[getitup]

Hi. I'm an otherwise healthy 47 year old, very active (hard 1 hour workout at the gym 6 days a week), not overweight, super-healthy diet, normal testosterone. I do have some strange auto-immune type symptoms that include dry eye, dry mouth and many allergies (food and environment) that nobody can figure out.

Possible lumbar problems (unstable disc, occasional numbness in legs from old sports injuries) and somewhat higher than ideal cholesterol/220 and lipid profile, but nothing dramatic or dangerous. I guess it's possible that years of that level of cholesterol could be causing some problem. Used to get angina, but now all the tests show a perfect heart. Also, I used an inclined exercise bike for years, but nothing as bad as a normal 10 speed as far as pressing on the penile nerves or whatever.

Actually I've had some ED problem since my 20s - with maintaining an erection and having full sensation even though I could have sex 5 times a day then no problem as long as I stayed in constant motion (I remember even at that age not being able to feel a thing through condoms - numbness and reduced sensation). Starting maybe 7 or 8 years ago, I started to have a lot of difficulty in achieving an erection, much less maintaining. Up until about a year ago, viagra, etc. took care of it. Now 100mg probably accomplishes a 50% E and I really hate the side effects. Vacuum pump hurts and only achieves maybe a 30% E which immediately deflates.

I do not want to do the injections or suppositories. I'll just become a monk or something if that is my last resort. Been to many doctors with no real answers. The local urologist did many tests and had no idea, only that it might have something to do with the lumbar. I've stopped dating and become somewhat of a recluse because of this even though I'd very much like to get married and have kids. This is ruining my life. Help!

[DrQuantum]

The fact that you are posting on this forum suggests to me that you have spent some time on the internet searching for answers. You have apparently found, like most of the rest of us, that while there are thousands of websites with articles on ED, the underlying info is pretty much all the same and addresses only the very few main, identifiable causes of ED. Based on this forum alone, there are thousands of men with situations like yours where the Doctors are stumped and there are no resources for them to fall back on to solve the problems. After all, Doctors are not researchers - they are deliverers of treatments that someone else has devised. If there is nothing in the book for your situation, then the Doctor has nowhere to go.

I have looked at sources for clinical trials for ED and while there are many, they all seem to be chasing the same few targets. I have not seen any that address your condition or mine. So, we are left to do our own research. Hopefully, those who find something will come back and post it here for the rest of us. It does not appear that any Urologists monitor this forum, or at least none that are willing to throw anything into the mix here.

Good luck on your search and hopefully you won't need to become a monk.

[mannu]

Erectile Dysfunction is a very common problem which most men face in life by reason like high blood pressure diabetes, stress, physical injuries, certain medication, smoking and alcohol consumption. You know about the Viagra, is a drug for treatment of Erectile Dysfunction. [moderator note: website address has been removed]

[smallone]

Wow your story sounds like I wrote it. I have had good luck with all the ED drugs especially Levitra until recently. I could take 10 mg and get an erection but now none of them seem to be working-not even the daily Cialis. If I do get an erection, is easily deflates and leaves everyone disappointed. I too have never had any sensitivity and the feeling of numbness. I still do the pump when time permits but that too quickly deflates. Yes, thinking of becoming a Monk-am already a recluse even though I have met a great guy and our relationship is part time so I am getting by. I do use hormone replacement cream and it does help me with the energy etc but does nothing for the ED.

[merrilee]

Have you changed your diet for the allergies?

www.enterolab.com offers tests for gluten,casein, soy, egg and yeast. Avoiding the foods he is intolerant of has helped my spouse a great deal. At one point the ED meds were not working very well, but now they do work AND he doesn't use them all the time - definite improvement.

He has had blood tests that confirm the milk and egg results, but not the gluten.

Gluten and casein can aggravate autoimmune conditions, so it may help with that as well.

If autoimmune conditions run in your family, you may want to be tested for celiac as opposed to just gluten intolerance.

[getitup]

Thanks Merrilee. I didn't realize food sensitivities and the like could aggravate ED, but I've suffered with allergies and strange autoimmune symptoms nobody can figure out for about 20 years. That's interesting. Been checked for allergies several times over the years and I'm allergic to many things and many foods. The local allergists really try to gouge you on the billing and give you little advice to fix anything - worse than other doctors - and I won't go back. Negative for celiac but I'm still suspicious - wheat really bugs me. Nobody else in my family, just me although my daughter gets hives at times. I already avoid wheat and dairy and try to limit soy, since they seem to bother me.

I looked into some of the food intolerance tests, but they are very expensive and insurance won't cover. I read on other forums that they don't help that much. The site you suggest for the stool based tests wants $369 just for the gluten test! Some other testers that offer comprehensive tests (blood based - you have to use a doctor to draw the blood) covering a wide range of foods want up to $1000. If I could find these tests for less I would give it a try as I really need to figure this out before it kills me, but I'm already avoiding just about all foods - not sure what else I could cut out.

[merrilee]

Hi,

I hear you on the tests - they are expensive. My spouse did not want to change his diet without them, that's why I mentioned them. You seem smarter/more flexible, don't need a test to make a change! But he didn't get better until the gluten was 100% gone and he improved further when the casein was gone. How do you feel about going 100%, not just avoiding, and giving this a trial?

We just took it to the "paleo" diet and ate really low carb to boot, it was so much easier. That takes all the processed foods out of the equation with the worries of parts per million, etc. He also tried some glutamine for "gut healing." This seemed to help and he noticed further improvement when he ditched soy. He's currently testing eggs. (For all of these things he has positive tests.)

My husband broke out in hives during his gluten challenge before his negative biopsy, FWIW.

The minute we went on the low carb/paleo type diet he said he "felt better" but he hadn't been compaining of feeling poorly before. It really seems to suit him. Basically, he eats steak salads or grilled fish and green veg with bacon. Some fruit or some coconut milk ice cream. I make sure he gets plenty of fat. He's not gaining any weight and he's got plenty of muscle.

I encourage you to give the GF/CD diet a trial, particularly if you take ED meds. (Because of the new research showing the ED meds lower the blood/brain barrier in rats. At least avoid gluten on the days you take the meds - just in case! There is published research linking gluten to neurological issues.)

There's a tremendous amount of support on the various celiac/gluten forums and you can probably find one that feels like a good fit for you. Another forum that can support you is the Bernstein Diabetes forum - sounds odd - but there are people there eating low carb, so they are avoiding gluten by default, some have ED and some have food intolerances. Very supportive group of people interested in issues like nerve repair and I've read that all forms of ED indicate some level of nerve damage. If you're interested I dig up the link to that paper.

My husband saw big improvements after about 6 weeks each time he made a change. The hardest change for him to implement was dairy - big withdrawal symptoms.

I do not have any published research I can point you too that says this is likely to work. There's very little research on non celiac gluten sensitivity and even less on how it interacts with ED. But the trial is not expensive - there's a "low cost low carb" thread on the Bernstein forum - and well worth your time. Might be worthwhile for your daughter too.

Healthier without Wheat, a new book by Dr. Wangen, would be worth a read. Best I've seen so far on the non-celiac gluten sensitivity issues.

Hope to discuss this futher with you, but regardless, best wishes for good health,
Merrilee

[merrilee]

Here is the paper on "The neuropathy of erectile dysfunction.
http://www.nature.com/ijir/journal/v14/n6/full/3900907a.html

I saw another article discussing the blood-brain barrier research. It explained things much more clearly - that there is a blood-brain barrier and a separate blood-brain tumor barrier:

"Although the normal blood-brain barrier, which regulates access to the brain from the bloodstream, shares many characteristics with the blood-brain tumor barrier, the signaling mechanism blocked by PDE5 inhibitors is unique to the blood-brain tumor barrier. This allows the PDE5 inhibitors to selectively increase drug transport to malignant brain tumors without affecting normal brain tissue"

[getitup]

Thanks Merrilee, very interesting about he neuropothy. Now what the heck to do about it???

I've been checked for MS and that's a no. It might have something to do with an unstable disk in my lumbar but the symptoms aren't bad enough to justify surgery (been to several surgeons and they look at the MRIs and shake their heads like why am I complaining). Neck is also bad - arm/hand numbness and reduced signals to my arms (nerve conduction tests) - but I think at that location the lower body nerves are deeply encased in the chord and protected. It may be from many hours of exercise biking at the gym pressing on that nerve over years, but not sure that can be treated (plus don't think it explains the frequently numb legs/feet). I am very lean and in great shape so obesity isn't something I can attack to reduce the symptoms...

One extra problem I have which allows me to ignore this problem is I have no wife/girlfriend. It's difficult enough to find one when everything works properly! I'm in an area where everybody is very superficial...

Finally responding to your earlier post (thought I did, but don't see it): I have been largely off wheat and dairy for a long time. Helps some with all the subtle inflammation and autoimmune symptoms but not the ED.

Thanks

[merrilee]

I agree the lumbar disk could be a factor because our urologist said something similar about DH’s spinal bifida occulta, which caused him problems with bedwetting when he was a young boy.

If you want to rule out a cardio aspect to the ED, you can check your heart health with a scan for calcium deposits. See www.heartscanblog.com for details. Insurance probably won’t pay, but they sometimes run $75 specials.


I know of 2 groups of people who’ve successfully dealt with neuropathy –
Bernstein forum and gluten free. There could be more, that’s just who I know of.

When’s the last time you had your blood sugar checked? What was your fasting #?
BTW, you can have normal fasting #’s for years and still have problems with the post prandial #’s. see www.bloodsugar101.com for details, particularly http://www.phlaunt.com/diabetes/14045678.php
My spouse was going over 140 after meals, not by much, but who knows for how long?

DH’s fasting # was very mildly elevated and this went away when he went off gluten, but not until he went off 100%.


The gluten group – there are folks on several of the gluten forums that report improvements in neuropathy with diet changes. Many of them have eliminated more foods than just gluten. Some of them prefer to have tests done because it helps them stay on track. (DH would never have considered giving up dairy without a test although he didn’t mind trying gluten without one.) The gluten folks with neuro issues tend to say that they need to be extremely strict with the diet and avoid all forms of cross contamination. They also say that progess is slow. Bernstein says it takes about 2000 days of normal blood sugars to fix diabetic neuropathy.

Here’s some info about gluten’s role in neurological issues - http://jccglutenfree.googlepages.com/peripheralneuropathy


Both groups feel various supplements can help PN.

One is ALA. However, I can NOT recommend this one to YOU yet. Bloodsugar101 warns that there’s some research in Japan showing it can make some folks more susceptible to T1/LADA diabetes, the autoimmune type. I think this is one of the celiac genes, the DQ8, which DH has. Given your autoimmune issues, unless you get your genes tested (I would not recommend enterolab for this, BTW), wait on the ALA.
(BTW, when you mention autoimmune symptoms is that the dry eye/mouth, or something else?)

Another is Benfothiamine.

I’ve seen L-carnitine mentioned, but I don’t know much about this one.


There are other supplements, but are you absorbing them? My husband wasn’t according to a Spectracell test. He may not have celiac, but the gluten (and for him, soy and casein) was causing a lot of problems. He’s continued to improve since you and I have been corresponding.



I encourage you to re-think the place of wheat and dairy in your diet. You need to be 100% free of these things to see a difference. When were you tested last? High risk genetic groups are re-tested periodically. I should reiterate though that all my husband's blood tests for gluten were negative. Only the enterolab test was positive.
More info here (Huge site, sorry for the info over load) http://www.glutensensitivity.net/


You will need support on such a diet, there are lots of fiddly gotcha’s!
http://glutenfreeandbeyond.org/forum/index.php is pretty good, a bit speculative, which you may not like. Also, that group is directly searchable by google – not as private.
This one is more private http://forums.glutenfree.com/

Both of these forums are small.

Celiac.com is much larger and is great for general diet help and support.
If you want to talk about PN and less about gluten, you might like the Braintalk forum. There’s a second forum that’s similar, called neurotalk, also another called Healingwell. Each of these has a a fairly sophisticated readership.
Here’s the PN section for Braintalk http://brain.hastypastry.net/forums/forumdisplay.php?f=219

I think you should focus on the PN, not the ED for now. What is causing the PN?
Do you have an official DX or is it “idiopathic”?

I don’t hang out on Braintalk, neurotalk or Healingwell, but do check in on the others. Willing to discuss this further anywhere and wish you all the best.