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Please Help, Celiac Symptoms Plus Other Autoimmune Disease?
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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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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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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Going gluten free may be beneficial if you're among the roughly 10 percent of people who suffer from celiac disease, a genetic immune disorder, ... View the full article
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