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FODMAP

my little penguin

Moderator
Staff member
Remember ibs is all about controlling symptoms - there is no damage done inside so it’s just finding foods that trigger the individual

ibd has inflammation and damage so food isn’t necessarily the long term fix

A lot of dietary papers use ibd and ibs interchangeably since the authors don’t understand IBD
 

crohnsinct

Well-known member
Yep! Very useful for IBS but not proven in IBD. One of my daughters did try it but it was to treat SIBO. It didn’t work for her but I think more because her SIBO was caused by her Crohn’s and without fixing her Crohn’s her SIBO was bound to persist.
 
Yep! Very useful for IBS but not proven in IBD. One of my daughters did try it but it was to treat SIBO. It didn’t work for her but I think more because her SIBO was caused by her Crohn’s and without fixing her Crohn’s her SIBO was bound to persist.
How did you find out she has SIBO?
 

crohnsinct

Well-known member
Symptoms are the same as IBS and IBD so it’s hard to flush out what is causing what especially when you are in a Crohn’s flare. Her ileocecal valve is stuck open. That was found on her last scope.
 
Symptoms are the same as IBS and IBD so it’s hard to flush out what is causing what especially when you are in a Crohn’s flare. Her ileocecal valve is stuck open. That was found on her last scope.
I read that een can cause SIBO. :( How do we try to minimize the chance of that happening?
 

crohnsinct

Well-known member
Never heard of anyone getting SIBO from EEN and I have been on here for 12 years and seen A LOT of kids do EEN. ASK THE RD. maybe he/she has some experience with that. Who are you using btw? If you decide on EEN not much you can do it anyway. It isn’t like one formula would be less likely etc. If you have uncontrolled disease that can cause SIBO also, so my bets would be on do whatever it takes to get into remission and take it from there.

Is optimizing Humira still an option? Steroids?
 
Never heard of anyone getting SIBO from EEN and I have been on here for 12 years and seen A LOT of kids do EEN. ASK THE RD. maybe he/she has some experience with that. Who are you using btw? If you decide on EEN not much you can do it anyway. It isn’t like one formula would be less likely etc. If you have uncontrolled disease that can cause SIBO also, so my bets would be on do whatever it takes to get into remission and take it from there.

Is optimizing Humira still an option? Steroids?
Little penguin mentioned in another thread that one potential side effect of een is sibo hence my question.

Venus is our dietitian.

The doc didn't say anything about upping the med so I figured we could try een to (hopefully) speed up the healing process and gain weight as well (fingers crossed). Havent started yet just kinda reading up on side effects to better prep for what looks like a hard journey. Mean time letting him try diff drinks.
 

crohnsinct

Well-known member
Wanted to also ask if you got his Humira levels/antibodies test yet? This should be top priority because IF he is inflamed (we still don’t know for sure as there is no calpro, CRP, imaging etc) you REALLY want to make sure it’s not because his levels are zero or he is building antibodies. If he is, no amount of EEN is going to fix things because you don’t have an adequate maintenance plan. Also, if his levels are low or he has antibodies, you might be putting him through EEN for nothing. A simple med optimization, add or switch might do the trick.
 

crohnsinct

Well-known member
So did the GI order EEN? I am surprised they are willing to wait this long to start. Whenever my girls were so inflamed that they had to go on EEN it was a next day order. No waiting. I am getting very wary of your doc. You need to know what those levels are. Do you have mychart? It would be listed in there under test results.
 
So did the GI order EEN? I am surprised they are willing to wait this long to start. Whenever my girls were so inflamed that they had to go on EEN it was a next day order. No waiting. I am getting very wary of your doc. You need to know what those levels are. Do you have mychart? It would be listed in there under test results.
Its kinda weird actually. The EEN convo was with our dietitian. I'll have to ask the doc tomo to order tests.
 

crohnsinct

Well-known member
Oh! That is weird. How did the dietician bring it up? On what basis did she think he should do this? It is generally something ordered by the GI as it is a medical treatment and treating the disease doesn’t fall under the RD’s realm.

I must be getting old. I thought he had calpro and Humira levels tests done recently or at least had an open order for them.
 
Oh! That is weird. How did the dietician bring it up? On what basis did she think he should do this? It is generally something ordered by the GI as it is a medical treatment and treating the disease doesn’t fall under the RD’s realm.

I must be getting old. I thought he had calpro and Humira levels tests done recently or at least had an open order for them.
Actually it was me that consistently brought up the weight loss. Then our #4 doc wrote in his opinion that additional nutritional drinks should be used then our #2 gave us some Kate Farms samples. From there I scheduled an appt with our dietitian and she recommended PediaSure and against Kate Farms and asked me to choose a brand. I was the one who wanted his weight loss to be addressed and everyone else then followed along. It's been very confusing that's why I am on this forum so much.

I was not told of any potential side effect or now to prep for it since it's been difficult. I am trying to learn here as much as I can.

Your memory is correct! You are not getting old. :) We had some tests done (ordered by #3) over a month ago now but she didnt order the Humira level. :/ We have some open tests but they are like thyroid, vitamins and a capsule imagining.

I just need to ask the doc to order again.
 

crohnsinct

Well-known member
Ahhhh. Supplemental nutrition sounds great. I would go ahead and consider that rather than EEN at this time and continue to push for the Humira levels and the capsule imaging and calpro to figure out what is really going on and take it from there. Maybe after he is consistently getting 3-4 shakes in then the transition yo EEN if needed will be an easy move.
When is your next appointment with the GI of record. Have you chosen which one you are going to go with?
 
i am not so fast to dismiss about fodmaps.....seems like anything that disrupts digestion eggs on the inflammation, then the more inflammation, the more things like fodmaps will be likely to irritate....i am pretty sure they will for chrons tho. if you are bad with it.

i think there is often exceptions to the rules when u understand where they are coming from....like an apple, no way i would even think about it. raw....peeled, whatever just...not even risk that.......but cooked...applesauce to thicken output or sweeten/moisten some muffins or such, it just works.

i am still pretty afraid of the sugars in fruits in general....and with vegetables and cruciforms or this its a delicate thing.......sure gas and some sugars feed some diversity of microbes but.....i am more looking like what i really need from these things........how much fiber balance....low residue things, easy access protein, nutrient value etc..

for fruits im looking alot like.....blueberry, kiwi, papaya, banana, unsweetened applesauce....

it sure is a balance i can see even in my short time so far....if you dont get the nutrition you feed the illness, but all these reasons foods can act as poison which arent usually stated clearly....

trying to gain weight and fear food same time......it is a strong challenge.........i had to sort of phase out some cheat foods, because i check the scale like every time im in the bathroom, so paranoid to loose any weight.....

im finding some things and superfoods and supplements that seem to fit together

or making things seem "sweet" or flavorful by fats and safe spices(ginger, cinnamon, cardamom, vanilla, maybe pinch of clove), then leaning to my few fruits, then finally maple last off i still do sparingly.....

we should have a recipe thread or something....trying to think a few topics alot on this dietary stuff but im still figuring out whats even up with me and priorities ;P
 
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