PROGRESS UPDATE NO GLUTEN/WHEAT

[carld]

I decided to give this update because I think it's very important. As of January 1st 2008, I decided to give up wheat and gluten from my diet as much as 99% to 100%. Some wheat and gluten may have slipped through the cracks. As of this moment, here is where I'm at as a result.

Since my onset of Feb. 2006 and coming up on 2 years since my onset, the one thing I was not willing to do or did not really try was wheat and gluten avoidance. Simply put. 39 years of eating it and my addiction to breads and pastas was something I did not want to face. Many of you know my contribution to this forum and my participation in helping others and practising my version of the protocol. I have had fine progress, but the compelling improvement I have seen 2 weeks into this diet change is beyond coincidental in my opinion.

At this moment, I can put my progress to 98%-99% symptom free. I do have frequency, but I really think it's down to bladder training at this point. All the frequency can condition my muscles to send signals to release water every two hours or so during the day. I don't think that's too bad for being in my 40th year!

This is my whole hearted belief of what CP/CPPS really is for most men. I would say upwards to 90% of us. So bare with my lament terms for my explanation of why I have symptoms and why I think many men have their symptoms.

Why do so many of us become symptomatic in our 30's?

Two factors of CP/CPPS in the works here...Ready, here it goes....Along with many other's but this is the big one two punch...
In our 30's, many of us have our careers in full swing and family to support, so stress levels kick in. If we are more prone to anxiety, we are more prone to pelvic myoneuropathy and neurogenic inflammation...Guys like us tense our muscles in the pelvic region...We know all of that now...That's SP. SP does not however and correct me if I'm wrong here, support the diet contribution to CP/CPPS. Perhaps, they should

Now diet...I think over a course of many years of eating gluten and wheat, it takes time for this to build up and time for our bodies to reject it and cause problems. So maybe by the time we reach our 30's it contributes to, pelvic myoneuropathy, neurogenic inflammation. Webslave has already proved this with his own case and struggle with CP/CPPS and His recovery once He stopped wheat and gluten. That's the one two punch for men like us. Wheat/gluten and stress/clenching = pelvic myoneuropathy.

Now back to my recovery...Two weeks into this I have also noticed the 9 or 10 pounds I gained from the holidays are gone. South beach diet here. Lean again, not like Scooby, but non the less, lean and continuing on.

Not eating any wheat was not as hard as I thought. I no longer take prota-q. Been a month now since I stopped. I still take my 10mg of Elavil to help control my anxiety but I have to really say this is to compelling to say that this is the placebo effect. To think it took me almost 2 years to try this and notice the improvement. No burning in my perineum, no burning after I pass a bowel movement. Just slight discomfort a 1 when I notice it. This is just to important and I would really hope that any of you who have not tried to stop wheat and gluten intake to TRY IT along with all the other protocols that there is for us here. I hope all of you try it and continue to get well over time, stress management and wheat and gluten free diets that can = a pain and discomfort free life. My very best to all of you.

Regards, Carld

[Sleeper Service]

Sounds good - pissing every two hours is actually fairly normal, especially if you're voiding a reasonable amount (say 250ml - 10 Oz) so I wouldn't necessarily worry about it too much.

[webslave]

Carl, you have given back to this forum much more than you have taken, so I thank you for that, my friend

You are right, gluten-avoidance (and in general food intolerance awareness) is NOT part of the SP, and I have had disagreements with DW about this. But I stand my ground, and for the best of reasons, because I KNOW that it is a major factor in my own case. Gluten can be a nerve poison for some men (see viewtopic.php?f=13&t=2367 ). That's a simple scientific fact, but DW is a psychologist, not a nutritionist, and so I do not try to force him to accept that this could be a valid trigger when he has not experienced it directly himself, and moreover where there are STILL no supporting studies linking gluten and pelvic pain (sadly!).

[graeme]

I find this very interesting and one thing I have not tried

I always thought if I had a problem with gluten I would have bowel problems etc not pelvic problems !

How easy it to avoid I know its in bread and beer etc but little else !

I may just give this a go, how long does it take to notice any improvement if there is an intolerance there !

CPPS caused or irritated by a simple allergy who would of thought it !

[garyholc]

I believe Gluten is in a LOT of foods!!

[webslave]

No wheat, rye, barley and I also avoid oats. Rice is fine.
Notice improved bowel function and energy levels very quickly.
CPPS improves over months and keeps on improving for years.
This only works for men who have symptoms when eating wheat : diarrhoea, sore stomach etc

[carld]

Thank you Mark...

I even had an allergy skin test early on in my onset which showed no allergic reaction to wheat. I don't really trust these tests...I knew there was a connection with my overall health, physical and metal and wheat and gluten connection.
Just stopping the wheat and gluten I have noticed better bowl movements that don't irritate my rectum and prostate and other things like not having congestion like I would when I ate pastas and breads. At this point I no longer use my nasal spray corticosteroid for my non allergic rhinitis. That's what the doctor called it "non-allergic rhinitis". I knew that the possibility that wheat being behind this diagnosis was strong. Simply put, humans are not meant to eat this stuff in my opinion. I will continue on this path an keep all of you posted. There are stores that sell gluten free foods like "Whole foods" and "Trader Joes" in California.

Again...wheat and gluten is complicated how it effects different people. I can't say for certain how it effects me...All I know is in the past two weeks, I have had the least amount of symptoms in 2 full years since my onset in FEb. 2006. I think time, my current protocol and this new addition of staying away from wheat as best I can has been compelling and I believe helpful.



Regards, Carl...

[webslave]

I read a few years ago that although only a small percentage of people have celiac disease, up to 8% have problems with wheat, and I agree with CarlD that these grassy plants, which we only began eating a mere 10,000 years ago when we gave up being hunter-gatherers, are not our natural food.

[Richard.N]

The 10,000 years thing is an interesting point, but it begs the question as to why rice is well tolerated. I had a quick look at Wikipedia and it appears to have been cultivated for less than 10,000 years.

[webslave]

White rice is the least allergenic grass family plant, then corn. Both lack the gliadin, glutenins and prolamines (proteins) found in the other grasses.

[Richard.N]

Ah - right - so it's not really the switch to sedentary farming, but the toxic properties of some grasses.

[webslave]

No, it's both. You can see the same issue with alcohol and indigenous people who have no history of using alcohol (Kalahari Bushmen, Australian Aboriginals, etc). We Westerners have had aeons of exposure to alcohol and we are able to process it, albeit with a toll on some members of the population (a relatively small percentage), whereas alcohol devastates a very high percentage of indigenous people. They have simple not had time to adapt evolutionarily to alcohol yet. Likewise, we are still adapting to grasses.

About 10,000 years ago (e.g. 500 generations) some populations invented agriculture, and their descendents began selecting for a genetic adaptation to an agrarian diet such as lower prevalence of celiac disease and related HLA genotypes. However, many populations shifted to agrarian diet more recently, between 1–100 generations ago, which from an evolutionary perspective is a very short time to admit any measurable sign of adaptation. The shorter the time of exposure to wheat and other gliadin-containing grasses, the higher the levels of celiac disease. This is not a concept I've sucked out of my thumb, Richard, but one I've read in a few books, and there are studies backing it up, such as this one on the Irish, who've had less exposure to wheat than the rest of Europe and so have higher levels of celiac disease.

Perspect Biol Med. 2001 Summer;44(3):342-52.

Why is celiac disease so common in Ireland?

Cronin CC, Shanahan F.
Department of Medicine, Mallow General Hospital, Mallow, Cork, Ireland.

Celiac disease (gluten sensitive enteropathy) is a condition affecting the small bowel, characterized by permanent intolerance to dietary gluten, and giving rise to varying degrees of malabsorption and diarrhea. With the advent of sensitive screening tests, the condition is being increasingly diagnosed. Celiac disease is more common in the Irish and in those of Irish descent. Simoons (1978, 1981) hypothesized that the present-day prevalence of celiac disease across Europe is related to the interaction between genetic gradients, largely determined by the advance of agriculture, and historical patterns of cereal ingestion. This essay examines Simoons' hypothesis as it relates to Ireland, reviews the ethnic and genetic mix of those living on the island of Ireland and aspects of Irish dietary history, and considers how these factors may have combined to result in a high frequency of celiac disease.
PMID: 11482004 [PubMed - indexed for MEDLINE]

However, some researchers challenge this theory.

[Richard.N]

This is not a concept I've sucked out of my thumb

Oh - I certainly don't think that. Thanks for explaining why rice is well tolerated though - it was that bit that has never added up for me.

[carld]

10,000 years on an evolutionary scale would be a blink of an eye. So humans have been ingesting this stuff for a what would be....a blink of an eye.

I don't have what I would say is a celiac disease complex. I really believe in my case growing up in a Sicilian household eating pasta and bread every day for years has put me in a situation where it has become an irritant to my CP/CPPS. So, again I think that men who have tension and anxiety, above what is considered normal and healthy may have tension and anxiety as a result of diet...meaning ingesting grasses like wheat. There for genetic disposition/irritant for wheat/gluten= pelvic myoneuropathy and neurogenic inflammation...tension/anxiety disposition+clenching over lifes natural stresses...job,family, life which feeds back to the genetic disposition and you have that vicious cycle =pelvic myoneuropathy...

Just my lament explanation of what I think is happening to me.

[JonP]

Hi Carl,

Good to see things are going well, but I am sure you would agree that long term results are what matters. I've gone through periods up to three or four weeks when I was tempted to post her and say "I'm cured - this is what I did!!!". But I have been all to aware that just as the problem has all but gone away it will come back again.

I guess what I am saying is so far I have not really found any solution that dramatically changes the pattern of waxing and waning, so there is of course a possibility that some or your improvement has been coincidental and that some is a placebo effect (I don't mean any of this in derogatory terms at all I hope you understand).

If anything though, your post has also made me think seriously about trying the same thing, because I have often found a connection between skipping breakfast and having a better day. And of course, there is probably more wheat and gluten in my breakfast than any other meal of the day.

Let's see how you go over the next few months (and I truly hope you are really onto something for your sake and everyone else's).