Xylitol study: Hello everyone, I... - Scleroderma & Ray...

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Xylitol study

Duck33 profile image
6 Replies

Hello everyone,

I posted here recently looking for ideas for combating acid reflux, and I mentioned how I use Xylimelts for dry mouth, which seem to help with my acid reflux.

This week, I read about a study suggesting a possible link between xylitol and cardiovascular issues.

Obviously, if this is true, it would be concerning as dry mouth products containing xylitol are helpful to so many of us.

I did a bit more searching and found this article from the Sjogren's Foundation (July 2024), which you may find helpful.

As the rheumatologist in the article says, a lot more research is needed on this issue .

And also, the amount of xylitol in the products we use is relatively small compared to some of the levels they tested in the study.

I really hope they do more research soon, but in the meantime, I felt I should share this article, especially after I talked about Xylimelts in my last post.

All the best, guys.

sjogrens.org/news/2024/rese...

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Duck33
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6 Replies
Lausanjuk profile image
Lausanjuk

Hi Duck33,

Thank you for both this post and your earlier one.

I've recently started using Xylimelts at night, and I was really interested to note your comment about it possibly reducing your reflux symptoms. I've got scleroderma and I had a 5 month long episode of oesophagitis last year, so I'm keen to do all I can to prevent that from happening again! I had started on the Xylimelts for dry mouth, but I was interested to see that there might be a possible beneficial side-effect. I do notice that I swallow more during the night, so I wonder if it's to do with that?

And the link you sent is very useful; it just underlines yet again how we need to do our own research and understand the bigger picture. I happen to have a rheumatology appointment next week, so I can mention the fact that I'm using the Xylimelts and see what they say.

Thanks again for sharing.

Duck33 profile image
Duck33 in reply toLausanjuk

Hi Lausanjuk,

Thanks so much for replying. I’m really grateful. I hesitated to post the link as I didn’t want to worry everyone. I’d be so interested to hear what your rheumatologist says. I’m not due to see mine until December.

So sorry to hear about your episode of oesophagitis last year. Really hope it doesn’t come back again. I’ve been having a bit of a flare up myself, and I’ve been trying to resist going back on PPIs. It’s settled a little, but I’m still getting the horrible mucus throat. And always have the dry mouth. I tried a mad thing tonight… rinsing my mouth with olive oil. It did help a little. Not as good as the Xylimelts, unfortunately.

As you say, personal research is crucial. Though I find it a little frustrating sometimes that there seems so little on the horizon. I read about a scleroderma research group in Leeds and I signed up to find out more.

Thanks again for replying. It means a lot.

All the best.

OldTed60 profile image
OldTed60

Hi there. Thanks so much for this post with link. I had read the same thing on the American Sjogren’s forum - but have not yet read the link. The poster did point out that the heart issues are associated with far higher levels of Xlytol than most us us will use. But, with both Scleroderma and Sjogren’s, dry mouth and throat is one of my most hateful 24/7 symptoms so I do suck a lot of different sugar free sweets, mostly sorbitol and stevia. I just have 2 Xlymelts overnight now, partly due to the research you have flagged up but also due to having two adorable canine fur babes, for whom Xlytol is a known killer. Interestingly my teeth have suddenly got terribly eroded and my dentist thinks it’s my silent reflux, despite PPI and famotidine and a soft, low fodmap diet. So I’m not too worried about the heart problems as had my echo earlier this year and all was fine. But, having just started Rituximab as well as mycophenolate, I really don’t want even more loose crowns and dental erosions if I can possibly avoid these.

Duck33 profile image
Duck33

Hi OldTed,

Thanks so much for getting in touch. And so sorry to hear about the tooth problems. Dry mouth is detestable. I’m sure it’s one of the main causes of reflux, too….a lack of saliva to neutralise the acid. It’s an exhausting battle sometimes, isn’t it.

The Xylitol report is concerning, even though, as you mention, some of the participants in the study seem to have been consuming higher levels than we would get from the likes of Xylimelts. Definitely reassuring. Meanwhile, I’ve been searching for any alternatives but it seems that most products contain alcohol sugars in some form. Frustrating! But my search goes on.

Not to worry. The support from this community is very comforting.

Wishing you all the very best. And hugs to the pups. :)

Castella profile image
Castella

Xylitol upsets my scleroderma gut.

Duck33 profile image
Duck33 in reply toCastella

Hi Castella, thanks for messaging. Yeah, I’m wondering whether it was upsetting mine, too. I read it can cause problems. Thanks again.

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