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:
    Support Our Content
    eNewsletter
    Donate

Lupus? Raynaud's?

frenchiemama

Recommended Posts

frenchiemama Collaborator
frenchiemama
Posted

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
Pegster
Posted

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
mytummyhurts
Posted

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
frenchiemama
Posted
  • Author

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
Guest jhmom
Posted

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
mytummyhurts
Posted
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
jenvan
Posted

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
skbird
Posted

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
hsd1203
Posted

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
Pegster
Posted

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

skbird Contributor
skbird
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,884
    • Most Online (within 30 mins)
      7,748
    susieq312
    Newest Member
    susieq312
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Hidden Gluten in distilled vinegar

      By Scott Adams · Posted

      @Mynx, how long have you been gluten-free? I ask because many newly diagnosed celiacs react to many things, and often think their reactions are caused by gluten, when in fact, they are really caused by a combination of a sensitive gut due to damage, as well as additional food intolerance/leaky gut issues to other foods which may be temporary until their villi heal.
    • Scott Adams
      Hidden Gluten in distilled vinegar

      By Scott Adams · Posted

      Many major brands of distilled vinegar in the USA, including Heinz white vinegar, are typically made from corn. In the United States, corn is a common and cost-effective raw material used in the production of distilled white vinegar. The process involves fermenting the sugars derived from corn into alcohol, which is then further fermented into acetic acid to produce vinegar. Distillation follows, which purifies the liquid and removes impurities, including any residual proteins or allergens. While the source of the vinegar (e.g., corn) is not always explicitly stated on the label, corn-derived vinegar is widely used in the food industry due to its neutral flavor and affordability. For individuals with gluten intolerance or celiac disease, distilled vinegar made from corn is generally considered safe, as the distillation process effectively removes gluten proteins. However, if you have concerns about cross-contamination or specific sensitivities, it’s always a good idea to contact the manufacturer directly to confirm the sourcing and production practices. Heinz, for example, has stated that their distilled white vinegar is gluten-free and safe for those with celiac disease, but verifying this information can provide additional peace of mind. The belief that distilled vinegar is gluten-free is rooted in the scientific understanding that gluten proteins, which are large and complex molecules, are generally too big to pass through the distillation process. Distillation involves heating a liquid to create vapor, which is then condensed back into a liquid form, leaving behind larger molecules like gluten proteins. However, the concern about cross-contamination arises from the possibility that gluten-containing ingredients may have been present in the liquid prior to distillation. While the distillation process itself is highly effective at removing gluten, the equipment used in production could potentially introduce trace amounts of gluten if not thoroughly cleaned between batches. For most individuals with gluten sensitivity or celiac disease, distilled vinegar is considered safe because the gluten content, if any, is typically below the threshold that would trigger a reaction. However, for those with extreme gluten intolerance or celiac disease, even trace amounts can cause adverse effects. This is why some individuals, like yourself, may choose to avoid commercially produced distilled vinegar and opt for alternatives like apple cider vinegar, which can be verified as gluten-free. The meticulous process of researching ingredients and preparing homemade products, such as ketchup, is indeed challenging but crucial for maintaining health and avoiding gluten exposure. It’s important to note that regulatory standards for gluten-free labeling vary by region, and in many places, products labeled "gluten-free" must contain less than 20 parts per million (ppm) of gluten, which is considered safe for the vast majority of people with celiac disease. Nonetheless, individual sensitivity levels can vary, and your approach highlights the importance of personalized dietary management for those with severe gluten intolerance.
    • Bebee
      Testing for celiac

      By Bebee · Posted

      I have been diagnosed with Microscopic Colitis (LC) for quite a few years, so I have been gluten-free and DF.  I would like to get tested for Celiac Disease because of the possibility of cross contamination and colon cancer.  And if you were hospitalized and didn't have a celiac diagnosis you could not get gluten-free food, I don't know if that is true or not.  Also because there is chance of colon cancer so I want to know if I have Celiac Disease and need to be on very restrictive diet.  The only testing I did was a sigmoid scope and Enter Lab but no gene testing.  I know I can go back to eating gluten for a few months, but I would worry you would have to stay home for the few months while getting gluten.  What other options do I have?  Should I do the gene testing?  Maybe through Entero Lab?  Any other tests?  How important is it to have Celiac diagnosed? Thank you! Barb
    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
×
×
  • Create New...