Crohn's Disease Forum » Parents of Kids with IBD » Experiences with Diet

08-16-2016, 01:01 PM   #1
Join Date: May 2016
Location: Calgary, Alberta
Experiences with Diet


I'm wondering for those who've tried various diets (with or without medications) what your experiences were? Basically, how long did you give it until you determined it wasn't working or not worth it? My son is currently on Mezavant and gluten free with some improvement and wondering if it's worth trying dairy free, sugar free or SCD to see if it'll help with the symptoms. My son is 11 so my biggest concern is him actually following through with a strict diet.
08-17-2016, 12:51 AM   #2
Senior Member
The SCD worked for my daughter, but not for my son. It's a pain to follow, but totally worth it if it works, of course!

Daughter was 24. Steroids put her into remission and the SCD has kept her there, no meds, no symptoms, for 11 years!

Son was 16 and tried the diet for a year with little relief of symptoms. He's now on Remicade at 19.
08-18-2016, 08:19 AM   #3
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Join Date: Nov 2014

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I have tried different diets (for myself).

Firstly I would like to mention that I beliefe that diet can just be the additional part to diet, but - no doubt - a very critical one.

So, I tried different diets BEFORE being diagnosed so that's a completely different issue, would be more something like curing a disease with just diet. I've been vegan before diagnosis, also went gluten free and vegan, was a raw vegan for a few weeks (felt horrible), also tried low carb while being vegan (tofu, tofu, tofu, NOT healthy).

After being diagnosed I knew that my diet was not the problem but a physical problem in the intestines. So I slowly changed my view from eliminating (also tried SCD while being on different medication one after another) to thinking more about nutrition, in terms of giving the body what he needs, in an easy absorbable less-irritating form. I'm working with a nutritionist that I see regularly which was very helpful. I have to add that she has specialised in IBD, so most nutritionists will only rely on what they have learned from books which I found not to be helpful for me.
I'm eating fish (omega 3), protein rich dairy (quark, skyr etc.), egg and lots of vegetables, preferably all components of carbs, fats and protein on my plate, especially fats which slow down digestion in the small intestine (released into the small intestine in small portions from the stomach). Apart from that I don't eat sugar, just fruits in my quark with linseed oil for breakfast. If I do eat sugar, I see negative reactions (it's scientifically proven that gut flora plays a critical role in IBD, sugar can worsen the gut flora towards an environment that promotes inflammation).
I also don't eat nuts (feels like stones going through my gastrointestinal tract, don't want to feel that ever again), raw vegetables (eating raw carrots would be like suicide for my gut), sauerkraut, cale, beans, whole grain etc.
So I seem to do best on a protein-rich vegetable based diet with mainly cooked meals, eating regularly, small portion sizes, not too many carbohydrates. But without restricting, everything in moderation. If I want to eat something, I eat it but nut by itself but before or after a meal (helps tolerating it then). Also I try to eat a large variety of foods.

Hope you find a good way diet-wise for your son!
Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
08-18-2016, 08:22 AM   #4
my little penguin
Forum Monitor
Join Date: Apr 2012

My Support Groups:
Ds diet thread

And general diet section for kids

Tons of info there for kids
DS - -Crohn's -Stelara -mtx
08-18-2016, 10:01 AM   #5
Forum Monitor
kimmidwife's Avatar
Diet did not help my daughter at all. We tried them all. It doesn't hurt to try diet along with medication to see if it helps.

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
08-18-2016, 11:30 AM   #6
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Join Date: Jan 2013
Location: North Central, Illinois

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My daughter did EEN which was the best start ever for treatment for her since she was 68 lbs, almost 14 years old and 5'4" tall at diagnosis. It helped to provide her with much lacking nutrients too. Other than that, she can't eat raw veggies that are hard to chew like carrots. She is gluten intolerant also. We've tried going grain free and dairy free too, but that didn't do much. We recently found my second daughter's GI symptoms to be caused by a corn allergy. We will test Jae for that next week. It helped Elli a lot to cut that out.
J's story:
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.

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