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Raynaud's Phenomenon

Joyous

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Joyous Enthusiast
Joyous
Posted

any relation?

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sneezydiva Apprentice
sneezydiva
Posted

I don't know, but I was wondering the same thing, lately. Since starting the diet, I haven't been experiencing it much lately, except when I went home for Thanksgiving and got glutened. But to be fair, it was really cold, and cold definitely sets it off for me. My sister has been convinced for years that we both have this, though neither of us have seen a doctor specifically about it. And from what I understand, they believe it is autoimmune in nature.

Joyous Enthusiast
Joyous
Posted
  • Author
I don't know, but I was wondering the same thing, lately. Since starting the diet, I haven't been experiencing it much lately, except when I went home for Thanksgiving and got glutened. But to be fair, it was really cold, and cold definitely sets it off for me. My sister has been convinced for years that we both have this, though neither of us have seen a doctor specifically about it. And from what I understand, they believe it is autoimmune in nature.

Well, if your fingers/toes get cold and white, then cold and blue, then warm and red (and sort of stingy or burning feeling), you have raynaud's.

I was diagnosed with it a few years ago. It improved when I quit smoking shortly after, but I still experience it. The creepy thing is that it's unilateral... it happens to one foot or the other (and while my nose and fingers are often cold this time of year, it doesn't happen to my fingers anymore). I've read that if it's unilateral, it is most likely secondary to something else. I also take adderrall which I've read can make it worse.

I had a new experience yesterday... I got in the shower and it felt like the water was burning my feet, especially my toes. I looked down and they were all white... I felt the water by them with my hands and it was a comfortable temperature. :blink: I made the water luke warm and ran it over my feet and gradualy increased the temperature, and that worked.

I guess I'm curious as to whether there's anyone here who used to have this and then it stopped happening after they stopped eating gluten.

ravenwoodglass Mentor
ravenwoodglass
Posted

My DS has Raynaud's, it doesn't bother him as much gluten free but he still has it. I have a different condition that makes you covered in purple splotches called livedo reticularis that is in total remission unless glutened. Makes it easy to tell if your sick or glutened when your arms and legs turn purple :D

For the Raynauds make sure you keep your hands and feet warm. Some folks will even keep gloves by the frig to put on when reaching into the freezer. If yours is bad enough that may help.

Gemini Experienced
Gemini
Posted
Well, if your fingers/toes get cold and white, then cold and blue, then warm and red (and sort of stingy or burning feeling), you have raynaud's.

I was diagnosed with it a few years ago. It improved when I quit smoking shortly after, but I still experience it. The creepy thing is that it's unilateral... it happens to one foot or the other (and while my nose and fingers are often cold this time of year, it doesn't happen to my fingers anymore). I've read that if it's unilateral, it is most likely secondary to something else. I also take adderrall which I've read can make it worse.

I had a new experience yesterday... I got in the shower and it felt like the water was burning my feet, especially my toes. I looked down and they were all white... I felt the water by them with my hands and it was a comfortable temperature. :blink: I made the water luke warm and ran it over my feet and gradualy increased the temperature, and that worked.

I guess I'm curious as to whether there's anyone here who used to have this and then it stopped happening after they stopped eating gluten.

Reynaud's is autoimmune and it is also linked with Lupus. I believe it's termed a connective tissue disease also. I do have Reynaud's myself, among other autoimmune problems, and it is linked to celiac disease, which is not surprising.

Auotimmune problems never go away....you cannot be "cured" but what you can do is experience a major lessening of symptoms by going gluten-free. For some people, though, this will not happen to such a great degree. It all depends on many factors. Since I have gone gluten-free and it's been 2 1/2 years, almost all of my symptoms from my many autoimmune problems have diminished in a big way but these problems never go away completely. Another reason to stay gluten-free and not cheat!

sneezydiva Apprentice
sneezydiva
Posted
Well, if your fingers/toes get cold and white, then cold and blue, then warm and red (and sort of stingy or burning feeling), you have raynaud's.

Well, for me and my sister our fingers never turn blue, they're cold and white forever it seems, then finally get warm and red and tingly. When it happens to my toes, sometimes I'll see the blue, sometimes not. My sister gets it much more often than I do, and it seems to happen year round for her. Mine is more pronounced in cold weather. But in winters past it has been awful. When I lived in AZ, I hardly got it.

I've only been on the diet since August, but like I said, this winter has been really good, just one episode during Thanksgiving. I'll definitely keep an eye on this and let you know if I notice anything more.

I would not be suprised if there is a connection.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
Auotimmune problems never go away....you cannot be "cured" but what you can do is experience a major lessening of symptoms by going gluten-free.

I know that this is what the doctors say, but I disagree.

It depends on what is triggering the immune system to attack the body.

If gluten is the trigger, and you remove it, then the problem does go away.

There are many people on this board whose various autoimmune disorders disappeared upon going gluten-free.

Others have discovered other triggers, such as mercury toxicity and Lyme disease.

Either way, there is something TRIGGERING the immune system. It doesn't just attack the body for no reason.

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mamaw Community Regular
mamaw
Posted

I have Raynauld's & the gluten-free diet has not made it better or worse....I haven't found the trigger to it as yet. But I do have other autoimmune disorders to go along with these two......Don't you wish we could just wiggle our nose & poof gone!!!!

mamaw

darlindeb25 Collaborator
darlindeb25
Posted

Raynauds is another autoimmune disease and I don't think it goes away, it may go in remission for a while though. When I went gluten free, my Raynauds did seem to go away for a while, but this winter, it has come back with a vengeance. It used to only effect a couple of my fingers, this winter, it is effecting all of my fingers. It started when I was probably in my 30's and now I am 52. I seem to have it every day now, to some degree. So, like I said, it may go in remission, but it does not go away.

I also have neuropathy, which never went away, but the progression did slow considerably when I went gluten free.

I do believe that celiac disease opens the door for so many other diseases to crawl through. I am wondering now about Sjogrens too. I don't want to think about it, I don't want another thing added to my pile, yet I already have been diagnosed with the dry eye and the other symptoms seem to be piling on. Seems like a never ending battle. :(

  • 4 weeks later...
sez Newbie
sez
Posted

I have had Raynaud's since I was 21 (14 years). It is an autoimmune disorder and can be secondary to Rheumatoid arthritis or Lupus. I have not been officially diagnosed with either because raynauds is the only symptoms I have. It is hereditary and genes can be passed differently. My mom has rheumatoid, I have raynauds and my son has recently been diagnosed with celiac. My raynauds symptoms are pretty severe. I haved to wear gloves all the time and a lot of times I have to stick hand warmers in my gloves. I am just now learning about celiac for my son and I am going to go gluten free with him to see if my symptoms get better too.

Just a side note: I also have blood clotting antibodies (lupus anticoagulant) that was unknown to me until pregnant with my son. I almost lost him during pregnancy and he was severly growth restricted. If you don't have children but are planning to I would highly recommend getting blood tests for clotting antibodies associated with raynauds, rheumatoid or lupus.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
M I have a different condition that makes you covered in purple splotches called livedo reticularis that is in total remission unless glutened.

Oh, wow--I guess I have this, too, but I never knew it had a name. (I just googled it after reading your post, and my jaw dropped!)

My skin doesn't turn purple, but my thighs get that light, lacy, tingly sort of rash thing if I go jogging in cold weather. It also happens on my arms when I get out of a hot shower. Never could figure that one out!

I did get blood tests for RA and lupus, and they were negative--and I had been gluten-free for several months at that point.

We need to re-name you "Dr. Ravenwoodglass"--you know WAY more than any doctor I've ever met!

Sez, my first son was severely growth restricted also, but the next 2 babies were not, even though I did eat gluten during those pregnancies. With the second two, I did agree to anti-emetic meds (I turned them down with #1) to deal with the hyperemesis. Don't know if that is significant or not.

Gemini Experienced
Gemini
Posted
I know that this is what the doctors say, but I disagree.

It depends on what is triggering the immune system to attack the body.

If gluten is the trigger, and you remove it, then the problem does go away.

There are many people on this board whose various autoimmune disorders disappeared upon going gluten-free.

Others have discovered other triggers, such as mercury toxicity and Lyme disease.

Either way, there is something TRIGGERING the immune system. It doesn't just attack the body for no reason.

Well, everyone has the right to disagree but I can most certainly tell you that once you trigger for an autoimmune disease, it does not go away. You only trigger once, pretty much, to turn it on. You cannot rid yourself of celiac disease by eliminating gluten but you can become totally asymptomatic if the diet is followed strictly and you have no other food intolerances or allergies that muck up the works.

I have Hashimoto's thyroid and Sjogren's and, although I have brought both under control and am having no problems at present, it does not mean they go away. They are in remission but if the humidity gets too high and I am out in it for any length of time, my eyes become all red and

dry and my vision is affected. That's my Sjogren's knocking on the door and I will never be rid of it.......but it can be controlled most of the time. People have been known to reduce med levels for thyroid disease once they go gluten-free but you will always have thyroid disease.

Reynaud's, which I have also, is definitely autoimmune. Mine has improved dramatically since going gluten-free but when the temps hits zero, my fingers blanch and turn white. It will never go away and I learn to deal with it. My family is loaded with autoimmune diseases of every kind and I have learned much about them. I would hate to think someone would believe you could "cure" an autoimmune condition just by going gluten-free. You can knock it into remission but there is no cure.

Joyous Enthusiast
Joyous
Posted
  • Author
I have a different condition that makes you covered in purple splotches called livedo reticularis that is in total remission unless glutened. Makes it easy to tell if your sick or glutened when your arms and legs turn purple :D

I get this as well. I thought it was pretty common? Interesting to think that it may go away. It's like my massage therapist said when I told her about how I'll retain less water and have better skin and hair "wow, not eating gluten will be like an Extreme Makeover!" :lol:

HAK1031 Enthusiast
HAK1031
Posted

wow, I never knew Raynaud's existed! But it sounds like my mom and I both have it. My mom always has to wear footwarmers. As we speak my feet are ice cold and blue...I could probably pass for a corpse :lol: my nails turn blue a lot too, and when I was getting my lifeguard certification, they were telling us to check for signs of circulation, and blue lips/fingernails mean that the victim isn't getting oxygen. I looked down at my nails...sure enough they were blue! This especially happens when I play the violin. My feet also get painfully tingly sometimes too...huh. Will ask the doc.

ptkds Community Regular
ptkds
Posted

I don't know if this has already been brought up because my toddlers are bugging me and I couldn't read all the replies.

Last night, I watched a Medical Mysterys show and this lady developed Reynauds, among other symptoms. They discovered she had Sclerodema (sp?). It was pretty interesting. I wondered is she could be helped w/ a gluten-free diet since this was also an autoimmune disease.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
This especially happens when I play the violin.

I'm so glad to see another violinist on here!!!! :)

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