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Neuromuscular Worries!

pbc+celiac

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pbc+celiac Rookie
pbc+celiac
Posted

Just diagnosed on Wednesday. No GI Symptoms but difficulty swallowing and this prompted an Endoscopy and boom celiac. Prior to this I had neuromuscular issues and being a nurse and having an autoimmune disorder already(primary biliary cirrhosis) I thought I had MS!!! I never talked to anyone because I thought it was in my head. But I could not hide the difficulty swallowing, muscle twitching, lack of coordination in my hands, or muscle weakness. I was a Jazzercise instructor and unable to continue due to these problems. I had no idea what was going on but new I had no strength and needed to rest all the time.

Just wondering when or if these problems should resolve. I have only been gluten free for 3 days. Anyone have symptoms that progress even on Gluten free diet? Or just cause it not to worsen anymore.

I have so many questions and feeling lousy. It is very hard to not be active I loved teaching jazzercise and hope to get back to that ASAP but know this has been ravaging my body for years it won't be an overnight fix, but boy am I ready.

Thanks for any input.

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Jestgar Rising Star
Jestgar
Posted

I had balance issues that went away slowly, over 6-8 months, I think. One day I just realized that I no longer felt compelled to hold the rail when going down stairs.

I think the neuro stuff goes away more slowly.

ginnybean32 Newbie
ginnybean32
Posted
Just diagnosed on Wednesday. No GI Symptoms but difficulty swallowing and this prompted an Endoscopy and boom celiac. Prior to this I had neuromuscular issues and being a nurse and having an autoimmune disorder already(primary biliary cirrhosis) I thought I had MS!!! I never talked to anyone because I thought it was in my head. But I could not hide the difficulty swallowing, muscle twitching, lack of coordination in my hands, or muscle weakness. I was a Jazzercise instructor and unable to continue due to these problems. I had no idea what was going on but new I had no strength and needed to rest all the time.

Just wondering when or if these problems should resolve. I have only been gluten free for 3 days. Anyone have symptoms that progress even on Gluten free diet? Or just cause it not to worsen anymore.

I have so many questions and feeling lousy. It is very hard to not be active I loved teaching jazzercise and hope to get back to that ASAP but know this has been ravaging my body for years it won't be an overnight fix, but boy am I ready.

Thanks for any input.

Hi there you sound like what Ive been through except I dont have PBC. I too had difficulty swallowing with my GI symptoms and that is how I got dx. I didnt have major GI symptoms until Nov of 08 but I have had so many neuromuscular problems its not funny...I was dx with carpal tunnel in 02 and had surgery on both hands. In 04 I was dx with thoracic outlet syndrome due to "cervical ribs" in my case. I had the left one removed which was very painful and I did get better as far as the pain goes I still have lingering problems due to the muscle wasting of my hands. I still get numbness and tingling in both my hands as well as in my left foot. Ive only been gluten free a little over a week and Im still learning what to avoid so Im sure it will take awhile to heal not only my GI system but the rest of my body as well.

Have you had yourself checked for auto immune dx like scelorderma, RA and lupus? I am awaiting my results back on this myself. I got livedo reticularis and raynaud's syndrome which is a discoloration patten on the skin usually just on forearms and lower legs but I have it all over my body and thats when my regular doc deceided to check me for auto immune. Ive got a lot of symtoms for scelorderma which sucks...PBC can be caused by scelorderma and lupus I think but you'll have to look it up for yourself. Anyway my doc told me Celiacs often have auto immune dx as well. So this sucks I know..

Did they tell you to stay away from dairy? I was so my intestines can heal faster, you may want to try it. Im definately getting more energy since I went gluten-free and dairy free over a week ago, but still have a long ways to go....Im getting terrible headaches mosty in the am when I first get up. I feel like I have a hang over and I havnt touched alcohol in over a month. Ive been told by folks here its gluten withdrawl...I wish it would hurry up...but thats the worst thing I think about going gluten-free other than totally changing your life. Now thats a whole other issue...but I guess if I get better and can have my old self back it will be worth it...one day...lol..

I too am a nurse so when I have gotten the fatigue, numbness tingling, muscle twitching, raynauds I thought I had MS or Lymphoma because all my symptoms were similar...Im glad I know its probably Celiac that has caused all my issues but Im going to make sure I get tested for everything it could possibly be since I have been sooooo misdiagnosed in the past. Who's to say Celiac didnt cause all my issues..Just something to think about.

pbc+celiac Rookie
pbc+celiac
Posted
  • Author
Hi there you sound like what Ive been through except I dont have PBC. I too had difficulty swallowing with my GI symptoms and that is how I got dx. I didnt have major GI symptoms until Nov of 08 but I have had so many neuromuscular problems its not funny...I was dx with carpal tunnel in 02 and had surgery on both hands. In 04 I was dx with thoracic outlet syndrome due to "cervical ribs" in my case. I had the left one removed which was very painful and I did get better as far as the pain goes I still have lingering problems due to the muscle wasting of my hands. I still get numbness and tingling in both my hands as well as in my left foot. Ive only been gluten free a little over a week and Im still learning what to avoid so Im sure it will take awhile to heal not only my GI system but the rest of my body as well.

Have you had yourself checked for auto immune dx like scelorderma, RA and lupus? I am awaiting my results back on this myself. I got livedo reticularis and raynaud's syndrome which is a discoloration patten on the skin usually just on forearms and lower legs but I have it all over my body and thats when my regular doc deceided to check me for auto immune. Ive got a lot of symtoms for scelorderma which sucks...PBC can be caused by scelorderma and lupus I think but you'll have to look it up for yourself. Anyway my doc told me Celiacs often have auto immune dx as well. So this sucks I know..

Did they tell you to stay away from dairy? I was so my intestines can heal faster, you may want to try it. Im definately getting more energy since I went gluten-free and dairy free over a week ago, but still have a long ways to go....Im getting terrible headaches mosty in the am when I first get up. I feel like I have a hang over and I havnt touched alcohol in over a month. Ive been told by folks here its gluten withdrawl...I wish it would hurry up...but thats the worst thing I think about going gluten-free other than totally changing your life. Now thats a whole other issue...but I guess if I get better and can have my old self back it will be worth it...one day...lol..

I too am a nurse so when I have gotten the fatigue, numbness tingling, muscle twitching, raynauds I thought I had MS or Lymphoma because all my symptoms were similar...Im glad I know its probably Celiac that has caused all my issues but Im going to make sure I get tested for everything it could possibly be since I have been sooooo misdiagnosed in the past. Who's to say Celiac didnt cause all my issues..Just something to think about.

pbc+celiac Rookie
pbc+celiac
Posted
  • Author

Thanks so much I feel a relief to know I am not crazy. I was tested along time ago with PBC diagnosis back in 1995 but I know theses autoimmune things can change. I am going to Mayo clinic where my liver doc is and hopefully be able to see celiac expert as well.

Thanks again I may try to cut out dairy too.

Alicia

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