Weight loss

[volvox45]

I was diagnosed with limited systemic scleroderma in 2018: one of the first symptoms was dramatic loss of weight – nearly a stone and a half in six months. The problem is that my guts don't absorb nutrition adequately; the more I eat, the more I poo (sorry). I must stress I don't have diarrhoea, just fast throughput. Four years on and I'm still very gradually losing weight – now just 7 stone and I look very thin. Does anyone know if there is any medication that would improve the absorption capability of my guts? The only suggestion from the gastro specialist is one of those complan-type foods which is disgusting and doesn't work because it goes through me in the same rapid way as all the proper food I eat!

[Tiggywoos]

So sorry to hear how poorly you are .

There is a test for instrinsic factor which will show if you have enough of a certain enzyme in your gut but I think it’s only to check if you’re absorbing B12 .

Have you mentioned it to the rheumatologist?

I have also lost weight but I won’t mention it to Drs as all they say is eat more.

There is a lovely powder I used after bowel surgery called L glutamine . It’s from a company called higher nature . That is more to heal the gut though but might be worth looking into .

You mix it with juice or water . Not sure about probiotics and whether they help with absorption ?

Thank you for posting and I’ll do some research myself to find out if there is anything that can help us xx

[volvox45 in reply to Tiggywoos]

Thanks, Tiggywoos. Yes, I mention it to every medic I encounter, and as you say, all they can suggest is I eat more or try the complan stuff. And probiotics – tried them. No difference. I'll think about L glutamine, thank you!

[Hidden]

Have you thought about seeing a nutritionist - they are trained to deal with this kind of thing. Do your research though and find one who is familiar with autoimmune diseases.

[volvox45]

No, I hadn't actually. I should try that. Good idea. I always think I have an excellent diet but perhaps someone with specialist knowledge might have other ideas!

[Tiggywoos in reply to volvox45]

Let the forum know if you do find an nutritionist with experience of treating gut disorders in connective tissue disease xx

[cowhide in reply to volvox45]

You definitely need to speak to a dietician or nutritionist - can you ask your gastro consultant to refer you to one. If more of your food is passing through you then you may not be absorbing enough of key nutrients. So no matter how well balanced your diet you can end up malnourished. My gastro has said I must tell him if I start losing weight, but he is clinical lead in intestinal failure with decades of experience.

[volvox45 in reply to cowhide]

Thank you Cowhide, you are absolutely right, I don't know why I hadn't thought of that before. When I get to see my gastro man next (and who knows when that will be?!) I will ask him to refer me. Personally I think he should have thought of that himself. Can I ask who your gastro specialist is? I'm in London so should have access to a huge range of experts! But I am struggling…

[cowhide in reply to volvox45]

Dr Jim Stewart at Leicester University Hospitals Trust. Lovely chap, very down to earth.

[volvox45 in reply to cowhide]

Lucky you!

[Halfwayuphill]

Hi Volvox45,Have you been tested for SIBO? (Small intestine bacteria overgrowth). I have had UCTD for years but started loosing weight a few years ago and then at the same time as developing bladder and prolapse problems started having nausea bloating pain and more dramatic weight loss. I now weigh just over 7 stone but it seems quite stable. I’m very weak though. Prof Denton suggested it could be limited Systemic sclerosis and it could be bacteria overgrowth. He suggested antibiotics. These helped but I now have rotating courses as it comes back. He’s also suggested Dioralyte in case its low electrolytes causing the dizziness and weakness. There is a test for SIBO but long wait on the NHS. (Hydrogen breath test). I had it privately from a herbalist/ nutritionist I consulted. I also have slow transit and alternating fast through put/constipation. My diagnosis is now mild scleroderma (gut issues) UCTD now. The Professor also believes the bladder/ prolapse problems are caused by weakness from the Scleroderma.

I do hope you find some answers/ relief

[volvox45 in reply to Halfwayuphill]

Yes, I was tested for SIBO at the Royal Free a couple of years ago (definitely positive!) and seen in Prof Denton's department, though they didn't tell me anything/suggest anything that my own hospital hadn't already. But thank you, Dioralyte is a good idea and can't do any harm, so I shall get some and see if it helps! It's the weight loss that bothers me most.

[LadyTrundle]

Hi Volvox45. So sorry to hear your difficulties. I have (almost) the opposite problem to you - very slow transit and recently increasing weight that I would actually like to stop/ reverse! However, I do also have very soft motions that lead to incontinence ... and FINALLY! after reporting it for a few years, I was prescribed Loperamide to make things linger a bit longer in the gut and come out more firmly. Not the over the counter stuff you take for diarrhoea - that was too effective at blocking me up! I have the loperamide linctus for children, and only take ½-1 teaspoon per day, but it des seem to have stabilised.

Background: 38 years ago I developed ulcerative colitis, pretty ill, hospitalised, steroids etc. Over the years I've controlled it and at the most recent colonoscopy a couple of years ago was told there wasn't really any sign of it at all in there. I have been left with irritable bowel symptoms though, of which the above is the troublesome one. And during those years I've had periods of being vegetarian/ pescatarian/ then the Atkins diet (on which I felt fabulous!). A few years ago I started projectile vomiting if I ate solid meat ... self-diagnosed as low stomach acid due to high dose of omeprazole, and I took an intensive course of high quality (Solgar) digestive enzymes for about 9 months. Sorted.

I've always tried to eat a very varied plant-based diet, even if meat or fish creeps in a few times a week ... which is the opposite of what we're told to do for UC or flare ups. Recently I've been impressed by Tim Spector and the Zoe Nutrition findings (operate to their Covid app work) about the microbiome and how it's important to nurture it as the gut is one of the main power houses of the immune system - and therefore a depleted microbiome can spark or worsen autoimmune conditions. So you might want to read (or listen to Youtube/ Zoe podcasts) to understand and think about ways to support a healthier microbiome ... or my 1.01 summing up is: huge variety of plant sources every week; ring the changes in that variety as well; food that is as little processed as possible; avoid additives as much as possible (goes along with low-processed food); organic as much as you can; eat fermented foods - eg kombucha, keffir, good plain live yoghurt, kimchi, sauerkraut ...

BUT, investigate first and start with very small amounts of the fermented things as until you acclimatise it can promote looser stools! And can lower blood pressure.

I do feel that inadvertently, by having a very varied plant diet and yoghurt (even before hearing about the microbiome) I may have help the fading away of my UC.

There's also a book 'Eat to Beat Disease' by a Dr William Li that is much more specific about foods that will help (or harm) certain conditions ... but it is huge and I'm only ¼ through it so far so haven't come to the recommendations yet!

BUT BUT - whether the loperamide or the miscobiome, do tell/ ask your GP and the GI consultants in case your own condition is very different.

I've been with the GI team at UCLH in London since the mid-90s. Pretty good care and great specialist nurses when you need to ask questions. But a bit less hot on Scleroderma (they've heard of it and make some connections but it's rather in the background for them). And I don't think the last one I had a phone call with had really heard of the microbiome - or had heard of it but doesn't get time to read the research.

Hope some ideas here help - good luck.

[volvox45]

Thank you LadyT, what a comprehensive answer! My diet does already follow your suggestions apart from the fermented things which don't appeal very much, although I do eat yoghurt. I'm a great fan of Tim Spector so will try and listen to Zoe's podcasts. Scleroderma, alas, doesn't have a cure yet, and treatment only for symptoms – of which losing weight is one I could do without!

[OldTed60]

I would agree that it may be sometimes apparently healthy in your diet that doesn’t suit your specific/ unique gut biome. There was a post about this on a different community - maybe lupus uk? I have Gastroparesis and slow transit colon as well as the oesophageal problems associated with systemic sclerosis and Sjogrens. I’m on a strict low fodmap soft/ liquid regime with a prescribed nutritional supplement thrown in daily. I’m lucky so far that I don’t need peg feeding as I manage okay with help of a prokenetic, sticking to low fodmap and having an Ensure plus daily. The diet is pretty awful to my mind - very unwholesome compared to what I’ve spent my life eating ie now no salads, greens, only a peeled piece of soft fruit in a homemade smoothie milk shake daily plus a mug of cream of chicken soup (part homemade) and rice cakes. It’s like being an infant again! I also have to use a bowel irrigation system daily with some liquid stimulant laxative.

All this is extreme but it does really help and I’m not being sick or getting constipated/ impacted now and my weight is fairly stable. Might be worth having a go at cutting out fodmap foods and see if this helps?

But also ask your GP to refer you to a dietician who can prescribe a nutritional supplement such as fortisips or ensure plus so that you are getting the right amount of vitamins daily.

monashfodmap.com/

[volvox45]

As explained to me by specialists, the SSc has altered the lining of my gut to the degree that I am not absorbing food properly and have SIBO, so no amount of changing my diet can alter that fact. I think the best advice is to ask to be referred to a dietician asap to see if I am missing any essential nutrients, and to think about taking dioralyte in case I am short of electrolytes.Thanks all!

[Kevyneg]

Read up on the Plant Paradox program. Based on Mediterranean diet. U lose weight at first, but it heals the gut. I am gaining back.