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Healing... Bowels, Neuropathy, Etc Etc

bny06

By bny06
in Coping with Celiac Disease

Recommended Posts

bny06 Apprentice
bny06
Posted

Hello everyone! So I am almost 6 weeks gluten free.. I think I'm being pretty strict.. haven't eaten out once! but i'm sure i'm still making mistakes... I was just curious if the healing process with myself is similar to yalls?? It took almost 4 weeks before my bowel habits (sorry tmi) have almost normalized (from what they used to be).. Initially when this all started I lost 16lbs abruptly (I'm thin in the first place) and went from having one bowel movement a day to 15+ and I was eating everything in site (loooots of gluten filled cookies included) to gain weight! I have gained 9lbs back!!! My extreme hunger seems to be improving, still hungry a lot, but I don't feel like im starving to death anymore thank goodness! And bowel habits are back down to once a day or maybe twice ... How long did it take yall that had these symptoms to get back to "normal" or did you ever??

My Neuro symptoms (diagnosed as peripheral neuropathy with sensory and motor involvement- ? CIPD/guilliane barre possibility) I think are stablizing.. I'm not longer waking up at night with the "dead" arms and legs sensations.. I am tingling more.. which is an improvement from total numbness.. and at times I feel my montor function MAY be better.. but I don't think worse.... (the neuro stuff all got worse the week i went gluten free) My mind is still completely frazzled (mostly from all the emotional trauma of the possibilities of the neuro stuff being something worse!!!!

Anyhow, I was just curious how this all measured up to everyone elses experience! Thanks!!!

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AVR1962 Collaborator
AVR1962
Posted

For me the digestive issues were not as bad, that cleared up very quickly. I had terrible GERD which took me 5 months to heal from. LOTS of nuero issues which I have been been mega supplementing with vitamins which has helped a great deal. Toughest ones to tackle have been the Ataxia (off balance), buzzing in my ears, vertigo and jumpy eyes which have been going on for 8 months. Recently increased my vit D and it seems like it's getting better. Bone loss which I am hoping has improved being on a low scid diet. I have been gluten free for 6 months.

John6307 Newbie
John6307
Posted

Hello everyone! So I am almost 6 weeks gluten free.. I think I'm being pretty strict.. haven't eaten out once! but i'm sure i'm still making mistakes... I was just curious if the healing process with myself is similar to yalls?? It took almost 4 weeks before my bowel habits (sorry tmi) have almost normalized (from what they used to be).. Initially when this all started I lost 16lbs abruptly (I'm thin in the first place) and went from having one bowel movement a day to 15+ and I was eating everything in site (loooots of gluten filled cookies included) to gain weight! I have gained 9lbs back!!! My extreme hunger seems to be improving, still hungry a lot, but I don't feel like im starving to death anymore thank goodness! And bowel habits are back down to once a day or maybe twice ... How long did it take yall that had these symptoms to get back to "normal" or did you ever??

My Neuro symptoms (diagnosed as peripheral neuropathy with sensory and motor involvement- ? CIPD/guilliane barre possibility) I think are stablizing.. I'm not longer waking up at night with the "dead" arms and legs sensations.. I am tingling more.. which is an improvement from total numbness.. and at times I feel my montor function MAY be better.. but I don't think worse.... (the neuro stuff all got worse the week i went gluten free) My mind is still completely frazzled (mostly from all the emotional trauma of the possibilities of the neuro stuff being something worse!!!!

Anyhow, I was just curious how this all measured up to everyone elses experience! Thanks!!!

I

Awakening Newbie
Awakening
Posted

Patience. Gluten free for one year. Digestion and bowel improvements showed within a few weeks. Neurological took some time and did seem to worsen at first then drastically improved. I've had years of damage to joints and muscles and low bone density so I have had to have other therapies to help. Two months gluten free the burning joints were gone and my almost narcolepeptic phases gone, 6 month thyroid test improved, 8 months gluten free the dead arms in the night and muscle spasms are gone. I still have random bizzare muscle twitches, usually when going to sleep. Best wishes, I too think the way we heal is individual.

quincy Contributor
quincy
Posted

Hello everyone! So I am almost 6 weeks gluten free.. I think I'm being pretty strict.. haven't eaten out once! but i'm sure i'm still making mistakes... I was just curious if the healing process with myself is similar to yalls?? It took almost 4 weeks before my bowel habits (sorry tmi) have almost normalized (from what they used to be).. Initially when this all started I lost 16lbs abruptly (I'm thin in the first place) and went from having one bowel movement a day to 15+ and I was eating everything in site (loooots of gluten filled cookies included) to gain weight! I have gained 9lbs back!!! My extreme hunger seems to be improving, still hungry a lot, but I don't feel like im starving to death anymore thank goodness! And bowel habits are back down to once a day or maybe twice ... How long did it take yall that had these symptoms to get back to "normal" or did you ever??

My Neuro symptoms (diagnosed as peripheral neuropathy with sensory and motor involvement- ? CIPD/guilliane barre possibility) I think are stablizing.. I'm not longer waking up at night with the "dead" arms and legs sensations.. I am tingling more.. which is an improvement from total numbness.. and at times I feel my montor function MAY be better.. but I don't think worse.... (the neuro stuff all got worse the week i went gluten free) My mind is still completely frazzled (mostly from all the emotional trauma of the possibilities of the neuro stuff being something worse!!!!

Anyhow, I was just curious how this all measured up to everyone elses experience! Thanks!!!

gluten free since April 2010. Gastro systems took months to calm down, maybe 7 or 8 bm's a day not too bad considering. ataxia took about 3 months to finally go away. Even gluten free cereals made me sick so be patient. stay away from dairy for awhile if you can.

doing much better now, back on low fat dairy such as greek yogurt and grass fed milk, eating and tolerating wild salmon etc. eating out is very trickly due to cross contamination. Dont trust them even when they say its gluten free, unless its PF Changs or Outback, they are the 2 major chains that seem to have it down correctly.

be patient takes alot of time to heal from my experience but I was 48 when dx'd so was on gluten all my life

bny06 Apprentice
bny06
Posted
  • Author

Thank Yall SOO much.. I can't tell you how much yalls replies calm my nerves (the mental ones that is)!

I have never been a patient person (with the fertility stuff we went through I had to learn patience, but this is a whole new level- when my neuro system isn't working correctly it truely is scarey)! It makes me feel so much better knowing that other people had neuro symptoms too, and that it just takes time..

AVR- I think I need to start supplementing on some vitamins again.. I need to get my Vitamin D Rx- it was pretty low.. My gerd responded great to Dexilant..(after they saw my espohagitis on endoscopy) but if i miss a few days its back with a vengence.. I'm scared to supplement too many vitamins right now since They think I was also B6 toxic!...I should have more results tomorrow from labs

John- thanks for your reply... It is great hearing that other people have similar symptoms (helps me feel a little less crazy!! :) I also get shocking/intense tingles etc in my extremities where they previously felt "dead" the past few weeks.. I was also hoping it was nerve regeneration/healing! Did your face ever get tired after simply smiling?? If i smile much my facial muscles are just wiped out!

Awakening- you said your neuro issues got worse before getting better... Did they get worse after you started the gluten free diet?? My neuro symptoms started the same week I went gluten free (granted I was still eating some caisen- I hadn't realized I had an issue with that). I need to be patient, but I just want my body to show me that it will either get better, or at least not worse.. I get freaked out after being worked up for ALS, when my symptoms get worse that panic in the back of my mind still sets in a little!

Quincy- that is great to know that those two chains seem truely have gluten free.. We never eat out now.. and hardly did before. And after having my caisen ingestion all week last week I have become super paranoid about any cross contamination.. I'm avoiding ALL processed foods even gluten free for now.. I had no idea that my body would be so sensitive.. I simplly thought- it says gluten free i'm good! Who knew!!!

Thank yall so much, I can't tell you how much your responses help me and my sanity! :)

John6307 Newbie
John6307
Posted

John- thanks for your reply... It is great hearing that other people have similar symptoms (helps me feel a little less crazy!! :) I also get shocking/intense tingles etc in my extremities where they previously felt "dead" the past few weeks.. I was also hoping it was nerve regeneration/healing! Did your face ever get tired after simply smiling?? If i smile much my facial muscles are just wiped out!

Awakening- you said your neuro issues got worse before getting better... Did they get worse after you started the gluten free diet?? My neuro symptoms started the same week I went gluten free (granted I was still eating some caisen- I hadn't realized I had an issue with that). I need to be patient, but I just want my body to show me that it will either get better, or at least not worse.. I get freaked out after being worked up for ALS, when my symptoms get worse that panic in the back of my mind still sets in a little!

Thank yall so much, I can't tell you how much your responses help me and my sanity! :)

It was and still is frustrating how fast my muscles fatigue. We have a small farm with some horses and just fixing a small section of fence will wipe me out. I am trying to back into my workout routine. Thirty minutes on my elliptical (at a slow, but healthy pace) and then some weights to work on strength. I pretty much give out after that too, but I know I need it especially my hands. I have several things to work on drip an flexor strength.

As Awakening said, things can get worse before they get better. From my researching neurological issues and nerve regeneration I have found that apparently it hurts when nerves are being damaged and the same pain can occur when they begin to grow back. I have had several days of zaps and shocks in my hands and feet. It has been a long time since anything like that has happened. So, I am hoping there is some re-growth and repair occurring although I know it will be a slow process. It took me over 10 years to get in this condition and I know it is not going to heal overnight.

I am finally beginning to settle down a bit about the whole gluten/dairy free thing and am more aware of what I eat. If you are a pizza eater, the Mellow Mushroom chain makes a gluten free pizza prepared in a different part of the restaurant and cooked in a separate oven. I tried it (because we both love Mellow Mushroom

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