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

Lupus? Raynaud's?


frenchiemama

Recommended Posts

frenchiemama Collaborator

I have an appointment this Friday for some tests, and Lupus is apparently first on the list.

The list of symptoms that I have aren't really severe, but I had celiac disease symptoms for 10 years that weren't very severe either and I'm not about to let something else go for a decade.

My main question is about Raynaud's phenomonen. My hands/fingers and ears turn a dark purpley-red when I am cold (not outside cold, even a somewhat chilly room will do it) but it doesn't hurt. I keep reading that Raynaud's is supposed to be really painful. My hands get a little stiff, for example if I'm sitting in a cold lecture hall for 2 hours I'll have trouble holding my pen, but it's not painful. Could this still be Raynaud's?


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



Celiac.com Sponsor (A8-M):



Pegster Apprentice

I have Raynauds. I have had it about twenty years. I have no idea if it is at all related to celiac disease. When I am cold (or very stressed out- which isn't that often) I lose the color in my fingers (and toes sometimes) My fingers look dead and bloodless. It doesn't hurt; it just tingles until the blood starts to come back into my fingers. Then it can be painful. Raynauds can be associated with other, more serious, diseases, but it's just something I deal with. I live in California, so it's not too hard to keep my hands warm. Your symptoms don't really sound exactly like what I have.

mytummyhurts Contributor

I have Raynaud's too. It just started last year, a little after my celiac symptoms showed up. But I don't think Raynaud's is related to Celiac, it's more associated with other autoimmune disorders like lupus, which we are more likely to have once you have one autoimmune disorder. They think I may have lupus or some other similar disorder, but I have actually had flare-ups where my joints swell and get really painful, I have a fever, problems breathing, sore throat, etc. I have had two of these flare-ups in the past 7 months.

I haven't really found Raynaud's to be that painful. It's really creepy looking though and it freaks people out. My fingers either turn totally white or really purple/blue. I don't have to be outside either, during the winter it's really bad though.

frenchiemama Collaborator

My feet turn completely white when I'm cold, I just thought of that. They look dead, it's gross. I've never really thought about it before, but sometimes my fingers turn white too. Who knows. I guess I'll find out, right?

Guest jhmom

I have Raynaud's too and my feet and hands usually hurt when I get cold but they don't turn red or blue but like you they turn white but vessels in my hand shrink. I get cold when the temp is under 78 and my hands and feet are always the first to get very cold! I also have other autoimmune illness' (Lupus and Hashimoto's).

Hang in there! :)

mytummyhurts Contributor
My feet turn completely white when I'm cold, I just thought of that. They look dead, it's gross. I've never really thought about it before, but sometimes my fingers turn white too. Who knows. I guess I'll find out, right?

<{POST_SNAPBACK}>

Yeah, I have issues with my feet too. They turn numb a lot, sometimes when we go on walks when it's not very warm. I'm liking summer weather, I've almost forgotten about this things. When winter comes again I'll probably be reminded. :(

jenvan Collaborator

hey, i'm lucky enough to have reynaud's too !! :P i get the purple/bluish discoloration too, but a lot of times it manifests as red, slightly swollen spots. I also used to get severe itching in the afternoons when my fingers would finally warm back up. now that i know about it, i can prevent it most of the time, by making sure my fingers don't get cold... ie. in the winter in my office i wear fingerless gloves :) or if i feel them starting to get cold i submerge them in warm water for a while...


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



Celiac.com Sponsor (A8-M):



skbird Contributor

I had Raynaud's for four years, ending about 5 years ago. My fingers never turned blue but they did sometimes turn white (and often just one or two, or parts of a couple, never all of them, and usually just my left hand for some reason) and when they turned red they hurt from a mild ache to really bad pain (like a severe migraine). At the worst it would hurt so bad I'd try to smash my hand between two cushions on the sofa to try to counteract it.

I recently had some hand pain that was very similar but I don't know if it is starting up again or not. I am in the process of being tested for Lupus and some other connective tissue diseases.

Many people have Raynauds and no connective tissue disease, but it can be a part of the disease. If you have Celiac or autoimmune gluten intolerant, you are more likely to have other autoimmune diseases, from what I've read.

Stephanie

hsd1203 Newbie

I've had it for about 10 years, it has gotten better since going gluten-free (and moving south!) and sometimes it was just uncomfortable (when they get purple/red, like you described), other times it is downright painful (tears and everything), but that is mostly when I get really cold and my feet turn white and completely numb and then the pain comes when they have to warm back up.

good luck with the tests and all.

Pegster Apprentice

My Raynauds has also gotten bettter since I went gluten-free. I never really thought of the connection before. Hmmmmmm!

skbird Contributor

Actually, this has me thinking. I think my Raynaud's went away when I stopped eating nightshades. I stopped them because I realized they were causing a toxic reaction in me and I was getting very sick from them - had my whole life. (Nightshades are potatoes, tomatoes, peppers, eggplant, tobacco, kava kava). I would get migraines and stomach problems. There are mixed theories on their being avoided in the case of arthritis as well as rheumatoid arthritis. I wonder if their influence on connective tissue disease is why my Raynaud's went away when I stopped eating them? Hmmm.

Stephanie

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • 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):
  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.