new diet for crohn's working great

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

xcv
New Member


Date Joined Jul 2009
Total Posts : 3
   Posted 7/5/2009 9:04 PM (GMT -7)   
My son was diagnosed this past year with Crohns. He did not know he had Crohn's until he went in for an emergency surgery and then placed on Pentasa daily. . His doctors all said he could eat whatever he wanted unless something specifically bothered him. Since he is home from college, I took him to a nutritionist who looks at diet intake different then most dieticians and very differently than his doctors. She did an extensive amount of blood work looking for sensitivies and pulled quite a few items from his diet at this time. However, I think the biggest benefit is her placing him on a Lactose/cassein free, glueten free, sugar free diet. He is currently off of all rice, wheat, fruit juices, sodas, ice cream, cereals, breads and much more and it seems to be working well. He has a good amount of protein along with vegetables that he is able to eat along with snacks like avocado, almonds, walnuts, hard boiled eggs and more. He starts out his day having a great shake with pea protein, almond breeze beverage, banana, blueberries, almond butter and other goodies. I never thought he would stick to a diet like this but even after only 1 week, he is feeling much healthier. He says he notices an improvement and has had formed stools since going on this diet which he hasn't had in a very long time. For those of you thinking about trying an extreme diet, go for it. Try it for a month and see if you have any benefit.

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 7/5/2009 9:58 PM (GMT -7)   
Yes, but diet makes no difference to Crohn's - the doctors all say so! It sounds very much like the Specific Carbohydrate Diet, even though it was arrived at by testing rather than following the recipe for that diet. If you are interested, see: Pecan Bread for more details.

Dietdad
Regular Member


Date Joined Aug 2005
Total Posts : 122
   Posted 7/5/2009 10:43 PM (GMT -7)   

XCV,

My daughter wound up being diagnosed with Crohn's 6 years ago (after 7 years of problems).  We put her on the Specific Carbohydrate Diet (SCD) which is much like the diet you have followed (are following).  She stayed strictly on the diet for 4 years and finally went off a year ago.  She still eats carefully (limits complex carbs, etc...).  She has been drug free for 4 years and eats normally. 

Of course all of the doctors (Stanford and Lucille Packard Children's Hospital) told us that food has nothing to do with Crohn's and that my daughter would be on drugs for the rest of her life.  I truly feel sorry for all those folks who don't bother experimenting with food and diet.  It is not a panacea for all, but in our case it has essentially cured my daughter.  She is now away at university, living in the dorms and having a normal life.

Sincerely,

Dietdad


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 7/5/2009 11:53 PM (GMT -7)   
That's fantastic Dietdad! It's always nice to hear when this stupid disease doesn't hold a person back :).
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 7/6/2009 3:54 AM (GMT -7)   
that is great news! i'm glad you discovered this early instead of many years down the line having used a ton of meds and questioning their efficacy.

what you described is very similar to the scd and maker's diet. i've found these two to be the best for crohn's. if you can afford it, i'd suggest looking into going organic. there really is a difference. and if your son is feeling really good, it may be worth it to talk to your doc about doing some follow up tests cos there is a possibility he can control symptoms with diet, as i am. meds do have their place but i do not agree with some that you HAVE to be on a maintenance medicine. he's had surgery so a lot of the active disease is out of his system. the best thing he can do for himself is stick to this diet for life and realize it is a lifestyle change. he'll be happier and healthier for it. perhaps you should consider putting your whole family on it too.....
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 7/6/2009 4:25 AM (GMT -7)   
Great! I didn't think us Crhonnies could have walnuts and almonds?
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Protonix,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 7/6/2009 5:59 AM (GMT -7)   
Welcome to the forum, xcv! I agree with the others here. This diet does sound like the Specific Carbohydrate Diet! If you want to read previous discussions on it here, you can put SCD in the forum search. We do like to talk about it! The book, "Breaking the Vicious Cycle" by Elaine Gottschall explains it. How awesome that your nutritionist recommended it, though! Money well spent!!!

Also, if you google SCD you can find their extensive website and links to further recipes and recipe books. There are some great ones that have been written to be compliant with the SCD!!!

Pea protein is a new one on me! idea

Wolfie, I *believe* whether you tolerate certain nuts depends on your individual situation (strictures, severe narrowing, etc.). Some cannot tolerate them in the beginning but are fine with them after the healing process from the diet has begun. At least that's what the book says.

Dietdad, your statement, "Of course all of the doctors (Stanford and Lucille Packard Children's Hospital) told us that food has nothing to do with Crohn's and that my daughter would be on drugs for the rest of her life" reminds me TOTALLY of what we went through, just insert another major Children's Hospital name here in the US. When my son goes off to college in a year it's my hope that he can do exactly what your daughter is now doing!
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.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 7/6/2009 6:00 AM (GMT -7)   
What we eat can play a huge role in how we feel and aggravate already inflamed areas. Diet will not CURE Crohn's nor will it cause a flare. I altered my diet when I self diagnosed at the age of 13. I went on living my life like nothing was wrong and felt that I was "cured" of whatever was wrong with me. But the Crohn's was still in there working its microscopic magic and when the s*&t hit the fan after 10 years of diet only maintenance I ended up with 3 resections in a very short time frame. I will now maintain a very healthy diet AND maintenance drugs in the hope of keeping all those little microscopic baddies at bay. Almost 12 years since my last resection, knock on wood, so far so good.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/6/2009 6:56 AM (GMT -7)   
I agree with Zanne 100%. Your diet will help to control the "symptoms", but will not stop the inflammation that the disease causes. I recommend everyone take some type of maintainence med at all times. Remember there is NO cure for Crohns. JMHO

Hugs
Gail *Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and 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"*

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 7/6/2009 9:36 AM (GMT -7)   
Wolfie40 said...
Great! I didn't think us Crhonnies could have walnuts and almonds?


I eat almond butter or use almond flour to make baked goods. If you can't tolerate whole nuts, those are great alternatives.



As for going without meds once you're in remission, as long as you don't put off your regular colonoscopies, it seems like it would be fine. The colonoscopy would let you know if the disease was sneaking back. I know several people on an SCD forum who have been without meds for years, and their scopes come back clean. As for myself, I'm still taking my meds for now. But who knows what lies in the future.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


lola48
New Member


Date Joined Jul 2009
Total Posts : 6
   Posted 7/6/2009 3:40 PM (GMT -7)   
we have been trying the scd diet since january. this was before my daughter was diagnosed with crohns but with ibs. it worked great the first month. best she has ever felt. after a while she started getting a headache after having her eggs in the morning so switched to rice chex and started eating these peanut nut cranberry bars. four months later - way too many trips to the bathroom. just diangosed with crohns two weeks ago. on flagyl for a month and pentasa for a long while. bowels worse than ever. could rice chex do it? she stopped the bars but is always hungry and loves loves apples and salads. we are going to try no lettuce and raw fruit for a few days. could the flagyl and pentasa make it worse before it gets better? she is also so tired. she has crohn's colitis. any thoughts? she goes to college in less than two months about 6 1/2 hours a way and i am freaking out!!!!

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/6/2009 4:03 PM (GMT -7)   
Diet seems to be more effective for those who do not have a severe case of crohns (especially the constantly bleeding kind). I tried scd and makers diet for several months each (8 on scd and almost 6 on the makers) and ended up having to get some major blood transfusions.

Lola, I would suggest finding "safe foods" for her right now (keep a food journal and try reintroducing foods like you would a baby or someone who just had the stomach flu). The higher fiber and non-gentle foods that are harder to digest might be making her worse. Usually crohns meds can take three months to reach effectiveness.
But also make sure her vitamen levels (such as b-12, d, folic acid, iron, mg, calicum) are ok. 


Forum Co-moderator - Crohn's Disease:_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) : 7/6/2009 5:12:09 PM (GMT-6)


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 7/6/2009 4:13 PM (GMT -7)   
I don't have the package in front of me, but I would guess that rice chex have sugar in their ingredient list - probably the peanut/cran bar too. Peanuts and sugar both are not a good idea and starch generally is to be avoided if there is any gut trouble. Almond butter is better than peanut butter and it is really risky eating any packaged foods that have questionable ingredients in them. The labeling laws allow some latitude in what ingredients are used and some descriptions are just too vague and misleading to let you decide if they're safe. You really need to read - no, study, Elaine Gottschall's book (Breaking the Vicious Cycle) to understand the details. A quick summary can be found in the web link in my post above.

Also, you don't mention using any probiotics. They are a very helpful part of the whole diet approach. If you can't do the homemade yogurt method, you should at least get a good probiotic supplement. Good ones include Culturelle, Align and VSL#3.

lola48
New Member


Date Joined Jul 2009
Total Posts : 6
   Posted 7/6/2009 4:25 PM (GMT -7)   
i have read the book and the rest of her diet is straight from there except for the cereal. she takes multi-vitamins, probiotics, fish oil and calcium. she is lactose intolerant, eats no red meat, no fried foods and has acid reflux so avoids all that. she stopped peanut butter. what is a good breakfast food that makes you feel like you have something in your stomach other than eggs?

i can't thank you enough for responding. this is the first site that actually feels positive and that you are all working towards feeling strong for each other too.

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 7/6/2009 6:11 PM (GMT -7)   
For breakfast, I have yogurt and a beet brownie (made with almond butter). If I'm still hungry, I have a piece of cheese. Yeah, I know, I'm a big eater ;-).

I have to disagree that SCD only helps people who don't have a severe case of crohn's. I've gotten to know several people at the BTVC group, and it seems that most people find the diet when they're incredibly ill and are desperate to find something that will help them. Some people credit it with saving their lives. One person says their mentor had intestines that the GI said looked like "bloody lace," and after healing on the diet (can't remember how long), the GI said he wouldn't believe she was the same person if he hadn't done both colonoscopies himself.

Lola, the rice chex and peanut butter bars are definitely enough to sabotage the diet. You have to be pretty fanatical, and not ingest any illegals except for those that might be in your meds. Some people even get their meds compounded so that they don't contain illegals, but it's expensive, so not an option for a lot of people (like me). If you join the BTVC group at http://health.groups.yahoo.com/group/BTVC-SCD/ you can get advice from people who have been on the diet for many years. You can post your daughter's diet, supplements, and meds and someone will help you work out where a problem might lie.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 7/6/2009 6:26 PM (GMT -7)   
Welcome, lola48!

I was just going to post exactly what spookyhurst posted about breakfast! She beat me to it! I'll only add that the banana nut muffin recipe on the SCD site is REALLY good, and with a little almond butter on it would make a great high-protein breakfast! Also, if she tolerates nuts, consider a handful of walnuts or almonds. Sometimes I chop them up and throw them in the home made yogurt for a granola effect.

The BTVC yahoo group is really, really helpful, as spooky said!

Spooky, would you email me please if you don't mind? I have a recipe question for you! Thank you!
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.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 7/6/2009 8:38 PM (GMT -7)   
Diet can most definitely play a role with CD...if you eat/drink junky then you will most likely exacerbate your CD symptoms, it has been noted that CDers tend to eat junky foods compared to healthy...many have really turned their symptoms around by altering their diets (myself included)...refined sugar is really bad for bacrerial overgrowth and CDers are prone to bacterial overgrowth so there is truth to that.

Not saying that even those that eat completely healthy don't develop CD but eating healthy only can likely curb symptoms...even the CCFC has not ruled out food/diet playing a role in triggering IBD so I don't think anyone else can either.


Many times people have listed their "forbidden foods" that seem to make their symptoms worse and although some of those foods listed are healthy ones, that doesn't rule out the fact that they may still be eating more junkier stuff than healthy making their symptoms worse in general...afterall it's pretty easy to "think" that it's the salad that makes you hurt when it could have just as easily been the cake or candy you ate that day instead.



:)


My bum is broken....there's a big crack down the middle of it! LOL :)


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 7/6/2009 10:36 PM (GMT -7)   
My dad has a tendency of blaming one food, when it's just as likely another. For instance, he said some dinner (can't remember what it was, but it was a healthy entree) my mom cooked made his crohn's worse. I had to remind him that the popcorn and pepsi he ate earlier was just as likely a culprit. Yes, you heard that right. My dad has a stricture worse than me and chances eating popcorn!

EMom, I just made blueberry muffins with almond flour for the first time. Delicious! I couldn't believe that they actually tasted like the real thing (although my mom thought they were less sweet than regular muffin mix). Add a pat of butter, and you have another yummy breakfast item.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/7/2009 5:42 AM (GMT -7)   
I am not saying that altering your diet does not help at all (after all we all pretty much alter our diets with this disease, except spooky's dad, sheesh pepsi and popcorn (candy bars too) would put me in the hospital), but I am saying it seems the maker and scd diets are more effective for those who have certian types mild or moderate disease (and I am defining that by pooping less then 30 times a day and having less then 10 blood transfusions (because I think the constantly bleeding crohns might be a different "type" for lack of a better word), which is I know an unusual way to define it, but I am coming of the opinion that I think there are differnent "kinds or types" of crohns).

I have found that juicing helps me eat a more healthy diet.


Forum Co-moderator - Crohn's Disease:_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) : 7/7/2009 7:04:22 AM (GMT-6)


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 7/7/2009 6:07 AM (GMT -7)   
lola48: rice chex have barley malt in them. barley malt is a gluten containing product. Is it possible your daughter has a gluten sensitivity? if you google celiac disease you might find some info to help fine tune her diet. Blood tests and biopsies are not 100% in predicting who has celiac desiease and who does not. The only real test is to completely avoid gluten and see how it goes. Based on your post, I'm wondering if that's the core issue.

eMom: pea protien is a constituent of a few protein shake bases. It's great and hypoallergenic.

Dietdad: you rock

re: liqiuid diet - ton of articles this month about how it's as effective as drugs, especially in pediatric cases
see: http://www.google.com/search?q=liquid+nutrition+crohn's+children
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Using silver sulfadiazine on Pyoderma . B-12 shots. Juicing veggies!

Post Edited (janicea) : 7/7/2009 7:13:08 AM (GMT-6)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 7/7/2009 7:01 AM (GMT -7)   
Janicea - the member "writer" actually wrote a great book about liquid diets. I know she is not allowed to promote it on here but email her or me for more information about it.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 1:29 PM (GMT -7)
There are a total of 2,734,215 posts in 301,195 threads.
View Active Threads


Who's Online
This forum has 151319 registered members. Please welcome our newest member, Geezer Jock.
417 Guest(s), 15 Registered Member(s) are currently online.  Details
George_, 3HumpedCamel, dismissed, Scaredy Cat, biker90, iho, dbwilco, ChickenArise, catti, JackH, k07, straydog, julymorning, iPoop, LanieG


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer