Posted 12/29/2014 7:37 AM (GMT -6)
I am responding because I think you were being honest and not just being argumentative. I will try to respond in the same way
"I understand that SCD is not just eating salads, I was on it. I was simply making the point that if you treat something as gospel, others will treat it as such. This is how you end up with others thinking that I caused my crohn's because of bad diet, and if I would just eat "healthy" then it would go away. "
There is no mention of cause. It is like you are saying this post says "I take Entyvio and it works to reduce Crohn's symptoms. Therefore not taking Entyvio cause Crohn's." This was not said or implied in any way.
"if I would just eat "healthy" then it would go away. " There are tons of studies, that show adjusting eating habits has a very high success rate in reducing Crohn's symptoms. I know, they are small, there needs to be more. But one of the purposes of why I posted is to communicate that eating healthy helps many.
Look at this paragraph from the story you posted and tell me why it doesn't treat SCD as gospel:
"the benefits FAR outweigh the difficulties, pain and expense!! I never realized all the little health issues I was experiencing myself. Now that I eat this way I feel so great I am not willing to cheat almost ever. At 48 years old I feel better than I have my entire life! My children all clearly understand the meaning of "leaky gut", bacterial over-growth, candida, pro-biotics (we take diluted Bragg's apple cider vinegar every day).
This is the experience of a family and effort a Mom is making to help her family. It may not be your experience, but it is hers. How can a mom's effort to heal her family be insulting to you? If she had written, "I found Entyvio, it really worked for my family. They went from very sick to healthy. My children understand immune system modulators", would that be insulting? There have been tons of threads here discussing drugs. Some say it works, others say it does not, just like diet. Why are they are not subjected to the same attacks?
"They understand all about auto-immune diseases and that they are ALL caused by "leaky-gut" mainly through the SAD "Standard American Diet."
I too disagree with this statement. I do not find it insulting or threating but rather incorrect. If the response to what I posted was, focused on this one statement, there would be no disagreement.
"Please try to see how offensive this might seem to someone who didn't benefit from diet and has no good options going forward. "
I can see how this might be frustrating or even makes someone sad. "Some thing worked for you but does not work for me.". Life is unfair.. I guess I can see that to some degree, but offensive? Let's try it out. "Entyvio works for me and my family. I have to mine the chemicals, and it is tons of work, but it works great. Thank goodness for Entyvio" However your experience is, Entyvio does not work and you do not have any good options for other drugs moving forward." How is what I said about Entyvio, offensive to you?
"No one should take anything away from this story because it's a random anecdote from a private website about a family that may or may not exist. "
You dismiss this because it is not the Stanford, Mayo Clinic, Rush University studies on SCD. It was not meant to be. It is a story of a mom fighting for her kids. Again lets use Entyvio. I post "Entyvio really works for me and my family". In fact there is a thread right now like this. Why are you not taking time to say the same thing there, where folks are discussing their experience.
"Posting this is treating SCD like gospel. I would never post an anecdote like this about a medication that worked because that would be ridiculous - it can never be confirmed. I tell people what worked or did not work for me based on specific treatments that I went through. "
Your issue is, it is not me, therefore it is invalid. No one here has any idea if what you said is a complete lie. However, the assumption is, why would you lie? What is in it for you to lie? A logical conclusion is, Although there is a small chance he is lying, I choose to believe him, as there is no gain for him and the language he is using rings true. There is no difference with this ladies story.
"Also, I'm sure you understand that more than the inventors and their families are involved in the marketing of the SCD and its sister diets like paleo. I know multiple people who buy book after book about these diets which then in turn tell them to buy this specific brand of nuts or probiotics or yogurt."
There are scams out there. One of the reasons I did not choose Makers is because the supplements that are recommended, are manufactured by the author. I am pretty skeptical also. One of the reasons I choose SCD is there is nothing in it for the author or her family. In fact, the family gives way more than they get. Your argument can be restated as, "Some drugs are expensive and have limited value (Pentasa??), therefore all drugs are bad", makes no sense. The only valid approach is to evaluate each for their individual merits (Pred, Pentasa, Humaria...) (Makers, Low res, Low FodMap, SCD...). That is what I did and suggest to others.
" I understand that certain ideas in SCD have merit for specific conditions, but that has not been the topic of this thread. "
The topic of this thread, which I started, was "Here is a story of a families SCD journey, and what an awesome mom for doing so much for her family". Instead of a positive response like "Gosh, what a great place the world would be if all folks were like this mom, or "this story provides some hope for me, maybe I will look into diet" the topic was hijacked by attacks.
This happens over and over again here. NCOT and others are allowed to attack and make pronouncements. "Diets do not work!!" I will keep saying it over and over again in increasingly rude ways until folks decide that even being here does not make sense. Let's all let her get away with behavior, that is rude and more importantly unsupportive or positive. I no longer believe that saying nothing is good for her, or others here.
I do not go on the Entyvio thread and attack folks there. I have never done it and have no experience. Also even if I had done it, and if it did not work for me, I would not attack the folks that the med is working. Yet that behavior is allowed to exist re diet.
Dx - Crohn's, Diverticulitis, SIBO, Carbohydrate Malabsorption, Slow Small Bowel Motility
Diet - SCD, Low FodMap, Low Carb
Current Drugs - Pentasa (3 x 500), LDN (4.5), Amitriptyline (25),
Past Drugs - Xifaxan (Rifaximin), Prednosone, Entocort, Cipro
Supplements - Vit D and B complex, fish oil and SCD multivitamin