Share Facebook


 
12-02-2013, 03:12 PM   #31
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
Green leaf lettuce. I only give him the softer bits on the end of the leaf and don't let him have too much (ie he probably only has about 1 leaf max per sitting).
__________________
Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
12-07-2013, 11:59 AM   #32
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
This week didn't go so well. Currently having a lactose tolerance test done. Losing confidence that the diet will work. Starting to think that the psychological component in this all is playing a greater role. He just seems to fold whenever he starts to feel unwell.

Last edited by Twiggy930; 12-08-2013 at 10:08 AM. Reason: Typo
12-07-2013, 12:03 PM   #33
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
More FODMAP friendly food items...

GF bread can make a fabulous grilled cheese sandwich.
Betty Crocker GF vanilla cake and added lemon zest in the cake and a lemon juice + sugar syrup on top.

Last edited by Twiggy930; 12-07-2013 at 12:04 PM. Reason: Typo
12-07-2013, 12:47 PM   #34
greypup
Senior Member
 
greypup's Avatar
 
Join Date: Apr 2013
Location: St. Louis, MO

My Support Groups:
I follow this thread and find it interesting that the way we naturally eat, because we are gluten free, is naturally FODMAP friendly. I really appreciate your posts.

I really hope you find the right combo soon for your son. You are an amazing mom. Hang in there. ((hugs))
__________________
Linda
Mom to 18 yr old daughter, M, dx'd Crohn's April 2013
TI resection surgery June 2013
Imuran
supplements=Vit D, L-Glutamine, Omega D, Probiotic, Curcumin
12-15-2013, 10:48 AM   #35
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
We are still hanging in there with the diet. This past week was WAY better. He has actually felt good for 9 days in a row now!!!!!!! The one thing I changed was his probiotic. Our pediatrician suggested switching the probiotic as there is some research that suggests that cycling through various probiotics rather than sticking with one is beneficial. So we switched from TuZen to Bio K (rice based formulation). And viola... a different kid emerged. It is such a relief.

Haven't got the results of the lactose intolerance test back yet but I'm pretty sure they will come back negative. He drank the whole cup of lactose without any problems. So I have probably been buying the expensive lactose free milk all this time for nothing.

I'm not sure if it is because the memory of regular bread is becoming weaker or if his yearning for bread is becoming overwhelming but he has recently decided that the GF bread from our local GF bakery is good. I also made a great FODMAP friendly pizza last night. I used Pamela's GF Pizza Crust Mix and made the sauce out of a can of crushed tomatoes and I added lots of oregano and a dash of garlic infused olive oil. Topped this pizza with mozzarella. He devoured it and said it was delicious.
12-15-2013, 10:56 AM   #36
greypup
Senior Member
 
greypup's Avatar
 
Join Date: Apr 2013
Location: St. Louis, MO

My Support Groups:
Have you looked at Udi's gluten free bread? I'm not sure what the illegal ingredients are to FODMAP but our family loves the Udi's line. They have premade pizza crust, sandwich bread, bagels, muffins and cookies.
12-15-2013, 11:24 AM   #37
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
We have tried Udi's GF sandwich bread. My son doesn't mind it for toast but so far won't eat a sandwich made with it. Stores around here don't seem to carry the whole Udi's line only a few products. I don't think I've seen the pizza shells. We have found GF English muffins by Glutino that are pretty good.
12-15-2013, 11:37 AM   #38
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Ian's also makes a gluten free French bread pizza thing
Not sure about fodmap side .
DS preferred bob's mill mix for gf bread ( this was pre nut allergy)
I would bake three loaves at once slice and freeze with parchment paper inbetween
Toast as used.
__________________
DS - -Crohn's -Stelara
12-22-2013, 11:30 PM   #39
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
We are 5 weeks into the diet and things are much improved. He has felt good for 17 days!!!



I can't be certain that it is the diet that is responsible for the change but who can be certain about anything with this disease. He has felt so good that I have eased up slightly on the diet in the last 3 days. On Friday he ate 1 regular pancake, on Saturday he ate 1/2 a regular bagel and today he ate a small amount of ketchup with his GF grilled cheese sandwich and then at dinner he ate 1 piece of regular bread. So far so good. I intend to keep going with the diet but be slightly less strict about it and allow small amounts of high FODMAP items.

Made a really good FODMAP friendly beef stew tonight and didn't miss the onions and garlic at all, made up for the lack of flavor with bacon and red wine. I've also been making peanut butter rice krispie squares that are GF and HFCS free.

I hope this good streak lasts a good long while. I need a break.
12-23-2013, 08:06 AM   #40
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Can you give the rice Krispy squares recipe.

Thanks

I'm glad he's doing better.
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
12-23-2013, 08:15 AM   #41
greypup
Senior Member
 
greypup's Avatar
 
Join Date: Apr 2013
Location: St. Louis, MO

My Support Groups:
Congrats! Sounds like you're on to something good.

Here's an article I recently ran across on the celiac listserv I subscribe to.

New article by Amy Burkhart, MD, RD "The Celiac MD"
http://www.celiaccommunity.org/the-celiac-md-2/

"Move Over Gluten-Free: Low FODMAP is next"
An intolerance to FODMAPS (a condition known as fructose malabsorption) =
may affect over a third of the U.S. population, including many with =
gluten-related disorders. Australia just instituted a FOMAPS friendly =
certification program =96 will the United States follow suit?

- Jennifer Iscol
Celiac Community Foundation of Northern California
www.celiaccommunity.org=


I'd like the gf rice krispy recipe too ;-)
12-24-2013, 01:09 AM   #42
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
GF Peanut Butter Rice Krispie Squares

1 cup peanut butter
1/2 cup brown sugar
1/2 cup golden syrup (make sure it is pure cane syrup and NOT high fructose corn syrup)
1 tsp vanilla
3 cups Rice Krispies (the Brown Rice ones are GF and taste the same)

In a saucepan melt the peanut butter, sugar, syrup and vanilla together over low-medium heat. Stir until smooth. Remove from heat. Stir in Rice Krispies. Press into a greased 9 x 9 inch square pan. Cool to room temperature.

These are even better when topped with a chocolate ganache but chocolate is of questionable FODMAP friendliness. For a ganache I use about 5 oz. of semi-sweet or bittersweet chocolate and melt it with about 3 Tbsp or so of whipping cream. Stir the melted chocolate and cream together and spread on top of the cooled peanut butter squares.
12-29-2013, 11:50 AM   #43
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
The good streak continues with a little blip on the 27th. He didn't feel too great on the 27th and the dark circles under the eyes reappeared. We tightened the diet up again and he is feeling better now. I am attributing the blip to a package of Tim Tams that a relative gave him for Christmas. A relative that knows he is on this diet. Anyhow the Tim Tams are gone now and he is back to following the diet. I think he can still have the odd higher fodmap item but perhaps not a whole package of Tim Tams.
12-29-2013, 12:10 PM   #44
greypup
Senior Member
 
greypup's Avatar
 
Join Date: Apr 2013
Location: St. Louis, MO

My Support Groups:
Excellent to know that this works for you!

Is it hard for your son to stick to the food requirements? Is it demanding on you?
12-29-2013, 12:48 PM   #45
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
It hasn't been too hard at all. But a caveat to that would be that I already made most things from scratch so I have just changed my recipes somewhat. If I had relied on prepared food and had to make the switch it would likely have seemed harder.

My son finds cutting out wheat the hardest. He LOVES bread and pasta and really the GF options are not quite as good. As time goes on he is becoming more accepting of the GF products.

Except for the Tim Tam incident Christmas hasn't been that hard in terms of sticking to the diet. I really would have expected it to be harder. It helps that he doesn't like stuffing or trifle or butter tarts or candy canes.

I think it is also easier for him to stick with the diet because he was so desperate to feel better.
12-29-2013, 02:14 PM   #46
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: Connecticut

My Support Groups:
WOW! I am amazed at both of you! Good for you sticking with this and trying to figure it all out. I just wish you didn't have to.

BTW - my Italian non food restricted family loves Quinoa pasta...even better than the regular stuff. It is gluten free. Not sure about Fodmap but might be worth checking out.
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
02-02-2014, 11:51 AM   #47
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
Overdue for an update. Things have been GREAT! Aside from a bit of a stomach bug, that we all succumbed to, he has been feeling well and attending school and all of his after school activities. This is a major win for us!!! Diet wise I have allowed him limited amounts of cheating. Mostly it has been the odd bit of regular bread or a small amount of lactose containing dairy (i.e. ice cream or cream cheese). I limit the cheats to no more than 1 a day and I don't let him cheat everyday. Mostly his cheats occur on the weekend. I have let him have the odd piece of pizza, at school events and such, but make him decline the soft drinks in favor of water. So far this is working. I have even been able to increase his fiber intake without any ill effects. He is now eating raw carrots and blueberry smoothies! I was seriously scared of that sort of fiber for a LONG time.

02-02-2014, 12:06 PM   #48
greypup
Senior Member
 
greypup's Avatar
 
Join Date: Apr 2013
Location: St. Louis, MO

My Support Groups:
Do you find that dairy is an inflammatory? If so, is it the lactose or the casein that is mostly intolerable?
02-02-2014, 12:23 PM   #49
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
We had a lactose intolerance test done (a hydrogen test) and it came back negative. I think he can likely eat dairy with less restrictions. He eats fairly large amounts of lactose free vanilla yogurt, lactose free milk and cheddar cheese with no problems at all so casein can't be a problem. I have probably been needlessly scared of lactose.
02-02-2014, 02:32 PM   #50
greypup
Senior Member
 
greypup's Avatar
 
Join Date: Apr 2013
Location: St. Louis, MO

My Support Groups:
Got it. Thanks ;-)
02-03-2014, 08:42 AM   #51
Suzysu
Senior Member
 
Suzysu's Avatar
 
Join Date: Apr 2012
Location: United Kingdom

My Support Groups:
Hello! I have started my little guy (undiagnosed) on a low fodmap diet (gi mentioned it a while back) my little one can't have any dairy at all and I was a little confused about soya and the diet - I know soya beans are not allowed but what about soya yoghurts and tofu? I am worried that my little guy is not getting enough calcium. Also did the diet cause any change in stool colour? My little guys have gone from a normal colour to bright yellow!!!! So glad to hear that this diet has helped your little people!!
04-18-2014, 09:32 AM   #52
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
Update: DS is still doing WELL! Still following the diet. I suspect that wheat causes more problems for him than lactose and apples are like dynamite (even cooked). He is going to school regularly and attending tons of after school activities. He is playing baseball for the first time in 3 years!!!

His new favorite FODMAP friendly dinner is beef stirfry with a orange ginger sauce. Recipe below.

Orange Ginger Stirfry Sauce

1 cup orange juice (I use fresh squeezed)
1/4 soy sauce (I use wheat free tamari)
1 Tbsp grated ginger
2 Tbsp. cornstarch

Stir everything up and add to stir fry right at the end. Generally I stir fry beef, carrots, broccoli, bell peppers and snow peas (although I don't let my son have the snow peas).

It is delicious and I don't miss the onions at all.
04-18-2014, 09:36 AM   #53
Twiggy930
Forum Monitor
 
Twiggy930's Avatar
 
Join Date: Feb 2012
Location: Canada

My Support Groups:
Suzysu - Sorry I didn't see your post until now. I am confused by FODMAP and soy. I think that for the most part the soy milks are not allowed on the low FODMAP diet. I haven't looked into it very carefully as my son doesn't drink them. I did not notice a change in stool color when starting the diet, although he seldom lets me look these days.

Last edited by Twiggy930; 04-18-2014 at 09:37 AM. Reason: typo
04-18-2014, 06:48 PM   #54
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Thanks for the update Twiggy! It is so fab to hear that your is still doing well, YAY!

Hmmm, I think I feel a beef stir fry coming on! Sounds delicious. Thanks!

Dusty.
__________________
Mum of 2 kids with Crohn's.
04-28-2014, 10:48 AM   #55
MicroByte
 
MicroByte's Avatar
 
Join Date: May 2012
Location: Plano, Texas
I'm really happy that the FODMAP diet is working for you, I'm looking into it more to see how it relates to the SCD diet.

My youngest, who was diagnosed January 2012, has been on a modified SCD diet since October 2012 and off his meds and has been doing fine. I say modified because his diet is more indicative to the FODMAP diet with Gluten free, rice and some other no-no SCD food ingredients used. He seems to be doing well.

My Older son was diagnosed with Crohn's 2 weeks ago and we have him on the same diet. He is using a different GI doc than my younger who supports the idea of diet changes and not just fully medicating. In fact, when he was diagnosed, she explicitly said to try the diet and follow up in a few weeks to see how he is doing. He's back in school again and seems to be improving.

Not to take over your success thread, I just wanted to say that I'm happy that food changes are helping. The trick is to stick with it which is hard.

Keep the updates coming!
04-28-2014, 07:05 PM   #56
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
MicroByte - glad the diet is working- make sure they follow them with bloodwork and imaging since crohn's is notorious for having silent inflammation causing damage without any other symptoms.
05-02-2014, 02:58 AM   #57
Ands
Senior Member
 
Ands's Avatar
 
Join Date: Aug 2012
Location: Somerset, UK

My Support Groups:
Well our FODMAP journey has been delayed a little while. Can't see the dietician until 22nd May and they don't want us to start until then. J is so frustrated and just wants to get going, he has so much pinned on this, hoping it will cure everything!?!?!?

Loving looking back through the recipes though. Xxx
__________________
.................................................. .............................
Son Joseph diagnosed July 2012 (aged 10)
Crohn's: oesophageal, ileal, oral and perianal disease
6 week exclusive modulen
8 weeks predisolone
2 weeks azathioprine - stopped after reaction
6-MP 50mg - stopped June 2014 (after 18 months)
Currently on:
Sennoside 18ml daily
Multi Vitamin
Omeprazole 10mg
Prochlorperazine 2 x 5mg
Predisolone as a mouth-wash (as and when needed)
Reply

Thread Tools


All times are GMT -5. The time now is 12:06 PM.
Copyright 2006-2017 Crohnsforum.com