Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Please Help, Celiac Symptoms Plus Other Autoimmune Disease?
0

4 posts in this topic

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 :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,878
    • Total Posts
      919,449
  • Topics

  • Posts

    • So I've been glutened....
      That sounds like a plan JMG.  If things aren't working then make a change, hopefully a positive change.  It seems to me we have more noticeable symptoms sometimes after being gluten-free a while.  I made a mistake last night and ate some tuna canned in water.  It definitely wasn't boring.  I usually have more sense than to eat tuna canned in water but screwed up last night.  They canned  it in broth of some sort.  Ingredients say vegetable broth and soy.  Yuck, not good for me.  It sure tasted good though, just ouch.  I am not saying it had gluten in it, but it does have soy and some kind of unnamed veggie monsters.  So it could be soy, or carrots or some other disgusting vegetable that got me.   Not all celiacs have additional food intolerances beyond gluten, but some do.  My gut could testify to that.  Anyway, if you have bloating, cut out all carbs and sugar for starters.  And try peppermint tea or Altoids.  Over here we have something called Pepto Bismol that helps soothe gut pain and another neat thing called aspirin.  And gluten-free beer as needed.  
    • Gluten free apparently not helping entirely
      Jean, Maybe your boss can find you a job in the office for a while?  It's worth asking maybe? It's not easy being on constant travel with celiac disease but it can be done.  Your effort to find safe food is going to be harder than most but it is not impossible.  But if you can't manage it you should really think about getting a non-travel job.  Your boss may be willing to work with you on an office position, even if it's temporary.  That would give you some time to look for a local job and also eat a safer diet. It's really up to you to control your diet and make sure it is safe.  If you can't figure out how to  do that while traveling you owe it to yourself to figure a way out of the travel. Celiac disease isn't always fun and games.  Not always.   I hope you find a way to improve your circumstances.
    • Gluten Free baby food pouches?
      Anyone know of any baby food pouches that are gluten free?  We love to have them on the go for our kids (not just baby), but I have no idea which ones to get now!  We used to get Meijer brand and Plum.   Thanks!
    • gluten free, oat free, egg free breakfast ideas needed for 6 year old
      Thanks for everyone's suggestions!  I think I felt at a loss when we had to cut oats- we used to do cheerios and oatmeal regularly and now those are out.  She has a sensitivity to oats as well as wheat/barley/rye. 
    • So I've been glutened....
      The bloating has, if anything, got worse. It seems better when I'm lay down, when I stand it gets worse. Although the lymph swelling has gone down so maybe I'm through the worst. Hope so anyway... I never used to get a great deal of GI symptoms. Certainly not so serious as the other stuff. It's making me wonder if I just react differently now having been gluten-free for some time. I've noticed lot's of you saying that reactions seem to change over time. Of course its possible the other stuff was masking the GI things. I almost dont trust my memory of those times anymore because a whole chunk of my life seems to have been lived through a brain fog. Tomorrow I'm thinking of going away for a couple of days, maybe just taking some ultra simple food with me so I can try and settle my stomach by boring it into submission      
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,918
    • Most Online
      1,763

    Newest Member
    dae
    Joined