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

Joint Pain With Your Breakouts?


MissyLala

Recommended Posts

MissyLala Newbie

Hi All

 

Just wondering how many of you suffer joint pain when you breakout? I still haven't had a dx of what is going on with me and if any have read my story - I went gluten-free on my own suspisions and now would have to challange to find out for sure/ I just saw an allergist today and he thinks maybe Lupus bc based on my joint pain and areas he thinks Lupus may be it. I was just wondering how common Joint pain is on the topic/DH? Is pain in the joints/tissues commone when you get outbreaks? When I get itchy bumps I also get joint/tissue pain with them on my elbows knees

 

 I got one on my collar bone a few days ago and then my chest plate area and the area in between my breast (sternum maybe?) was so tender and sore I could barley pick up my children - it was like I pulled a mescle feeling but I didn't. That lasted for 3 days and now its gone.  Now when I breakout they raise itch for seriously one second and then don't bother me again but just hand around for a few days and look like a little pimple....is this consistent with DH on a gluten-free diet to come up itch and then leave you alone?? 
 

Thanks so much

 

btw - @squirmingitch....how are you these days? Did you ever use Dapsone? I saw your old posts about your rash getting way worse after going gluten-free that is so scary :( What is your current status? Sending HUGS!!

 

 


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

Sorry it's taken me so long to answer. I've been swamped with work.

Actually, I sort of felt like it was the other way around with me that is. I would get joint pain & then I would get blisters there. Or hand pain followed shortly by blisters on my hand. I believe it's all just a product of the inflammation going on.  I know the celiac was giving me all my pain --- everything has resolved now. It's mind bending to think that I had been having lower back pain to one degree or another since I was around 13 or 14 and now it's gone. Just poof! Gone. ALL those years. It just staggers me to think of it.

 

I got so bad off with pain all over my body & not just the joints, it included muscles too, that I thought I would be in a wheelchair within a couple years. I was getting epidurals in my spine so that I could function. And the pain would hit at random - no warning - just suddenly there. It might be the muscle between my elbow & my wrist or maybe it was the bone --- all I know is it was the worst pain I've ever experienced in my life. So bad you could not even cry or scream. It might hit my knee, or my shoulder or hand or calf or heel. Of course the longer I was eating gluten the more intense the pain got & occurred more frequently. But I did notice I seemed to always get blisters in that area soon after the pain began. That is in addition to whatever blisters were ongoing at the time.

 

I'm doing great now. I still have some of the rash but it is worlds different now. I do know that one day I will be rash free. I keep thinking it's got to stop anytime now but I might just end up being one of those people who it takes ten years for. I hope not but I can live with it if it does. It's mol like insect bites now & few & they don't itch 24/7. I no longer get migraines, the pain is gone, no bloating, gas, belching, no muscle spasms, no eye lid twitching, no depression, no anger/rage, no pounding heart that I can hear in my ears, my bp is back to normal, no needles feeling in my feet & hands, no more mucus in my eyes, fatigue is gone, I'm up to 110 lbs. now which is great b/c I was down to 93 on a good day -- sometimes the scale read 91 and I no longer get the intermittent bouts of screaming cramping D . I'm doing really, really well! Thanks for asking.

squirmingitch Veteran

I wanted to add something but didn't have time earlier about the outbreak you saw of me in the photos in the dh photo bank. That horrid, horrid time!!!!! I have done a lot of thinking about that and have come to the conclusion that outbreak was at least in part and I believe a very large part due to a steroid backlash. Remember I said I had been getting steroid epidurals for all the pain & immobility I was experiencing? Well I have counted up the months from the last time I had an epidural & that outbreak occurred just about the time that I would have needed to get another. So I believe that outbreak was a backlash from the steroids leaving my body. The question that remains & I will never be able to answer is how much did the steroid being in my body suppress the dh prior to that time??? I may very well have had a much worse rash for all that time that I was getting the epidurals if not for them.

At any rate, it's all over now & for that I am eternally thankful. I don't think I could survive another outbreak like that one. Those were the very darkest days of my life & I did seriously think of suicide. 

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. - olivia11 replied to olivia11's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      suggest gluten free food

    2. - knitty kitty replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      GI DX celiac despite neg serology and no biopsy

    3. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      17

      My journey is it gluten or fiber?

    4. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      17

      My journey is it gluten or fiber?

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

    • Total Members
      132,747
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • olivia11
      Thanks I am mostly looking for everyday staples and easy meal ideas nothing too specialty if possible.
    • knitty kitty
      There are other Celiac genes. HLA DQ 2 and HLA DQ 8 show up in people from Northern European descent.   People of Mediterranean descent have HLA DQ 7.  People of Asian descent have HLA DQ 9.   There's other Indigenous populations that have other HLA genes that code for Celiac disease.   Are you still having symptoms?   What do you include in your diet?  Are you vegetarian? Are you taking any prescription medication?  Omeprazole?  Metformin?   Do you have anemia?  Thyroid problems? Are you taking any vitamins or herbal supplements?  
    • knitty kitty
      There are eight essential B vitamins.  They are all water soluble.  Any excess of B vitamins is easily excreted by the kidneys.   Thiamine is Vitamin B 1.  Thiamine is safe and nontoxic even in high doses.  Benfotiamine and TTFD are forms of Thiamine that the body can utilize very easily.   The form of Thiamine in the supplements you mentioned is Thiamine Mononitrate, a form that the body does not absorb well and does not utilize well.  Only about thirty percent of the amount on the label is actually absorbed in the small intestine.  Less than that can actually be used by the body.  Manufacturers add thiamine mononitrate to their products because it's cheap and shelf-stable.  Thiamine and other B vitamins break down when exposed to light and heat and over time.  Thiamine Mononitrate is a form that does not break down over time sitting on a shelf waiting for someone to buy them.  What makes Thiamine Mononitrate shelf stable makes it difficult for the body to turn into a useable form.  In fact, it takes more thiamine to turn it into a useable form.   Gastrointestinal Beriberi is a localized shortage of Thiamine in the gastrointestinal tract.  High carbohydrate meals can result in gastrointestinal symptoms of Gastric Beriberi.  Fiber is a type of carbohydrate.  So, high fiber/carbohydrate snacks could trigger Gastric Beriberi.   Since blood tests for Thiamine and other B vitamins are so inaccurate, the World Health Organization recommends trying Thiamine and looking for health improvement because it's safe and nontoxic.  
    • xxnonamexx
      Thanks very interesting I have to see if I should take these 2 vitamins along with my multi and super Vit B complex or if its too much or would hurt me. I don't have any other health issues but would love to see if this improves anything especially to feel stronger build muscle.
    • Roses8721
×
×
  • 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.