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

[mancalacat]

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!! 

[gluten-free Survivor]

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]

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]

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.