Has anyone been on any food diets that work?

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KristiniaLeAnna
New Member


Date Joined Apr 2010
Total Posts : 5
   Posted 4/7/2010 6:53 AM (GMT -7)   
G-Free? No Carbs, etc?
 
I'm at my wits ends, I don't know if anything works better than others.
 
I'm going to my new Doc on the 15th, the last GI was a jerk and wanted to overmedicate me even though I could barely function.
 
 

Post Edited By Moderator (Nanners) : 4/7/2010 7:56:44 AM (GMT-6)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/7/2010 6:57 AM (GMT -7)   
well there have been some that have success with SCD, Makers, Low residue, so it is pretty individual.

But I have a question about your symptoms? What are they? What medications have you been on?
Talk to me about what is going on with your disease...
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…


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/7/2010 6:58 AM (GMT -7)   
I personally follow a low residue diet all the time. I am currently in remission and find that this agrees with me the best. Diet is very individual for most of us, so we have to find what works best for us. Whatever you do you should consider diet and medications for Crohns as complimentary of eachother and use both at the same time. Good luck!
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"*

aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 4/7/2010 7:02 AM (GMT -7)   
Yes over meding can create big problems. Everyone is different keep trying different combos, you will find a good mix.
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.


comedybob
Regular Member


Date Joined Jan 2010
Total Posts : 241
   Posted 4/7/2010 7:02 AM (GMT -7)   

hi KristiniaLeAnna

my 13 yr old son has been on the SCD for almost two months. he has gained 5 pounds and feels generally good. going through a bump right now. he has been off all meds since 2008 and has done better than he ever did on immuran. the quickest results came from a soup, - carrots, celery, turkey breast, zuchinni, salt, ginger, garlic, coconut oil. cook all day, then puree.


bob b
13 year old son diagnosed at 9,
one month of pred at beginning 
2 years of immuran ineffective
SCD seems to be helping(less pain gained 3 pounds in three weeks)


orngie
Regular Member


Date Joined Feb 2009
Total Posts : 161
   Posted 4/7/2010 10:57 AM (GMT -7)   
I think it depends on the individual quirks of Crohn's. The only thing that seems to bother me is breads like bagels and pizza dough. Anything that may get in there and swell up or get stuck in the narrow spots of my small intestines can cause problems for me.

It just depends on how your Crohn's affects you.

KristiniaLeAnna
New Member


Date Joined Apr 2010
Total Posts : 5
   Posted 4/7/2010 11:08 AM (GMT -7)   
Yeah, I'm going to ask my new Doc on the 15th to test me for Celiac Disease.. because I guess I'm starting to hear more and more about patients having Celiac and Crohn's...
 
Lately I've been having it rough.. the past month or so I've had visible blood in my stool. My last Doc had me on 6mp and after 3 days of re-taking this (hadn't taken it since I was 16) I started feeling like death.. so I basically stopped taking it... I was on Humira last year but I came in contact with a bug/spider and was bit, my whole hand swelled up so I went to my Primary about it, it took 6 antibiotics to fix this! Then came the respiratory infection, joint pain, and high fevers all at once while on Humira.. so I stopped taking it.. I told my Doc my symptoms and he had wanted me to continue on the Humira (when it advises against taking if you have any sort of respiratory infection, high fevers, etc..)...
 
I switched Docs just recently because my Doctor was always trying to medicate.. not solve anything.. He did a colonoscopy and CAT scan last year and refused to show me my results.. he said I had a narrowing in two different parts of my small intestine.. I requested Remicade.. he was against it.. something about he didn't like infusing anyone with mice genes.. Remicade had worked before I accidentally found out I Needed surgery back when I was first diagnosed.. another Doc didn't think to put me back on Remicade (while on Remicade I had "NO" symptoms at all) it was like a miracle..
 
Anyone else feel like a lab rat at times? Do your Docs listen to you? I'm in RI, the specialist I'm going to next week is in Mass... I'm hoping he can hear me out and listen.. I've had Crohns since I was 16, I'll be 27 this year.. I had surgery in 2000 to remove 16 inches of small intestine due to a blockage.. Lord it was hard getting my Pediatric GI to realize I was really sick.. I demanded a CAT scan after all the barium xrays and colonoscopies that didn't show him I had a blockage.. I just always knew something was wrong.. if I didn't push for a CAT scan I'd have been dead back then.
 
I can't tell lately if diet is affecting me.. I don't remember having such an issue going to the bathroom before.. I'm going after everything I drink or eat and I'm seeing bouts of blood, then floaties, then just horrible crap.. No vomiting tho.. I'm on a prebiotic (that one by Phillips) and that's it.. I'm afraid to take the drugs anymore...I also have a hard time absorbing any pills hence the reason I'd like to try Remicade again...
 
Note I've been on Pred, Sulfasalazine, 6 mp, Pentasa, Asacol, Humira, Flagyl, and Cipro... didn't ever seem to fix anything..
 
Smiles,
K

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 4/7/2010 4:36 PM (GMT -7)   
I'm in Mass. I assume you are going to one of the hospitals in Boston. I see someone at Beth Israel once a year as a consult just to make sure things are going well, and my local GI trained there so the two doctors work well together. I'm north of the city almost to NH though so I have no idea about doctors closer to RI.

As far as diet, I agree with Nanners. I keep to a low residue diet at all times and believe that you should always be on some form of maintenance medication. The two work together to keep things in check.
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.....


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 4/7/2010 6:02 PM (GMT -7)   
makers diet and scd totally work for me. i stay just outside of the ketogenic range (130 g carbs/day) and i dont have to exercise to maintain my body weight. it is great. been off meds for like 2.5 years now because of it. no symptoms. best i felt ever. but i think my experience is not a-typical nor is it typical. every one is so different, which is why there is not one med that works for everyone. i think i am a case that shows the possibility of diet if you are disciplined enough.
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


Catasmom
Regular Member


Date Joined Sep 2009
Total Posts : 54
   Posted 4/7/2010 6:26 PM (GMT -7)   
My daughter did total enteral nutrition for 6 weeks, Then we incorporated food slowly. She supplements with elemental formula, and eats al her meals regualarly. I did cut back on complex carbs, though as much as possible (rice, pasta, potatoes, sugar, etc.)
Read: Beat Crohn's! Getting to remission with enteral nutrition by Margaret Oppenheimer. Totaly saved us. She is in remission since October 2009
Mom of a 12 year old girl diagnosed on Oct. 2007.
did 6 weeks of Total enteral nutrition with Splash E028 and Vital Jr. (also tied Peptamen) (1900 cal. a day). Eating normally for since Thanksgiving 2009... supplementing with 3 boxes of E028 Splash. Symptom free! Also on Prednisone (5 mg every other day)/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: VSL#3/ Omega 3: Coromega/ Vitamin D 2000 IU daily
Warm healing wishes from the Miami beaches....


$rules
New Member


Date Joined Feb 2010
Total Posts : 15
   Posted 4/8/2010 4:34 AM (GMT -7)   
Dairy free diet. Like complete dairy free diet (checked labels for whey, lactose etc). Symtpoms soon disappeared and only reappear if I have anything with dairy in it.

Give it a go i'd say. Yes it is hard to do but, apart from the ibd symptoms, i feel so much healthier. & we do NOT need dairy in our diet at all...just a marketing ploy saying it is good for us.

I don't see rhino's drinking milk. we are the only species to drink milk. calcium is prevelant even in water!!!

KristiniaLeAnna
New Member


Date Joined Apr 2010
Total Posts : 5
   Posted 4/8/2010 8:26 AM (GMT -7)   
I don't do really any dairy.. I don't even drink milk unless its Lactaid & Real Goodness but that is on occasion, I'm sort of lactose intolerant.

As far as my Doc... I got desperate and made an appt with him again... He's in Portsmouth, Ri... I couldn't wait on the Fall River, MA doc.. So I will voice my concerns and my symptoms and I hope he will hear me out.. I know alot about my disease... I look young so he doesn't take me too seriously.. I'm 26 I look 15... I've had this since '99 I know when my body is being weird.. My appointment is on Monday.. I hope he will draw some blood, at least think about the Remicade.. and no pills.. I don't absorb them as it is.. I've already lost 10 lbs in 3 days... so I'm getting worried cause usually when I flare I lose weight quick and the bathroom visits are a lot more frequent along with sore stomach and achey pain.

I was asking about the Gluten free diet because it seems that a lot of people have Crohns & Celiacs Disease.. I'm going to ask for a blood test on that too.

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 4/8/2010 5:08 PM (GMT -7)   
i dont know about a lot of people having crohns and celiac - i dont think they go hand in hand. but i havent looked at the numbers either. however, most people are sensitive to varying degrees to gluten. this goes for crohns or not. my sister does not have crohns but her blood work showed gluten sensitivity. she stopped eating gluten and felt tons better, not knowing she even had a problem. same with dairy. they are the two most common food problems (not necessarily allergies). soy and peanuts and shellfish are next. i feel better by not eating a lot of grain based foods, which means i also eat low glycemic and do not eat refined/processed foods. this has me feeling better. granted by eating this way i have removed a ton of gluten from my diet, but before i did it, i always felt fine with bread and grain based foods were my comfort foods. so food for thought...
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


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8570
   Posted 4/8/2010 5:32 PM (GMT -7)   
I did go on a gluten-free diet for six weeks about three years ago. It was a bit discouraging, as I didn't even feel slightly better, but I was still eating processed sugary stuff, only gluten-free processed sugary stuff - so maybe that didn't help.

I'm considering trying SCD for the first time, but it's such a huge commitment that it's gonna require months of psyching myself up to do it. And anyway, there's still a small number of drugs left to try, including Remicade. But before I wouldn't even consider it. Now I'm more, "well if it actually worked, it might be worth doing...". I have huge doubts about it, but it does seem to work for some. I'd be interested in knowing their symptoms and disease activity at the time of starting the diet, though.

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 4/8/2010 7:13 PM (GMT -7)   
I agree with CrazyHarry about makers diet or scd. My experience has been beneficial with the maker's diet.

In general, I think every crohnie could benefit from staying away from sugar and processed foods and eating more natural foods.

wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 4/8/2010 8:24 PM (GMT -7)   
I don't eat any dairy or meat, and eat a mostly grain and veggie based diet (I do eat fish).  I can tell the difference in my body if I eat something with dairy in it especially. 
 
I eat lots of quinoa and brown rice and tons of veggies, mostly sauteed (maybe in a stir-fry) or roasted.  I try to follow the principles of macrobiotics: eating with the seasons, chewing your food reaaaallllly well, etc etc.
 
Some great books to check out if you are interested in this:
 
The China Study
The Kind Life (Alicia Silverstone's book)
The Hip Chick's Guide to Macrobiotics
 
Good luck!!
33 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, Humira, 55 30 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
 
Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
 
 
 


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 4/8/2010 10:07 PM (GMT -7)   
NiceCupOfTea, some of my symptoms pre-SCD were fistulas, fissures, constipation, cramping, bleeding, and acid reflux. All are now gone (took about 6 months for all those things to happen). My fatigue, unfortunately, is not better. My last TSH was way too high though, which indicates I'm hypothyroid, so that could be the problem. I've also had some improvements in non-crohn's issues. My seasonal allergies are almost non-existent now (and I no longer get a fluid backup in my ears), my eczema is almost gone (one little patch on my pinky finger), and I no longer get weird fluid filled bumps in my mouth after eating

I'm currently having a minor setback (more bloating and gas), but my liver enzymes are sky high right now (thanks Humira, Remicade, Imuran, and 6MP), and I'm thinking that there is a connection there. Also, I'm a little suspect that Welch's grape juice may no longer be SCD legal. I drank it every day for a year and was fine. Then the label and cap color changed, and the taste is a little different. Last week I finally connected that I was getting the bloated feeling AFTER I drank some Welch's. Some other people have reported the same thing. Makes me sad, because I really liked Welch's.

If you give SCD a try, lots of luck! It took 2 or 3 months of major research before I felt ready to take the plunge. I'm very glad I did it though :-).
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


DarrylP
Regular Member


Date Joined May 2006
Total Posts : 214
   Posted 4/9/2010 10:03 AM (GMT -7)   
For my input, personally no diet ever worked for me.
While avoiding some foods helped control some of the symptoms a bit (like avoiding lots of fats or gassy foods) no diet actually made a difference in my actual crohns
 

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