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


Melissaann829

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Melissaann829 Apprentice

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

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

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

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

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

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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    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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