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carle

extreme muscle wasting

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Im 49. Diagnosed with celiac  10 months ago (gluten free for ten months. I was 5'11 153 lbs. Stomach pain and weight loss before diagnosis. In 3 months I was 125 lbs. Allot of muscle loss. Two old tendon injurys in hip and jaw flared up during this time and couldent straighten or stand on leg (put me in wheelchair). Better now but still there. 

So Ive been gluten-free for 10 months. Im starting to gain a little weight but my legs are skin and bones. Im wanting to hear from others who had similar experience. Thanks  

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It takes time to heal and regain weight. I didn't gain an ounce for a solid year & 1/2 at least. I am 5'2" & celiac had me down to 91 lbs. Sometime between year 2 & 3, I got back up to 95 lbs. & then stayed there forever. I got so discouraged that I quit weighing myself at all because the scale never changed. Then one day I weighed myself around yr. 3.5 and I was 98 lbs.

I had horrid muscle wasting. If I bent over & pulled a weed my arm & back would make me pay for 5 days. Finally around year 3 I healed enough to be able to do light, very light gardening without injuring myself.

We are all different people & some take longer, some don't. Hang in there!

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Hi Carle-I have had celiac's disease since I was 2 years old, diagnosed at 6, but I didn't have GI involvement until I was an adult. Make sure you are completely gluten free. Remember, this is an immune system sensitivity, and every time you eat gluten, it strengthens your immune systems reaction to it. Gluten has been related to dementia which is reversible as long as you avoid gluten. We have it easy, there are so many options now. I had a flare up 3 years ago when I was vegetarian and eating a soy-based product in bulk-I never got the ingredient list-2nd ingredient was gluten. I have always been well controlled, but that put me over the edge. I lost 20 pounds-ended up weighing less than 100 pounds. It took my GI a couple of months to heal and probably 6 months to be completely healed. It depends on how damaged your GI was before you were diagnosed. You will heal but must be vigilant about avoiding gluten. Good luck.

 

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Thanks for the response.  Im very carefull of what I eat now. Lots of meat, fish, veg, brown rice, yogurt and eggs.  Do you guys think there is a connection between celiacs and my tendon issues? Its really stopping me from exercising.

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I do carle. I had unbelievable pain. Muscles, tendons, bones, joints. Bone pain not just in joints. For instance, in the middle between the elbow & the wrist. I thought I would be in a wheelchair within a years time. No painkillers could touch it, they did zilch. Body parts would swell and the nerves were screamingly sensitive. At times I would just about faint in pain if so much as a kleenex touched my hand. I got foot cramps all the time. I thought that was just a feature of the aging process. I was wrong. I haven't had a foot cramp in so long I don't even remember. All my pains went away. I haven't had a migraine in a couple years.

You just have to give it time. Try to be patient. Things WILL get better! I promise! The things you're talking about are going to take time though. Just stay the course. 

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25 minutes ago, carle said:

You guys are the best! Just hearing encouraging words makes a huge difference! I have another question. Can malabsorption happen without GI symptoms?

Yes.  When I was diagnosed,  anemia was my only known symptom caused by malabsporption.  I was shocked when my GI suggested testing me for celiac disease.  

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1276329/

Edited by cyclinglady

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