UCPPS - Prostatitis, Interstitial Cystitis Forum

Arch Pathol Lab Med. 2009 Feb;133(2):289-94.
The spectrum of eosinophilic cystitis in males: case series and literature review.

Popescu OE, Landas SK, Haas GP.
Division of Anatomic Pathology, Children's and Women's Health Centre of British Columbia, Vancouver, BC, Canada.

CONTEXT: Eosinophilic cystitis (EC) is an inflammatory condition of the bladder that has been linked to food allergens, infectious agents, drugs, and other genitourinary conditions. Like interstitial cystitis, EC has a strong female predominance. It is characterized by an intense eosinophilic infiltrate in the acute phase and fibrosis in the chronic phase.

OBJECTIVES: To document and focus on specific features of EC in males and highlight the relationship between clinical and histopathologic findings.

DESIGN: The bladder biopsies of male patients were reviewed. Eight cases of EC were selected.

RESULTS: Several known associations were noted as well as unreported features and associations such as Charcot-Leyden crystals, celiac disease, lupus anticoagulant, and additional viral and bacterial agents.

CONCLUSIONS: Eosinophilic cystitis represents a response to a variety of agents and may often be overlooked. The temporally biphasic morphologic features are the hallmark of this condition. Because clinical and imaging studies are not specific, a high index of clinical suspicion is often crucial to the correct diagnosis and proper management of EC.

PMID: 19195972 [PubMed - indexed for MEDLINE]

This is really interesting and relevant. It is my view that this condition is the causative FACTOR behind the eventual development of muscle dysfunction. That is to say the muscles eventually fail in their desperate attempt to cope with a dysfunctional bladder. Dr Robert Moldwin has directly expressed to me a similar emphasis on IC as the primary causative factor. Dr Moldwin's emphasis is on shaping diet feedback to calm the bladder.

Beer has always caused some horrible bladder reactions in me, so I never drink it anymore. Neither gin, vodka, nor rum seem to cause any reaction though they have alcohol.

Gin and Volka are two alcohols that are low salicylate. As are many of the bland foods that agree with bladders i.e rice, meat, green beans and pears. The low salicylate diet helped me contol my symptoms most before I understood the neuro muscular cause. Salicylates irritate inflamed nerve endings in many people. Round and round you go.

@Sherradin

Quercetin is listed as something to avoid due to its salicylate content. Did you find quercetin helped at all?

I came across the study below about d-mannose:

"Of the 18 PBS females who were treated daily with two scoops of D-Mannose, 17 (94%) reported symptom improvement, the lone exception being a subject unable to be contacted, but also not returning for treatment. Eighty percent became totally symptom free.

"Two men had been incapacitated with recurrent sepsis, retention, and obstructive uropathy. Both men underwent insertion of supra pubic tubes. Once released from the hospital, both were placed on a D-Mannose daily regimen. Improvement was suggested by their ability to avoid additional hospitalization."

"In addition, 80% of the painful-bladder-syndrome group became symptom free using D-Mannose."

Abstract from a report submitted to Progressive Laboratories http://www.healingtherapies.info/D-Mannose.htm"

Now it didn't state how long an improvement they felt but it was interesting anyway.
I know the general consensus on this site is that this substance isn't helpful in this condition. Maybe it's worth a try?
Would there be side effects?

I just want to insert this factoid: some people do have symptoms from gluten, without having celiac (aka coeliac) disease – they’re called ‘non-celiac gluten intolerant’.

I tried D mannose in the very beginning. I think it is really only effective if you have an infection as it works on the e.coli bacteria. That's my understanding. It made me worse as it is a cranberry extract and is high in salicylates.

DMcU I have never tried Quercetin. Generally anyone who is salicylate intolerant avoids all herbal preparations and I found less was always more. Most things I tried like vitamins caused a negative reaction. But also think that it was exaggerated by my anxiety over getting a reaction thus tensing up and further irritating the nerves...so a bit chicken and the egg.

This might be of interest to people who believe gluten might be an important factor. Taken from journal watch:


Gluten caused gastrointestinal symptoms in some individuals without celiac disease.

Many people without celiac disease actively follow gluten-free diets and insist that gluten produces symptoms. Some of these individuals believe that they have celiac disease, despite negative test results, and many cannot be adequately tested because they are following a gluten-free diet. Can gluten cause gastrointestinal symptoms in people without celiac disease, and — if so — by what mechanism? To answer these questions, researchers in Australia conducted a double-blind, randomized, placebo-controlled, dietary rechallenge trial involving individuals with irritable bowel syndrome who were proven not to have celiac disease and whose symptoms were under control on a gluten-free diet.

Participants were recruited through advertisements. Proof that celiac disease was not present required either absence of the HLA-DQ2 and HLA-DQ8 haplotypes or a normal duodenal biopsy at endoscopy while the person was on a gluten-containing diet. Of the 39 individuals who met the inclusion criteria and were enrolled, 5 were excluded (4 because of inadequate symptom control during the 2-week baseline period and 1 because of acute psychiatric illness). All participants followed a gluten-free diet; in addition, they were asked to eat two slices of bread and one muffin daily (these foods contained gluten for the gluten group but were gluten free for the placebo group). Preliminary testing showed that the taste and texture of the gluten-free and gluten-containing products were identical.

Nine participants stopped the study diet prematurely because of intolerable symptoms (6 in the gluten group after a median of 7 days and 3 in the placebo group after a median of 16 days). Poorly controlled symptoms were reported during more than half of the 6-week study period by more gluten-group participants than placebo-group participants (68% vs. 40%; P=0.001). During the entire study period, scores for pain, satisfaction with stool consistency, and tiredness were significantly worse in the gluten group than in the placebo group. Neither group showed significant changes in levels of fecal lactoferrin or celiac antibodies or in measures of intestinal permeability. Responses to gluten were similar between participants who had HLA-DQ2, HLA-DQ8, or both, and those who did not.

Comment: Although this study does not identify a mechanism for nonceliac gluten intolerance, it provides the most convincing evidence yet for the existence of this condition. Certainly, getting tested for celiac disease before a gluten-free trial is still optimal, given the implications of a celiac diagnosis — including the necessity of strict adherence to a gluten-free diet, an increased cancer risk, and the need to screen family members.
— Douglas K. Rex, MD

Published in Journal Watch Gastroenterology April 8, 2011
CITATION(S):
Biesiekierski JR et al. Gluten causes gastrointestinal symptoms in subjects without celiac disease: A double-blind randomized placebo-controlled trial. Am J Gastroenterol 2011 Mar; 106:508.

Pubmed abstract for that:
http://pubmed.ncbi.nlm.nih.gov/21224837