Anyone Else Have Raynaud's Phenomenon?

[Mack the Knife]

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.

[kareng]

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?

[lucia]

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.nih.gov/pubmed/9077368?dopt=Abstract

[tarnalberry]

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.

[kareng]

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.

[tarnalberry]

Oh, what's a little thread hijack?

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).)

[Jestgar]

I do have this. The key is to keep warm, not just your extremities, but your whole core.

[Mack the Knife]

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.

[CarolinaKip]

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!

[RiceGuy]

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.

[ravenwoodglass]

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.gov/health/dci/Diseases/raynaud/ray_what.html

[tarnalberry]

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.)

[mamaw]

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

[Mack the Knife]

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.

[tarnalberry]

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... )

[RiceGuy]

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.gov/health/dci/Diseases/raynaud/ray_what.html

Yeah, I agree Wikipedia shouldn't be taken as the most authoritative source of information on any given topic. However, in this case, the Raynaud's article does track with what I've read elsewhere. And while not quite as comprehensive as the NIH article, does not appear to be inaccurate.

So to date, while some risk factors have been identified, the specific cause of Raynaud's is yet unknown.

[cv5638]

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 Raynaud's Phenomenon as well. My fingers have never been affected but this happens to my feet whenever they are cold. I can feel it happening even when I have shoes on and cant see my toes. my toes and down to the soles of my feet turn completely white to a purplish color. They'll feel real stiff, but are completely numb. I can flick them, tug em...zero feeling. The exact cause of this is unknown but it is from spasms in the blood vessels which causes them to constrict and circulation is decreased to the distal areas of the extremities. The blue purple color is from insufficient oxygen because the blood carrying the oxygen is diminished. Generally, this lasts for minutes to several hrs. Complications rarely occur unless there is a complete blockage of blood flow which can cause gangrene. For whatever reason, some people just cant tolerate cold temperatures which may be nerve sensitivity. Raynaud's is connected to various other conditions that aften coexist. From what I know there is no direct link to this and Celiac but I wouldnt doubt it. Many of the disorders related to Raynauds are also related to celiac disease such as joint problems like rheumitoid arthritis. also hypothyroidism, lupus, and scleroderma. Also some medications can aggravate the condition.

Hope that helped somewhat. I know that wasnt exactly the answer you were looking for. I dont think Raynauds is directly related to celiac disease but RP is often seen with other conditions including other autoimmune diseases so there most likely is some sort of association between the two.

GLOVES AND WOOL SOCKS HUN! KEEP THOSE DIGITS WARM =]

[Roda]

Just got the official dx of this today. I have suspected it for a few years. Now the doc had me do some other tests for other autoimmune problems. This makes autoimmune disorder #3. Man I must have been at the end of the line when it came to genes!

[StacyA]

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.

(I thought Mack was on the nipple topic and was starting to pity his girlfriend - 'amusement value'...).

Anyway, on the cold hands topic...

One thing to consider is vitamin E. We get it through our diet, but most people get theirs from wheat germ - one TB of wheat germ oil has 20.3 grams - 100% of the daily value. The next highest natural source is 1 ounce of almonds - which has 7.4 grams. Second and third highest sources are sunflowers and safflowers. Vitamin E deficiency can contribute to neuropathy. Do you take a multi with E, or do you eat enough nuts and seeds to make up for not eating wheat?

I've always had cold hands and feet, and it's worse after celiac. I was never a foundation make-up person, but I now 'powder' my nose every day because sometimes it gets so red when I'm cold that other people notice.

[Kelsey-13]

I think that I have Raynaud's Phenomenon. I have celiac disease (self-diagnosed 1.5 yrs ago, confirmed by blood tests 6 months ago).

The weird thing for me is that my finger nails turn dark purple/blue and my hands become ice cold AFTER I eat. It only happens to me after I eat food. I get so cold that I shiver and I have to shower in order to warm my body up...no amount of clothing layers and blankets does the trick.

When this first happened to me in high school, the doctors didn't believe me when I said I felt like I was going to die I was so cold. I had the school nurse check my temperature after lunch at school and my body temp read 91 degrees if I remember right (on multiple occasions around that same temp).

What is this??? What can I do??? Please help

[Gemini]

I think that I have Raynaud's Phenomenon. I have celiac disease (self-diagnosed 1.5 yrs ago, confirmed by blood tests 6 months ago).

The weird thing for me is that my finger nails turn dark purple/blue and my hands become ice cold AFTER I eat. It only happens to me after I eat food. I get so cold that I shiver and I have to shower in order to warm my body up...no amount of clothing layers and blankets does the trick.

When this first happened to me in high school, the doctors didn't believe me when I said I felt like I was going to die I was so cold. I had the school nurse check my temperature after lunch at school and my body temp read 91 degrees if I remember right (on multiple occasions around that same temp).

What is this??? What can I do??? Please help

The reason you may feel cold after eating is because blood is drawn to the stomach muscles to aid in digestion and certain foods and hard physical exercise will inhibit that response. Reynaud's may do the same thing as it constricts the blood flow, usually to extremities but may also affect the stomach. I have Reynaud's, along with 3 other autoimmune diseases but the Reynaud's got infinitely better once I went gluten-free and started a hard exercise program. I would also get your thyroid tested because that is a very low body temperature to have. Thyroid controls metabolism which in turn produces body heat. Usually someone with hypo thyroid will have a body temp. of around 96-97 degrees but 91? And you lived to tell us about it?

[Dwayne]

   Hello,

I am Dwayne (celiac since 1957) 61 years old.

This problem your having sounds similar to heart attack!

 There is a very serious condition in celiacs with B vitamins deficiencies.

It is called Hyper-homo-cysteine a amino acid associated with vitamins B's deficiencies which is the most common deficiency  in celiac disease.

This Homo-cysteine can cause a heart vasospasm which is a heart vessel spasm.

Example: A 30% heart blockage (not fatal) becomes a 100% blockage which is fatal if not cleared before death occurs, Which in my case was a 100% heart blockage and a last minute save with four emergency heart stents.

 Hyper-Homo-Cysteine caused heart vessel vasospasm caused by the vitamins B's deficiencies, in which a good vitamin B complex could prevent high levels of homo-cysteine and prevent a fatal (almost no warning ) vasospasm heart attack !!!

I have attempted to be as accurate as a layman can because this is absolutely important to every celiac and non celiac and gluten sensitive person and cardiologist.

                                                                             d fisher      

  I have no heart damage.

                                                 

 

 

 

 

[Charli61]

I have had Raynauds for about 25 years, did not have Celiac until about 15 years ago... My Dr. at the time with the Raynauds had lovely advice for me.... "Stay warm"    It still makes me smile.  I live in Canada, and no, staying warm isn't really an option, and over the years the Raynauds has gotten worse, now it is most of my feet.. and my hands    I try to stay warm and wear gloves when going into the freezer etc.  I never thought about getting gangrene and having digits amputated... That is an awful thought, I think you should stop thinking that way!    Anyway here I am 57 years old living in COLD Canada and surviving it all anyway!  

[at1992]

Hello! I also have Raynaud's. Mine started in high school (it was very infrequent then), but has really ramped up the past two years as my immune system has started going nuts. I was diagnosed with non-celiac gluten sensitivity, but I will still get Raynaud's when I've been glutened (as well all the other crazy symptoms), or if I touch cold things, walk outside in the cold, drink too much coffee, take certain meds, etc...  Be aware that you can get Raynaud's exacerbations with things like caffeine or certain prescription medications (my migraine medicine Rizatriptan will trigger it for me too). You might also notice that if you drink alcohol your fingers and toes will swell and turn really red. If your Raynaud's gets severe you could talk to your doctor about getting put on a calcium channel blocker