Cernilton & Gluten Free + Possible link with Diverticuli

[easytiger]

Hi,

I've been using this site for several months now, however this is the first time I feel I have anything useful to add. A detailed background is available in my only previous post here. A brief summary is:

- I started getting problems after a drinking session (predominately lager) back in December 2003. These were mainly not knowing when to pee, frequent voiding at night and a pain between my anus and balls.
- After a few days avoiding alcohol the symptoms would disappear
- Through December and January a decreasing amount of alcohol would bring on the problems and they would last longer
- Finally in February the pain was constant and avoidance of alcohol would not solve it
- After visiting my GP I was put on trimethoprim for 4 weeks. Three weeks in all symptoms are gone.
- One week after the course finishes the pain is back with a vengeance
- Back to the GP who refers me to a Urologist and prescribes Cipro for 2 weeks

Update:

- Following a consultation with the Urologist (Harley St., London) I was told that I didn't have prostatitis but most likely inflammation of the bowel. I was prescribed Voltarol suppositories and Cernilton (a special version he imports from Germany).

- A week on Cernilton and maintaining a strict diet (no sugar, wheat, yeast, aspartame), most of the pain was gone (although the suppositories made no difference), and as suggested by the Uro I started introducing sugar, wheat, yeast and coffee. Within 5 days I started feeling muscle spasms in my pelvic floor, which seemed to be worst 2-3 hours after eating. Once these spasms affected my vision (!).

- I then went back to my strict diet (basically jacket potato, avocado, vegetables, grilled chicken) and for three days cut out all carbs. This reduced the muscle spasms to a level that using pelvis floor exercises I was able to just about control it.

- I then tried Valerian to relax my muscles however with 5 days this caused a severe relapse. Stopping this made things better however I still had the muscle spasms. I then started calcium (with glucosamine) and magnesium (both 100% RDA). Initially this made an improvement and so felt able to try chocolate (two small bars for two days). On the third day I was badly affected and so stopped the chocolate. The following day I stopped the calcium (due to the glucosmine) and this made an improvement again.

- I was then back to the Uro for a follow-up and he decided that although the pain was in the pelvic region it must be being caused by something further up, so he referred me to a GastroEnterologist.

GastroEnterologist:

- Following my first appointment, he mentioned possible Gluten intolerance and organised blood test, Ultrasound scan, Colonoscopy (I had lost 1.5 stone in three months and so he was organised these urgently).
- Results of the blood test showed low iron, even though I take 100% RDA vitamin tablets, Ultrasound was clear.
- I spent three weeks Gluten free and within 1 week of complete avoidance felt so much better. This also meant I could reintroduce sugar and many other things (curry and red wine) back into my diet.
- Colonoscopy did not find any evidence of Crohn's but did find a number of Diverticulum. This meant that my Gastroenterologist suspects Diverticulitis (inflamation around pockets in the bowel wall) could be causing the knock on effects (he did also say it could be unrelated).
- So he organises a CT scan.

So that's where I'm at. I have an appointment on 6th July to find out the results of the CT scan and to hear what's next.

What I have learnt is that whilst I thankfully don't have prostatitis, I do have symptoms very close to it. I (and quite a few people posting on this forum) respond well to antibiotics whilst on them but regress quite quickly when off the abx. I feel Cernilton has done some good but the main difference is going gluten free.

Now here's the kick in the tail, do know what abx are prescribed for the diverticulitis, Cipro! Yes the abx that gets prescribed for prostatitis is the most effective for diverticulitis. Now because I was on it for two weeks a few months back the Gastro also prescribed 5 days of Metronidazole to try and hit it.

So, I'll get back with the results of the CT scan and who knows, there may be a clue to what the problem is.

[webslave]

Some comments:

Better on antibiotics, worse off, is a typical picture and does not mean infection.

I had bowel surgery too, for a suspected appendix as cause of my pelvic pain, and no diverticulae were found despite them removing my insides to check. Don't pin any hope on diverticulae as cause.

Reactivity to foods, drinks and chemicals as you describe, is the case for a distinct percentage of pelvic pain patients. I am one of them. For me, wheat is absolutely verboten.

Good luck with the CT scan, but from my experience and those of others, I would say all these imaging tests are useless. I had gallium scans, barium enemas, numerous X--rays and ultrasounds, cystoscopies etc -- useless.

[easytiger]

Webslave,

I too share your scepticism of the diverticulitis being the cause and don't expect the CT scan to show anything up. It really is just the next step on the list of things to check. The Gastro has said it's an endoscopy next (which I think is closer to the problem).

My experiences to date lead me to think that I am suffering from problems digesting gluten. I think that it is in the digestive process that my body has a reaction that causes the pelvic pain. The apparent success of the antibiotics is then nothing to do with reducing inflamation, but everything to do with the way they affect the digestive process (they caused excessive wind and rumbly tummy for me). This is why after a while changing how I digested food they stopped whatever reaction was happening. Of course once the antibiotics are removed the stomach returns to its previous way of digesting food and so the pain returns - hence abx are not a long term answer just a clue.

The question is then why can I not digest gluten. I have searched for an answer to this and ended up with the same dead end that celiacs find - we just don't know. Once modern medicine fails me I think I will look at the whole stomach culture area and see if a combination of gluten free with friendly bacteria etc can achieve results. I must admit though that this will mainly be so that I can feel that I am doing something and not just accepting it!

The one thing I have to be grateful for is that I seemed to have found a way of controlling this horrible pain, and who knows, if I can stay gluten free for months/years one day my body may be able to digest it again.

[webslave]

Why antibiotics sometimes help when there is no infection:
https://ucpps.men/antibiotics-are-anti-inflammatory-agents

Wheat is my major trigger, but I am not a celiac (as per intestinal biopsy test, not tried blood test yet).