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Muscle Weakness And Pain

answerseeker

By answerseeker
in Coping with Celiac Disease

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cristiana Veteran
cristiana
Posted

Thanks Pegleg - v. helpful.

 

Answerseeker, just to say my ferritin level is about the same as yours but has gone up about 10 points since starting the gluten-free diet, and my consultant was pleased it was going up but he has asked me to keep taking ferrous glucanate for another six months so I guess he thought there was still room for improvement.  I hope you get some answers soon.

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answerseeker Enthusiast
answerseeker
Posted
  • Author

Thanks Pegleg - v. helpful.

 

Answerseeker, just to say my ferritin level is about the same as yours but has gone up about 10 points since starting the gluten-free diet, and my consultant was pleased it was going up but he has asked me to keep taking ferrous glucanate for another six months so I guess he thought there was still room for improvement.  I hope you get some answers soon.

mine was 22 at diagnosis so it has gone up which is great. interesting how Kaiser says it's normal and doesn't treat it but yours has you taking supplements

 

Do you all think I should be taking supplements for these levels? I think I may go to a natural type dr and have them check all my levels and get their advice

 

btw, I got my dermatology referal so I will let you all know about the rash when I get my appointment, however my Dr. will not give me a hematology referal because he says my labs are "normal" yeah the huge bruises I get on the back of my legs are normal, the fast heart rate normal, the muscle pain and weakness......all normal. I'm beyond frustrated at Kaiser at this point but our insurance changes in Jan

GF Lover Rising Star
GF Lover
Posted

Lori,

 

Hang in there.  How disappointing about the Doctor visit, I'm sorry.  Hopefully the Derm visit will yield some information.  So many of us here have suffered 15-30 years trying to get help.  If you can get with a "Natural" doctor like you mentioned, make sure they can run lab tests on nutrition levels before you commit to one.  Keep bouncing ideas around here.  We will help all we can.

 

Colleen

cristiana Veteran
cristiana
Posted

Hi Answerseeker

I should say that my iron level was very low a year ago (7!) - they suspected the usual women's stuff.  So I was put onto iron then.  Finally they discovered it was celiac disease and it was at that point the gastro consultant said he'd like it to be higher than 20, which it was in the spring.   I think it is v. wise to get levels checked before going onto supplements, and I guess good to have them monitored from then on.  Here in the UK they aren't checking my B12 unless I ask for it, and when they did last check it was 195 so I think I would like that checked again soon, although I think the supplements are working because most of the pins and needles are disappearing.  

I do sympathise, all this waiting for answers isn't easy.

  • 2 weeks later...
skullgrl Rookie
skullgrl
Posted

One thing the muscle weakness and pain could be; my lovely rheumatologist told me they JUST raised the acceptable level of B12 from 190 to 700. How do they get it that wrong? Pernicious Anemia could be the cause (low b12 causing low iron).

cyclinglady Grand Master
cyclinglady
Posted

 Being at the "low" end of the range for iron is not ideal based on my research.    I'm pretty sure that if you exert any energy (e.g. exercise) or have a heavy period, you'll gobble up your iron stores.   That what happened to me during the past two years -- my ferritin levels kept going up and down.     Unless your intestines are completely healed, your body just can't keep your ferritin levels up.  I started with a 2 and now my ferritin stores are up to 55.  I'm continuing to take iron supplements until I reach 100!  Then I'll stop.   There is danger in having high ferritin levels, so labs ordered every few months to monitor them.  

answerseeker Enthusiast
answerseeker
Posted
  • Author

My husband's company is changing insurance in January so no more Kaiser. I am going to get all new labs run with a new Dr. I'm sure they will be up by then but it will at least be another set of eyes looking at my labs.

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