FODMAP... help?

[Buntybear]

Wow, was was he eating?? Has he cramping and gas etc??

[becj86]

He's been having meat and the few veges/bits of salad he could have, GF/DF bread. I guess the only 'maybe' things we didn't cut out were corn and hard cheese - those are low FODMAP but I guess if he was CMPI, maybe the cheese would be an issue   He literally drank only water for weeks. Without the aid of a dietician, I was sticking to the list of allowed foods and not wavering. There's an enormous list of 'avoid' foods, a tiny list of 'eat' foods and a lot more foods to test, as the diet is still in development. http://www.med.monash.edu/cecs/gastro/fodmap/low-high.html

He also won't eat soups/casseroles/porridge which is almost the entire list of alternatives provided, so that made it really tricky.

He has been eating more volume of food because he's been very hungry (that is a common thing with this diet), but no change in the pain - he can't explain it enough that I understand what it is - at the hospital when I took him in, they went immediately to reflux, gave him a liquid to drink which had mylanta or similar and an anaesthetic. Anaesthetic numbed his mouth but didn't touch the pain in his tummy. Then they thought maybe an ulcer, had a scope look all through his stomach and the top 1/3 of his intestine but nothing showed, no damage from reflux/ulcers. Not even inflammation. There's nothing in all his bloodwork, nothing showed up on the CT scan. So he stopped going to the doc and just got on with life. After another 2-3 months, he went to see his doc who said to try this low FODMAP diet to see if it helped, diagnosing IBS which is the diagnosis of exception.

There isn't any particular food that makes it better or worse that he's been able to detect. He puts up with so much I can only tell he's got the pain when he's so bad he should be in the hospital, yk? He's a soldier on type, not a man-flu kinda guy.

[Buntybear]

Oh gosh that is so sad  nothing at all showed up in the tests? It must be something to do with the muscles contracting then 

Only thing I can suggest would be the dairy free x

[becj86]

Nothing at all in the tests, he was admitted to hospital for 2 nights and they did heaps of tests and found nothing. Maybe it is to do with muscles That's my understanding of some cases of IBS. I don't think he'll try anything else diet-wise now unless he's still in pain after taking the domperidone for a month or two. He was feeling better on that, so maybe it was stomach cramps or something but I'd love to know the cause and eliminate that rather than having him on meds to control symptoms, yk? Meds are definitely better than nothing though.

Thanks

[Buntybear]

So the pain is in his stomach not his bowel? That domperidone seems to be for refluxy problems rather than IBS? Still I am no doctor and as yu say in the absence of a diagnosis some meds to help are better than nothing.

[becj86]

It is up high (central, just below the ribs) which is why the docs thought stomach ulcer initially. Then they just kept on with the idea of digestive tract and found nothing. Any pressure anywhere on his abdomen increases the pain though It doesn't make a lot of sense in my limited knowledge of anatomy. Not sure what the domperidone is actually doing for him - I mean I know its making food go through his stomach faster, but what is it achieving that's making him feel better? Reflux meds (he was on losec for a while) don't help.

I'm starting to wonder about an inflamed diaphragm.

[Buntybear]

Oh, I thought it was his bowel and that is why I thought IBS. I am going to be no help then. Just really sorry 

[ZacsMumme]

Eosophigous encephalitis? (Prob spelt that wrong!)
Could it be heart related?

Hugs - must be so hard on him!

[becj86]

Oh, I thought it was his bowel and that is why I thought IBS.

Docs thinks its bowel too - hence the low FODMAP diet. They have gone there from stomach, not looking for other things around the stomach.

Now you mention the heart thing, maybe. He collapsed about 7 months ago and they couldn't find anything wrong then but their first thought was heart

Oesophagus is fine - camera has been through the whole thing on the way to his stomach and no damage was found.

Thanks for caring

[ZacsMumme]

must be hard on him! and you Hun.
Are there any heart or even lung checks they can do to tick off underlying issues? No idea what though

[becj86]

They did some basic heart checks when he collapsed but found nothing I think since its chronic, they don't really know what to look at. He's feeling worse now, been off low FODMAP a week and back on domperidone since Tuesday. It is hard on him, poor fellow. Have suggested just dropping gluten or dairy and giving that a go but I really think a dietician would be more helpful than me just winging it.

When I google his symptoms, it comes back with cancer... pretty much everything does though, right?

[ZacsMumme]

hugs, google can be a blessing and a curse can't it
Is he currently under a specialist or go? - if your concerned about cancer and don't have a refferal for a specialist or anything like that I would just get him back to the dr to ask for a refferal .. Just be that pushy pita wife... Even though it's unlikely - well we all hope it's definately not! But it's his health YK...and if things are not getting better and messing with his day to say life because he feels ill, or can't eat well, or is in pain then he needs to be seen again.

so many hugs

[becj86]

He's seen an emergency doc, a GP, a gastroenterologist... I will push for another, more thorough doc if he's still not feeling better after a week on the domperidone. Its crazy to be in such pain all the time.

[ZacsMumme]

so sorry he's not got a diagnosis