Would a magazine article mentioning PP be OK?

[Stanz]

Thanks, Ant,

Dee and I are chatting about this. I'm waiting for my globetrotting "writer" to get back home to see if she will pursue this w/me/us.

I've decided that it's probably not a good idea to mention PP and risk a "family" disruption. My dx w/MC is how I found this place, but clearly there are a lot of people out there walking around with un-dx MC. As apparently nearly all bowel disorders are related to food intolerances, I am just shocked at the ignorance of this that I've seen on so many other forums relating to Crohns, IBS, IBD, etc.

Dee, both my naturopath and acupuncturist (both close friends) whenever someone comes to them and has niggling health issues, the first thing they recommend is to give up gluten/wheat for 3 months

Gabes - you are very fortunate to have friends like these - we should all be so lucky.

Connie

[Gabes-Apg]

Ant
i concur........

i think the reason we love this place is for reason 1 - internal unconditional support

i also agree... waking up the world would be fantastic and wouldnt it be totally awesome to have specialists and doctors acknowledging food intolerances as main treatment!

[tex]

As apparently nearly all bowel disorders are related to food intolerances, I am just shocked at the ignorance of this that I've seen on so many other forums relating to Crohns, IBS, IBD, etc.

I'm continually amazed by that, also. Why don't any of those people ever see the connection? Don't they ever think about what is happening? Probably, the main problem is that they totally trust their doctors, which is certainly understandable, and they feel that they can't afford to question anything that he or she says. It's so sad, though, the way this cruel "medical mistake" just goes on and on and on, with no relief in sight.

The main problem with trying to find a support board, is that if you don't know the name of the disease, you have no way to locate help, (IOW, you can't find an appropriate support group, if you don't know the correct key words to search for. That was my problem, early on - I didn't have the foggiest idea what was wrong with me, and I never came across a description of the disease, nor any case studies. I thought I had some especially bad form of celiac disease, and I never even came across the term "microscopic colitis", until after I was finally in remission.

Magazine and newspaper articles are extremely valuable for publicizing the facts connected with poorly-understood diseases. In fact, it was an article in the Wall Street Journal, that alerted me to closely scrutinize celiac sprue. Prior to that, I had discounted the possibility of wheat being the basis of my problems, because I knew that I wasn't allergic to wheat, (I wasn't even aware of the existence of "food intoerances" - another case of a little knowledge being a bad thing. ). The article described the then-new "pill camera", and how it was used to discover the damage to the small intestine, caused by celiac sprue, as a result of gluten-sensitivity. I thought, "what the devil is celiac sprue"? (Yep, I was an ignorant old country boy back in those days - all I knew was that I was sick as a dog, and the doctors at the clinic couldn't find anything wrong with me). Anyway, celiac sprue was the closest match that I had been able to find, for my symptoms, up to that point, so I immediately dropped gluten from my diet. Of course, dropping gluten, didn't resolve my issues, (I had to make many other changes to my diet), but the point is, if I hadn't read that article, I might still be looking.

Viewed in that light - maybe the risk is worth it. The biggest risk on most boards, is that a hacker can take over, and throw out any existing admins. That creates a pretty hopeless situation. That can't happen on this board, because I have safeguards in place to prevent any other admin from modifying my account - IOW, my account cannot be canceled, banned or made inactive. A hacker could still do a lot of damage, but at least he or she couldn't completely hijack the board. And, I have other tools available for salvaging the situation, in a hacking event.

Tex

[Stanz]

Well, Tex, if this article is ever written and published, I would certainly ask her to let me/us approve it. I imagine we have all had the same frustration of researching "symptoms" because of the huge spectrum of illnesses we have the symptoms of and the vast amount of rule-out-diagnosis-diseases that western med has "created", dx us with, and are drugging us to death for. In light of that, this site is invaluable. I surely wouldn't have found this place w/o my dx of MC. It appears that the majority of us were found to be "perfectly healthy" by our MD's for years, we just felt like crap. So then you get depressed and wonder if you're nuts. Looking through my medical records is pretty interesting, as I was never dx with anything REAL until MC, but I pursued everything including Salmonella-caused Reiters Syndrome. Everything was a dead-end except for the heavy metal toxicity and I can assure you that my MD thought even that was BS.

I didn't have internet access when I first began researching my symptoms in '98 and I was pretty focused then on the joint pain issues, which is when I found out that I had lead poisoning. Not only did I get lead from heat stripping my house, I also did a great deal of stained glass work for many years and never even thought to wear a mask.

I've been reading Barbara's talk of her new stained glass piece and have seen some mention of her son's health issues and I wonder if lead could be a contributing factor for him. I took classes from a very well respected stained glass artist and he had major health/pain issues as I recall. I know he was disabled for the last 10 years of his life. There were certainly no warnings given to his students about the dangers of handling lead or breathing in fumes. Even if you work in copper foil you still use lead in the soldering process. The only way to find it is by hair testing or fluoroscopic xray.

Whatever happens with this "article", Tex, you'll be consulted before anything goes to print. I am hardly a pioneer here and couldn't care less about having my name attached to an article on Gluten Sensitivity, I just want the word to get out somehow so that more people can stop being sick and further damaging their digestive system like we all did and I may actually have the media contacts to do something about it. Time to call in some favors, as I have surely done many in the last 22 years.

Connie