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medieval_peasant
Regular Member


Date Joined Mar 2009
Total Posts : 52
   Posted 3/12/2010 2:35 PM (GMT -7)   
Has anyone reached clinical remission with this diet while being completley off medications? 

newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 3/12/2010 3:26 PM (GMT -7)   
Hmmmm.....great question, and one I've wondered about as well.  I know on the BTVC yahoo group there are people who have done this diet for a long time, and I think some of them without meds.  Maybe you could try posting the question there?  Please let us know what you find out!
newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
CD diagnosed 11/12/09
Seeing a Naturopath and modifying my diet, so far


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 3/12/2010 3:55 PM (GMT -7)   
There are people on SCD who are in remission and do not take meds. I believe EMom's son is one of them, so hopefully she sees this post. There's a woman named Lucy (who runs an SCD store) who has been in remission for some 16 years (I think she has UC). But like newfoundsun said, ask at BTVC and pecanbread yahoo groups to find more SCDers.

I still take Pentasa, just to be cautious. I also take LDN, just to be even more cautious ;-).
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, Magnesium, Coconut Oil, Garlic Oil, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 3/12/2010 6:31 PM (GMT -7)   
Yes, praise G-d, my son is in remission. Technically, he didn't reach remission while off medication, though. He was on Asacol at the time, but had only been on it about 5 or 6 months when it seemed he was in remission. We started the diet at about the 3 month point, so I think it is likely that the diet played, and still plays a big role. about 8 months later his GI told him he could discontinue the Asacol (he was on it a little over a year). That was nearly two years ago now....wow, how time flies! He continues to follow the diet today. Hope this helps!
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.

Threads discussing diet:
http://www.healingwell.com/community/default.aspx?f=17&m=984588
http://www.healingwell.com/community/default.aspx?f=17&m=1533705
http://www.healingwell.com/community/default.aspx?f=17&p=1&m=1262312


ryan_jordan
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 3/12/2010 11:13 PM (GMT -7)   
I fall into the no drug - remission category.
Here's my story:
After 3 years of bad symptoms I was diagnosed with sever crohn's. My Gi prescribed Prednisone and Remicade. I didn't like the side effect profile and looked into alternatives. I found the SCD quite quickly and went full bore on that, totally fanatical. I saw a lot of improvement, but still had symptoms, so I decided to slowly test foods, adding and subtracting, while keeping a food log. I found the more I eliminated the better my symptoms, after a year testing out food, but mostly staying on the intro diet I found a combination of foods that work. I now eat an incredibly restricted diet, far more restricted than the SCD, but I have no crohn's symptoms. I have been totally symptom free for 6 months. I did use LDN for about 6 months while figuring out what worked and what didn't, but I stopped around when I achieved remission (can't remember, maybe stopped before remission). Regardless, I am 100% convinced that my Crohn's can be managed with diet. I hope that over time, once I'll be able to add more foods. I've been too scared to try because I'm worried my symptoms will come back.

dinkydee
Regular Member


Date Joined May 2009
Total Posts : 201
   Posted 3/13/2010 12:13 AM (GMT -7)   
I have been trying to do this.  I did very well for awhile.  I love the yogurt and chicken soup.  but when I "fall off" I really have a hard time not eating things....I want to give this a try real soon and be better about it.  I do notice a difference when I follow it.  I have a hard time with grains. I just really love food!! But I feel so much better when I eat right according to this diet...
Diagnosed with CD 2006.  Refused to take meds until recently started Colazal. 
 Currently on Prednisone 40mg. Tapering down, now on 20mg.
Colazal 3xday, Antioxidant strips
 Off of the Prednisone!!
I live by faith and not by sight....


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/13/2010 9:55 AM (GMT -7)   
My personal opinion is that diet and meds should be considered as complimentary of eachother. I am concerned with those who do not take meds. Diet can help with the symptoms, but will not stop the disease process. You can have inflammation and damage going on, on a microscopic level and not know it. Thats what happened to me and before I knew it I was obstructed again. Both should be used in conjuction.

This is a chronic and incurable disease and must be treated at all times. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

ryan_jordan
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 3/13/2010 10:12 AM (GMT -7)   
Hi Nanners,
I notice that you always mention your opinion about needing to use drugs since your own personal experience with diet resulted in a surgery. However, I wonder if you have considered the possibility that, even with drugs, you would have wound up needing surgery. If you look at the research on Crohn's outcomes, even using drugs, there is an extremely high likelihood that surgery will be required. Most medical research I have read put the stat at around 80%. I imagine that this will change over time due to the introduction of biologics, but these drugs have serious side effect profiles and some Crohn's patients, such as myself, may be reluctant to subject themselves to the biologics low probability, high consequence risks.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 3/13/2010 11:44 AM (GMT -7)   
Depends on your definition of remission.
 
I suspect many, if not most, posters claiming remission, including in this thread, have not had their claims verified by both blood tests (CRP, ESR) and colonoscopies.
 
The lack of symptoms does not guarantee you are in remission. Good blood test results doesn't necessarily mean you are in remission. Seems only the pillcam (not safe for a lot of Crohn's patients) or colonoscopy can confirm whether you are really in remission.


Peaceandhappiness
Regular Member


Date Joined Mar 2010
Total Posts : 131
   Posted 3/13/2010 2:26 PM (GMT -7)   
ryan_jordan said...
I fall into the no drug - remission category.
Here's my story:
After 3 years of bad symptoms I was diagnosed with sever crohn's. My Gi prescribed Prednisone and Remicade. I didn't like the side effect profile and looked into alternatives. I found the SCD quite quickly and went full bore on that, totally fanatical. I saw a lot of improvement, but still had symptoms, so I decided to slowly test foods, adding and subtracting, while keeping a food log. I found the more I eliminated the better my symptoms, after a year testing out food, but mostly staying on the intro diet I found a combination of foods that work. I now eat an incredibly restricted diet, far more restricted than the SCD, but I have no crohn's symptoms. I have been totally symptom free for 6 months. I did use LDN for about 6 months while figuring out what worked and what didn't, but I stopped around when I achieved remission (can't remember, maybe stopped before remission). Regardless, I am 100% convinced that my Crohn's can be managed with diet. I hope that over time, once I'll be able to add more foods. I've been too scared to try because I'm worried my symptoms will come back.
 
 
This is good news! I'm glad you've been able to control it well w/diet. So far, diet has helped me, I'm scared to go outside of my diet, when I do, I can't quite figure out what is causing the problem (food-wise). But if I eat a very restricted diet, the weight is melting (this is good, positive) and I'll have to go get liquid vitamins, b/c I don't want to lose any nutrition (I'm actually a pretty healthy person who barely gets sick -well colds/sinus/flus or anything).

-Mom of a preschool boy and teenage girl and wife to a wonderful man.
 
Hypothyroid, newly dx'd Crohn's, Gerd. I love to look for natural ways to heal first, conventional ways second and keep my faith.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 3/13/2010 3:04 PM (GMT -7)   
Nanners said...
My personal opinion is that diet and meds should be considered as complimentary of eachother. I am concerned with those who do not take meds. Diet can help with the symptoms, but will not stop the disease process. You can have inflammation and damage going on, on a microscopic level and not know it. Thats what happened to me and before I knew it I was obstructed again. Both should be used in conjuction.

This is a chronic and incurable disease and must be treated at all times. JMHO


I respectfully disagree Nanners. Some people's crohn's will continue to cause inflammation and damage, no matter what they do. Others can achieve long term remission where the disease is inactive. I've personally chatted (on the internet) with people who follow SCD only (no meds) and whose colonoscopy results are perfect. There is even a person who posts here occasionally (I think her real name is Mary?) who said her GI told her he wouldn't even know she had crohn's if he didn't know her history.

I have a friend locally who was in remission (and med free) for 20 years after her surgery. Her colonoscopies throughout the years were all normal. However, her most recent colonoscopy showed a return of some inflammation. If she had been on a special diet and/or on meds, maybe she would have stayed in remission even longer.

IMHO, just make sure you get a colonoscopy every few years (whatever your doctor recommends) and get regular blood work to keep tabs on whether your disease has remained inactive, or whether it's starting to simmer.
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, Magnesium, Coconut Oil, Garlic Oil, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 3/13/2010 10:23 PM (GMT -7)   
 Then a week later they post complaining about sitting in the hospital with obstructions and other issues(been reading these forums for years:). That's my rant...Anyway with my remission I only ask that my poops are controllable and a decent photo of my hose. Been many years like that on SCD. I do A LOT of experimenting with many different variables so not always perfect. No surgery, lots of exercise, and healthy eating. Works for me.

Spooky is right..Keep trying different things and keep getting reamed(scoped) and just go with what works.

Post Edited By Moderator (MMMNAVY) : 3/14/2010 12:11:31 PM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/14/2010 9:44 AM (GMT -7)   
Well I will be interested to see how many people do stay in remission with just diet. I once was blessed with a 20 year remission. While I was busy getting on with my life, the Crohns still was in there doing damage on a microscopic level when I was having inflammation (with no symptoms mind you) that healed and created more scar tissue each time until I finally obstructed completely. Then after that remission I had a GI (now fired) that said since you had surgery you no longer need maintainence meds. I lived on my low residue diet all the time and within 3 years had to have another resection due to another stricture. It also took me years even with my medications to get my Crohns back under control and to get back into remission. So I wish you good luck with your diets, but my personal opinion (I am entitled to it and am always respectful of others opinions) is that both meds and diet are the best combination to keep your Crohns in check. By the way I know of multiple stories just like mine, and they will tell you that they learned their lessons the hard way too,. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/14/2010 11:28 AM (GMT -7)   
Ladies and Gentlemen,
Please respect that decisions about health and well-being are highly personal, individual choices.
The level of proof that I required as someone with a bit of background in forensic path is the autopsy report, but I do find case studies interesting.
So if diet works for you then great! Thank goodness you found what works for you!
But please realize that your method might not work for everyone, because all too often these debates about diet get to the point that they are not healthy and then there is flaming.
We can all only really speak to our own experience with this disease, because it is so very individual.
Take care,
Navy


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 3/14/2010 12:44:24 PM (GMT-6)


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/14/2010 12:59 PM (GMT -7)   
One thing that bothered me when I tried the SCD diet was the people on the yahoo site who've been doing the SCD diet for YEARS and were still flaring and still reluctant to go on meds or take stronger ones. Elaine herself said that you should be able to tell if the diet is going to work for you by 3 months. Seems like some people get locked into the SCD diet thing and start thinking that if you're sick then you must be doing something wrong.

The other thing I've noticed is that the people who've had success with the diet are often very expressive in their promotion of the diet (which I have no problem with), but many people who've tried it without success often don't say anything - perhaps because they themselves think it's their own fault that it didn't work and feel guilty when the subject comes up.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8581
   Posted 3/14/2010 1:43 PM (GMT -7)   
I wish I could be a poster child for going med-free, but alas I'm not the best advert for it. I personally have had nothing except rotten luck with every single medication I've tried, and not just for Crohn's. The only thing left to try, Crohn's-wise, are the biologics and tbh I'm terrified to consider what funky side-effects await me with those.

The only diet I've ever tried was a gluten-free one, which I followed strictly for six weeks. Made no difference at all. I'm not inclined on the basis of that to try the SCD, an even more strict variation of a gluten-free diet.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/14/2010 2:32 PM (GMT -7)   
Please remember that the moderators are trying to keep the forums safe for everybody, and that means that we will sometimes want to interject with an alternative viewpoint in some threads.

I don't think Nanners is being argumentative: she is simply being a moderator. Cut her some slack, ok? She works hard here and is trying hard to make sure that the advice given here at HW is balanced and responsible and helpful for *everybody*.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

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