Interstitial Cystitis

One of my major gluten intolerance issues was an overactive bladder, though at the time I was diagnosed with a bladder infection and treated for that. 

The medications were not working, but my primary and my ob/gyn kept giving me more medication.   I was given medication for months with no relief.  

No relief was due to the fact that I was being misdiagnosed as I had Interstitial Cystitis.  Here is a definition from the Mayo Clinic: 

Interstitial cystitis (in-tur-STISH-ul sis-TI-tis) is a chronic condition characterized by a combination of uncomfortable bladder pressure, bladder pain and sometimes pain in your pelvis, which can range from mild burning or discomfort to severe pain.

While interstitial cystitis — also called painful bladder syndrome — can affect children and men, most of those affected are women. Interstitial cystitis can have a long-lasting adverse effect on your quality of life.

The severity of symptoms caused by interstitial cystitis often fluctuates, and some people may experience periods of remission. Although there's no treatment that reliably eliminates interstitial cystitis, a variety of medications and other therapies offer relief.


The signs and symptoms of interstitial cystitis vary from person to person. If you have interstitial cystitis, your symptoms may also vary over time, periodically flaring in response to common triggers, such as menstruation, sitting for a long time, stress, exercise and sexual activity.

Interstitial cystitis symptoms include:

• Pain in your pelvis (suprapubic) or between the vagina and anus in women or between the scrotum and anus in men (perineal).
• Chronic pelvic pain.
• A persistent, urgent need to urinate.
• Frequent urination, often of small amounts, throughout the day and night. People with severe interstitial cystitis may urinate as often as 60 times a day.
• Pain during sexual intercourse.

Some people affected by interstitial cystitis experience only pain, and some experience pressure or discomfort along with frequent, urgent urination. Most affected people, however, experience both pain and frequent, urgent urination.

Although signs and symptoms of interstitial cystitis may resemble those of a chronic urinary tract infection, urine cultures are usually free of bacteria. However, a worsening of symptoms may occur if a person with interstitial cystitis gets a urinary tract infection.


See the Mayo website for more information. 

*It is important to note that under cures listed no where does it state that Gluten may be one of the main foods causing your symptoms. It lists the 4 Cs: caffeine, citrus, Vitamin C and carbonated beverages. While these foods in excess can cause issues for me, gluten and tomatoes are my main triggers. 

Wendy Cohan, R.N.  Author of The Better Bladder Book (a true Savior to me)

IC is very difficult to diagnose and often is misdiagnosed.

When I was just beginning to put it all together realizing that Gluten was probably my issue with my stomach ~ I started googling all of my symptoms + gluten. 

My google search for bladder and gluten came up with an article by Wendy L. Cohan published on the Celiac.com website.

Reading the article - I really almost literally fell on the floor. OMG entered my head often and I'd like to say for just a few weeks, but it really lasted for a few months. I continued to have many more OMG moments after this one as I continued to heal from all my other symptoms after eliminating gluten from my diet.

How could all of my doctors have missed this? I am still amazed and have unfortunately in the process become a skeptic of most doctors. It takes a lot to win me over now.

Wendy Cohan's article truly was one that I feel helped me to start working my way back to being healthy. I have since purchased her book The Better Bladder book which helped me figure out my other food irritants. Her book is available for purchase on Amazon as well as on e-readers.

You can also find more information on her website:

http://www.wellbladder.com/services

My Thoughts on IC

There are many routes to take to diagnose IC and to cure IC. There are invasive tests that can be performed some of which may cause further issues and there are medications for it.  I have done none other than an elimination diet.  The testing may be helpful, but for me, I am  the elimination diet I did was the only proof I needed. 

 

IC  was one of the last symptoms to go into remission after cutting gluten.  It took a few months before I began feeling relief and my IC is affected by other foods that I have had to figure out along the way. 

I have had a few relapses, but being medication free minus antihistamines has been worth it for me. 

Antihistimines and Motrin helped when I was at my worst points.  Benadryl at night maybe relieved some of the symptoms, but mainly helped me sleep for 4 hour stretches. 

Loss of sleep was a huge issue for me.

My Food Culprits

I have found gluten and non-organic tomatoes to be the food groups that bother me the most.  I have also cut out large amounts of citrus, peanuts and some other fruits such as strawberries.

I still consume caffeine, but in small amounts and stick to green tea.  I do not drink sodas at all.  I have significantly cut back on meats with sulfites as well as wine. This is what has worked for me. 


You may have read that Cranberry juice is wonderful for bladder health. If you have IC it is not helpful, but harmful.  

I drank this daily for months while undiagnosed....not good, not good.  Along with gluten still being in my diet instead of helping me the Cranberry juice was probably making it all worse.

 

 

An Elimination Diet 

 

Cut the possible culprits and you can add them back in slowly and see what is ok or not. 

 

Keep a journal and you must read all ingredients on sauces, etc. and when eating out.  This is the trickiest part of eliminating finding hidden sources. 

 

It takes some time to learn the ins and outs of hidden food sources.  Don't beat yourself up when you realize you were consuming something on your "no eat list".   But sticking to whole foods/eliminating processed foods will significantly reduce your risk of consuming foods that cause trouble for you.

Watch out for foods produced on shared lines:  i.e.  Food produced on equipment that also produces wheat and peanuts.  I now completely avoid any products with shared equipment - I learned the hard way that it was affecting me. I can't trust that the equipment is completely cleaned.

Consider Aloe Vera Capsules

Aloe Vera has anti-inflammatory properties. 

Drinking the juice is not the route to go if you have IC as it is a citrus which can irritate the bladder walls more. 

Aloe capsules though have been found to possibly help.  I have been taking them - 2 a day for the past few months and they seem to have made my bladder even a bit less sensitive.  Here is a study that was done relating to IC and aloe vera capsules.  There are many brands on the market.  I have purchased mine at Whole Foods, Chamberlin's and other specialty vitamin shops.

The IC Network Forum

Another place for support is the ICN Support Forum located here:   http://www.ic-network.com/forum/   I have found some good information but not always a lot on gluten affecting the bladder.