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11-16-2013, 11:23 AM   #1
Twiggy930
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FODMAP Journey

I am once again desperate to get my son feeling better for longer periods of time. GI is convinced that inflammation is not causing his symptom of chronic and debilitating abdominal pain (labs and FC repeatedly come back normal). Things were good for awhile and now he seems to be having loads of pain and is missing tons of school yet again. So I am going to have him try the FODMAP diet again. We tried it about 15 months ago but I honestly can't remember how strict I was with it or how long we tried it for. And I remember I was sort of trying to combine it with a paleo diet and the SCD diet. So this time around I am going to try a strict FODMAP diet for my DS and I am going to record how it goes here.

The following link has a good description of the diet.

http://www.health.arizona.edu/health...APs%20diet.pdf

My son started this diet last night at dinner time and for dinner had plain grilled fish (trout), mashed potatoes (made with lactose free milk), steamed carrots and a mandarin orange. And I think he had a bunch of reduced salt potato chips while DH and I were out for the evening.
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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.
11-16-2013, 11:33 AM   #2
Clash
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I hope the diet brings him quick relief! Hugs!
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Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
11-16-2013, 11:35 AM   #3
Farmwife
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Grace's dietitian mentioned this diet when she could eat.
I hope it works wonders for him.
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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
11-16-2013, 12:50 PM   #4
my little penguin
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DS did it for three months summer before last no relief at all until he was on remicade.

Oatmeal bake was great
Chicken nugget recipe as well
http://www.taste.com.au/recipes/coll...p+diet+recipes
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DS - -Crohn's -Stelara -mtx-IVIG
11-16-2013, 01:20 PM   #5
Tesscorm
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Good luck!!! I hope the diet helps!

Has he had a recent MRE or other imaging? Just wondering if it could be scar tissue that is causing his pain?? ... would explain why nothing shows up on labs.
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
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
11-16-2013, 02:23 PM   #6
Twiggy930
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Hi Tess,

We have had no recent imaging done. A MRI was done in May 2012 a few months after diagnosis. It did not show any major scarring and since then all of his inflammatory markers (including fecal calprotectin) have been normal so there is no indication that this should have changed. In an ideal world I would like them to look further but GI is unwilling to do so. Our paediatrician is looking into other imaging and tests to look for "the weird and the wonderful" as she puts it.
11-16-2013, 02:28 PM   #7
my little penguin
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What about scopes since then?
DS has had one a year .
11-16-2013, 03:16 PM   #8
Twiggy930
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Only had the one scope at time of diagnosis. They won't do another one at the moment. Flat out refuse. Numerous fecal calprotectin tests have come back completely normal therefore they say that there is no reason to do a scope. At the moment all I get from GI is a referral to psychology.

The paediatrician is more willing to look further. But she first wants to try the diet changes and I don't really disagree at this point. I am hopeful that it might work. At this point it is all I've got so I'm clinging to it.
11-16-2013, 03:27 PM   #9
Tesscorm
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I would try to insist on an MRE (and, I think, an MRE will show more than an MRI but am not 100% sure on this???). Stephen's had three MREs. However, we had to pay for one of the MREs ourselves (wait was too long and needed/wanted some imaging before deciding on remicade so we went to the U.S. to have it done).

Stephen's also had two scopes probably because he's had two GIs (ped and adult).

I don't know how long it takes for scar tissue to form, don't know how well scar tissues shows up (I believe inflammation can be more apparent then scar tissue???) and am not sure how scar tissue can change over time. Perhaps there was a bit of scar tissue formed that wasn't seen and it's changed and is causing the problems now??? I have more questions than anything re scar tissue but might be worth asking ped if this is a possibility.

I do hope you see some improvement with the diet though!
11-16-2013, 03:46 PM   #10
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Good luck trying the diet. Really hope it brings some relief!
11-17-2013, 12:15 PM   #11
Twiggy930
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By last night he was feeling quite a bit better! I hope it lasts. It was a bit problematic last night as we had a birthday dinner for my dad at my sister's house. None of the food they were planning on serving was FODMAP friendly, which was understandable as we only just started the diet and the extended family are not up to speed on it all yet. I took a separate meal over for my son and even baked a FODMAP friendly Betty Crocker chocolate cake mix that was GREAT. All in all it was a good night.
11-17-2013, 07:18 PM   #12
kimmidwife
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I am very interested to hear how this goes. I have been trying to convince Caitlyn that trying one of these deist might help but she refuses to try saying that all the doctors say diet doesn't matter, which sadly is what they have told her.
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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.
11-18-2013, 08:08 PM   #13
Twiggy930
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So far he is feeling good!!! He went to school today and stayed the whole day.

Kim - We have also been told that diet doesn't matter.
11-18-2013, 10:20 PM   #14
Twiggy930
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For anyone curious (and so I remember a year from now) some of the foods he has been eating are.

Nature's Path Panda Puffs with lactose free milk
pancakes with maple syrup (Bob's Red Mill GF Pancake Mix)
eggs and GF toast with small amount of butter (Glutino White Bread)
mandarin oranges
grapes
strawberries
reduced salt plain potato chips
rice crackers and cheddar cheese
homemade chicken noodle soup (no onions or celery and GF rice noodles)
11-18-2013, 10:56 PM   #15
Brian'sMom
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Only had the one scope at time of diagnosis. They won't do another one at the moment. Flat out refuse. Numerous fecal calprotectin tests have come back completely normal therefore they say that there is no reason to do a scope. At the moment all I get from GI is a referral to psychology.

The paediatrician is more willing to look further. But she first wants to try the diet changes and I don't really disagree at this point. I am hopeful that it might work. At this point it is all I've got so I'm clinging to it.
When we were just recently at Mayo, the GI there was insistant on doing a colonoscopy when labs are normal (hopefully we get there)... He said many GI's just do scopes when labs/symptoms are bad. But its just as necessary to look other times too. He said "Seeing is the best".

I'll be anxious to hear how the diet goes. So far, food seems to not matter with my son.
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
11-18-2013, 11:07 PM   #16
Twiggy930
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Just made coconut milk ice cream and it was AMAZING!
11-22-2013, 10:37 AM   #17
Farmwife
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Recipe please!
11-23-2013, 06:35 AM   #18
DustyKat
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Good luck with the diet Twiggy! I so hope the good start continues and I look forward to reading the updates.

I see there are iPhone and Android apps available. They arenít free:

http://www.med.monash.edu/cecs/gastr...phone-app.html

Dusty. xxx
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11-23-2013, 06:35 PM   #19
Twiggy930
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Farmwife - Here is the recipe. It is easy and amazing but I think it made my son feel bad.

http://mamasweeds.com/2013/08/13/hom...ilk-ice-cream/

Dusty - I bought the iPhone app and was very disappointed in it. Definitely not worth buying it.

So far he is still not feeling great but last week was definitely better than the week before so we are going to keep with it. He misses bread terribly but is doing OK with most other things.
11-23-2013, 11:41 PM   #20
greypup
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One of our GI docs also said that food doesn't matter. How can they say this when there are RD who specialize in crohns/colitis?!
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Mom to 18 yr old daughter, M, dx'd Crohn's April 2013
TI resection surgery June 2013
Imuran
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11-26-2013, 12:10 AM   #21
Twiggy930
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The latest FODMAP friendly food item was beef tacos. I made my own taco seasoning without onion or garlic powder, used regular taco shells (only ingredients are corn flour, coconut oil and water), grated cheddar cheese and lettuce. Luckily DS has always HATED salsa and guacamole so these somewhat plain tacos were just to his liking.

Also made this banana blueberry loaf but the crazy kid hasn't tried it yet. I really liked it.

http://www.strandsofmylife.com/banan...ee-low-fodmap/
11-26-2013, 12:20 AM   #22
Twiggy930
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Interesting FODMAP article.

http://www.gastroendonews.com/ViewAr...011&a_id=24434
11-26-2013, 01:36 AM   #23
Twiggy930
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Even more interesting...Hypothesis on how FODMAP might relate to Crohn's.

http://fodmapliving.com/wp-content/uploads/2012/07/Fodmap-Crohn's-and-Western-lifestyle.pdf
11-27-2013, 08:04 PM   #24
Twiggy930
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I'm almost scared to write this... He feels GOOD!!! We have had 3 full days of school in a row!!! I feel like dancing in the streets.



Now I will make a sacrifice to the Crohn's gods so that I don't jinx things...
11-27-2013, 08:20 PM   #25
my little penguin
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Woohoo!!!
So glad it is working for him.
11-28-2013, 04:58 AM   #26
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Fab news, may it long continue!
11-28-2013, 08:02 PM   #27
Twiggy930
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Apparently I didn't sacrifice enough crows... Feeling terrible today.
12-01-2013, 10:14 PM   #28
Twiggy930
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So last week we had 3 full days of school then DS started to feel terrible on Wednesday night and missed Thursday and Friday of school. I was discouraged because we have been very strict with the diet. I'm not entirely sure he hasn't been sneaking banned foods but I don't think he has. I almost wish he did as it would explain the not feeling well while on the diet. I soooooooooooooooo want this diet to work. Actually, I just want SOMETHING to work and make him feel better more often.

He has felt good this weekend. He didn't do much but he felt better. Fingers crossed that this week will be even better.

Foods he has been eating. (this may be repetitive)

Beef tacos (no taco seasoning, no salsa) with lettuce and cheddar cheese.
Scrambled eggs with spinach and cheddar cheese.
lactose free vanilla yogurt
mandarin oranges
strawberries
GF chocolate cake (cocoa is moderate in FODMAPS so only letting him have SMALL pieces)
Roast chicken with roast potatoes, steamed carrots and GF no onion gravy
Grilled fish (salmon or trout) with mashed potatoes or rice and steamed carrots.
GF pancakes with maple syrup
low salt potato chips
GF short bread cookies from a neighborhood GF bakery (HANDY)
Nature's Path Gorilla Munch cereal (sweetened corn puffs) and lactose free milk

He HATES GF bread so we have been avoiding bread all together. I wish I could get him to eat more veggies and less fruit but he doesn't like most of the allowed veggies. When he eats fruit I only give him one serving per sitting and wait at least 2 hours before letting him have more.

I think if he continues to have many bad days I am going to cut out all dairy and corn products, for a few days at least, and see how that goes. If that doesn't work I will give up.
12-01-2013, 10:29 PM   #29
my little penguin
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Have you tried making your own gf bread ??
That tends to taste better .
Pm if you need a recipe

We did a taco bake
Chicken
Avocados
Safe cheese ( soy rice etc...)
Corn chips
Lactose free sour cream
Put in a casserole bake



Pork chops
Safe fruit
Cinnamon
Rice or potatoes in a crockpot

Quiche like thing
Spinach layered with ham
Mix in eggs with small amount of safe lactose free cheese
Bake in casserole dish then cut and freeze as needed.

Chicken and rice soup
Boil a whole chicken
With safe veggies plus salt pepper etc

Save homemade chicken stock
Eat boiled chicken then
Later use frozen safe stock for chicken plus rice with safe veggies as a soup.


Chicken n dumpling
Brown potatoes in a deep pan with olive oil
With safe root veggies cut up
Add a pinch of rice or other gf flour
Cut up chicken add
Add safe chicken stock
After boiling a bit
Add safe gf dumplings( gf flour or rice flour plus palm oil shortening plus a little water)
Drop dumpling into the pot to steam


Vans makes safe gf egg free waffles which work well for
Sandwiches instead of bread

Good luck
12-02-2013, 04:03 AM   #30
Catherine
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What type of lettuce are using?
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
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