UCPPS - Prostatitis, Interstitial Cystitis Forum

webslave wrote:David, gluten and wheat are absolutely unnecessary to a healthy diet. Mankind has only eaten wheat for 10,000 years roughly, and we've been on this planet for millions of years in one form or another. We never ate grasses as hunter-gatherers.

Viking, unless you find that wheat gives you distinct symptoms, such as fatigued and/or diarrhoea, it's not worth avoiding it.

Interesting. I think I'll try an elimination diet this week-end. However, I'll start with the junk foods, like Coke, chocolate, and very fattening foods (wheat does not seem to upset my stomach). I've had bouts with IBS for a long time in the form of diarrhoea after eating these foods, especially when I smoke after eating one of these trigger foods. I believe my IBS and chronic prostatitis / chronic pelvic pain syndrome maybe related.

I wanted to check-in an let people know that I have made some progress. As far as eliminating gluten from my diet I could only stick to it for a couple of days. The keep the story short I was literally starving. After over 3 decades of wheat/gluten, it is not easy to find foods that do not contain these two. I have managed to limit the amount of wheat/gluten in my diet. I plan to buy a cookbook or any book that can help me with gluten free meals.
The second part is that I have started to receive trigger point therapy internally from my PT. My PT has ordered the book (AHIP) and promises to read it. She has been to several conferences where the book and it's concepts are discussed and wants to read it in order to gain a greater understanding.
I ordered any accredited quercetin product and have been taking it for several weeks. My bottle is almost empty and I plan to take more. I also have been taking Wobenzym after reading a post on this website. I did not expect this to fix my problems, I was hoping it would take the edge of the pain.
I have also incorporated "Moment-to-Moment" relaxation into my day as described in AHIP.
The result is that my pain has been slashed in half and this has been so for the past couple of weeks. There have been two days when the pain returned significantly and I would classify these days as being flare-ups.
I don't know whether the internal trigger point therapy, Quercetin, Wobenzym or relaxation is the fix, it may all of the them, perhaps two of them - the point is I don't really care. I will continue with this protocol because I seem to be on the right track. AHIP instructs the patient not to get their hopes up prematurely so I will not do so. I believe I have many months to go but in the back of my mind I feel that the worst is behind me.
I will check-in again in a few more weeks.


P.S. Without this forum I would still be suffering from bad diagnoses and great pain. I intend to make a donation.

roberth wrote:I was literally starving. After over 3 decades of wheat/gluten, it is not easy to find foods that do not contain these two.

Hmm, That sounds a lot like wheat addiction to me. Wheat addiction is an unfortunate side effect of wheat intolerance. Your immune system starts to crave the very thing that is harming it, because of the impact it causes the system.

Here's a link, not a very scientific one, but it covers some of the main ideas:
http://www.springboard4health.com/noteb ... ction.html

If you want to eat gluten free but still have interesting food, then try Thai and Indian Ready Meals (most supermarkets stock these and in the UK they are even labelled as Gluten Free), or traditional potatoes, veg and meat. I eat a lot of steak and chips, chicken and potatoes, and up the quantity of vegetables. Infact there is a lot that you can eat.

The main problem is lunchtime when traditionally bread rules. I am lucky that where I work there is a good canteen and I can eat GF quite easily. Potato salads and jacket potatoes is what I have when I'm on the move.

Also try GF breads. I have found a couple of good brands that I can get from our local supermarket (they also have GF naan for the curry). They just need a slight toasting.

It really is a case of reading labels and just learning. I had a lot of flare ups in the first few months when I was learning what had Gluten in it (even some chips are batter coated). I have worked out that for me that this would happen 3 days after eating Gluten.

If GF works for you, it makes such a difference that it is worth the effort and it really is a small price to pay for controlling the pain.

I wanted to check-in and update my progress. I am having more good days than bad as of late. Through diet changes I have determined that tea exacerbates my problem, whether the tea is caffeinated or not. The tea seems to create a burning sensation in lower abdomen. I find it odd that coffee does not have the same painful effect, although I still have some discomfort while urinating. I plan to try some pre-relief (sp?) as suggested in the forum. I plan to go without tea for two weeks to see just what type of progress I can make.
Has anyone else been affected negatively by tea?

Yes, I cannot drink tea - gastritis and sore joints are the result.

Over the holidays last December I went on a binge and drank coffee and tea everyday, plus I ate a lot of chocolate. By the time the New Year was over I was in great pain. I cut out these foods, have practiced moment-to-moment relaxation and have been close to having a pain free day. I need to mention that I take 500mg of Quercetin every morning. I am hoping to go 3 weeks without a flare-up, my record is two.

I still believe a dietary change has made a big difference in my healing. I will post again in a couple of months.

I would add that, after being off gluten for a year or so, pelvic soreness will return within about 2 hours of reintroduction.

Unfortunately while in the midst of diagnosing and not knowing ALL foods that contained gluten, this connection was difficult to make.

Also, while undergoing the elimination, it did take months for my pelvis to settle down. I would guess that any perceived benefit from this is perhaps a positive indicator and should be taken to the next level.


Not a Dr. Not medical advice.

Guys,

I think food does play a major role in CPPS. However, it is not only what you eliminate, but what you add to your diet that matters even more. I have been working with a well known nutritionist here in NYC and I must say the results combined with my PT have been phenomenal. You see, adding the right foods and eliminating the wrong ones, not only fights infection, bad bacteria, etc. It also reduces inflammation (whether it be in internal organs or muscles) and it adds the nutrients that your body needs to properly function. A good example would be magnesium. Entirely overlooked by the medical community. However, 90-95% of Americans are magnesium deficient due to poor diets and it is one of the most important elements in our bodies. It is the number one antidote for reduction of muscle spasms, anxiety, etc. In fact, it's what doctors prescribe to women that are having premature muscle contractions prior to labor. Magnesium is also very important in that it allows your muscles to relax which in turn allows you to conduct more effective stretching. You can increase your magnesium levels by adding more greens to your diet such as dandelions, kale, broccoli, spinach, etc. You can also buy a natural magnesium supplement called "Natural Calm". It worked wonders for me, my whole family is on it now for a myriad of disorders. Finally, along with a healthy diet that includes, regular juicing and fasting, I also take a daily dose of probiotics and digestive enzymes. I don't have time to go into more detail about these products, however you can research all of these things on the Internet.

Hope this helps.....I'm convinced increasing your magnesium levels will help us all!

I wanted to check in and post an update for all of those people who have had to deal with chronic prostatitis / chronic pelvic pain syndrome for many years. Around this time in 2002 I first experienced symptoms. IT was not until the day after Christmas in 2004 that I decided to post on this forum. I can say that I am now 80% healed 80% of the time.

I feel two types of pain. The first is the exhausted pelvic muscle pain described in Dr. Wise's book. The second is bladder pain caused by acidic foods. After years of practice, I had made progress at relaxing my muscles although I have a ways to go. Secondly, Prelief has dulled my bladder pain. I often eat foods that I shouldn't because of Prelief. I need a treat every once in a while.

For those who are suffering now just know it will get better. It takes time but you must have faith. I may never get over this problem but there are days when I feel very little pain - and it is reassuring.

Tea sends me to the toilet like as if there is no tomorrow. I stay away from it at all costs.

Green tea gives me joint pain. Antigens on the surface of Green Tea mimic virii and bacterial antigens, thus goosing the immune system into thinking there is a serious infection developing for some people.

Proc Natl Acad Sci U S A. 2003 May 13;100(10):6009-14. Epub 2003 Apr 28.

Antigens in tea-beverage prime human Vgamma 2Vdelta 2 T cells in vitro and in vivo for memory and nonmemory antibacterial cytokine responses.

Bukowski JF et al.
Lymphocyte Biology Section, Division of Rheumatology, Immunology, and Allergy, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School, Boston, MA 02115, USA.

Human gammadelta T cells mediate innate immunity to microbes via T cell receptor-dependent recognition of unprocessed antigens with conserved molecular patterns. These nonpeptide alkylamine antigens are shared by tumor cells, bacteria, parasites, and fungi but also by edible plant products such as tea, apples, mushrooms, and wine. Here we show that priming of gammadelta T cells with alkylamine antigens in vitro results in a memory response to these antigens. Such priming results also in a nonmemory response to whole bacteria and to lipopolysaccharide, characterized by IL-12-dependent secretion of IFN-gamma by gammadelta T cells and by gammadelta T cell proliferation. Drinking tea, which contains l-theanine, a precursor of the nonpeptide antigen ethylamine, primed peripheral blood gammadelta T cells to mediate a memory response on reexposure to ethylamine and to secrete IFN-gamma in response to bacteria. This unique combination of innate immune response and immunologic memory shows that gammadelta T cells can function as a bridge between innate and acquired immunity. In addition, these data provide an explanation for the health benefits of tea.

PMID: 12719524 [PubMed - indexed for MEDLINE]

Yeah, I think doing both PT and dietary modification in tandem is a good idea. I can tell you that I was constantly doing various dietary modifications while working on new forms of relaxation and stretching. There are certain foods that affect pain levels, and so on. I'm all for it. And if you find out your have Celiac's, well, that will just make your life easier after you know. Its worth exploring. If you don't see improvement, don't get discouraged, try other foods and different stretches.

I also suspected magnesium, as I read studies suggesting its deficiency in the US population effects elderly muscle pain. VItamins did help me, although I am not currently taking any. They are always on my mind, though, if I start to have trouble.

I have no idea if exercises will benefit you or not. I DO know that for me, exercise is not the key. It is adjusting the connection between the spine and the pelvis that makes all of the difference in the world for me. But then again, I have also found getting really angry and letting that out works. So does going on vacation. So does walking all day long. I think that there are many ways to get this thing to calm down, but that you have to find the ones that work for you, and then immediately ask yourself why.

Do you still do exercises?

For reference, my brother went more than 36 months before he found improvements that worked for him. We found them together, so I only had to go about 8 months before I started to see significant improvement. And that was his second time around with this problem.

You might benefit from some anger sessions where you get yourself really angry about something (pick something worthy ) , and then just let the anger out. Do this yourself. Don't pay anyone to make you angry. I do this and it helps me. Maybe its just endorphines, but I don't care.

Anyway, I'm glad you are experiencing some relief. I think we all have to listen to our bodies to make progress, but also try new things that aren't dangerous. Cutting tea out of your diet, for example, isn't dangerous for most people. And since you are seeing a nutritionist, all the better.

I hope you continue to heal well.