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Am I Ever Going To Feel Like "me" Again? :-(

Melissaann829

By Melissaann829
in Coping with Celiac Disease

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Melissaann829 Apprentice
Melissaann829
Posted

I've had over 10 years of illness... back and forth to every kind of doctor there is to see if someone could help me. I had no way of linking all of my health issues to "one condition" such as Celiac. ....Finally a diagnosis... I've been gluten free for a year now and today, i feel sad.... Probably because I am in physical pain. Will I ever feel like me again? I've shrunk in height (which explains the horrible bone, joint, foot pain), and now I am experiencing back pain along with it. I am in physical therapy -- I am only 37 years old and I weigh 138 lbs. I feel like my body will never be the same. My foot pain came back -- some days are worse than others. I am assuming this nerve pain is permanent considering it is not improving anymore than "what is".. although I'll admit that it feels 10x worse when I eat gluten accidentally. I am a generally happy person, however, this bodily pain has put a damper on my social/active life. I used to love soccer and now I think to myself, "Oh Gosh, how bad am I going to feel the next morning after a soccer game?" ..or "What if I sprain my ankle again?" ....there is often times a loss of feeling in my feet (or the opposite which is stabbing, burning pain). Anyone else experience this type of thing? Words of encouragement out there? Thanks, guys! Melissa. :)

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ravenwoodglass Mentor
ravenwoodglass
Posted

Yea I have also been there. Sometimes it seems that healing can take so long we wonder if it will ever happen. For me the key was eliminating soy in all forms except lecithin from my diet. Don't know if that will help for you but it took me years to figure out the soy connection. If soyed or glutened the pain returns but most of the time now I am pain free. Some folks also have issues with the nightshades that do the same thing so if you don't notice a difference after a couple of months off soy try adding soy back and eliminating the nightshades. You also might try eliminating both for a couple months and then adding them back in one at a time to see if the pain returns.

Goof Rookie
Goof
Posted

I didn't have the numbness so much in my feet and legs as much as my hands. (As a guitar player, it still freaks me out!!) But that will improve with a consistent gluten-free diet, no cross contamination or anything. I'm only about 6 months into the diet, so it's been really up and down. But I have noticed that when I am truly gluten free, the numbness does go away.

bny06 Apprentice
bny06
Posted

I have weakness/numbness in my hands and one foot, and it defintely freaks me out!! The weight loss and generalized not well feeling is manageable, but the thought of this loss of dexeterity/hand issue really makes me a little on freak out mode, since my job requires a very steady and strong hand! I am hoping that things improve - i'm only 3 weeks out on a gluten free diet, and i'm sure i'm getting cross contamination lots of places since i'm still learning! I agree though I want my old energetic strong self back (i'm 30)! I am just hoping this all improves and doesn't get any worse! Good luck!

T.H. Community Regular
T.H.
Posted

I feel like my body will never be the same. My foot pain came back -- some days are worse than others. I am assuming this nerve pain is permanent considering it is not improving anymore than "what is".. although I'll admit that it feels 10x worse when I eat gluten accidentally. ..or "What if I sprain my ankle again?" ....there is often times a loss of feeling in my feet (or the opposite which is stabbing, burning pain). Anyone else experience this type of thing? Words of encouragement out there? Thanks, guys! Melissa. :)

It's not always the case, but a fair number of people here who continue to have symptoms seem to find out that something they are ingesting ends up being the problem. Allergies, intolerances, salicylates, sulfites, or even low level gluten cc.

I was diagnosed in my late thirties and things that didn't resolve immediately were joint pain, frequent injuries that never seemed to heal all the way, nerve problems and pain, etc... For myself, I tried a few dietary changes and one year later, the problems are now gone.

1. I had food allergies/intolerances. Dairy, soy, nightshades, and corn (or most grains) seem to be the most common that I'm seeing people mentioning here on the forum as being an issue. I do no get any hives from my allergies. Some I test positive for with allergy tests, and some I found by doing a food journal and dropping most processed foods from my diet. After having dropped them, if I eat them now, I get aches and pains, flu-like symptoms, headaches, all sorts of fun stuff that I never even noticed as separate symptoms before - they were just part of the general run of 'blech.'

2. I react to lower levels of gluten than the average celiac. gluten-free processed food typically contains a low level of gluten, and while this is fine for most celiacs, a minority can react to this amount. I had to eliminate gluten-free processed food from my diet to finally heal. When I did that, my neurological issues went away, some injuries that always seemed to recur finally healed completely. If I get gluten cc, it comes back.

It may not be your situation, but keeping a food journal and eating plainer foods for a while (easier to keep track of symptoms vs. foods eaten), might help, and probably at the very least can't hurt, yeah?

cougie23 Explorer
cougie23
Posted

I have weakness/numbness in my hands and one foot, and it defintely freaks me out!! The weight loss and generalized not well feeling is manageable, but the thought of this loss of dexeterity/hand issue really makes me a little on freak out mode, since my job requires a very steady and strong hand! I am hoping that things improve - i'm only 3 weeks out on a gluten free diet, and i'm sure i'm getting cross contamination lots of places since i'm still learning! I agree though I want my old energetic strong self back (i'm 30)! I am just hoping this all improves and doesn't get any worse! Good luck!

Freaks me out too!!! :blink: there are times when I am walking my toes go numb...then I lose compleate feeling in one or two toes...compleatly gone ..like they've been amputated!!! the worse was whan that happened while walking to the chiropractor...ALL my toes disapeared!!! I couldn't feel any toes...talk about FREAKY...my Chiropractor was a little freaked as well! (this was just BEFORE I was diagnosed). thats not even talking about my ear going numb..or arms, hands,cheek...makes you feel like your having a stroke!!! I also get this problem when sitting and/ or painting/ writing .

Just started de-glutening my diet..so only time will tell! :unsure::rolleyes::)

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