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Joyous

Raynaud's Phenomenon

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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.


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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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.


Joy

Not gluten free yet because I'm waiting to be tested.

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

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 in time with proper diagnosis of Celiac November 2002

 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)

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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!

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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.


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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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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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

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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. :(


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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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.

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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.

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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.

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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:


Joy

Not gluten free yet because I'm waiting to be tested.

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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.


Gluten Free since 10/07

Mildly Lactose Intolerant, slight intestinal symptoms after eating milk products, but easily corrected with lactase enzyme

Endometriosis- DX'd 5/07

Gluten Antibodies- "negative"...don't know exact numbers, am highly suspicious...

DXed celiac 12-19-07 via genetics/elimination diet- DQ2 allele

Brother with Celiac, aspergers...his tests were all negative (he didn't have genetics done), including endoscopy, but he definitely is at the least gluten intolerant...highly suspect my mother has it as well- she has hyperthyroid, fibromyalgia, hemochromatosis, and now colon cancer, and she has been weak and exhausted and just generally sick. She's going to get tested.

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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.


ptkds

Mom of 4 beautiful girls (the 2 youngest are only 10 months apart!)
Diagnosed with Celiac disease on November 8, 2006; gluten-free as of 12-1-06.

DD#2 13 years old; diagnosed on November 28, 2006. gluten-free as of 12-7-06.
DD#3 9 years old; diagnosed through blood work in October 2006. Gluten-free as of mid-November and doing GREAT!!
DD#4 8 years old; had a scope done on 6-22-07 (at 14 months old) and the dr saw stomach ulcers, but all test results were negative. GI dr told us to put her on the gluten free diet anyway. She is gluten free as of 6-22-07.

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