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Anyone Else Have Raynaud's Phenomenon?


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#1 Mack the Knife

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Posted 23 July 2010 - 04:34 PM

I was diagnosed with coeliac 6 months ago. Since then I have been following a strict gluten free diet but haven't improved much. I've also developed a recurring rash on my scalp which I suspect might be DH.

About the time I was diagnosed I started getting numb fingertips on my left hand. This has worsened over time. Now I get varying degrees of numbness in my left hand fingers extending up the side of the hand and arm to the elbow. I've also started getting occasional numbness on my right hand's fingers and the toes of both feet - but not as badly as my left hand. I've also been getting joint pain occasionally in my knees that co-incides with the toes numbness.

My extremities have always been prone to getting very cold. But this last month I've had two occurrences of all my fingertips going completely numb and bone white. Except under he finger nails which went dark purply/black. It freaked me out because it looked like frostbite for no apparent reason.

I went to see my doctor and specialist and it turns out I have something called Raynaud's Phenomenon which is an autoimmune disease that affects the blood flow to the the body's extremities, ie fingers and toes. My specialist says it has strong links to coeliac like a lot of other auto-immune disorders and that getting coeliac probably triggered it.

http://en.wikipedia.org/wiki/Raynaud's_phenomenon

Does anyone else have this? I've been googling pictures of it and I've convinced myself that my digits are going to become gangrenous and need to be amputated. The internet is a dangerous thing.
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#2 kareng

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Posted 23 July 2010 - 04:45 PM

Hey Mack! My bro has this & he is 44 with all fingers and toes intact. The main concern is when its cold, he must make sure to keep his fingers warm. This is hard when skiing but he works it out. He always had cold fingers and toes, even as a little goober. His normal body temp when you take his temp orally is always 2 degrees lower then others. He gets a sort of weird coloring when his hands go from hot to cold. Like it went pale and has a flush. Your dance partner ever complain your hands are cold?
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#3 lucia

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Posted 23 July 2010 - 04:49 PM

I imagine it's really scary. I was really scared that I'd have neuropathy for life, since it doesn't always resolve on a gluten-free diet, so I can relate.

One suggestion - not one that your doctors will make: find an acupuncturist. Acupuncture has been amazing at resolving my neuropathy.

http://www.ncbi.nlm....8?dopt=Abstract
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#4 tarnalberry

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Posted 23 July 2010 - 04:58 PM

I don't have Raynaud's, but have recently learned that the same sort of thing - vasospasm - can occur in the nipples of women who breastfeed. And I have it. It is NOT the autoimmune condition that Raynaud's is, but is thought to also be affected by an overactive sympathetic nervous system (something that acupuncture seems to be able to work on). A friend who has it must be very careful about keeping hands and feet warm when hiking, particularly in the snow, but has managed it quite well so far. I don't know if staying on the gluten free diet will "resolve" anything there for you, but it certainly won't make it worse.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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Bellevue, WA

#5 kareng

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Posted 23 July 2010 - 06:51 PM

I don't have Raynaud's, but have recently learned that the same sort of thing - vasospasm - can occur in the nipples of women who breastfeed. And I have it. It is NOT the autoimmune condition that Raynaud's is, but is thought to also be affected by an overactive sympathetic nervous system (something that acupuncture seems to be able to work on). A friend who has it must be very careful about keeping hands and feet warm when hiking, particularly in the snow, but has managed it quite well so far. I don't know if staying on the gluten free diet will "resolve" anything there for you, but it certainly won't make it worse.

Oh Tiffany! I have both hand crossed across my chest! How awful! Can you work around it? Mack probably doesn't want to read about our breast feeding trouble. :P
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#6 tarnalberry

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Posted 23 July 2010 - 10:08 PM

Oh, what's a little thread hijack? :P
While there are meds you can take for it (nifedipine), but we're trying OTC methods at the moment - keep the nipples covered outside of nursing, apply warm compresses (oh, that's fun in the summer), avoid getting cold (I'm wearing socks most of the time now), ibuprofen when necessary, upping magnesium intake, and trying to work on the mechanical trauma from poor nursing (we've been working with an OT and a PT for our daughter, besides the MD who dx'ed the vasospasm and recommended hydrocortizone ointment to help reduce the inflammation that the trauma is causing which could contribute to the vasospasm).

If it gets to a point where it's just untenable, well, there's always relying more heavily on pumping. It does mean, however, that my daughter may not get to self-wean as I had hoped, and I'll be looking at weaning her off after a year. While I'm disappointed about that, I hadn't been certain if we'd be able to continue breastfeeding at all, given what the pain levels were, so I'll take this as a perfectly acceptable second choice.

Anywho... a little nipple-centric thread drift there... (First time moms, I have discovered, have their lives revolve around their boobs and their baby's mouth until the feeding thing is figured out, which may only be a week for some, but for others is three months (or more).)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#7 Jestgar

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Posted 23 July 2010 - 10:27 PM

I do have this. The key is to keep warm, not just your extremities, but your whole core.
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#8 Mack the Knife

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Posted 24 July 2010 - 03:05 AM

Hey Mack! My bro has this & he is 44 with all fingers and toes intact. The main concern is when its cold, he must make sure to keep his fingers warm. This is hard when skiing but he works it out. He always had cold fingers and toes, even as a little goober. His normal body temp when you take his temp orally is always 2 degrees lower then others. He gets a sort of weird coloring when his hands go from hot to cold. Like it went pale and has a flush. Your dance partner ever complain your hands are cold?


Yes, all the time. And my girlfriend does have a tendency to shriek when I touch her. It's not the response I'm really looking for although it does have it's amusement value.
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#9 CarolinaKip

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Posted 24 July 2010 - 05:12 AM

I was diagnosed with coeliac 6 months ago. Since then I have been following a strict gluten free diet but haven't improved much. I've also developed a recurring rash on my scalp which I suspect might be DH.

About the time I was diagnosed I started getting numb fingertips on my left hand. This has worsened over time. Now I get varying degrees of numbness in my left hand fingers extending up the side of the hand and arm to the elbow. I've also started getting occasional numbness on my right hand's fingers and the toes of both feet - but not as badly as my left hand. I've also been getting joint pain occasionally in my knees that co-incides with the toes numbness.

My extremities have always been prone to getting very cold. But this last month I've had two occurrences of all my fingertips going completely numb and bone white. Except under he finger nails which went dark purply/black. It freaked me out because it looked like frostbite for no apparent reason.

I went to see my doctor and specialist and it turns out I have something called Raynaud's Phenomenon which is an autoimmune disease that affects the blood flow to the the body's extremities, ie fingers and toes. My specialist says it has strong links to coeliac like a lot of other auto-immune disorders and that getting coeliac probably triggered it.

http://en.wikipedia.org/wiki/Raynaud's_phenomenon

Does anyone else have this? I've been googling pictures of it and I've convinced myself that my digits are going to become gangrenous and need to be amputated. The internet is a dangerous thing.






I have Raynauds. I had this for three years before finding out I was Celiac. I have the most trouble with it in the winter. I have to do outside duty at my school and have to wear three pairs of gloves/two coats etc. I bought some heavy duty ones! I also have trouble with my toes sometimes if it's very cold. I have trouble with it in the summer if the air conditioner is really cold. So, I bring a jacket and gloves when shopping. I find that I am really sensitive to any type of cold. Sometimes I have had all fingers totally white! When my fingers warm up, they will be a rosey purple. It is painful! My sister has lupus and has raynauds as well. We protect our hands and feet so far no damage to them. Sometimes the internet can be our friend or scare us to death. Hand and feet warmers that hunters use are helpful in the winter!
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#10 RiceGuy

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Posted 24 July 2010 - 05:57 AM

Magnesium and B vitamins (especially B12) have helped me quite a lot with cold extremities. Various other nutrients can help as well, such as zinc and omega-3s (flax/fish oil). Since going gluten-free and taking supplements, I don't even notice it anymore, and I'm not sure if it's still there at all. Never knew what it was called, or that there was even a name for it, until a few years ago.

I don't have Raynaud's, but have recently learned that the same sort of thing - vasospasm - ...<SNIP>... It is NOT the autoimmune condition that Raynaud's is...

Last I knew, the actual cause of Raynaud's has not been determined, though the presence of some autoimmune diseases may be used in the diagnosis, according to the Wikipedia article. If there has been some more recent research which has shed light on this, please post a link if you have one.
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#11 ravenwoodglass

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Posted 24 July 2010 - 06:32 AM

Here is a good link to Raynaud's from the NIH. Anything in Wikipedia should be taken with 'a grain of salt' they may have some good info but IMHO going to a medical related site is better.

http://www.nhlbi.nih...d/ray_what.html
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celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
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Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#12 tarnalberry

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Posted 24 July 2010 - 12:19 PM

Magnesium and B vitamins (especially B12) have helped me quite a lot with cold extremities. Various other nutrients can help as well, such as zinc and omega-3s (flax/fish oil). Since going gluten-free and taking supplements, I don't even notice it anymore, and I'm not sure if it's still there at all. Never knew what it was called, or that there was even a name for it, until a few years ago.

Last I knew, the actual cause of Raynaud's has not been determined, though the presence of some autoimmune diseases may be used in the diagnosis, according to the Wikipedia article. If there has been some more recent research which has shed light on this, please post a link if you have one.


It was based on the information that my doctor told me.
And yes, she also mentioned that magnesium is important for managing vasospasm as it is required for vascular control. She suggested at least as much magnesium as calcium in my diet/day, if not more.
BTW, it's not cold extremities that is Raynaud's, it's the vasospasm that pushes all the blood out of the extremities (usually turning them white and or blue) and then the rush of blood back in (sometimes turning them purple before returning to normal) that is the problem. It not only causes a lot of stabbing pain (think of what it feels like when a foot you're sitting on falls entirely asleep, and then wakes back up), but the lack of blood flow during the vasospasm puts the extremities at risk of cellular damage. Cold just happens to be a triggering factor for many people. (But it's not the only one.)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#13 mamaw

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Posted 24 July 2010 - 02:25 PM

I & my celiac daughter both have Raynauld's! We take lots of supplements & keep our limbs warm as well as our core body temp.
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#14 Mack the Knife

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Posted 24 July 2010 - 06:53 PM

I have stolen my girlfriend's gloves. They are really helping - although I do feel like a bit of a nuff-nuff wearing gloves in Australia (even though it is winter at the moment).

I need better socks though. I'm a cheap skate and don't like spending money on things like socks. Consequently all my socks are cheap and not very warm.
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#15 tarnalberry

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Posted 24 July 2010 - 06:59 PM

Mack, I know they're pricey, but I'd recommend investing in a few pairs of SmartWool socks. Yeah, yeah... you'll probably spend at least $50 getting a decent number of pairs (I buy them on outlet sale at REI, so they're cheaper. ;) ) But they last a long time. I wear mine all the time (I only wear wool socks - I like them better), and I use them hiking and in daily life. I've yet to replace a pair in the past five years I've been using them. (I do add to my collection occasionally... :P)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA


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