I, the owner of this site, was the first person ever to note on the internet that gluten can affect symptoms. Back in the 1990s I wrote:
However, I’ve proved, over and over again, that this phenomenon is real. If I start eating gluten-containing foods, I go from next to zero symptoms to noticing, when crouching, an immense upwelling of pain in my groin.I gave up wheat years ago, mainly because of the loose bowels it caused me. I also noticed that my two bad CP/CPPS flares since “conquering” my CP/CPPS were both associated with periods of re-introduction of wheat, oats and barley into my diet. I posted messages to various prostatitis and IC/PBS message boards in the mid-1990s, but nobody responded. I searched the Internet and found no hits, at that time, for wheat or gluten and prostatitis or interstitial cystitis. I also searched the PubMed database, but found nothing that connected the conditions to gluten. — Mark M., ucpps.men
Gluten and prostatitis: case histories
After I posted my experiences on the Internet, and then on this website, a number of men followed my example and reported a tremendous response to wheat exclusion diets. Here’s a typical posting:
Other men commented:Now after being on a wheat free diet for 4 months my irritable bowel syndrome, urinary problems, and best of all, sexual dysfunction have all abated. (Viagra wasn’t even working for me before.) My uro can’t believe how firm my prostate has become.( Just had a check-up today.) No trace of bacteria before or after massage! I was resigned to the fact that I would probably have a lousy, prostatitis-burdened life for the rest of my life. Now I am feeling normal, energetic and healthy again. — Forum Member
as well as:After dealing with this problem for many years, I have found that reducing my gluten intake as much as possible (complete elimination is almost impossible in a Western diet – unless I make it my life’s mission) has been the only thing to reduce my symptoms. — Forum Member
Wheat definitely is a key for me. I wanted to add that I was screwing up initially with the wheat free diet since SO many things secretly contain gluten. It’s been about 3 months and symptoms are 90-95% better so far. — Forum Member
I completely agree with the association prostatitis/celiac disease. In my case, it is sufficient to eat just a piece of bread to feel the pain from prostatitis within a few hours. There is no much literature about it, but since I have stopped eating bread, pasta and so on, my prostatitis has gone away. Hope my experience may help — Forum Member
I’m 58, male. I have had lower pelvic pain at night for about 30 years. 5 years ago I stopped eating all gluten containing foods, (wheat, rye, and barley). Although my celiac test was negative, within a few weeks, the pelvic pain at night disappeared, only to reappear every time I have reintroduced gluten. — Forum Member
I am 40 years old and seven years ago had a sudden attack of prostatitis. Went to several doctors and had many tests and never found adequate relief. Over the last several years I also developed irritable bowel syndrome, tiredness, lethargy, brain fogginess. I have been modifying my diet and exercise program to optimize my health, but it has always been an uphill battle. Recently, I bit the bullet and went completely gluten-free and after 2-3 weeks, I feel amazingly better on all fronts with my prostate in the best shape it has been in 7 years. Hopefully the gluten-free diet continues to pay dividends as it is a very small inconvenience for the pay off. Definitely worth trying for anyone with similar symptoms. Was also tested for celiac disease and whole bunch of other stuff which all came back as “normal”. — Forum Member
And more recently:In my personal experience there is a 100% link between my prostatitis and eating any kind of gluten. It never fails, the tiniest bit of gluten and symptoms come straight back but all my symptoms are much less severe than before I realized the connection between gluten and prostatitis. I first identified the symptoms of prostatitis when I was about 17 but it was very confusing, it took me a while to really understand what was going on. I had stomach cramps since childhood and difficulty sleeping with that but when I turned 17 and up things got gradually worse and worse. Later I started taking antibiotics for acne and I noticed while I was on antibiotics that symptoms went away. After going off and on antibiotics a couple of times the symptoms would always come back. At the beginning of 2014 things were getting really bad and where I used to get pain once or twice a week it was now every single day. Finally a doctor advised that I take gluten out of my diet and it worked. Now I have no problems unless I have even the smallest amount of gluten. I wish there were greater awareness about this link because it would have saved me many many years of pain and by taking my diet into my own hands I live a far better life. But it doesn’t give me back the many years of pain and confusion. — Forum Member
In 2021:I am 34 years old and had prostate problems since early 20s. From around 3 years ago the problem became increasingly worse and seriously impacted my lifestyle. I had problems urinating. Would wake up 3-5 times a night only to urinate a few drops. I had extreme pain sitting down for more than 15 mins. I never thought looking at a chair would bring such dread. I would regularly leave social events due to the extreme pain or just avoid it all together. My doctor prescribed me very strong antibiotics which initially started with 2 week treatment. This worked the first time but the condition came back a few months later. With each return visit he would prescribe stronger and longer treatment of antibiotics, from 3 months up to 4 months. Unfortunately these were no longer effective. I even saw an experienced urologist and he basically told me that he sees someone like me coming into his clinic 1-3 times a week and basically told me there is no cure and that I would just have to live with it. Because of the extreme pain and the negative impact it was having on my life, I scoured the internet and tried almost everything from drinking broccoli juice, litres of cranberry juice, taking hot baths, vitamins, oils, avoiding coffee, garlic, onions, chilli, weird stretch exercises, all that. None of which worked. The remedy that worked for me is avoiding Gluten! Simple as that. Ever since avoiding gluten the symptoms have gone 95%. I don’t think about it prostatitis anymore because it doesn’t impact my life! Sometimes it is difficult to avoid gluten all together and sometimes I would eat a piece of bread or have a beer. And sometimes it would flare up a little bit but this is minuscule compared to the pain I was in during the torturous times. — Forum Member
and another:This has changed my life. SUFFERED for 6 years. Drips after taking a piss that got larger and larger over the years. Burning after ejac. Constant need to urinate and inability to feel emptied. Night after night of sleep loss from frequent urinating. Doctors. More doctors. Acupuncture. Nothing helped. I've had no reprieve, ever. Not a single day off from prostatitis.
I gave up Gluten for the hell of it after hearing the inflammatory properties it brings to SOME people. After two days, no more drips after pissing. After 5 days, able to fall asleep once my head hit the pillow. Two weeks in, I feel like a different person. I sleep THROUGH THE NIGHT.
and one more:I'm a 22 year old and have been battling with heavy symptoms since I was 16. I wanted to share my story. Over the past 6 years my symptoms (pressure, blood in urine, inability to urinate) kept getting worse and worse. I tried any logical thing to fix it.
Doctors tried antibiotics but that didn't work so I was diagnosed with chronic prostatitis. Every day I felt tired and incredibly wore out. It lowered my motivation. I tried cutting sugar booze caffeine and nothing seemed to work.
Eventually my symptoms got so bad and the doctors were so completely useless that I started trying treatments others said worked for them. I changed my diet to rice beans and fish only for 1 week. My symptoms went away. I added back everything just fine, except for gluten. When I eat gluten the symptoms return. I also don't eat dairy but that's because I know I'm lactose intolerant.
It's now been 3 weeks with no symptoms and no blood! First time that's happened in 6 years! My motivation and energy is rising as well
I've been struggling with CPPS for 6 months. First diagnosis was chronic prostatitis (three rounds of antibiotics), followed by an ordeal of being put on Flomax, CAT scans, cystoplasty (most painful thing in my life!), TCM acupuncture, a myriad of supplements, religious stretching and was set to begin physical therapy.
And then a revelation happened. I decided to stop eating gluten and within 2 weeks my symptoms were all but gone. I'm a little over 3 weeks into a GF diet and I feel like it's a miracle. No more urgency, no more aching perineum, no more ED issues. Completely back to normal!
I know this is not an end-all cure, but I wanted to tell my story in case there was someone else out there who hasn't tried going gluten-free that it could possibly help. I'm not crazy about the idea of being GF forever (I love me some beer & pizza) but if it means living free of the scourged of CPPS then it's a small price to pay!!!
People who react badly to gluten may have celiac disease or non-celiac gluten sensitivity (PubMed).
Interestingly, according to the old-fashioned way of testing for celiac disease (colon biopsy in 1992), I do not have celiac disease, although I was not eating gluten at the time, which would have invalidated the biopsy result. In 2017 I had a genetic test (HLA DQ2/DQ8) that showed I was at high risk for celiac disease. I’m an “HLA DQ2 homozygote” (HLA-DQ2.5) which makes me up to 40 times more likely to have CD than normal. I tested negative for anti-gliadin antibodies, although once again this is not a useful test if you are not currently eating gluten. So whether I do or don’t have CD is unknown, although since I do develop a gluten-induced IBS with inflammation, and after wheat ingestion get very sleepy, depressed and irritable, with headache, diarrhoea, and sometimes even skin rash, the signs are there. In addition, my son developed dermatitis herpetiformis, a classic marker for CD, on his lower legs before I put him on a gluten-free diet, so that’s more evidence of CD in my immediate family. The other possibility is that I have non-celiac gluten sensitivity as mentioned.
All CPPS patients can investigate whether they are affected by gluten by following a gluten-free diet. But it takes a long time for gluten to mess up your pelvic nerves and a long time to recover from it. Patients owe themselves at minimum a trial of a month gluten-free. When you start eating gluten again after the trial, monitor yourself for any kind of reaction in the first few days after starting: flushing face, runny nose, phlegm, rash, cough, throat irritation, sore stomach, indigestion, diarrhea, pelvic discomfort, anything that would hint there is an immune reaction. If there is a sign of a reaction, repeat the trial. If the reaction occurs again, go gluten free.
The only way to find out if gluten is an issue for you is to exclude it for a month, then re-introduce in a big way (eats lots for a few days), and if you then notice any symptoms (bowel change, runny nose, stomach pain, rash, sore joints, headache, fatigue, hiccups, dyspepsia etc), that means you are sensitive to it and should exclude it forever.In some cases, nerve pain may be the only symptom of gluten sensitivity. The type of nerve pain felt by many people with gluten sensitivity is called gluten neuropathy.
Pelvic pain from gluten tends to come and go slowly in response to starting or stopping gluten, so look for other signs of sensitivity as described above.
In rare but serious cases, gluten can be a nerve poison for some people, and this may be the link to CPPS. Gluten definitely affects nerves. In some cases, nerve pain may be the only symptom of gluten sensitivity. The type of nerve pain felt by many people with gluten sensitivity is called gluten neuropathy. This would be a great topic for research!
Important note: from anecdotal evidence on our forum, it is clear that gluten avoidance does not help all men with CPPS.
Update: as of January 2017, a search of “prostatitis and gluten” brings up zero hits on PubMed, and so does a search for “gluten and interstitial cystitis”. A search for “gluten and pelvic pain” brings up a 2002 study. Close, but no cigar.
However, a link between IC/BPS and gluten was recorded in 2012 in the BMJ, so there is some progress on this issue!
Another interesting aspect to emerge in the last few years is the link between Irritable Bowel Syndrome (IBS) and CPPS (and IC). This link is confirmed in more than one study. On top of that comes new research into IBS that shows it can be successfully controlled in most patients by following a FODMAP-free diet, which is a diet that excludes gluten, inter alia.
If you wish to use this link between gluten and UCPPS in your book, or your website, or your research, please give attribution to this site.