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

Does Anyone Suffer From Relex Sympathetic Dystrophy Due To Celiac Disease?

renee711

Recommended Posts

renee711 Newbie
renee711
Posted

Hi! I am new to the site. I have been suffering with Celiac Disease for 7 years now. The usual story it took about 8 years of horrible symptoms and testings to finally discover that I had this disease. When I first was diagnoised I was severely ill with migraines and of course the lovely stomach issue. I went on a stict gluten free diet and was fine for the next 3 years. Then out of the blue one day my hands start shaking, my speech is slurred and I have difficutly walking. First they thought it was a stroke. Long story short it took them a year where again I heard from all the doctors "its in your head" . Finally a wonderful doctor at the Celiac Center at Columbia University...tested my vitamins. Due to the celiac diease my body was absorbing all of the vitamins that I was taking in. I had no Vitamin D No vitamin B6 or B1. After about 6 months of being on a ton of vitamins my symptoms slowly disappeared thank goodness! I am so grateful to her.

Well here I am again and I am wondering if somehow thought I don't see how..but you never know it could be celiac related. I was diagnosied with reflex sympathetic dystrophy. I was just wondering if someone out there has heard of it being related. I had a simple sprained ankle that turned into this rsd..basically it is a condition that effects the sympathetic nervous system. The system is sending pain signals to my ankle even though there is nothing wrong with it. It is horrible. If you want you can look it up. I don't want to bother you all with the details if it is not related. All I know is that I am unable to walk once again and this is a chronic lifetime condition with severe pain..so if anyone knows if it is related please let me know.

OH here is maybe a simple question that someone can help me with..I had not been able to shower for a week due to the pain from rsd anyway I normally have a horrible rash on my face that the dr. said was rocesha (spelling probably wrong sorry) my face was clear by the end of the week but then I took a shower and the rash was back burning and more red then ever. I was doing some research cause I figure it has to be the shampoo/beauty products and just learned some have gluten!! How do I find out if my oil of olay, pantene, caress and even revelon makeup are safe..is there a list out there somewhere?

I am hoping that you all are not reading this saying this woman is such a mess and just sounds like a big problem. I know I feel like that but I hope you can see past all my complaining one day. Oh, I am so sorry. I am very upset and didn't even introduce myself wait have to read the rules...lol. I am a 39 year old female. I am married with no children. I have 2 cats and 2 dogs. Also I am normally much more happier and upbeat than this. Thank you for your time reading this and I look forward to reading any responses..hopefully I will get some.lol.

Have a great week!

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

I don't have this problem, but my celiac sister does. Her problems have occurred following a wrist fracture and following breast cancer surgery where they used a long-lasting local anesthetic on her that she is adversely reactive to. I cannot tell you a lot about her pain and how it affects her, but I know she has it, diagnosed by her physicians.

ravenwoodglass Mentor
ravenwoodglass
Posted

I had RSD set in after a knee surgery prediagnosis. Luckily for me it was in the leg that had the most celiac related nerve damage so it wasn't extremely painful. It was really scarely though because I lost all the muscle in my leg from where they put the tourniquet down. I was sent to PT for a few months and it did for the most part resolve although even now, years later that leg is a bit smaller than the other one.

I think you are wise to avoid gluten in your topicals. I use Garneir line for skin and hair care and also some of the Shikai line. I think we when we have the nervous system effected by this disease it seems we have to be super careful.

Hopefully your doctor has referred you to a good PT and do check all meds you are taking to be sure they are gluten free.

I hope this resolves for you soon.

mommida Enthusiast
mommida
Posted

My niece was diagnosed with RSD. I don't know if they even tested her for Celiac. She was in a wheelchair for a year and now she is walking and doing fine. She has an extreme reaction to heat. Perhaps the heat from the shower is causing the reaction on your face? In any case double check your cosmetics and consider changing your pet food.

I think RSD still needs to have more research done and maybe then it will show a connection to Celiac or auto-immune disorders.

Archived

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

Go to topic listing

  • 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. Theresa2407
      - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

      thank you for your advice. I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated. I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    2. KathyR37
      - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and gloves when cooking for them. One huge problem...
    3. Scott Adams
      - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are fee...
    4. KathyR37
      - KathyR37 posted a topic in Coping with Celiac Disease
      2

      New here

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Celiac attack confusion and anxiety

      This article, and the comments below it, may be helpful:
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,811
    • Most Online (within 30 mins)
      7,748
    Taraceliacmama
    Newest Member
    Taraceliacmama
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Theresa2407
      Probiotics

      By Theresa2407 · Posted

      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      New here

      By KathyR37 · Posted

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
    • Scott Adams
      Celiac attack confusion and anxiety

      By Scott Adams · Posted

      This article, and the comments below it, may be helpful:    
×
×
  • 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.