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

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


renee711

Recommended Posts

renee711 Newbie

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

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,449
    • Most Online (within 30 mins)
      7,748

    DoloresK
    Newest Member
    DoloresK
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • maryannlove
      Thought was finished with this but a friend just sent email saying she takes Tirosin liquid levothyroxine which has no fillers (mentioned by Pgetha above).  Friend's doc sends script to one of Tirosin's direct-mail pharmacies.  Looking that up, government insurance (Medicare/Medicaid) doesn't cover (as Pgetha wrote above).  But if use one of their direct-mail places three month supply is $57/month.  Researching that, happened to learn Yaral also makes a generic gluten-free levothyroxine.  
    • knitty kitty
      Lysine is helpful for "cold sores" (oral herpes).
    • knitty kitty
      @Wheatwacked, Are you aware of the interaction of potassium iodide and losartan ?   https://www.drugs.com/drug-interactions/iodine-potassium-iodide-with-losartan-1368-0-1489-0.html#:~:text=Talk to your doctor before,to safely use both medications.
    • dmallbee
      As a life.long celiac, I understand this.  I simply ask that the medical profession stop disregarding the fact that it should remain a concern for some. It cost me a lot of medical discomforts.
    • trents
      @dmallbee, about 8% of celiacs react to the oat protein avenin like they do to the wheat protein gluten. In addition, there are some cultivars of oats that apparently do actually contain gluten.
×
×
  • Create New...