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

Skin hurts/muscles hurt/body inflammation (almost positive it's autoimmune, but not sure if celiac)

mancalacat
 Share

Recommended Posts

mancalacat Newbie
mancalacat
Posted

Hey all. I'm wondering if you guys have any experience or insight with this. My backstory is a little complicated...

I'm 22, female. I went gluten free about five years ago after doing some elimination trials for bad IBS and finding that removing gluten helped. It didn't really occur to me to test for celiac beforehand (for some reason... I was dumb), so I've never actually been tested. I'm gluten-free, but I treat it kind of like most people with lactose intolerance -- I'm not going to buy myself a cake, but I don't demand to see all the ingredients in a sauce at a restaurant to see if it has barley malt syrup, because I just never thought it was that bad. When I eat a significant amount of gluten, I feel awful and get weird symptoms like increased GI problems, feeling anxious and exhausted at the same time, foggy brain, unmotivated, and what feels like inflammation throughout my body -- it's like all my muscles hurt, my skin just *hurts* (it's kind of hard to explain), my eyes are puffy.

Now, I do have a rare autoimmune disease that I've been officially diagnosed with & have been dealing with since last winter (henoch-schonlein purpura, a form of vasculitis that mostly occurs in young kids) and so I have GI problems with that, along with skin problems & kidney problems that I take meds for, but it's not in remission yet. I know that puts me at risk for other autoimmune diseases, and I feel like I'm predisposed to autoimmune reactions just in general. I had a colonoscopy for GI problems a few months ago (they thought I had Crohn's at first) and just found "inflammation" but did not follow up further.

I mention that just as background, as I'm actually posting about the weird skin/muscle/body pain I deal with on occasion. I am just coming off of a really crazy stretch at work, where I pretty much ate what I could get my hands on just so I didn't pass out (I sound dramatic, but really I just get dizzy a lot lol). I am SURE I ingested some gluten in there, probably more than a little. The past couple days, I have been feeling increasingly like my body is weirdly inflamed -- not a new feeling, but not one that's been associated with the HSP (other autoimmune disease). I haven't been able to sleep well, and I've been pretty miserable, because my body hurts, and I don't believe I have any sort of infection or illness right now that could be causing it. I realize it totally could be another autoimmune disease/reaction or something else entirely, but I was wondering if any of you had insight as to if it's a "thing" in celiac/gluten intolerance... what could be causing it... and more than that, how to fix it! I have 3 more days of work (albeit less crazy) till I get a break and I'm kind of miserable, but at a loss of where to go next testing- and treatment-wise.

 

Thank you!! 

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

Celiac.com Sponsor (A8-M):


gluten-free Survivor Rookie
gluten-free Survivor
Posted

It's indeed a possibility that you can have celiac disease. I had some of those symptoms that you mentioned  (the pains in my joints and muscles were horrible ), to wake up feeling drained and a host of other symptoms. 

I would recommend that you get a Celiac disease full panel test done or do a Genetic test.

mancalacat Newbie
mancalacat
Posted
  • Author
12 minutes ago, gluten-free Survivor said:

It's indeed a possibility that you can have celiac disease. I had some of those symptoms that you mentioned  (the pains in my joints and muscles were horrible ), to wake up feeling drained and a host of other symptoms. 

I would recommend that you get a Celiac disease full panel test done or do a Genetic test.

I do need to eat gluten for 6 weeks before the test, is that correct?

Thank you, though! Besides those sx I also have a *lot* of GI problems, from cramping to burning/indigestion to diarrhea to blood to painful muscle spasms. But at this point I don't know what's due to the other disease, because I know that exacerbated my "IBS"

GFinDC Veteran
GFinDC
Posted

Hi,

You need to eat at least some gluten every day for 12 weeks before the blood tests, and for 2 weeks before the endoscopy.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing

  • 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. tiffanygosci
      - tiffanygosci posted a topic in Coping with Celiac Disease
      0

      New Celiac Mama in My 30s

      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After...
    2. knitty kitty
      - knitty kitty replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

      On the AIP diet, all processed foods are eliminated. This includes gluten-free bread. You'll be eating meats and vegetables, mostly. Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well. Veggies should be fresh, or frozen without other ingredients like sauces or seasonings. Nightshade vegetables...
    3. Yaya
      - Yaya replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

      Thank you for responding and for prayers. So sorry for your struggles, I will keep you in mine. You are so young to have so many struggles, mine are mild by comparison. I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of. Following surgery: multiple symptoms/oddities appeared including...
    4. larc
      - larc replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back. My cardiologist offered me a collection of pharmaceuticals at the time...
    5. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

      So I should not eat my gluten free bread? I will try the vitamins. Thank you all so very much for your ideas and understanding. I'm feeling better today and have gathered back my composure! Thank you kitty kitty I am going to look this diet up right away. And read the paleo diet and really see if I can make this a better situation then it currently...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,920
    • Most Online (within 30 mins)
      7,748
    Serena Rodriguez
    Newest Member
    Serena Rodriguez
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After having my last baby this year, my body has finally started to find its new rhythm and balance...but things started to feel out of sorts. A lot of symptoms were convoluted with postpartum symptoms, and, to top it all off, my cycle came back about 4m postpartum. I was having reoccurring migraines, nausea, joint pain, numbness in my right arm, hand and fingers, tummy problems, hives. I finally went to my PCP in August just for a wellness check and I brought up my ailments. I'm so thankful for a doctor that listens and is thorough. He ended up running a food allergy panel, an environmental respiratory panel, and a celiac panel. I found out I was allergic to wheat, allergic to about every plant and dust mites, and I did have celiac. I had an endoscopy done on October 3 and my results confirmed celiac in the early stages! I am truly blessed to have an answer to my issues. When I eat gluten, my brain feels like it's on fire and like someone is squeezing it. I can't think straight and I zone out easily. My eyes can't focus. I get a super bad migraine and nausea. I get so tired and irritable and anxious. My body hurts sometimes and my gut gets bloated, gassy, constipated, and ends with bowel movements. All this time I thought I was just having mom brain or feeling the effects of postpartum, sleep deprivation, and the like (which I probably was having and the celiac disease just ramped it up!) I have yet to see a dietician but I've already been eating and shopping gluten-free. My husband and I have been working on turning our kitchen 100% gluten-free (we didn't think this would be so expensive but he assured me that my health is worth all the money in the world). There are still a few things to replace and clean. I'm already getting tired of reading labels. I even replaced some of my personal hygiene care for myself and the kids because they were either made with oats or not labeled gluten-free. I have already started feeling better but have made some mistakes along the way or have gotten contamination thrown into the mix. It's been hard! Today I joked that I got diagnosed at the worst time of the year with all the holidays coming up. I will just need to bring my own food to have and to share. It will be okay but different after years of eating "normally". Today I ordered in person at Chipotle and was trying not to feel self-conscious as the line got long because they were following food-allergy protocols. It's all worth it to be the healthiest version of myself for me and my family. I would be lying if I said I wasn't a little overwhelmed and a little overloaded!  I am thankful for this community and I look forward to learning more from you all. I need the help, that's for sure!
    • knitty kitty
      Help I’m cross contaminating myself,

      By knitty kitty · Posted

      On the AIP diet, all processed foods are eliminated.  This includes gluten-free bread.  You'll be eating meats and vegetables, mostly.  Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well.  Veggies should be fresh, or frozen without other ingredients like sauces or seasonings.  Nightshade vegetables (eggplant, potatoes, tomatoes, peppers) are excluded.  They contain alkaloids that promote a leaky gut and inflammation.  Dairy and eggs are also eliminated.   I know it sounds really stark, but eating this way really improved my health.  The AIP diet can be low in nutrients, and, with malabsorption, it's important to supplement vitamins and minerals.  
    • Yaya
      Does anyone here also have Afib

      By Yaya · Posted

      Thank you for responding and for prayers.  So sorry for your struggles, I will keep you in mine.  You are so young to have so many struggles, mine are mild by comparison.  I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of.  Following surgery: multiple symptoms/oddities appeared including ridges on fingernails, eczema, hair falling out in patches, dry eyes, upset stomach constantly and other weird symptoms that I don't really remember.  Gastro did tests and endoscopy and verified celiac disease. Re heart: I was born with Mitral Valve Prolapse (MVP) and an irregular heartbeat, yet heart was extremely strong.  It was difficult to pick up the irregular heartbeat on the EKG per cardiologist.  I had Covid at 77, recovered in 10 days and 2 weeks later developed long Covid. What the doctors and nurses called the "kickoff to long Covid, was A-fib.  I didn't know what was going on with my heart and had ignored early symptoms as some kind of passing aftereffect stemming from Covid.  I was right about where it came from, but wrong on it being "passing".  I have A-fib as my permanent reminder of Covid and take Flecainide every morning and night and will for the rest of my life to stabilize my heartbeat.   
    • larc
      Does anyone here also have Afib

      By larc · Posted

      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back.  My cardiologist offered me a collection of pharmaceuticals at the time.  But I passed on them. 
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure! Thank you kitty kitty   I am going to look this diet up right away.  And read the paleo diet and really see if I can make this a better situation then it currently is.  
×
×
  • 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.