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. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      315

      Terrible Neurological Symptoms

    2. - Russ H replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    3. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      315

      Terrible Neurological Symptoms

    4. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      315

      Terrible Neurological Symptoms

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

    • Total Members
      133,585
    • Most Online (within 30 mins)
      7,748

    canmich111
    Newest Member
    canmich111
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • HectorConvector
      These symptoms started initially in 2009/2010 and I've had normal blood sugar readings in all the blood tests - so never been diagnosed with diabetes or pre-diabetes. I did request another blood test recently (yesterday in fact) which I have had, and if the blood sugar looks high it'll come up in my results which I'll be able to see next week. I don't have any other symptoms relevant to diabetes except for the nerve pain, which had been in existence for many years with "normoglycaemia", but we'll see. In terms of my current diet: I get roughly 60% of my calories from fat and protein, and 40% from carbs (an estimation). I'm on currently about 2200 calories per day, which is too low for someone of my size, so I've been slowly losing weight that I want to put back on again. But I don't want to do that without using weights, which flare my pain up unfortunately. 
    • Russ H
      I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease and going on a strict gluten free diet that I accidentally consumed dairy products and didn't react. From then on, I have been fine with diary. 
    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
×
×
  • 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.