Is the First Step to Getting Well

For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices®: Customizing the Interstitial Cystitis Diet.

For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive Bladder



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20 comments:

  1. Thank you for this post. I suffered for years because all my friends put so much pressure on me not to take meds.
    I will say this, for me, the diet, Elmiron and Elavil saved my life.

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    1. Elmiron saved me too! Beginning my second remission thanks to it! I thank God I have insurance that covers the cost... it helps me to be normal again! So many people told me I was "poisoning" my body, but I know I would still be suffering without it.

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  2. Thank you so much for this! I'm new to the IC dx (although have suffered with it for years), so all this information is extremely helpful. My doctors seem clueless to the condition, and I've had to look for ways to improve my symptoms on my own. I have a f/u appt. with my PCP next month, and will ask about antihistamines. My symptoms have improved greatly with diet alone, but there's still room for improvement!

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  3. I have found an amazing difference since I started taking Zertec daily, I always knew antihistamines helped me, I used Benadryl for years but found it drying my sinus out so I switched.For me its a daily battle, stress is a huge trigger for me, always, and also strong scents, I have had allergies and sensitivities for years, since a child, I could no wear anything but cotton, perfume caused rashes, it went on and on, then in my forties, IC raised its ugly head.I have to follow the IC diet but I must always use prelief and Zertec. What works for one may not work for others, the one thing I have learned in the last ten years is you are on your own most of time figuring this out, the medical profession is greatly lacking in our area, my first Urologist never even heard of IC, he retired and this new one calls it cystitis, but is still skeptical about antihistamines helping, its a losing battle with him.I had the cystiscope to show the bladder lining damage and he still doesn't use the term IC.

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  4. I follow the diet faithfully. I take Elmiron. In March I was reading about MicroWave's and gave my MicroWave some thought. Food comes out different after heating in the MicroWave, sooo What is it really doing to my insides. April 1st 2013 I unplugged the Micro Wave, Follow the diet, and take the Elmiron. I have not had any relapes since. Jan, February and March I was in the Dr's office every week for an installation. For me this experiment has been worth the try. No pain is Such a RELIEF !

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  5. thanks for your article. My concern with these drugs and why i will not take them is the long term effects on the body. Color additives that are banned in other countries, titanium dioxide which is an ingredient for which no long-term safety testing on humans has ever been conducted. In fact, according to the Canadian Center for Occupational Health and Safety, titanium dioxide may be a human carcinogen.

    Learn more: http://www.naturalnews.com/027000_titanium_dioxide_vitamins.html#ixzz2cjq1ntOb


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    1. I try to avoid the artificial dyes, flavors, and sweeteners in medications/supplements. At one time the generic Atarax came in a green coated tablet. Very quickly I realized the color in the coating bothered me so I switched to another generic.

      On the other hand, hydroxyzine is a very, very old drug and has very few side effects. There are very few side effects, so I feel very safe using it. :-)

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    2. I feel like there are worse chemicals in our foods (non-organic foods) than in many of the medications out there.

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  6. I have been told that diet will not heal it and that would have to take supplements. I have had it for years and not getting better so far.

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  7. Along with diet changes and marshmallow root tea, Cystoprotek has enabled me to reclaim my life. I appreciate so much all the support and information from others on blogs. The blogs and chats have been such a blessing!
    Thanks for encouraging all of us to find our own path and to encourage one another along the way.

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  8. Thanks tor this!

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  9. I have to control mine with diet. I'm extremely sensitive to medicine and cannot take Elmiron or the Amitriptalyne with it. Even one Elmiron makes me feel really bad. I just stay away from the worst offenders...carbonated drinks, tomato sauce and any spices. I also have IBS so I have to be doubly careful!!!!

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  10. The diet makes such a huge difference...but I tried a drug holiday and I definitely NEED my meds (Elmiron, Urelle, hydroxyzine), too. Interestingly, I've been on Weight Watchers for two months, eating tons of all sorts of melons, fewer meals out, and my bladder symptoms are so much better. So while diet isn't totally the cure for me, I am seeing what a huge difference eating well makes.

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  11. Have had IC for 20 years and a combination of diet (wheat free) Cystoprotek, Hydroxyzine and trimipramine (for pain) have worked best for me. I also have Crohns and multiple allergies environmental and food. Elmiron makes my Crohns worse so had to discontinue that. Allergies are my big trigger, for some reason reason when I was in Hawaii on holiday I could eat fruits that would normally trigger a flare at home. Now all I have to do is find a way to live there :)

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    1. Just a thought, but try organically grown fruits. It could be the pesticides and not the fruit itself that bothers you.

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  12. I am just now coming to the realization that I have IC (after a lifetime that included bizarre bladder problems and an IgA deficiency that may tie in?). I am sooo happy to find this blog! I know it will be a go-to source in the road ahead. Just a few months ago I discovered an allergy to (I think) dust mites that leaves my skin itchy and welted. I started taking Alavert for the welts and realized my IC symptoms felt better too. I'm happy to hear it's okay to take antihistamines for IC, and while I'm still figuring out the IC diet and searching for a doctor I trust, I'm glad to know antihistamines might be an option.

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  13. Prelief is a lifesaver for meal, taken with meals, and of course I watch the diet closely avoiding acidic food and drinks. Elavil helps me sleep at night and I take Zyrtec every morning. Uribel helps if in a flare but when I flare nothing really reaches the burning pain, just have to ride it out. Azostandard over the counter is only help for flares.

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  14. Will taking Prelief allow me to eat things like spaghetti sauce or pizza? I haven't had those foods for over a year. I just bought Prelief but I'm afraid to try it with these foods.

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  15. Although I cannot give personal advice on here, I would say just be very careful. Prelief works for some people but not others. It also can help you eat some foods but not others. I know that sounds wishy washy, but I don't want to mislead you. So much about this disease is personal detective work to find out what helps you.

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  16. I have had IC for 40 years, yes, you heard that correctly, 40 years. I was officially diagnosed four years ago.

    I have found that staying away from my food triggers works. As long as I stay away from spicy foods, vegetable oil which is 100% soybean, caffine and natural flavors, oh and chocolate, I am fine. Soybean is my number one problem as it is in everything! If you read labels you will discover it is in about 80% of pre packaged foods on the market!

    Don't be fooled by the ingredient known as " natural flavors". They are sometime created by a process which distills the flavor into a base made of soybean!

    I was on ametriptolene for three years which helped, but I developed a heart arythmia while on it and since it is known to cause arythmias, I stopped taking it. Now due to the medication I take for the heart issue, I cannot take Elmiron. For pain relief I take Benedryl, Zantac 150, pyridium and Hyophen (releaves bladder spasms quickly!) on an as needed basis. I also take Oxibutinin on a daily basis for bladder spasms.

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