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. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    2. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    3. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    4. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    5. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

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

    • Total Members
      132,831
    • Most Online (within 30 mins)
      7,748

    ATownCeliac
    Newest Member
    ATownCeliac
    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

    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
×
×
  • 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.