Scleroderma & Raynaud's UK (SRUK)
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Nutrisips anyone?

Hi,

Has anyone been prescribed these by your GP? I am unable to taste or smell food at all and have very dry mouth and low saliva( sjogrens like symptoms) plus now getting the SSc gerd type stuff in addition, so it's hard to swallow ,and food feels like lumps in my throat, plus digestion is slow and esophagus feels it must be bone dry

I have always eaten well and am perplexed at all this! I'm taking vitamin supplements and probiotics but know my diet is narrow ( I can't chew fruit or salad any more)

I'm going to try the AIP diet but the swallowing and chewing difficulties make eating anything seem quite daunting.

I am in an early ' flare' that's gone on for 18 months ,with only a very recent blood test putting the doctor onto scleroderma.

Does it get any easier? I've read people posting about getting better, and am wondering if this is down to medication,time or both...

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Hi Lilajoe, I experience problems rather like yours, I have MS as well, which has affected my swallowing. I sip iced water, frequently, it helps relieve this symptom a lot, also you can get saliva substitutes. I tend to drink from a straw, which also helps. Ensure, fortisip are very good nutritional supplements, although not many people like them in their natural form!! I would blend them with ice &/or ice cream, fruit, etc & take them with a straw. It's important to sip regularly, rather than trying to swallow large quantities all at once. Drinking sparkling water also helps small amounts of food intake by alternating (soft) foods with a sip of water & so on.

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Thank you for those suggestions. I have some gel and lozenges for dry mouth but still struggle . Anyone tried pilocarpine ?

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works wonders for me dont want to live with out

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take the pill

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Hello there, can I suggest you ask your GP or Consultant to make a referral for you to see a dietician. They are experts in nutrition and will hopefully have advice about how to get all the nutrients you need in the easiest form for you.

Blending vegetables into soups, and fruit into smoothies is one way to get that type of nutrition without chewing. I have sauces with everything and cook stuff down to the mush stage if I find it hard to get down. Constant sipping with meals helps.

I wouldn't be going on any unusual exclusion diets without talking to an experienced therapist. Your scleroderma is not caused by your diet. Even if you were a paragon of virtue and never touched anything bad you can get it. It is however important that you are getting the balance of protein, carbohydrates, good fats and vitamin and minerals you need so supplementation in the form of Ensure, Fortisip and all those types of things are a great addition if your normal diet has become deficient.

All my best

Lucy x

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Thank you! I hope to see a dietician as l know my diet is very limited now, it's worrying me about for to get a full range as I used to.

Thanks!

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It is called Dysphagia & although Scleroderma is not caused by diet, it does cause this problem. The esophagus becomes hard & narrow through it (not in everyone!!!!). It can cause the esophageal muscle to become weak & acid could come up from the stomach. The best treatments have been discussed above, the supplements suggested are definitely the way to go at the moment, as is blending everything. I am a dietitian, but you need to see 1 face to face. You could also try & make sure your posture is good as well, not trying to eat whilst sitting on the sofa, for instance.

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Forgot to say, the AIP diet is not fully researched, so as Lucy said, be very careful about embarking on it. It's difficult to adhere to & very restricted.

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I tried the AIP diet for 6 weeks out of sheer desperation for same symptoms as you plus chronic constipation and severe neuropathy everywhere - all as part of confirmed Sjögren's (although my bloods point to Scleroderma more).

I do have GERD and gastritis but both are reasonably well managed with two Ranitidine a day and the occasional Lansoperazole.

I lost some weight which was much needed - but unfortunately AIP did nothing to help the swallowing issue or the rancid taste, loss of smell and taste and burning lips and gums. Nor did it help the IBS-c or neurogenic bowel (still to be determined).

I saw a GP about ongoing upper abdominal stomach pains and nausea and told him I'd been on this diet. He suggested that I see the dietician and try the low Fodmap diet under their guidance. My appointment isn't until December though - and not yet heard from gastroenterology about an appointment. However I'm reasonably sure that most of my problems are neurological as part of my presentation of Sjögren's - a very MS like one.

What I think about these diets is that they can affect us psychologically if we already have issues around food - whether from dryness, autonomic /sensory or hardening/tightening of tissue. Increasingly I'm becoming phobic about many foods - and crave foods that are probably bad for me and often very hard to swallow. I end up coughing and choking for hours after eating some of these but still I crave them - and am repulsed by foods I used to like. So diets that are very restrictive are really not a good idea for me and have given me no real clue about triggers etc. Smoothies are fine and soup is good in terms of foods I can technically swallow - but living off them for blocks of time means my relationship with food is at an all time low!

I've always been a healthy eater but tend to eat now to get some brief respite from the horrid taste - or drink tons of water with food that's otherwise hard for me to swallow - which bloats me further and washes away the good enzymes in my saliva.

I'm not sure any if this type of dieting is actually helpful - in fact I'm fairly sure it's counterproductive!

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The Fodmap diet is not as restricted as the AIP & more easily followed to be honest. A dietitian would be able to advise appropriately, it is really important for them to see patients face to face as they can discuss, as well as observe, their problems. I am/was a specialised palliative care dietitian, supplements are extremely useful in their diet as they struggle to absorb & swallow the nutrients & foods they need to keep them reasonably well. At least with the Fodmap diet some sugars are allowed, so not too much of a chore! Dietitians are thin on the ground unfortunately, hence the long waiting times to see them, hope you get sorted soon TT xx

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Thank you for all those ideas and practical suggestions . I'm ringing a dietician to get an appointment and going to cut out gluten and dairy in the meantime to see if it assists.

I think the inflammation is ongoing as my hands are swollen and the skin dryness is increasing,so anything l can do to slow it down til the medication is added in,has to be helpful.

I'm very grateful for the advice,and sharing.

LilaJoe x

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