Guest guest Posted September 13, 2008 Report Share Posted September 13, 2008 Hi again, A few people on this list have mentioned having neuropathy and I was wondering if you (and others) could describe what the symptoms are. I saw a neurologist some time in the last year and he said that I probably had some sensory neuropathy in my feet/legs, but not motor neuropathy. I declined to get further testing at that time, because my feeling was that there wasn't much I could do about it. I have been more concerned with weird feelings of numbness that have occurred in my arms and hands, but the doctor told me that neuropathy is mainly in the legs and feet. But then again, recently my friend who is a doctor in Cleveland said she was treating an older Celiac patient for neuropathy in his hands. thanks again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2008 Report Share Posted September 13, 2008 My 7 yr. old who was just diagnosed with Celiacs in July has had " tangley feet " at bedtime since she could talk. Are your symptoms specific to quick change in body position, like lying down? Or is it all the time? Nell Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2008 Report Share Posted September 14, 2008 First off Neuropathy can be in your arms and hands. If your doctor says it is not then he is only thinking of Diabetic Neuropathy which is usually in the legs and feet. I have Neuropathy in both areas. It involves a burning, tingling, ant crawling feeling in my arms, hands, feet and legs. It can get rather irritating. It also involves the motor neurons. They thought for about six months that I had ALS because it was so severe. After being diagnosed with it locally I was sent to UCSF Medical Center for further testing and there it took three months for them to conclude that I have peripheral neuropathy. It was a very depressing point of my life thinking that I had only three years to live. But it was such a relief to find that it was not what they thought it was. Neuropathy is often associated with Celiac Disease but I also have Ankylosing Spondylitis and Neuropathy is also associated with this. My belief is that I developed both as a result of my undiagnosed celiac disease. There are medications that help with the neuropathic pain. So I would suggest that you continue to see the Neurologist. Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 I've dealt with the tingling, numbness in my feet and legs (more so than arms and hands) - but it's gotten a lot better since i've gotten a lot healthier. I still feel it in my feet every now and again...looking back, i remember getting "pins & needles" a lot when i was a kid, im guessing that ties into it. I was definitely a celiac kid and didnt know it until post college, i had lots of signs, just didnt have the "sick" symptom until i got older. From: on behalf of redchicknSent: Sat 9/13/2008 9:32 AM Subject: [ ] neuropathy symptoms Hi again, A few people on this list have mentioned having neuropathy and I was wondering if you (and others) could describe what the symptoms are. I saw a neurologist some time in the last year and he said that I probably had some sensory neuropathy in my feet/legs, but not motor neuropathy. I declined to get further testing at that time, because my feeling was that there wasn't much I could do about it. I have been more concerned with weird feelings of numbness that have occurred in my arms and hands, but the doctor told me that neuropathy is mainly in the legs and feet. But then again, recently my friend who is a doctor in Cleveland said she was treating an older Celiac patient for neuropathy in his hands. thanks again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 When I first got sick, I had strong sensations of ants running up and down my legs and a buzzing and humming feeling around my scalp. I also started noticing some numb spots on my ankles and wrists. These days, now that I am well (on a good diet), the sensations are gone. But the numb spots remain. Thankfully, the numb spots are small and I don't really notice anymore. ----- Original Message ----From: Wallace <AWallace@...> ; Sent: Sunday, September 14, 2008 11:12:07 PMSubject: RE: [ ] neuropathy symptoms I've dealt with the tingling, numbness in my feet and legs (more so than arms and hands) - but it's gotten a lot better since i've gotten a lot healthier. I still feel it in my feet every now and again...looking back, i remember getting "pins & needles" a lot when i was a kid, im guessing that ties into it. I was definitely a celiac kid and didnt know it until post college, i had lots of signs, just didnt have the "sick" symptom until i got older. From: on behalf of redchicknSent: Sat 9/13/2008 9:32 AM Subject: [ ] neuropathy symptoms Hi again, A few people on this list have mentioned having neuropathy and I was wondering if you (and others) could describe what the symptoms are. I saw a neurologist some time in the last year and he said that I probably had some sensory neuropathy in my feet/legs, but not motor neuropathy. I declined to get further testing at that time, because my feeling was that there wasn't much I could do about it. I have been more concerned with weird feelings of numbness that have occurred in my arms and hands, but the doctor told me that neuropathy is mainly in the legs and feet. But then again, recently my friend who is a doctor in Cleveland said she was treating an older Celiac patient for neuropathy in his hands. thanks again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2008 Report Share Posted September 15, 2008 did anyone else get neuropathy in their mouth or face - whenever i get glutened it seems to make me slur slightly and my upper lip and nose seem slightly numb. then, thankfully, it goes away - but, needless to say, freaks me out a bit From: [mailto: ] On Behalf Of WallaceSent: Sunday, September 14, 2008 11:12 PM ; Subject: RE: [ ] neuropathy symptoms I've dealt with the tingling, numbness in my feet and legs (more so than arms and hands) - but it's gotten a lot better since i've gotten a lot healthier. I still feel it in my feet every now and again...looking back, i remember getting "pins & needles" a lot when i was a kid, im guessing that ties into it. I was definitely a celiac kid and didnt know it until post college, i had lots of signs, just didnt have the "sick" symptom until i got older. From: on behalf of redchicknSent: Sat 9/13/2008 9:32 AM Subject: [ ] neuropathy symptoms Hi again, A few people on this list have mentioned having neuropathy and I was wondering if you (and others) could describe what the symptoms are. I saw a neurologist some time in the last year and he said that I probably had some sensory neuropathy in my feet/legs, but not motor neuropathy. I declined to get further testing at that time, because my feeling was that there wasn't much I could do about it. I have been more concerned with weird feelings of numbness that have occurred in my arms and hands, but the doctor told me that neuropathy is mainly in the legs and feet. But then again, recently my friend who is a doctor in Cleveland said she was treating an older Celiac patient for neuropathy in his hands. thanks again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 My son experienced this. He had to use his epi-pen once because he was numb and felt his throat was swelling while eating general's chicken. Then his gut swelled up. This was before his diagnosis. > From: Bronwyn Syiek <bronwyn@...> > Subject: RE: [ ] neuropathy symptoms > > Date: Monday, September 15, 2008, 10:18 AM > did anyone else get neuropathy in their mouth or face - > whenever i get > glutened it seems to make me slur slightly and my upper lip > and nose > seem slightly numb. then, thankfully, it goes away - but, > needless to > say, freaks me out a bit > > ________________________________ > > From: > [mailto: ] On Behalf Of > Wallace > Sent: Sunday, September 14, 2008 11:12 PM > ; > > Subject: RE: [ ] neuropathy symptoms > > > I've dealt with the tingling, numbness in my feet and > legs (more so than > arms and hands) - but it's gotten a lot better since > i've gotten a lot > healthier. I still feel it in my feet every now and > again...looking > back, i remember getting " pins & needles " a > lot when i was a kid, im > guessing that ties into it. I was definitely a celiac kid > and didnt > know it until post college, i had lots of signs, just didnt > have the > " sick " symptom until i got older. > > ________________________________ > > From: on behalf of redchickn > Sent: Sat 9/13/2008 9:32 AM > > Subject: [ ] neuropathy symptoms > > > > Hi again, > > A few people on this list have mentioned having neuropathy > and I was > wondering if you (and others) could describe what the > symptoms are. > > I saw a neurologist some time in the last year and he said > that I > probably had some sensory neuropathy in my feet/legs, but > not motor > neuropathy. I declined to get further testing at that time, > because > my feeling was that there wasn't much I could do about > it. > > I have been more concerned with weird feelings of numbness > that have > occurred in my arms and hands, but the doctor told me that > neuropathy is mainly in the legs and feet. But then again, > recently > my friend who is a doctor in Cleveland said she was > treating an > older Celiac patient for neuropathy in his hands. > > thanks again, > Quote Link to comment Share on other sites More sharing options...
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