Jump to content
  • 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:
    Support Our Content
    eNewsletter
    Donate

Raynaud's Syndrome & Celiac


GEF

Recommended Posts

GEF Explorer

I mentioned to my doctor today that I have always had cold hands and feet and if I go swimming in cold water that my feet cramp horribly... I even have to wear socks to bed or my feet cramp. He mentioned the possibility of Raynaud's Syndrome. Truly, I'm not very well insulated and I'm tall... I'm sure it could just be poor circulation to the extremities, but now I'm curious. I did a web-search to see the relation to celiac, but every article and mention of it was in a medical journal and required $25 to view it. <_< Obviously there is investigation on the relationship, but I can't access it. Anyone know anything or does anyone have Raynauds?

Gretchen


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



Celiac.com Sponsor (A8-M):



Guest jhmom

Hi Gretchen

I have Raynauds too. I noticed the problem earlier this year but I just thought it was because I had lost so much weight but it wasn't. It got so bad at work I had to stop wearing sandles and short sleeves shirts, now I wear long sleeve and have a jacket at work. THe pain gets so bad in my hands that I have to run warm water over them.

FreyaUSA Contributor

Ugh, now you're making me worried. I'd never heard of this, though I've always joked about how cold my hands and feet are. But over the last two years, it's gotten so bad I'll take a very hot shower 2-3xs a day just to warm up. Last winter was so bad my husband started talking about how getting a hot tub would lower our water bill. (And I'm always running my hands in hot water, it's my poor feet that drive me to the shower.)

tarnalberry Community Regular

Freya, With that sort of cold in the extremeties, it's definitely worth talking to a doctor to rule out circulation and other problems. Good luck!

GEF Explorer

Don't worry, Freya... but like Tiffany said, I'd surely talk with your doctor about it. Everytime I mention cold intolerance, they want to test my thyroid (which isn't a problem for me). Your doctor will probably want to test this. I always thought I was more cold than most because of my lack of insulation and because I have long fingers and feet :lol: , but it had to be over the last few years that it's gotten worse where I had never had feet cramps before. If there is an ounce of chill in the air, my hands go cold and get stiff. Just goes to show you that things we think are normal sometimes are things we should really be talking with our doctors about just to be sure.

If any of you run across any articles (that you don't have to pay for) on the celiac/raynaud's relationship, I'd so like to read.

Gretchen

red345 Apprentice

--

darlindeb25 Collaborator

i too have Raynauds and i never thought about a connection with celiacs :unsure: since going gluten free i have not noticed the symptoms like i used to--one or two of my fingers would feel cold, then they would turn purple and eventually white as a ghost and i used to wrap my hand in a heating pad to warm it up--my feet are cold often and i have always said that if your feet are cold, then all of you is and if you can keep them warm, then you are warm--i dont think my feet have been effects as much as my hands--i also have been diagnosed with carpal tunnell and when a doctor told me that my toes were going to sleep because of the carpal tunnell, i was like :P right, but they say the nerves run from your hands up through your shoulders down your back and legs to your feet--i get lumps in my shoulders when my hands are acting up--my toes have gone to sleep in a long time--hmmmmmmmmmmmmmmmm <_< deb


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



Celiac.com Sponsor (A8-M):



  • 2 months later...
JaneC Newbie

I have Raynauds and Carpel Tunnel. I had not been able to go outside in winter for more than a few minutes without a lot of pain in my hands and feet. Of course, the Raynauds makes the Carpel Tunnel worse. Since I had slightly high blood pressure, my doctor has put me on a minimum dose of high blood pressure medication and it has made a BIG difference. I still feel cold in general and have cold hands and feet. But my hands and feet do not change color and they don't get painful as fast. Those of you who have these problems may want to ask your doctors about this solution. A minimal dose can make a big difference and if I do not take the medication for a short time, the symptoms come right back. Good luck to you. :)

aaascr Apprentice

Gretchen:

You mentioned that your feet cramp - I have Raynaud's, but during my onset

of celiac disease I got sit-down-crying-holding-your-feet cramps. Once my body was able

to take in nutrients again, specifically potassium, the cramps eventually subsided., I still have cold feet (and wear socks to bed). Maybe check on nutrient/mineral levels?

aa

aaascr Apprentice

(PS) there is a website - raynauds.org - not a whole lot of info

but some to get you started.

aa

terri Contributor

I am so glad you brought this up! Since going gluten-free my hands will sometimes turn almost purple, usually when I'm doing dishes, but often it just happens. When I type on the keyboard, like right now, they get so cold I can't bear it. And yes, they are very pale. I googled red palms and got "liver disease". Great. They get real cold driving also. I don't know weather it is poor circulation or what, but I have no problem with my other extremities. My feet and legs don't cramp, nor does my neck. It's my hands and so badly. Right now I have 2 white fingers and one real red.. The other hand ( the left) is all red. Any ideas? My nose is cold too and I don't even know how to bark!

red345 Apprentice

Open Original Shared Link

Don't go panicking about this. There are plenty of studies that contradict this theory. Regardless, whether you're talkinga bout PBC, Celiac, or Raynaud's/Lupus, they are all just part of the bigger picture, trust me. No need for panic whatsoever.

Carriefaith Enthusiast

Interesting...

I don't have Raynaud's Syndrome but I am cold almost all the time. My feet, legs, and hands are the worst. I have to litterally run to a heater to warm up sometimes because I get so cold. It almost feels like my legs/toes/hands are on the verge of frostbite or something :unsure:

And if I get cold from being outside, it takes me forever to warm up. I usually have to find a heater and stand in front of it for 5 minutes.

I thought I was always cold because I am thin, but maybe there is more to it?

red345 Apprentice

I should add that PBC is yet another that can be connected to the Mitochondria. All of these diseases, be it Celiac, PBC, Lupus-everything you can imagine when it comes to these symptoms, can be traced back to Mitochondrial insufficiency.

While PBC does have a direct connection to the flow of liver bile, all of these conditions involve one sound principal-lack of oxygen throughout the body (AKA-"Acidity"). Another condition that is highly similar to PBC is chronic autoimmune Hepatitis (Do your bouts of all of these symptoms come and go?). I knew all of this months ago through my research, but I just don't find any of it to be relevant.

There are two sound principles one must always remember in regards to this health crisis in America-

1)Lack of oxygen throughout the body facilitates for disease 100% of the time.

2)Acids within the confines of the digestive tract are what you want to have because they kill off bacterias/fungi, etc. But once there is damage to any layer at any point within the digestive tract, there is a chance those acids may escape into the bloodstream, and there is the birth of disease.

I believe it truly is that simple.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.