FODMAP Journey

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Twiggy930

Twiggy930

Joined
Feb 2, 2012
Messages
848
Location
Canada
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_topics/nutrition/handouts/FODMAPs%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.
 
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. :ghug:
 
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.
 
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. :voodoo::voodoo::voodoo::voodoo:

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. :(
 
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!
 
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.
 
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.
 
So far he is feeling good!!! He went to school today and stayed the whole day. :dance::dance::dance:

Kim - We have also been told that diet doesn't matter. :(
 
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)
 
Twiggy930 said:
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. :voodoo::voodoo::voodoo::voodoo:

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. :(
Click to expand...

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.
 
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/homemade-coconut-milk-ice-cream/

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

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.
 
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/banana-blueberry-loaf-gluten-free-low-fodmap/
 
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.

:dance::dance::dance::dance::dance::dance::dance:

Now I will make a sacrifice to the Crohn's gods so that I don't jinx things...
 
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.
 
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
 
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).
 
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.
 
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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.
 
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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))
 
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. :dance::dance::dance::dance::dance:

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. :ybatty:

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

:dance::dance::dance::dance::dance::dance::dance:

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. :ybatty: 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.
 
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 ;-)
 
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.
 
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. :ymad::ymad::ymad: 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.
 
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. :(
 
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.
 
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.

:dance::dance::dance:
 
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.
 
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!!
 
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.
 
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. :eek2:
 
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Thanks for the update Twiggy! It is so fab to hear that your is still doing well, YAY! :dusty:

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

Dusty. :heart:
 
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!
 
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.
 
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
 

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