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serine added a topic in Celiac Disease - Related Disorders & ResearchPlease Help, Celiac Symptoms Plus Other Autoimmune Disease?Hi,
I am new to this site and was diagnosed with celiac's disease almost three years ago. Am wondering if I developed another autoimmune disease within the 9 years I thought it was just IBS... because even on the diet I am feeling very sick almost every day. Please help...
I felt much much better when I started the diet, felt like I had a lot of energy, no more constant infections, no more rash, started to have restful sleep, etc. But a few months later I caught EBV. I had mono for two years and had to go on antivirals because my IgM was positive for a long long time (should only be two weeks!), was diagnosed with chronic EBV, but antivirals brought virus down to a low level and I don't think that is causing current symptoms. (I had some of the kidney symptoms well before I had the virus, and I had flare-ups of symptoms while on antivirals) so the symptoms are:
FEVERS, swollen lymph nodes in the back of my neck, tingly/malaise/sick feeling in my whole body, dark urine, blood in urine, burning to pee, increased urine frequency, kidney pain in front under ribs on either side, flank kidney pain which makes me feel nauseous, MUSCLE WEAKNESS, pain in muscles but mainly with pressure/ not always with use, pain and stiffness in joints, joint stiffness, (hard to unlock door, start car from pain), skin hurts to touch, RAVENOUS HUNGER to the point where I can't get a good nights sleep and am constantly waking up with hunger pains, fatigue.
these symptoms flare up with stress or exercise (with no abdominal symptoms), or after eating gluten...usually a few days after I have "the poops". The symptoms bother me almost every day in a year because flare-ups can be months long. Tests have shown ketones in urine, scaring in kidneys, high CPK, weird test results that say I'm having rhabdomyolysis and dehydration when I look them up...of course doctors have been horrible and no help, and my ANA is negative so they ignore that I may have another autoimmune issue.
It's been really hard mentally since I can't exercise.. the last time I was feeling better I went to yoga, but woke up with really weak muscles, a high fever, and swollen lymphs nodes the next day. Kidney and urine symptoms followed these. Same happened after a night of dancing once. . Joint/muslce pain with pressure just started up this year, and the kidney/muscle weakness issues have been bothering me for 6 years.
does anyone deal with similar issues? and what is it? am starting to think I have polymyositis or something similar and scary. Or does this sound like celiac symptoms of someone who is super sensitive? please help!! thanks and Merry Christmas
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