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Crohn's Disease
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Posted 12/27/2014 1:34 PM (GMT 0)
Not my story, but typical of what is happening out there. I find it inspirational that a mother would do so much to heal her child. The SCD sites I go to are full of these types of real world experiences. That is why I have so little understanding of why some folks here are so negative re diet. Diet might not have worked for them, but to say diet does not work for anyone, is factually wrong.


Hi Folks!




I'm giving a quick update here. I haven't been reading these messages for a number of years because we have simply "miraculously" moved on in life beyond the SCD diet.

My daughter Bridget was deathly ill with Crohn's disease and suffered every single horrible symptom of that terrible disease including a fistula (we were told could NOT be healed without surgery and lots of steroids).

She went from a very strong, happy athletic girl to a bed-ridden feeble skeleton within one month. She missed 7 weeks of school in that 3rd grade. All sorts of doctors and nurses back then told me "Crohn's has nothing to do with food." Some how I knew they were wrong. I was trying lots of different diets but none were making a difference. Thankfully just before she was to go to the hospital for some final and very invasive testing I some how stumbled upon the BTVC web-site. I guess since I had been told by the "professionals" that there was no cure for Crohn's I never Googled that. Once I typed in "cure for Crohn's" that was when I finally found SCD.

Within 3 days of the Intro diet my daughter was back in school!! She was shockingly weak and I had to bring her home for lunch for her special food but each day she got a bit better. She never took the invasive tests.

That was by far the hardest time of my life. By far!!! She was the youngest of my four children. I got tough REALLY tough really fast. Our whole family switched to the SCD diet. I realized if I was going to successfully save my child I was going to have to turn our whole world around and we had to do this as a family. Breaking this news to my kids about our entire diet change was NOT fun. We had had a great life. We loved our SAD food!! But we did it for our child. For one solid year we followed the SCD diet and never intentionally cheated. This online group was a big help and we are forever grateful to you for that. One man on this site gave me the BEST advice ever. "DON'T CHEAT. He said, "you will pay for it and so will she." He was so so right. There were a couple times where just the slightest "illegals" slipped in and we payed dearly. We always went right back to the Intro diet a couple days and then she slowly got better again.

It was an uphill climb but we did it. I did a lot of researching, learning, constant cooking, cleaning and monitoring her health. One thing we did not do a lot of was going to the doctor. As a matter of fact since the day she started the SCD diet 8 years ago my daughter Bridget, now a beautiful extremely healthy 15 year old, has never been back to a doctor for Crohn's. Even here fistula healed on its own in only a month or so. As a matter of fact she rarely even gets a cold these last few years!!

Since changing our diet all four of my children and myself have been cured of asthma, acne, my older daughter with ADHD went off her meds, our allergies have disappeared including my husbands, we rarely if ever have to see a doctor. Not one of us as a family of 6 take medication ever.

I am not going to make this sound easy. This was a very popular 8 year old little girl who was invited to lots of friend's house and lots of birthday parties. That was very very tough. I had to always provide her with special "weird" foods that took lots of preparation. Many many times she would just not have anything. This was heartbreaking to me but I stuck to the diet because I had made her a promise. When she was 8 years old lying on that couch/bed so sick, in pain and with such a looming dismal future I knew this was somehow all related to food. I promised her I was "going to make you the healthiest girl I know." I kept my promise!!

So after her year (13 months) on SCD and symptoms were gone we slowly added in healthy "illegals." Rice was her first big treat. On the rare occasion she did had a flare-up she would go right back on the Intro diet for a couple days. Each year she had fewer and fewer flares. She was always completely fine within a week on the Intro diet. She has not had even a slight flare in over 3 years now.

So now our whole family eats whatever want with these exceptions: NO dairy (she healed much quicker once we took out ALL cheese and every bit of dairy), no gluten (a slight slip once a month might happen with no side-affects). We are very careful about sugar (sugar feeds the bad bacteria). We try to check all labels and choose to sweeten our food with raw honey or maple syrup if we want a sweetener. We eat very minimal processed foods. We eat very little meat other than fish (pulling out so much meat sped up healing too). We eat LOTS of green leafy veg every day. We eat as much raw food as possible. Very little caffeine.

Eating this way has not been easy but 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). They understand all about auto-immune diseases and that they are ALL caused by "leaky-gut" mainly through the SAD "Standard American Diet."

So there you go. Like I mentioned I just don't follow this thread these days. I just pop in now and then to encourage you to believe in the fact that FOOD is ultimately the cure to good health not meds. My email is: ronnoco8@... if you want to message me with any questions. I'm always happy to do what I can to help others to follow our amazing path! We as a family have and are still helping family, friends and friends of friends on a daily basis to heal from all types of ailments because of what we have learned about eating well. As terrible as that experience was so long ago we are so glad we are able to make a difference in the world now through our "Bridget's Story."

Merry Christmas and Happy Holidays!!

Donna
Posted 12/27/2014 2:19 PM (GMT 0)
My sister just put her family on the SCD diet and her son, who has CD, is doing great.

I tried with my son, not so lucky. My son is 22 and just won't commit to the diet unfortunately.
Posted 12/27/2014 5:58 PM (GMT 0)
I went ten years med free and feeling fine.
Little did I know that the disease was progressing internally.
It all came back a 100% stronger with abscesses and fistulas and biologic drugs.
How you feel isn't how you really are.
And as someone with noncureable fistulas, I call bullcrap on this whole story.
Posted 12/28/2014 3:20 PM (GMT 0)
gypsyfp - "And as someone with noncureable fistulas, I call bullcrap on this whole story." So your position is this mother went to a site to tell a lie.. really? ... that is an amazing response. I really have to wonder if you need some help working through some deeper issues.

Brrelaxed - The issue with folks like you is you just make up some random stuff that has nothing to do with the reality of the situation.
"But the tendency to take that success and spread it like gospel to everyone damages someone like me who has to listen to idiots who blame me for having the disease because I can't eat salads. If I tried to eat as many raw foods as this mother is advocating I would end up back in the hospital within a month. " If you knew anything about this diet you would know many folks doing SCD have the same restrictions as you. This inspiring mother was telling her story, not suggesting what you should do. Yes, there are idiots out there, it has nothing to do with the truth of this person's story

"the magical diet cure people who try to sell books and many other things to make money off desperate sick people." You generalize SCD into magical cure people. The creator of the diet never made any money. In fact she dedicated her life to doing research. Her family makes no money, but rather give their time for free. This diet sells nothing and publishes all you need to know on the web. Another example of made up random crap.

I said "Diet might not have worked for them, but to say diet does not work for anyone, is factually wrong." I recognize that diet does not work for everyone. I said so. To imply otherwise is again wrong. Just as wrong as saying diet works for no one.


NCOT - Again random nonsense. I have no comment on the diet you mention. You think that somehow mentioning something completely different and therefore irrelevant has some meaning. It does not. You have mentioned in the past that you wish you tried diet before things got out of control. Instead of saying nothing, or praising a mom for doing so much for her family you spew negativity. To what end? To accomplish what?

It is such a shame that you feel you must attack. You have done so for years and have chased so many good people form this site. Instead of saying nothing you have to spout irrelevant nonsense. My gosh you do not even recognize the heroic efforts of the mom to save her family.

I hope the mods read this thread, and decide what this site is about.
Posted 12/28/2014 3:22 PM (GMT 0)
"3. No posts that attack, insult, flame, defame, or abuse others. Respect other members' opinions regarding treatment decisions. Decisions about health and well-being are highly personal choices. We should respect all points of view. Flaming will not be tolerated."

Why is this not enforced?
Posted 12/28/2014 6:43 PM (GMT 0)
NCOT I am 100% tired of your pronouncements and rudeness. You have pushed so many from this site as folks simply get tired of getting put down by you.
We all get it, what ever you tried or did not try, did not work. However, your lack of success does not qualify you to be rude or to tell others that the only way is your way. In fact given your lack of success doing what you did, I always wonder why you defend the drug path and are so spiteful to any other healing path.

Your behavior has been and is against the rules of the site. You did the same thing to Canada Mark. I should have called you on it then.

3. No posts that attack, insult, flame, defame, or abuse others. Respect other members' opinions regarding treatment decisions. Decisions about health and well-being are highly personal choices. We should respect all points of view. Flaming will not be tolerated."
Posted 12/28/2014 8:52 PM (GMT 0)
Remember we have an ignore button? You should use it.
Posted 12/29/2014 12:57 AM (GMT 0)
It's not like there are only two choices, SCD or "standard American diet." The story dave posted from the mom notes that now everyone in the family eats whatever they want except no dairy or gluten or meat from warm blooded animals. Since they're dairy free i assume they are not eating the SCD yogurt, which is weird since they are posting this story on an SCD website.

Whatever.
Posted 12/29/2014 1:28 AM (GMT 0)
Eat like I do and you can fix yer Chrons' disease!11!!
Posted 12/29/2014 1:09 PM (GMT 0)
i saw the word "cure" several times in that moms story and that's what makes me a little bit angry. i do believe the diet works to a certain degree but i don't believe it is a cure. if it was a cure than nobody would have this disease. i was on the diet for over six months and i can honestly say it kept me almost med free and feeling pretty good most of time. funny thing is out of the blue i had a bowel obstruction and almost had to have surgery. ITS NOT A CURE. DIET IS ONLY ONE PIECE OF THE PUZZLE. each and every person is so different that there is no one diet that works for everyone. I've heard this argument before and one thing I've learned is that it pisses people off. i think its awesome that this girl has found some freakin relief from this horrible disease but just because it works for someone else doesn't mean it will work for me. i think we should all be a little more understanding about what others believe in. what would you do if you met this person face to face? would you tell her to her face that what she's doing is total bullcrap, even though it works for her?
Posted 12/29/2014 1:29 PM (GMT 0)
@Rango - Not "inspirational" enough for dave, I'm afraid. Rewrite your post to erase the bowel obstruction from history and proclaim instead how the SCD made you a happy, healthy and Crohn's-free person. Anything less is unacceptable negativity and you deserve to be reported to the moderators for it, quite frankly.*

*tongue-in-cheek, folks
Posted 12/29/2014 1:37 PM (GMT 0)
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.
Posted 12/29/2014 2:02 PM (GMT 0)
Seems you were the one to start the attacking here, Dave. Why not lead by example by keeping your cool?
(And how about you stop claiming that people are saying 'diets don't work'. That is not what anyone says. You are simply starting a fight when you try to make that false assertion.)
Posted 12/29/2014 2:12 PM (GMT 0)
NCOT - mind, body and spirit are all connected to life. attacking Christians will do nothing for you. i think you should research the story of Job in the bible. Christians face the same problems as everyone else does, we just believe that there's a light at the end of the tunnel.

dave - thanks for replying and i can understand where your coming from and i dont believe that you posted this topic to cause conflict. there are studys that show if you believe in something it increases the chances of it actually working, so in a sense, if you treat something like gospel and have respect for it than maybe it will work.
Posted 12/29/2014 4:14 PM (GMT 0)

Rango16 said...
NCOT - mind, body and spirit are all connected to life. attacking Christians will do nothing for you. i think you should research the story of Job in the bible. Christians face the same problems as everyone else does, we just believe that there's a light at the end of the tunnel.

Should re-read my post if you think I was attacking Christians. My whole point was that SOME (not all) Christians seem to be amazingly miserable and uncharitable considering a) what Jesus preached and b) the eternal life of bliss which supposedly awaits them.

I have no intention of researching the story of Job, although I do know the story roughly anyway.
Posted 12/29/2014 5:51 PM (GMT 0)

dfdavedf said...

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.

Entyvio has been proven in multiple-site double-blind studies with thousands of patients that it works better than placebo. Has SCD? No, not even close. You claimed "tons" of studies, but we all know that's an exaggeration, a big stretch of the truth. Let's say the SCD diet "helps" about 30% of patients. Guess what? So do placebos in controlled studies. Until SCD is provent to be better than placebo, it will be met with rightful skepticism - especially when the claims about it are so absolute.
Posted 3/29/2015 12:37 AM (GMT 0)
I take it this the pissed off argumentative PWC (people with Crohn's) thread!? Or The POAPWC Thread!

I was hoping to see some honest opinions on Entyvio and The BTVC (SCD) - Or a juice version of it. One of these is my next option. It's really hard to do this diet for a lot of us who can not eat fiber and survive on cheese and bread. It is really hard to willingly take drugs like Humira, Remicade, Cimzia, etc. and not feel like I'll be screwing my body over in the long run.

36: Female: NYC

10+ surgeries - Strictures mostly

Been on almost everything

Done almost everything

Post Edited (QBiscuits) : 3/28/2015 6:41:53 PM (GMT-6)

Posted 3/29/2015 3:01 AM (GMT 0)
I think you just post these inflammatory threads to stir the pot honestly. So you can go on and on saying all the same things you've said a million times over in these threads. If people aren't interested, or they don't believe, you posting all the same stuff again won't change that. Stop baiting people, then feeling all "attacked" when you know that's the response you're going to get.

Seriously, if a Mom didn't go the SCD route she's not committed? Does she not love her kids? Pretty insulting to any Mom's having their children take medication, don't you think? Loved how much she used the "cure" word in this. I swear this week alone I've read so many different "natural" ways to control/cure/treat this disease. Most of which was BS, but the people spoke to it like it was absolute fact. It gets old, people get sick of being to told it's what they eat or don't eat. For those that are interested in SCD they can find plenty of information without these repeat threads of baiting arguments (which is really all this story is). This wonder Mom seems to think she's cured Crohn's, allergies, and every other health ailment her whole family had. Come on, you really don't see the difference between posting this and someone saying they are having success with a medication right now?

I'm feeling better then I have in YEARS on Remicade. Just another personal story to throw in there with the "Mom of the year" story you posted. Only in my story I get to eat whatever I want. It's pretty awesome. turn
Posted 3/29/2015 5:00 PM (GMT 0)
I've wondered if the SCD puts those on it at increased risk of oxalate kidney stone formation, given the use of almond flour. I know I'm supposed to keep a watch on my oxalate consumption because of my Crohn's.
Posted 3/30/2015 1:20 PM (GMT 0)
Great article dave.  I love to read when other people have success with this diet like I had.

As I have stated many times here before, I healed  my CD with the SCD diet after being diagnised with CD in the colon and having two massive retal fistulas in 2007.   GI also told me I would never heal my fistulas unless I went on remicade and steroids.  Well, 6 months after starting the diet, both fistulas were gone, and all my other symptons of CD like white mucus , pain in the side, D were also gone.  That was in 2007 and i have not had one symptom since then and I still follow the SCD diet. 

Thank you healingwell for saving my life from many years of pain and suffering with CD  because it was here in 2007, after getting my diagnosis, that I first read about SCD diet, and how it can help some people put this disease into remission without drugs.  It was on this site, and reading posts from peole like dfdavedf , people who are not afraid to come out and talk about such radical treatments as the SCD,  it was people like dfdavedf that I got the insperation to try this diet. 

Dave, no matter how much ridicule you get from people who bad mouth this diet, don't stop telling people about the SCD diet. If it wasn't for people like you , I would never have found this diet and cured myself of this terrible disease. 

Posted 3/31/2015 3:13 AM (GMT 0)
Dave, thanks for speaking out and posting the story...we couldn't see evidence that SCD worked for my daughter - even the person who created the diet said it doesn't work for everyone.

I can't remember when I last posted on this forum, but I do remember that when I mentioned the continued success of my daughter's treatment, I was belittled.

For years, she has been on Pentasa (4g) and LDN (4.5, I think) and continues to show normal labs, zero Crohn's symptoms.

Let the ranting begin...;)
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