03-23-2012, 04:38 PM   #1
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DustyKat's Avatar
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Location: New South Wales, Australia
The role sugar plays!?!?

As some of you may know Sarah has made some pretty drastic changes to her diet over time. Firstly she gravitated toward a vegetarian diet and then about 18 months ago went that step further to vegan.

All changes to her diet and lifestyle have been made with much research and forethought. The move to vegan was I think done for both physical and conscientious reasons, with the physical holding the greatest sway and part of that had to do with dairy and her seeming inability to tolerate at all well following surgery. She also found red meat difficult to tolerate too.

The latest adjustment, about three months ago, has been to eliminate sugar, well anything with more than 1 gram per serve. I have also been looking into sugar and the role it plays in Crohn's and in many ways it's adverse effects makes a great deal of sense. I'm also looking into probiotics and think I have settled on Culturelle Lactobacillus GG, anyone else use these?

I can only look to Sarah and for what seems, and in all honesty is, a very restricted diet...no meat, no dairy, no (little) sugar (sucrose)...she looks well and has loads of energy. She is very conscious of her need for calories and has found alternate ways to get the required calories she needs per day. She never use to juice but now juices vegetables, she does not juice fruits as this then concentrates the sugars contained within them.

The only downside that I can see is her weight. At present it is stable and within normal limits but it does not lend itself to her losing much should she become stressed, which she does at times, at which time she tends to lose her appetite. Other than that she really does look the picture of health.

Any thoughts/comments?

Dusty. xxx
Mum of 2 kids with Crohn's.
03-23-2012, 05:35 PM   #2
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imaboveitall's Avatar
Join Date: Feb 2012
Location: Statesville, North Carolina
HEY, Dusty!
Culturelle was the probiotic V's doc recommended and the one in which he said he had the most faith. We never ended up using it though as there's no evidence her gut flora is anything but correct.

My 28 y/o daughter went VEGAN two years ago after being vegetarian w/heavy cheese diet for her whole life. Yes, her whole life, she had never had a piece of meat in her mouth. She also uses very little sugar.
Her weight has maintained, but I worry about protein intake and B12. Her doc suggested a B12 supplement (he is vegan himself) but she doesn't take one . She looks "gray" to me, I don't like her color but she has terrific energy. She gets protein via soy but I just don't think that's enough. She does catch more illnesses since going vegan. I don't like it overall as a diet choice and I wish she'd go back to dairy/eggs but she won't.

Edited to add: Violet doesn't like sweet foods and avoids them, always has, hates chocolate (what kid hates chocolate), says certain drinks are "too sweet"...and she is very tuned in to what food she "needs" so I bet there's something to it...

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg

Failed and/or past tx:

Last edited by imaboveitall; 03-24-2012 at 11:49 AM. Reason: more info and typo
03-23-2012, 05:57 PM   #3
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make her a bacon sarnie ..nobody can resist that

If she is happy and can maintain her health then good for her, if she does start to lose weight can she take high energy shakes (i hear oatmeal in normal shakes can help with the calorie intake).

It would be worth making your own pro-biotic yoghurt, then use a bit of the culture to make more (assuming you can make it with soy milk or something)

Any reason why she has become vegan?
Current Meds:
2x 1200mg Mezavant, 3x50mg Azathioprine, Infliximab (6 weekly)
03-23-2012, 06:30 PM   #4
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Hah, I wasn't sure til I looked but yes EJ's been taking Culturelle, Lactobacillus GG for over two years now

Sarah certainly looks good to me Dusty….and I mean that in the most innocent way!
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
03-23-2012, 08:58 PM   #5
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Location: Ontario

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Dusty, would Sarah consider having a nutritional shake each day? I would imagine that there is one that would meet her dietary restrictions while boosting her vitamin and protein intake???
Tess, mom to S
Diagnosed May 2011

May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-24-2012, 05:51 AM   #6
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DustyKat's Avatar
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Location: New South Wales, Australia
@Julie - Thanks hun. I haven't noticed that Sarah is picking up more illnesses than usual so hopefully it stays that way.

@Rygon - She originally went vegetarian as red meat no longer agreed with her. She then started to reduce her dairy and as she did so realised that also made her feel sluggish and affected her bowels. Once she was down to primarily vegetables and seafood she looked further into diet and what humans 'should' be consuming and I think that coupled with a developing view of abstaining from the use of animal products she decided that veganism was the way to go. So certainly a choice on her part but I do feel it was one driven by her Crohn's.

@Dexky - Thanks Dex! Oh, and I'm sure it's all innocent!

@Tess - Thanks for the suggestion Tess! I think now that she is juicing she is also looking into that.

Dusty. xxx
03-25-2012, 11:03 AM   #7
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Jenn's Avatar
Join Date: Jul 2011
Location: San Diego, California
Was just thinking about the sugar aspect myself. Alex is a sugar fiend, and for now, it'd be pretty impossible to restrict it, but I could do better.

He was on Culturelle for Kids for 2 years, we stopped recently when the GI thought his recent illness was from a bacterial overgrowth. He was also on Primal Defense (google that, some interesting stuff). I could never see any effect whatsoever on him. I think it's worth taking while on/after a course of antibiotics to restore gut flora. I took primal defense myself out of curiousity, no need. I found it maybe made me more regular.
Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (25mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
03-25-2012, 03:59 PM   #8
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Caitlyn takes a probiotic called florajen which is really well absorbed.

That is funny that Violet does not like chocolate. I thought Caitlyn was the only girl in the world that does not like chocolate. She does like other stuff though with sugar. I have tried to change her diet but I don't want to push now she is on this big kick that she is fat from all the weight the steroids put on her. She lost 10 pounds but still has about 8 to go to be her ideal weight. The way she lost weight has basically been reduced portion sizes and started being able to go to gym class again now that she is feeling better. She has cut back a lot on junk food as well and is trying to eat healthy snacks.

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.
08-06-2012, 06:53 PM   #9
Ahumado's Avatar
Join Date: Sep 2010
Location: da UP
What is LDN?

08-06-2012, 07:10 PM   #10
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
Hey Ahumado,

LDN is Low Dose Naltrexone. There is a subforum under the Treatment forum that will tell you all about it...



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