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Please Help, Celiac Symptoms Plus Other Autoimmune Disease?

4 posts in this topic


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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Some of those sound like classic UTI infections (burning, dark coloring, frequency). :(

I can't remember how many doctors it took for them to figure out my gallbladder problem. Just keep with it, you'll find one that can help ya, i'm sure.


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Hi, I had a neighbor who was diagnosed with porphyria and had a lot of the same symptoms as you. I no longer live near her but she had some other autoimmune issues too. It is a rare condition but it effected many of her organ systems including her kidneys and I remember her saying that it took years for her to get the right diagnosis.


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I don't think your symptoms are from Celiac. (everyone can have individual reactions, but this is not common amongst the chatters here)


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    • Long pause because I wanted my latest lab results and they took forever.  Cortisol, ACTH, estadiol, vitamin a and whatever else were all fine. They are retesting my thyroid in four weeks. I definitely bought the wrong product and glutened myself a few weeks back so I guess that has to wait which really irritates me. My gliadin iga ab was greater than 100 almost two yrs ago at diagnosis so I guess sometime next yr I'll redo that and hope it's down :-/. Trying to do all the right things and get bad information from doctors.  Thanks for all the info you've shared and helped me with. I've had lab work every month since May and will next month for the thyroid again. Sigh. 
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    • Hey all, I'm new here but not new to celiac. Wheat intolerances are all over the place in my family  as well as AI thyroid issues (Hashis). When my CRO and ESR rates were extremely high, my doctor suggested it could be gluten/dairy and I was gluten free for the better part of a year. I've been tested in the past twice, once with a "false positive" and one totally negative. Going gluten free didn't help my inflammation rates go down (they went up actually) and I became more lenient with my diet recently because of the nature of my work (I'm a chef), with little negative effect. At my last appointment, I confessed to having had eaten gluten with no real issue for the past several weeks, and when the doctor prescribed other blood work I wanted a celiac panel "just in case" but we both agreed they'd all be negative.  WELP I just got my results back via email, and the primary panel came back all within normal range, but the celiac reflex panel came back positive  my results are posted below  I've googled what a celiac reflex panel is and haven't come up with anything, I've searched these forums and others and can't find anything that even really explains what this test is. I'd love some help understanding the different tests as well as my results. Thank you in advance!        Ps, it looks like my crop job lopped off the top result, but for those who can't tell, the result is Anti-Gliadin Ab Iga 7    Thanks again!      
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