I was diagnosed with limited systemic scleroderma 4 years ago with the usual positive ANA blood tests. But I still have difficulty believing the diagnosis – there is nothing visible! (apart from Raynauds which I've had for 30 years). My main symptom is non-absorbance of nutrition – I have lost a stone and a half in weight and continue to get thinner every year (barely 7 stone now), it's really alarming. But CT scans and a colonoscopy don't show anything – it's invisible! I'm told I have acid reflux but I wouldn't know it, no symptoms. I am told I have bronchiectasis but again, no symptoms. Just the major change in bowel habits.
Does anyone else have this sort of doubt? And while I'm here, any tips for putting on weight before I disappear completely?!
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volvox45
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Hi,I presume you have a Consultant who specialises in your condition? If so, you really need to discuss the weight loss with them as there must be an underlying reason.
The only "invisible" symptom I had ended up being a clump of cells in my stomach bleeding. I was totally unaware, I had no aches or pain, I was just exceptionally tired plus my blood tests showed I was aneamic.
I lost over a stone in weight in a short period but also had a great deal of muscle loss which has taken years to rectify.
I have Acute Diffuse Systemic Sclerosis.
I had a nutritionist visit me in hospital & I was given booklets to explain what was good for me to eat at that stage. However I did have swallowing difficulties at the time.
In the end after all my treatment I was told to eat a lot of food that is generally not good for you e.g cream cakes etc as I needed to gain weight.
What a lovely time I had, enjoying a good spread of butter, full cream milk & my sweet goodies! Oh Heaven!!
It's taken me 5 years but I'm now back at my normal weight & my muscles have returned so I can enjoy a stroll in the countryside.
I now have a very healthy balanced diet & have learnt which foods impact on my bowels.
I only occasionally eat meat as this does have a bad affect on my bowels so I have been exploring the world of pulses & lentils. I also eat a lot of fish.
Have a word with your specialist to refer you the Nutritionist team & look at your dietary needs.
Good luck with pursuing your weight loss as I know it can be worrying especially with either Limited or Systemic Sclerosis.
Thank you for your thoughtful reply! I saw a specialist… once, in 2020… haven't heard from them since. My local gastro man just says "eat more" when I mention weight – if I'm lucky I'll get another brief review phone consultation in December. I do eat as much as possible, I don't like being this thin!
Probably stating the obvious but have you been checked for type 2 diabetes, thyroid issues and/ or coeliac disease? The only people I know who had dramatic unplanned weight loss had one of those three.
I’ve no tips for weight gain as have opposite problem - tendency to gain despite eating v little - sorry.
But I too have outward sign of SSc apart from red spots on face and hands and late-comer to Raynaud’s. Internally I have Gastroparesis and silent reflux and also delayed transit colon.
Despite having an antibody for SSc (usually diffuse) and the severe digestive issues I’m diagnosed with MCTD/ overlap CTD due to also having Sjogrens - not in antibody but other immunology. I think this type is called Sine where no Sclerodactyl but waiting for information on this from SRUK as none on website presently. It is very rare but that doesn’t mean it doesn’t exist.
Maybe this is what you have too but it seems odd they aren’t monitoring you more closely having diagnosed you. I’d phone the rheumatology department and ask for face to face appointment since it has been over 2 years and you need diagnostic clarity, repeat blood-work etc. if you get nowhere this route then I’d arrange a GP phone appointment and ask them to push for you to get a review as they will have a direct referral portal they can use.
When you say you can’t eat more is this because your appetite has gone awol or do you eat normally? I believe in 10% of cases scleroderma presents first in the gut but needs diagnostic clarity and gastro need to work with rheumatology on this. I too have had weightloss but only because I feel nauseous a lot of the time. Only time I gain is when I have had to take codeine and other constipating medications and/ or have eaten a lot of chocolate.
Maybe if you like chocolate then good quality chocolate is the way forward but meanwhile check out Gastroparesis and other types of dysmotility - which shows up with contrast but not by obstructions or visible inflammation. Your gastro should be sending you for motility tests not just ruling out obstructive causes for your weight loss.
It is amazing how many variations of SSc there are! And I do increasingly get the impression that clinical understanding of it is patchy – I often ask questions that elicit the answer "we don't really know". The sensible answer to all my questions on here is "go back to the Royal Free scleroderma unit" which I will when I have the energy to go through the NHS process of getting a referral. Even they couldn't answer my more detailed questions though.To answer your queries: yes, my appetite is poor but I do try to eat as much as possible, including snacking between meals (and chocolate!). I have had a barium swallow test which indicated normal oesophageal motility and I don't have Gastroparesis. There is nothing slow about my digestion! On the contrary… 3 or 4 poos every day (sorry, TMI) – no wonder I am losing weight, but how to halt the process?
I think it’s quite a concern, or should be, if you are losing weight completely unintentionally. But LSSc would explain this because you can have dumping syndrome resulting in malabsorption and SIBO and CIPO and many other permutations on GI dysmotility. I had same results as you with normal barium and colonoscopy about 5-7 years ago so they told me IBS/ sjogrens autonomic issues. Same with my bladder and blood and muck in pee when scope showed nothing visible wrong internally. They presumed interstitial cystitis and hyperactive bladder. Yet I didn’t show classic signs of either really
So it turned out from a colon transit study, gastric emptying and cystoscope plus trans anal ultrasound - that I had damaged rectosigmoid, very rapid onset of severe Gastroparesis and a tight urethra entrance due to skin disease called lichen sclerosis. It was just the wrong doctors running the wrong kind of tests.
Oh wow! "Dumping syndrome" – never heard of it – is it a literal graphic description of the effects of rapid through-put of food?! 😆 I definitely have that then! I do have SIBO though for sure, as I have been tested, and I have stand-by antibiotics if it gets out of hand.I need to reverse this definitely unintentional weight-loss. I will try and get an appointment with an SSc specialist.
Well then you have clear symptoms of GI SSc just as I do! You have clarity really I think. Limited SSc can evolve slowly I believe.
My specialist isn’t an SSc one but they have done me proud - as have neurology and dermatology. Whereas the gastro and SSc specialist failed me so badly due to underestimating Sine and not retesting my antibodies and plumping for IBS and other stuff I didn’t have.
I can’t get to Royal Free from my area but don’t think there’d be any benefit for me personally as I’m already maximally treated.
I think you're right – I do in fact have clarity, I must accept that. And it sounds as if you have excellent support – the Royal Free wouldn't add anything.
Well this is something only you can know. I think many of us can unconsciously plump for a state of denial because - let’s face it - who wants a connective tissue disease?
And this is especially the case if it’s pretty much invisible to others.
But if our doctors are prepared to diagnose and treat us with such unpleasant conditions with potentially dangerous treatments (at least mine are anyway) - then I think it’s fairly safe to assume that they don’t do so lightly. X
Hi OldTed, I thought I’d message you separately as wanted to ask you about the neurologist you saw. I believe there are some that specialise in digestive problems and wondered how you found him/her? I’m seeing my gp next week and was thinking of pursuing this. Many thanks and also I find your posts very helpful!
Yes that’s fine. Please feel free to private message me and I’ll tell you more but not here on another’s post as it gets hijacked and it’s easier communicating one to one I find 😊
I’ve come a bit late to this discussion but I believe I am in a similar position in some ways to you Volvox45. I have had rnp positive UCTD for about 25years (I’m 69) with mainly swallowing, Raynauds, reflux, oesophageal motility, migraines and mild gut problems. About 5 years ago I started to lose weight and then two years ago the gut problems got much worse and rapid weight loss and muscle wasting.I also developed a prolapse, and bladder problems. Prof Denton believes it may all be limited Systemic Sclerosis. He prescribed antibiotics and I had a Sibo test privately which was positive. They now think I need alternating antibiotics as whereas I was able to go several weeks between courses, I seem hardly to be without the problem. They have still kept my diagnosis as UCTD with scleroderma gut involvement. I think they may not be sure yet and it seems so many variables with these diseases. Like you (apart from my fingers and toes) I don’t have any thickening. The gut problems are awful though and have restricted my life a lot. Like you OldTed I think I might have neurological problems with it as almost as if passing out with weakness and pain during attacks. I still do wonder though if the prolapse has caused this but they are reluctant to operate. I suspect we need to accept the experts and hope it improves. I would love to stuff my face with cakes and cream but all Sibo advice says no which doesn’t help so I try and eat a very healthy diet. I find the Scleroderma nurses at the RF very helpful but it is hard with an appointment once a year. I can get to the RF though but it’s becoming harder and it seems the care you both get already is good. My local area (East Surrey) is not good for these conditions.
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