IBS

[pauld]

our 19-year old daughter occasionally goes through spells of severe abdo pain, sometimes starting in her side. Several causes have been mentioned, from appendicitis operation adhesions to gallstones to endometriosis! Certainly her periods are very irregular, currently bi-monthly despite medication. Problem seems to be nobody looks at the whole person, each specialist sees the person through their own window and the GP doesn't have the time or expertise to join them all together. We really want to relieve her of contact pain/discomfort - anyone with similar experiences please?

[gillycharlie32]

Elosie

Sorry I can't help there. My dietician simply emailed me saying that there was to be a new clause in the guidelines that would allow for someone with 'established gluten sensitive enteropathies' presumably linked with gut dysmotility and EDS in my case to be permitted GF foods on prescritpion. This had been after much toing and froing between the PCT, ACBS and the hospital.

Whether this is going to be made common knowledge or not remains to be seen but if it can happen here then it should be rolled out across the country of course. At the same time I'm hearing that all but flour, bread and pasta is to be removed from GF precscriptions shortly and has already happened in the South East of the counrty. However, Coeliac UK is working hard to address this.

I don't know one minute its all go then it's all about face again. I shall be happy just to get flour and pasta though if possible.

Gilly

[Eloise]

Yeah - the ACBS indications are -

established gluten-sensitive enteropathies including steatorrhoea (excess fat in feaces) due to gluten sensitivity, coeliacs disease and dermatitis herpetiformis

. I think most prescribers ignore the first bit as they have no idea how to test for the "steatorrhoea due to gluten sensitivity". But if your dietitian is willing to do a trial and test for it - then that is a step forward, and hopefully other areas will.

However, this is still a quite specific severe problem tested for by unabsorb fat in the feaces, and does not include people who find that gluten free diets help their IBS or other problems. I don't know how many people with gluten intolerance will actually fall into that group (or with gut dysmotility) - but it is definitely worth being tested for.

There is a national list of foods that can be supplied on prescription, and I don't think there are any plans to change this - but many individual PCTs are limiting what they fund - especially the "treats" - i.e. cakes - as they don't want to be seen as funding unhealthy lifestyles. I think it is only one PCT in the south-west that are being really mean as they are under financial pressure! As for what will happen when PCTs are changed into GP consortiums I don't know - some maybe more understanding - but I guess most will see at as an area to cut costs. Personally I would like to see a scheme where they give people vouchers so they can buy whatever they want from shops and it funds the difference in price due to it being gluten free. That way people can buy fresh when they need and there will be less wastage. But hey - I don't run the country!

[gillycharlie32]

Yes, I've seen the lists and was appalled that some of the items available are actually twice the price that you can purchase elsewhere. An example is rice flour which is being charged to the NHS at around £3.20 for 1kg. I could buy this for only £1.50 at a local indian wholesalers. What a terrible waste.

Well, we'll see what happens when I pop to my GP next week. Whatever has been found amongst the guidelines has obviously been agreed as a trial basis so I'm not going to complain. Personally I have no need for the sweeter things as these exacerbate my problems anyway so it would just be flour, pasta and possibly some crackers for me.

I was also dismayed to hear that despite Aziz and his team now fully recognising that gluten intolerance is a regular problem with EDS they also say that this has not been accepted by many other specialists. What is the point exactly of one of our top gastroenterologists documenting this observation only to find that it is not taken on board by others in the field?

If it were sopme back-street quack I could understand this but their information comes from lengthy research and is also clearly explained by their knowledge of gut dysmotility. I despair sometimes as to who is to be trusted, how the 'patient' is to be supported efficiently and why shifting paradigms is such a huge business.

Onward and upward.
Gilly

[evenwen]

I'm wondering if this can be part of HMS and if so what the causes might be? do gastro problems occur with HMS?... over the last year or so my tum has got bigger and bigger to the point i look pregnant but i have not actually put weight on anywhere else or as far as the scales show.

I was told it was IBS/water retention, blah, blah for ages. Is it just swelling, or are there other gastro symptoms (nausea, pain, wind, constipation/diarrhoea)?

Check out the Thread on gastro at St. Barts. I posted about my symptoms at the beginning of it and still get over six inches on my stomach whenever it decides to creep back. I own maternity wear for that very reason

[ecomum2]

Do any1 else have the problem of if they're lying in bed and need to burb, they have to sit up to be able to? as thats always been a problem for me and really anoying when Im exhausted anyway?
It also happened when my kids were babies as after I'd breastfed them in bed at night they cry with tummy pain the next day if I hadn't sat them up in bed after feeding and burped them. They couldnt burp lying down! I asume its to do with the colon being looser and the air cant get out lying down???

also I find I can only eat small meals several times of day. do you get that too? and Im quickly hungry then

also Ive always been the last to finish a meal. I asume thats also to do with a 'complicated digestion'?

[gila]

I always thought "only/better burping upright" was normal and that's why with all babies you do that burping them "over your shoulder" after a feed ?
but I did have probs with not being able to burp at all at times- which brought me evil one sided headaches and dreadful nausea, which only got worse when I tried to move- which seems to have been due to too much acid in my system- as when I take ppi s I dont get that.
xxg

[Eloise]

I spent most of last night having to keep sitting up to burp! Is this not normal? - yet another thing to add to the list of my unknown weirdness!

[Rosie]

Hi all

I do think that , as in babies, our lax tissue means that we sometimes need to straighten our oesophogas in order to help release trapped wind, or it may be to do with the stomach or sphincter position in relation to teh stomach that means that we need to move to another position to burp.

Rosie

[evenwen]

It isn't just for burping, either! I was quite shocked when a physio explained the "optimal pooing position" for bendies, but even more so when I gave it a go and discovered how much air was coming out...

[Rosie]

oh yes, did that involve making sure your knees are higher than your thighs so that the pelvis is at the correct angle? ALso useful for making sure your bladder empties completely.

Rosie

[evenwen]

Yup, that's the one. I had never been told I needed to sit up straight (the optimum for non-bendies) and had always been perched on the edge bent over till my chin was on my knees.

Sit back until against the lid (way easier now no men live in the house ) so pelvis supported. Everything at right angles (like good chair use) then something under the feet to elevate the knees. I bought a kiddie loo step, but sometimes use an upturned bucket (tres glamourous and i've yet to find anything transportable).

Still have to resort to leaning on a bad day, and twisting to the left. Moving upper body up and down does help, as I guess the dysmotility is so strong at these times only the motion will move things. In the main though, this position made a significant and positive change to me and I wish more physios told their patients things like this. I got more info from that lady in a few sessions than I have ever had from anyone else, bless her for it.

[Lou661]

Only too aware of this, "toilet position" is one of the reasons I have a gym ball in my bathroom. When me knees are feeling up to it I can use it to put my feeton and it squishes down to the right height for optimal positioning, when they're having a "don't even think anout bending me" day I can lift my legs up and rest them on the gymball and still have a reasonable position that helps. The gymball is also great when bathing bubs as I can sit on it and be aat the right height without having to kneel down...but that's a bit off topic

While I'm here has anyone else with IBS/IBS like symptoms ever had an increase in/started having rectal bleeding when taking co-codamol ? I norally get some rb a few times a year which my GP has put down to heamarhoids during a constipation cycle in IBS (which I only have a tentative diagnosis of, still never been able to work out if it's food or stress related despite food diaries etc) but since taking co-codamol I've noticed I've been getting almost constant bleeding even when I'm not constipated, and sometimes even without having a BM. It's one of the things I'm bringing up the next time I see him, just wondered if anyone else had noticed the same?

[ciderpig122]

yes. I can fill the toilet bowl with fresh red blood when taking co-codamol. even to the point where it comes through my trousers when walking about

The pain is abslutley crippling now

[sheppeyescapee]

I'm not sure about the rb I only tend to get it when I have the diarrhea part.