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. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      327

      Terrible Neurological Symptoms

    2. - cristiana replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Concerning GP advice

    3. - EssexMum posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Concerning GP advice

    4. - Florence Lillian replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

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

    • Total Members
      133,632
    • Most Online (within 30 mins)
      7,748

    Kit Sunshine
    Newest Member
    Kit Sunshine
    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

    • Scott Adams
      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
    • Florence Lillian
      Hi Scott: A wonderful, thoughtful explanation. Controlled human studies would be very interesting and quite informative. I have been eliminating certain foods and have narrowed it down considerably. Having other autoimmune diseases along with Celiac has become rather challenging. I appreciate your input, thank you. All the best, Florence
×
×
  • 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.