Neue01's Case

[ramana]

Well I have trigger points for about 2 months on the anterior levator ani. No relief so far. Others on the external sphincter suddenly disappeared after being there for 4 months.

[neue01]

So what's the deal with gluten? I've never had issues with it before. I was diagnosed with prostatitis back in 2001 and given a few antibiotics ending with Cipro for 2 weeks. My prostate got better for a while but then I got a change in the pain I was feeling. After this I started having extreme reactions to certain foods.

For many years I took this as a fungal infection and treated it accordingly. I avoided starch and sugar and took anti-fungals supplemented with probiotics. My condition got better through the years and the anti-fungals would cause massive flare-ups when taken in large doses and followed with the strict elimination diet. This is what people claim is a die-off reaction. Essentially your body getting worse in dealing with all the dead yeast cells and toxins released before getting better. Then a week later I would get better. If I cheated on the diet I would get flare-ups too. It was a slow climb. The whole time I believed in total contradiction to my doctors that I had a yeast infection.

As of 2 months ago I have adopted the Stanford/Wise-Anderson Protocol and tried to ditch the whole yeast idea. I went to see Dr. Weiss here in SF and he located a bunch of trigger points and some really tight muscles. As I have begun massaging and treating them my prostate condition has gotten better and better. But then I will attempt to eat a piece of bread or pizza and my symptoms will creep back an hour afterwards. Granted not as bad as it used to. I can eat oatmeal with brown sugar and do not seem to have a reaction. I'm still experimenting with the introduction of sugar to see if I can handle it on it's own. Coffee is a total killer for me but tea with caffeine seems to be fine. I can't tell if this is yeast or gluten. There are strong symptoms pointing in both directions these days.

If it is a gluten issue and not yeast why has it come on all of a sudden in my adulthood after taking Cipro? What's the story with the whole gluten thing?

[carld]

Very complex and difficult question. I know Webslave has a vast knowledge of this and I'm sure He can shed some light.

For me I think that over time I have eaten so much wheat and gluten that it has become an irritant or trigger for me if I consume regular quantities of it.

Humans were not built to digest many grasses. Perhaps in your case, over time and with added stress, gluten along with other foods simply irritates the nerves further, feeding your pelvic myoneuropathy/neurogenic inflammation. I think you may just have to stay away from the things that irritate you along with keeping your pelvic floor muscles healthy , relaxed and stretched. Just my thoughts here. The great news is you know what has helped and what causes symptoms so that is very promising for your total recovery.

Regards...

[garyholc]

I've decided today to try and eliminate wheat and gluten from my diet. Just been to the shop now to get some new things to put in my food cupboards and I am going to try to "like" olives since hearing how good olive oil is supposed to be!

[Clay]

I'm sure I ate gluten every day of my life for 60+ years. Then one day I got some diarrhea, and then I lost 40 pounds because it wouldn't stop.

It's really hard to believe that I was accruing slow damage for 60 years. My best guess is a virus that affected my epigenome. Genetic tests confirm I have some genes that can predispose to gluten sensitivity, and I think they were turned on recently. Epigenome is such a new concept, it's easy to make up theories about it!

Identical twins' genes do diverge over time as they are individually exposed to the environment, or at least the expression of their genes changes. We are not who we were when we were born.

[webslave]

Here is a fact: humans can and do develop allergies and sensitivities during life. You are not born with all immune reactions to the outside world in place and active. You are born with a genetic predisposition to being atopic and have food intolerances. Cipro, a horrible antibiotic, was probably a trigger for you.

Oats are tolerated by some people who cannot tolerate gluten-containing foods. Oats do not contain gluten, but oats have a high likelihood of causing problems to people who have problems with grasses. I cannot eat oats, for instance. I can tolerate white rice, but not wild rice. The Coeliac Society advise against the inclusion of oats in a gluten-free diet.

[kevin]

I view gluten intolerance in the same light as CPPS/IC, IBS, and any of the other "related conditions": you can have a hidden predisposition to it, and then some triggering event -- injury/infection/illness/stress -- will unmask it.

[neue01]

Thought this was interesting. What if the antibiotics most of us go on initially give us a temporary yeast imbalance that triggers autoimmune disorders such as gluten intolerance?

http://www.drhoffman.com/page.cfm/616

[webslave]

It's possible. This is an area of medicine where many things are still unknown. In my case, I've had problems with various foods, especially wheat, ever since I can remember, so I suspect a genetic factor. However, I was given antibiotics as a child ...

[neue01]

What is the deal with this condition? I'm getting so frustrated... I have some TP's that still will not go away after PT for 1.5 months now. I have rid myself of a few already but I have 2 left and they are my worst symptom. One to the right of my prostate and one just above my prostate. These remaining 2 TP's contribute to extreme discomfort (no pain unless touched) and lack of libido and bouts of ED. It's really driving me bonkers at the moment. I would give anything to get through this garbage!!! the worst part is my physical therapist is not working them hard enough that they register in sessions with him. He thinks I'm better now but I go home and find them and the pain sends me up the wall.

How are other people doing and does anyone have any words of wisdom in this time of frustration?

[carld]

Try to really focus on the relaxation and keeping your anxiety under control.

If you have not already tried....self internal work is very empowering once you learn to do this your self. Hot baths after PT can help calm those muscles and nerves down.

Consider low dosage Elavil 10mg or cut in half to 5mg to start with. This condition takes lots of effort, time and work in a relaxed way both mentally and physically.

After having burning fire in my perineum for months 24 hours a day 7 days a week and being in the condition I'm in now 2 years after onset, there is a light at the end of the tunnel. You have to work at it though and gage your improvements by months and not days and weeks. Hope this helps...


Regards, Carl...

[garyholc]

Who is your PT?

[neue01]

Jerome Weiss MD in San Francisco.

[chath]

From what I've learned your not likely to get better in a month and a half.

I've been doing to SP for 6 months now and would say that my symptoms are 50 to 70% better most of the time. Still frustrating though. Keep up the treatment. I took Dr. Wise 2 years to get better. Imagine that.

[neue01]

Are there any muscles above the prostate? I have extreme tenderness and huge pain referral if I poke the area above my prostate about an inch or more upward. It is tender at times even right up to the top of the prostate itself. My PT seems to claim that there are no muscles up there and that it's just my bladder. But I have no bladder symptoms anymore and have not had any for years. Palpitating this area sends pain through my abdominals into the tip of my penis and down into my perineum and right testicle at times. They ache for some time after messing with this area. Any ideas?