Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

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.

Archived

This topic is now archived and is closed to further replies.

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. DayaInTheSun
      - DayaInTheSun replied to DayaInTheSun's topic in Coping with Celiac Disease
      5

      Being a burden to family/friends

      Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid. Before that ...
    2. Kiwifruit
      - Kiwifruit replied to Kiwifruit's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Years of testing - no real answers

      This is all really useful information, thank you so much to you both. I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    3. trents
      - trents replied to Gill.brittany8's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      9 Year Old test results - help interpret

      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the...
    4. Gill.brittany8
      - Gill.brittany8 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      9 Year Old test results - help interpret

      Hi everyone After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra i...
    5. Mnofsinger
      - Mnofsinger replied to Mnofsinger's topic in Related Issues & Disorders
      7

      Food Tasting Salty

      Those are great points and some follow up thoughts and ideas. I think you're both stating the same thing in two different ways, but I appreciate the "accuracy" of what you're getting to. 1. Are you both stating that the "too salty of a taste" could be triggered by a histamine reaction, and the flavor is coming from the electrolytes? If...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,834
    • Most Online (within 30 mins)
      7,748
    mcsmommy
    Newest Member
    mcsmommy
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • DayaInTheSun
      Being a burden to family/friends

      By DayaInTheSun · Posted

      Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid.  Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid.  Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. 
    • Kiwifruit
      Years of testing - no real answers

      By Kiwifruit · Posted

      This is all really useful information, thank you so much to you both.    I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    • trents
      9 Year Old test results - help interpret

      By trents · Posted

      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
    • Gill.brittany8
      9 Year Old test results - help interpret

      By Gill.brittany8 · Posted

      Hi everyone  After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case.   The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much.  result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ  
    • Mnofsinger
      Food Tasting Salty

      By Mnofsinger · Posted

      Those are great points and some follow up thoughts and ideas. I think you're both stating the same thing in two different ways, but I appreciate the "accuracy" of what you're getting to.   1. Are you both stating that the "too salty of a taste" could be triggered by a histamine reaction, and the flavor is coming from the electrolytes? If that is the case, wouldn't the individuals mouth always be salty during a "Glutening" situation, or are we saying that the person could get "use to the flavor" until introducing food or beverage and that could be enough to "stir the pot" and notice the salty flavor? 2. To push back on "#1": If that were true anyone with issues of histamine releasing foods/treatments would experience the same thing. Also, I did not experience a situation where most beverages were "too salty". Thoughts?
×
×
  • Create New...