While definitely not cancer, I had severe acne back in high school (way, way more than most people). There was a never-ending series of half-baked miracle cures chucked my way by strangers.
In this age of the internet, anyone who has an illness is probably more of an expert on it than most doctors are (save their specialists).
I was diagnosed with an inflammatory bowel disease and everyone would constantly tell me all these foods and supplements that would cure my illness.
I had to constantly tell them there were numerous studies showing that diet had no effect on the illness. But they ignored that because "it cured they're friend".
The Wikipedia article on ulcerative colitis mentions diet as both a possible cause and treatment, which might add to their confusion. Maybe you could clean up and clarify that section with the studies you know about. Maybe distinguish treatments from cures.
"Although dietary modification may reduce the discomfort of a person with the disease, ulcerative colitis is not thought to be caused by dietary factors."
Lets go through the three points listed:
> Lactose intolerance
This is common in people with colitis (I have this).
Not drinking milk makes the lactose intolerance symptoms go away (nasuea/vomitting) that but does not reduce the actual colitis symptoms, just the lactose intolerance symptoms.
> Patients with abdominal cramping or diarrhea should avoid fresh fruit, etc"
This is recommended during bad spouts to reduce the extremity. Eating these foods does not cause or make a colitis flare ups go away. It makes makes one of the symptoms slightly easier to deal with.
> The Specific Carbohydrate Diet has been promoted as helping with the symptoms of various auto-immune and gastrointestinal problems
"Following the death of Dr Haas in 1964, there have been no controlled studies published of the SCD related to IBD." The last study being in 1928.
I've also spoken to two nutritionists and three doctors who have spent their careers studying IBD and they reiterated that food is not a significant factor in treating colitis.
The thing is, with diseases such as yours or others that are hard to find the cause and/or cure/treat you have to become your own doctor. First, realize when people offer up suggestions they are trying to help you. Second, while 3 doctors may have spent their career studying something it doesn't mean that a specific diet or treatment will not help you.
A friend of mine has hives. He's seen a ton of doctors and none of them have any clue what is causing them. Other than having a few hives almost all the time he's perfectly healthy. So he has had to become his own doctor and at least attempt a process of elimination with foods and other things that he comes into contact with on a regular basis. At a minimum he gets some illusion of control and is working a process that may find something.
I agree that they might have been just been trying to help, but it's important accept that you might have limited knowledge of something when giving people advice, especially medical advice.
My doctor has prescribed medication that has done a good job of treating the illness so I haven't had to seek alternative remedies.
I'm actually starting a new startup centered around patients sharing their experience with various treatments.
I'm actually starting a new startup centered around patients sharing their experience with various treatments.
That's a great idea! After helping my friend research I think the most challenging part of what you're doing is getting people who are cured to talk about their experiences. It's the old problem that those that are happy without any problems are not the ones who post all day long :)
I understand that you know a lot about your condition, but weren't you discussing the layman's perception of it? Maybe I misunderstood.
What I'm saying is the first thing someone is going to do when he wants to learn about ulcerative colitis is visit the Wikipedia article. I'm offering this as a reason for the misconceptions, not as refutation of what you claim to be true.
The issue was the arrogance it took to tell someone they know of a cure from a 3rd party story, then insisting they are right without even having a basic understanding of the illness.
A basic google search would show is no known "cure" for colitis. Doctors don't even know much about what causes it.
It's fine if they misunderstood a wikipedia article, but that level of research wasn't even done.
Anecdote is the trump card of the unsceptical. It's a good way of learning not to eat that poison berry, but it's much less useful in the modern world.
In this age of the internet, anyone who has an illness is probably more of an expert on it than most doctors are (save their specialists).