PROGRESS UPDATE NO GLUTEN/WHEAT

[carld]

JohnP,

A very valid post and this is something I very much keep in mind. I have been in and out of the wax and wane on so many protocols and things I have done since my onset. It's very difficult to say what has worked and what I can and can't do. I have really done so many things to get better. I can't say right now that a wheat and gluten free or as free as I can diet is the key for me. I think along with everything else I try to do to stay well and to keep a good progress going, wheat and gluten free is just another tool for my progress. Nothing more...

There is no magic bullet here...CP/CPPS is a life long condition that slowly builds up and hits us. It's a long term change in habits, diet modification and lifestyle change both mental and physical.

I think the key to getting well in CP/CPPS is both time and positive attitude and the willingness to work hard and above all help other's with this condition get through. There is karma in all things and to help other's for the sake of helping with expecting nothing in return has been the biggest part of my protocol. Laws of attraction is at work here. So in the end...for me, it's just very compelling at over 3 weeks gluten free maybe up to 95% has been helpful to my over all health. Time will only tell and I will keep us updated as time goes on.

Cheers...

[ramana]

Hi Carl
Why didn't you have a standardized gluten / wheat test. Wouldn't that confirm if you have any problem with it and then you wouldn't have to try it. Or is it that the gluten/wheat tests are not good enough

[carld]

Hi Carl
Why didn't you have a standardized gluten / wheat test. Wouldn't that confirm if you have any problem with it and then you wouldn't have to try it. Or is it that the gluten/wheat tests are not good enough

Great question....I will ask my pulmonary allergist when I see him sometime soon here.

My understanding is these tests are not very good and don't work. Basically I was tested by having the normal way by being pricked with grasses and everything else. No histamine reaction to it. So I have non allergic rhinitis...Jury is still out for me on gluten...I do know that the less I eat, the better I feel over all. So I have to say that the less I eat, the better off I am.

How are you feeling since the Botox?

[GP2]

Coming off gluten and wheat was crucial for my recovery also. Jan 2007 was the time when I consumed my last ever beer! Don't miss it though :icon_smile_lachuh:

I have just had a very interesting experience. Terrible bowel problems of late resulting in fatigue, headaches and all sorts of crap symptoms. Then pelvic inflammation followed. Not wheat/gluten I knew that. What interested me was this sequence of symptoms was exactly the same as in Summer 2005 when I came down with CPPS. I reviewed my diary from back then and man was I suffering from terrible bowel/stomach problems. Until recently I thought that this was undiagnosed celiac disease or simple wheat/gluten intolerance although I was never completely sure if it directly caused the chronic prostatitis / chronic pelvic pain syndrome that followed? Bit of a co-incidence though if it didn't cause or at least part-cause my chronic prostatitis / chronic pelvic pain syndrome (although obviously chronic prostatitis / chronic pelvic pain syndrome comes on over many years). Back to the present though and again this co-incidence of bowel symptoms followed by pain.

Well suffice to say I discovered through trial and error that I have been suffering from a yeast infection (candida). Caprillic acid helped me to recover quickly as it kills off the yeast overgrowth. Interestingly when I came off gluten last year my stomach never really cleared up until I took caprillic acid supplement. (I also took garlic, acidophilus, pro-biotics etc). So now I know that yeast infections have been a big part in my problem (look up the symptoms - its directly related to muscle pain and prostatitis).

Now here's the conundrum - did years of gluten intolerance and yeast infections directly result in muscle dysfunction and tightness (vit b malabsorption/ leaky gut etc)? Its possible when I think of the years of constipation I suffered from I have no doubt that this resulted in constant straining of my muscles. In time I surmise my digestion will work as normal, my body will heal (it takes a good while if gluten intolerant/celiac), vitamins will be absorbed properly and toxins won't be so prevalent in my system (promoting mast cells and inflammation). Plus the muscles will be in a better state as they are operating in a body with healthy digestion instead of dysfunctional digestion.

Its all beginning to add up. And now I even know the difference in pain from a trigger point/stress and pain from inflammation due to wheat/gluten/yeast reactions. This is very important in helping me get to the source of the problem quicker!

Greg

[davioj]

Celiac disease, which is basically serious gluten allergy, is commonly diagnosed by a small bowel biopsy which will show villous atrophy in people with the disease. However, it can with a fairly good test also be shown using antibody levels to anti-endomysium and anti TTG although other antibodies also have been suggested. It would be interesting to know whether such antibodies are more prevalent in chronic prostatitis / chronic pelvic pain syndrome patients. Also, indeed no studies have shown anything resembling a relationship between gluten and chronic prostatitis / chronic pelvic pain syndrome or equivalent diseases although noboby may have looked at it. Could be an interesting side line study in the NIH chort to test these antibodies if they stored blood from men in these studies.

[webslave]

You are absolutely right, we do need a study looking at such antibodies in men with CPPS. If the so-called NIDDK and prostatitis working groups had a real interest in this disorder beyond their own career paths, such a study would have happened long ago.

I have written, numerous times over the last decade, and in various public fora, that my own condition yielded in part due to a gluten-free diet. Yet nobody picked up on it, except my fellow sufferers.

Amazing.

[davioj]

It probably would be easy to do since the samples will be there I suppose. However, I have some problem understanding the rationale behind the idea that gluten would be very important. It may have helped a lot in some cases to stay away from them but what would the mechanism be? Unless, as you stated, it is helpfull in GE symptoms and therefore increases general wellbeing in some people. However, its probably an epiphenomen and not the main cause of the syndrome I would think. But who knows. It will also be caused by a lack of funding since, as in all medical research, it's all about how to get the money to do the study.

[webslave]

What would the mechanism be? How about this:
viewtopic.php?f=13&t=2367&p=11462

[GIAN.B]

Hi to all.
I`m a member of Italian Prostatitis forum (http://www.aispep.it).
I confirm all about gluten . My symptoms (urethral pain after urination/ejaculation) are very improved and often I`m symptom-free with a totally celiac diet.
I was positive to gluten anticorp in blood but bowel biopsy was negative (three years ago..)
Many months with terrible diarrhoea gone away with gluten free diet.
Now I've urethral pain but much less than two-three years ago when i was terrible bowel symptoms and diarrhoea.
In these days I realized that seated urination in WC) , the burning is almost absent, and then `I'm thinking that there may also be a muscle spasm of internal` anus muscle that can cause urethral burn.
However at the moment for me is gluten free diet and urinate in sitting position is `working enough ...
A huge greeting to all and I will continue to write in this thread and follow.

P.s Sorry for my terrible English!!

[garyholc]

Hello there! Your English is actuallty very good so no need to apologise :)

[GIAN.B]

Oh thanks !!!
But Google translate helped me....

[carld]

This is very interesting....I have slowly returned to a wheat but to about 50% . I wonder if the small amount of irritation I feel in my urethra/perineum or when I have a BM is from the wheat? I really believe diet is the factor here, particularly wheat.

[GIAN.B]

This is very interesting....I have slowly returned to a wheat but to about 50% . I wonder if the small amount of irritation I feel in my urethra/perineum or when I have a BM is from the wheat? I really believe diet is the factor here, particularly wheat.

Uhm..if you have problem with wheat..attention to gluten is better...wheat is only a part of the cereals ...

[neue01]

GP2

I have noticed the same symptoms. I have been following an anti candida diet primarily and this has brought relief when combined with internal massage. For some reason I flare up within 30 minutes of eating a trigger food. I also notice major relief from flares when taking caprylic acid or garlic. I too have not had beer for some time now. Total bummer.

[garyholc]

Carl

Any update on the wheat/gluten free diet lately? Are you still wheat and gluten free and symptoms still improved? My new GF has Celiac's and it may be easy for me to swtich to a similar diet as her so we both eat the same meals etc.

Could you just give an example of what you eat for Breakfast, lunch etc. as I know wheat/gluten free diets are quite restrictive, unless you want to spend loads on specialist foods (bread, pasta etc)...