Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Raynaud's Syndrome


AVR1962

Recommended Posts

AVR1962 Collaborator

For those diagnosed with Raynaud's symdrone, just wondering if you chose to go on meds and did they help? Side effects? Or did you find something else that worked? Doc is suggesting I go on a prescribed med and I am always very weary so I was hoping to get some input.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CarolinaKip Community Regular

I have Raynauds as does my sister who has Lupus. I am not on meds for it at this time. I seem to only have problems with it if my hands or feet get too cold. I protect them in the winter with gloves , thick socks and thankfully I've had a mild winter so far. In the summer I have to watch the air conditioner also.

I have outside a.m. duty at my school and on very cold mornings I use hand warmers that hunters use in my gloves. I get to stay in my car if the temp is below 40.

Are you having a difficult time with your Raynauds? I've never been given an option of meds for mine. Good luck to you and be well :)

Link to comment
Share on other sites
RiceGuy Collaborator

Some things that I know from experience which can help include magnesium, zinc, vitamin B12, garlic, ginger, curcumin (from turmeric), and omega-3s such as flax oil (or fish oil). Taking Epsom salt baths can help too, along with washing dishes by hand, and adding Epsom salt to the dish water. Here's a list of things you can include in your diet that should help: Open Original Shared Link

Additional reading:

Open Original Shared Link

Open Original Shared Link

Personally, I don't believe in taking meds, and I do think Raynaud's can be addressed via diet for most in not all sufferers. But most doctors have little if any nutritional training, so are typically not prepared to suggest anything but drugs. I know nutrition has made a real difference for me, to the point where I no longer even think about it most of the time. Only very rarely will I notice my hands turn color, but it doesn't last very long at all - typically gone in minutes.

Link to comment
Share on other sites
Roda Rising Star

I was prescribed verapamil last year. I only took a few of the tablets, so I can't really say if it helped or not. I haven't taken anything for it otherwise and I am having a better time with it this winter. Air conditioners set me off too as well as getting stuff out of the freezer. Overall I feel better in general, wear gloves, socks/slippers, and a hat. I've even been wearing gloves when I have to get things out of the freezer. If something is to cold for me I have to let my husband deal with it. This comes up when we are preparing meats that have been frozen and are really cold.

Link to comment
Share on other sites
Gemini Experienced

For those diagnosed with Raynaud's symdrone, just wondering if you chose to go on meds and did they help? Side effects? Or did you find something else that worked? Doc is suggesting I go on a prescribed med and I am always very weary so I was hoping to get some input.

I have Reynaud's Syndrome and some of the suggestions given here by other posters are good advice. I have refused to go to any Rheumatologists for my multiple autoimmune problems because they are for people who look to medication for answers and that rarely happens. I got sick of being hounded and you are smart for not wanting to take anything.

For the most part, my Reynaud's was really bad, pre-gluten free. I had to wear gloves all the time and my hands lost all circulation when exposed to cold. I like winter so this was not an option for me. However, since going gluten-free, the symptoms of this problem have diminished dramatically because I have knocked the inflammation way down in my body. I no longer have to wear gloves food shopping or to go into the freezer. The only time I have a problem is when it is very cold outside and now it is restricted to my middle finger ( :P ), at the very tip. They get blanched for a few seconds but I can now warm them up quickly enough and I am fine. There will always be a little discomfort but nothing to bother me much. My feet and hands are always cold, mainly to others as I notice no major discomfort, but I also have Sjogren's Syndrome and Hashi's thyroid disease. Yeah, I sound like a mess but the gluten-free diet has saved me. All of my symptoms have greatly diminished, although still there to some degree.

Stay strictly gluten free and see what happens. Use whatever extra's like gloves to keep you warm. Exercise is very important, especially cardio as that gets the circulation going to the outer extremities. I must say it was the gluten-free diet that made most of the difference but I have had these problems for so long, it is my new normal and I can live with everything as it is....which is way better than when I was eating gluten. I caution you about taking any meds though....they can cause more problems than they cure. Autoimmune disease rarely responds to drug therapy....this isn't a virus or infection.

Heated gloves sound like an excellent idea! :D

Link to comment
Share on other sites
AVR1962 Collaborator

I have Raynauds as does my sister who has Lupus. I am not on meds for it at this time. I seem to only have problems with it if my hands or feet get too cold. I protect them in the winter with gloves , thick socks and thankfully I've had a mild winter so far. In the summer I have to watch the air conditioner also.

I have outside a.m. duty at my school and on very cold mornings I use hand warmers that hunters use in my gloves. I get to stay in my car if the temp is below 40.

Are you having a difficult time with your Raynauds? I've never been given an option of meds for mine. Good luck to you and be well :)

Yes, been dealing with it for over 20 years but it has gotten worse. I almost cannot warm up now. Feet are red (purple). I am always bundled.

Link to comment
Share on other sites
AVR1962 Collaborator

Some things that I know from experience which can help include magnesium, zinc, vitamin B12, garlic, ginger, curcumin (from turmeric), and omega-3s such as flax oil (or fish oil). Taking Epsom salt baths can help too, along with washing dishes by hand, and adding Epsom salt to the dish water. Here's a list of things you can include in your diet that should help: Open Original Shared Link

Additional reading:

Open Original Shared Link

Open Original Shared Link

Personally, I don't believe in taking meds, and I do think Raynaud's can be addressed via diet for most in not all sufferers. But most doctors have little if any nutritional training, so are typically not prepared to suggest anything but drugs. I know nutrition has made a real difference for me, to the point where I no longer even think about it most of the time. Only very rarely will I notice my hands turn color, but it doesn't last very long at all - typically gone in minutes.

Thanks for the links, I will check them out. I do take in the vits you have mentioned and unfortunately it's not enough or just not working anymore. I used to be able to control this, and I too am all for vits and against prescripts at all costs. The only thing I have not tried that I have read about is ginger and rubbing the feet with borage oil and cayenne.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

I have Reynaud's Syndrome and some of the suggestions given here by other posters are good advice. I have refused to go to any Rheumatologists for my multiple autoimmune problems because they are for people who look to medication for answers and that rarely happens. I got sick of being hounded and you are smart for not wanting to take anything.

For the most part, my Reynaud's was really bad, pre-gluten free. I had to wear gloves all the time and my hands lost all circulation when exposed to cold. I like winter so this was not an option for me. However, since going gluten-free, the symptoms of this problem have diminished dramatically because I have knocked the inflammation way down in my body. I no longer have to wear gloves food shopping or to go into the freezer. The only time I have a problem is when it is very cold outside and now it is restricted to my middle finger ( :P ), at the very tip. They get blanched for a few seconds but I can now warm them up quickly enough and I am fine. There will always be a little discomfort but nothing to bother me much. My feet and hands are always cold, mainly to others as I notice no major discomfort, but I also have Sjogren's Syndrome and Hashi's thyroid disease. Yeah, I sound like a mess but the gluten-free diet has saved me. All of my symptoms have greatly diminished, although still there to some degree.

Stay strictly gluten free and see what happens. Use whatever extra's like gloves to keep you warm. Exercise is very important, especially cardio as that gets the circulation going to the outer extremities. I must say it was the gluten-free diet that made most of the difference but I have had these problems for so long, it is my new normal and I can live with everything as it is....which is way better than when I was eating gluten. I caution you about taking any meds though....they can cause more problems than they cure. Autoimmune disease rarely responds to drug therapy....this isn't a virus or infection.

Heated gloves sound like an excellent idea! :D

I have a feeling that right now my system is just a little compromised yet as so many things have been going wrong. It's been a wild goose chance to keep up with the next thing that goes wrong and I am thinking that I am in an inflamed state. However, I not not having much luck getting everything to simmer down right now. I have come a long long way in 9 months but I thinking my body is still attacking itself. I do notice a difference when I get exercise and I probably need to make a point to get more and see if I can get my feet back to a normal color again.

Link to comment
Share on other sites
Jen Z Rookie

Many years ago when first diagnosed with Raynaud's as a teen, I took meds when I was really symptomatic (Isoptin (Verapamil). For me, the side effects were worse because they caused such a rapid heart rate and flushing. I do have MVP and palpitations so the meds just exacerbated that.

This year, I have been having a really tough time with my feet at night. I bought an electric throw size blanket and cocoon wrap it around my legs and feet when I get in bed at night. I am finally able to sleep again and shed my wool socks and long john bottoms at some point during the night. No more mittens either. The flannel sheets and electric blanket have really made a huge difference.

Interestingly, I have discovered that I have Sjogrens as well. Drs never mentioned it even though I have been treated for dry eye and map-dot-fingerprint dystrophy for 20 yrs. I did swallow tests a few years ago because I so often choke on food or just plain air. Interesting that a diagnosis of celiac disease led me to connect the dots on my other symptoms. Thank goodness for the internet.

Link to comment
Share on other sites
Gemini Experienced

Many years ago when first diagnosed with Raynaud's as a teen, I took meds when I was really symptomatic (Isoptin (Verapamil). For me, the side effects were worse because they caused such a rapid heart rate and flushing. I do have MVP and palpitations so the meds just exacerbated that.

This year, I have been having a really tough time with my feet at night. I bought an electric throw size blanket and cocoon wrap it around my legs and feet when I get in bed at night. I am finally able to sleep again and shed my wool socks and long john bottoms at some point during the night. No more mittens either. The flannel sheets and electric blanket have really made a huge difference.

Interestingly, I have discovered that I have Sjogrens as well. Drs never mentioned it even though I have been treated for dry eye and map-dot-fingerprint dystrophy for 20 yrs. I did swallow tests a few years ago because I so often choke on food or just plain air. Interesting that a diagnosis of celiac disease led me to connect the dots on my other symptoms. Thank goodness for the internet.

I also have both Raynaud's and Sjogren's and diagnosed myself because the docs just missed everything. I went back to them and asked for the blood work for the Sjogren's and it turned out positive. You are correct...thank goodness for the internet but doctors absolutely hate that!

What all of you need are hot flashes. :P I use flannel sheets all the time and love them but could never use an electric blanket. My feet and hands are cold but not bad enough that they bother me...I guess I have gotten used to it. But the hot flashes help a lot...no kidding! Nothing gets the blood going like a good, old fashioned hot flash. It's weird...I am roasting when I have one yet the hands and feet are still cold...not as bad as pre-flash but they never warm up except after exercise at the gym. I just wish it would last!

Link to comment
Share on other sites
  • 3 weeks later...
badgerette Rookie

oooh, thanks for that info, RiceGuy!

I've had Raynaud's for a few years now. It mostly affects my toes, but if I'm stressed my fingers will easily be affected too. This year, for the first time, I've been getting something called chilblains on my toes. They are very painful and frustrating to deal with. I've been told by the doc to keep my toes well moisturized to help w/circulation, and I also started putting eucalyptus oil on my toes because that supposedly helps with circulation as well. I've also read that ginkgo is approved by the World Health Organization to help circulation, so I bought a bottle... and promptly found out it shouldn't be taken with elavil, which I take for my interstitial cystitis :( BUT that might help YOU. Docs have not recommended any meds for me at this point and I'm 100% ok with that.

I, too, love the electric blanket at night, and wearing slippers in the house is a must. For me, it doesn't matter WHAT I put on my feet- they always freak out when it's cold and I live in the sub-arctic hahaha.

Good luck!

Link to comment
Share on other sites
AVR1962 Collaborator

Thanks for that info Badgerette, it is worth a try!

Link to comment
Share on other sites
Pandoranitemare Apprentice

I have Raynaulds, but I am on so many meds for other things that I don't even want to consider taking anything else.

I have found a great handwarmer that runs on lighter fuel, it stays warm for several hours at a time, so is much better than the gel type ones which only last an hour or so. Check out Ebay, there are also ones which run on charcoal blocks, but they have the slight disadvantage of requiring a supply of refills, whereas the fuel ones run on standard lighter fuel (the liquid not the gas).

I also keep a pair of thermal mittens by the freezer, which I always put on before diving in. I read that mittens keep the hands warmer than gloves. Simple things like keeping mittens in literally every coat I have, so I never get caught out if the weather turns, even though I do wear fingerless gloves all the time anyway is helpful to limit attacks.

Sometimes it has been so bad that the only way I have been able to get the feeling back in my hands has been to take a warm shower, so I really do try to aim for prevention as much as possible.

Link to comment
Share on other sites
AVR1962 Collaborator

I was reading about a lady's personal experience with Reynaud's. She was forced to wash her hair and do dishes in cold water due to her temp living situation. To all of us that sounds like a nightmare but what she found out is that after doing this repeatedly it actually helped her hands adjust nd she could tolerate the cold better. I was actually thinking about giving this a try.

I did buy some socks that are bamboo charcoal and are supposed to react to your own body heat, thought I would give them a try.

Link to comment
Share on other sites
  • 1 month later...
Blue-eyed bandit Apprentice

I'm wondering if everyone with raynoulds if you also experience mottled like skin when cold- like a lacy overlay on ur skin?? My dermatologist saw this today on my skin and now I'm being tested for lupus and antiphosophlipids etc. I'm scared to be diagnosed with yet another problem.

Link to comment
Share on other sites
AVR1962 Collaborator

Don't be scared, I do understand but it is bettr to know and be able to deal with the diagnosis.I have raynaud's but do not have the lacy ovr-lay of skin like you ahve mentioned.I do have a very odd looking callos that runs long the white area of my foot, kind of like it is seperating the red parts which is rather strange.

Is your raynaud'sdoing bettr with the warmer weather?

Link to comment
Share on other sites
Blue-eyed bandit Apprentice

I have the same white callous too on both feet but the doctor isn't worried about that. My legs get slightly lacy when cold but it doesn't happen often... But it happened at the dermatologist so it must have happened for a reason. The tiny little rash I have is super tiny and comes up with heat especially after shower. Raynoulds is nonexistent in summer.

Link to comment
Share on other sites
AVR1962 Collaborator

I had a terrible pain in the ball of my foot that started in Sept and docs would not listen when I thought it was connected to Raynaud's. I could not find any info to support it but as soon as the tmps got warmer it went away.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Julie Riordan replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling

    2. - trents replied to SuzanneL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    3. - SuzanneL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    4. - Scott Adams replied to Braver101's topic in Coping with Celiac Disease
      2

      Constant sweating with celiac disease

    5. - Scott Adams replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,495
    • Most Online (within 30 mins)
      7,748

    Zofosho
    Newest Member
    Zofosho
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
    • Scott Adams
      I'm sorry to hear about what you're going through. It must be really frustrating and uncomfortable. Have you talked to your healthcare provider about these sudden sweating episodes? It might be helpful to discuss this with them to rule out any other underlying issues or to see if there are specific strategies or treatments that can help manage this symptom. Additionally, staying hydrated and wearing breathable clothing may provide some relief. 
    • Scott Adams
      I am not sure where you are going, but we have articles in this section which may be helpful: https://www.celiac.com/celiac-disease/gluten-free-travel/ 
×
×
  • Create New...