Coffee and Raynaud

[itexpat]

Hello, I wonder what people are doing about coffee. I drink a lot of it, as it does help with constipation, but does it make Raynaud worse? What are people's experiences? Should I just wait till summer to drink coffee and what alternatives are out there? I do not like tea...

[Buttsy]

Hi,

I didn’t realise there is a problem with coffee and Raynauds , I drink coffee everyday. Please, can you explain what the problem with coffee is?

I haven’t noticed a problem .

Thanks

[itexpat in reply to Buttsy]

Hi Butsy, I drink coffe everyday too and I love it. But I read on a number of online sites that "for people with Raynaud's phenomenon, limiting caffeine intake, including from coffee, is recommended as caffeine can cause blood vessels to narrow, potentially triggering or worsening Raynaud's attacks". Hence my question to the community. I sincerely hope that we can still keep drinking it

[Buttsy in reply to itexpat]

Aw thanks for reply,

That does make sense, but I have had no advice about it from GP or Rheumatologist, so I wasn’t aware. Thanks for enlightening me.

Have a good day

[Jacko37]

I drink coffee every day, can't say that it makes any difference. Raynauds wouldn't stop me drinking it

[Tiggywoos in reply to Jacko37]

Coffee ☕️ good for the liver I think ? X

[itexpat in reply to Tiggywoos]

Well i hope so because i can’t really stop drinking it. Thanks

[LadyTrundle]

coffee is good for the fibre in it and the polyphenols. But move over to decaf. Then you get the taste without the constricting of blood vessels.

Or there are dozens of different herbal or fruit infusions you could try, or green tea or matcha. Twinnings do good ones but I think Pukka or Dragontea are best. Pukka Three Ginger infusion is a great boost and also good for digestion as it draws blood towards the gut so the gut is more active.

[Craftyflower]

I've had to move to Decaf so I can still enjoy coffee without the effects. For me I was really addicted to coffee for years and it started causing extreme migraines, which caused additional stress making my raynauds worse. But moving to decaf has really helped.

[Olive12345]

Coffee definitely affects my raynauds…. But also I love it! I drink a mix of caf and decaf now to try and balance it and not push me over the edge!

[UG2025]

Hi I did drink quite abit of coffee, and this yearci have changed to drinking one cup of caffine coffee per day rest of day I drink decaf coffee

I had researched and caffine actually stops collagen production (my reason for retaining one super per day)... I had a wee twitch in my eye that has reduced significantly since I stopped drinking so much caffine

Both my tea and coffee is now 90% caffine free, and i haven't had that many raynauds attacks come to think of it 😅

You could try this and see if it has any difference for you.. I do still get odd blue attack but definitely not as severe

Best wishes

Una

[itexpat in reply to UG2025]

Yes that is what I am doing pretty much now. i have a mug in the morning to wake up and start my working day, but I stick to decaf the rest of the day. I might slip occasionally, when I feel tired in the pm and have to keep working, I might have a moka. It is about trying to find the balance, as people say...thanks

[Chumpy]

Coffee can set my Raynaud's off but at the moment a lot of things seem to I have started to have the occasionally cup of decaf but as I'm also menopausal and struggling to sleep coffee helps to keep me going I'm just trying to get the balance right where I can carry on without loosing the plot 😂

[Spook257]

Coffee does not affect me but I wad told not to drink it in the hours before my nailfold scan.

[itexpat in reply to Spook257]

That is interesting, so it can have an immediate effect that then wears out...I guess we can drink it when we can stay warm in the hours following???

[Spook257 in reply to itexpat]

I don't know. I'd never heard of a link it's just what I was told. I've never noticed anything linked to caffeine.

[Halfwayuphill]

I have one strong cup of coffee every morning and I have to say it can help encourage my sluggish bowels. I do suffer from SIBO and take rotating antibiotics which is getting worse but coffee after a dog walk can work. I’m lucky to have been given a sage espresso machine before lock down which was a life saver as I don’t like instant. Tea I have in bed in the mornings but to be honest I have problems with the taste since I was first ill over 20 years ago so apart from half a cup n the afternoon only have that. My Raynaud’s attacks seem more affected by the cold and my health in other ways. I find more than one cup I cannot cope with though.

Interesting about Spook257’s nail fold scan. I suspect if I drank coffee later in the day it may make my Raynaud’s worse as that’s when I get attacks of chills etc.

[itexpat in reply to Halfwayuphill]

Very similar to my experience. Coffe in the morning ( a lot of it) helps my bowels whcih are very sluggish. I don't think I could give it up. I also get attacks of Raynaud later in the afternoon more often

[Ciaran34]

I drink a ton of coffee in the morning for many years and see no relationship between it and my raynauds - it’s more cold and stress related. Sleep and exercise are really important too so as long coffee doesn’t interrupt sleep. Good luck

[caro321]

I’ve never come across this, but am interested in knowing more. I drink a lot of decaf and a couple non decaf a day, but I don’t think it’s made it worse for me

[OldTed60]

My gastroenterologist asked me about my caffeine intake in relation to gastroparesis and slow transit. At the time I was drinking several cups a day - mostly before noon. She said cut back or preferably switch to decaf coffee and tea. I had noticed that I was getting more nauseous after my morning latte and sometimes with syncope but had thought this was the milk. Not so: caffeine is a duretic can apparently dehydrate and I’m guessing this was what she meant. I do have severe GI dysmotility with my Systemic Sclerosis and Raynaud’s though. My Raynaud’s has definitely benefited from switching to decaf which is a side bonus for me. As some here have scleroderma GI like me I just looked up and caffeine apparently increases stomach acid production which isn’t good for scleroderma

[itexpat in reply to OldTed60]

Hi OldTed60, I think it is a good idea to switch to decaf, at least for most cups. I still need a real coffee in the morning, butI will try to stick to decaf later in the day. A question: when you say you have GI dysmotility, what do you mean? that your GI is sluggish or too acidic, or????? Mine seems to be both, thanks

[OldTed60 in reply to itexpat]

Mine is pretty extreme - it’s called autoimmune dysmotility and I’m at severe end of this due to scleroderma paralysing my gut. This has led to too much acid, malabsorption, faints, low sodium, need for liquid soft food low fodmap diet, cut out caffeine, gluten, acid foods, leafy veg, salads and sugar. I have a stoma so have to avoid blockages, have colitis etc. Unless extreme like mine just focus on eating a well rounded balanced diet and minimal amounts of caffeine, hard to digest food, large portions (little and often is good), red chewy meat, junk food and acid fruits. If you want to know more there are good webinars here on the SRUK about gastrointestinal problems with scleroderma.

[itexpat in reply to OldTed60]

Is sugar bad too? because I find it quite easy to digest sugary foods...thank you for your advice, 😊

[OldTed60 in reply to itexpat]

Yes if you have scleroderma it’s awful! Really triggers SIBO. Says the woman who lives on sugar free sweets and decaf coffee - neither of which are any better in vast quantities. We can but try!! X

[OldTed60 in reply to itexpat]

Two good links to videos - webinar and podcast

youtu.be/nkMfKZ4rgrM?si=5_O...(Not working as expected?)

open.spotify.com/episode/5S...

[itexpat in reply to OldTed60]

Very interesting...and it did work. Thank you very much

[lupie-Cathy]

I find coffee makes me constipated but like you I don’t drink tea, I drink hot water when I want a hot drink but I do have one or two cups of coffee a day but I make an Americano with hot milk so not much froth as it gives me wind! I have a colostomy so my experience may be different to yours x

[OldTed60 in reply to lupie-Cathy]

Ooh sorry to pick up on this but I’m interested that frothy coffee causes you wind?! We have a new froth maker for coffees and hot chocolate as I love the froth of lattes and cappuccinos. But my stoma has been extra “chatty” and I suddenly made the connection with all the air bubbles in the froth! 😃

[lupie-Cathy]

I hadn’t put two and two together until I went out and had a latte after not having one for a while and thought I wonder if it’s the froth that’s causing the wind and or the amount of milk! I’ve changed to having a flat white or americano with hot milk when I’m out and don’t get so much wind so guess it is that for me! Wonder if anyone else has this problem too!