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Hi everyone,

I apologize if this is a long post, but I am in desperate need of help. I started having neurological symptoms in Dec 2018. Muscle twitching, muscle weakness, balance problems, joint and muscle pain. Became TERRIFIED of ALS. Went to the neurologist. She did a blood test and diagnosed me with Non-Celiac Gluten Sensitivity.

1.This is where my first problem starts. Other doctors have told me that NCGS isn’t real. I have also read the blood tests aren’t reliable, but this neurologist is swearing by it?

2.I admit I haven’t managed to stay gluten free for a whole 2 weeks yet. It seems that my muscle twitching (I have no vitamin deficiencies) gets way worse when I stop eating gluten, and gets better when I reintroduce gluten. Is this some sort of weird withdrawal?

3.I have a dull ache that only happens on the right side of my body. On my palm, my butt bone, and bottom of my foot. It also feels like my ankle and wrist are weak when I walk. Does anybody else have this?

I will be so grateful if someone can answer these questions. I live in Alabama and unfortunately gluten free is laughed at around here which has led me to believe I have ALS even though I have had 2 clean EMGs. I don’t mean to be dramatic but I just can’t function with this worry. Thank you

Erica


 

 

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Did the neurologist do an MRI of your brain? I ask because gluten ataxia causes white spots similiar to the lesions seen with MS. Those white spots, called UBOs, are diagnostic of the antibodies attacking the brain. Folks that have gluten ataxia can have it for a long time before gut symptoms become obvious. If you do have gluten ataxia, perhaps what your neuro meant when he/she said NCGS, you have to be very, very strict with the diet. Even then it can take some time for symptoms to resolve. For example it was 6 months before I could walk unaided or tell you what the fork you held up in front of me was called. Make sure your doctor is checking your B12 levels and if they are under 500 supplement with a sublingual. Be aware that the change to wanting the levels above 500 is fairly recent so some docs still go by the 250 levels so be sure to get copies of your tests. 

Try and be patient. Healing takes time and being very VERY strict with the gluten free lifestyle. A physical therapist can be helpful with balance and movement issues so do ask for a referral from the neuro. I hope you heal quickly.

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5 minutes ago, ravenwoodglass said:

Did the neurologist do an MRI of your brain? I ask because gluten ataxia causes white spots similiar to the lesions seen with MS. Those white spots, called UBOs, are diagnostic of the antibodies attacking the brain. Folks that have gluten ataxia can have it for a long time before gut symptoms become obvious. If you do have gluten ataxia, perhaps what your neuro meant when he/she said NCGS, you have to be very, very strict with the diet. Even then it can take some time for symptoms to resolve. For example it was 6 months before I could walk unaided or tell you what the fork you held up in front of me was called. Make sure your doctor is checking your B12 levels and if they are under 500 supplement with a sublingual. Be aware that the change to wanting the levels above 500 is fairly recent so some docs still go by the 250 levels so be sure to get copies of your tests. 

Try and be patient. Healing takes time and being very VERY strict with the gluten free lifestyle. A physical therapist can be helpful with balance and movement issues so do ask for a referral from the neuro. I hope you heal quickly.

Thank you for your reply, I have had an MRI of my brain and there were no white spots. I was wondering if maybe I caught it early before the white spots showed up. I’m extremely in tune with my body and had the MRI only 3 months after showing symptoms. Thank you for telling your story. It really does help and I am very grateful

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1 hour ago, Solafide3 said:

Thank you for your reply, I have had an MRI of my brain and there were no white spots. I was wondering if maybe I caught it early before the white spots showed up. I’m extremely in tune with my body and had the MRI only 3 months after showing symptoms. Thank you for telling your story. It really does help and I am very grateful

Might be, mine went on for while slowly degrading, to the point of randomly losing motor control and being floored, to my brain just looping on a thought over and over like a broken record. Lost the ability to do computer programing, I lost most of my sensitivity to hot/cold in my hands, same thing with surface feeling (would not notice a cut from a knife with pain, and delayed sense of heat when picking up something really hot). I thought I was dying back then. Later issues showed it was attacking my whole nervous system including my spine, they did ran this odd electrical test on my spine and nerves and how it compounded issues. IE my signals from my spine at the T7 to my pancreas where only 15% which is why I could not eat fatty foods, animal products or sugar without vomiting, or spiking my glucose, along with various other issues.

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12 minutes ago, Ennis_TX said:

Might be, mine went on for while slowly degrading, to the point of randomly losing motor control and being floored, to my brain just looping on a thought over and over like a broken record. Lost the ability to do computer programing, I lost most of my sensitivity to hot/cold in my hands, same thing with surface feeling (would not notice a cut from a knife with pain, and delayed sense of heat when picking up something really hot). I thought I was dying back then. Later issues showed it was attacking my whole nervous system including my spine, they did ran this odd electrical test on my spine and nerves and how it compounded issues. IE my signals from my spine at the T7 to my pancreas where only 15% which is why I could not eat fatty foods, animal products or sugar without vomiting, or spiking my glucose, along with various other issues.

Wow Ennis, that sounds awful. It’s definitely a scary thing when your nervous system goes crazy.

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On 7/16/2019 at 10:25 AM, Solafide3 said:

Became TERRIFIED of ALS. Went to the neurologist. She did a blood test and diagnosed me with Non-Celiac Gluten Sensitivity.

Here is a link:

Quoting from it:

"For myself I've stayed away from all grains except brown rice every few weeks and have stuck with whole foods:  vegetables, meat, some legumes and some fruit.  I really, really wanted to be able to eat other grains and made my own baked products but started reacting to the trace amounts of gluten in them.  The whole food diet minus the grains and processed food is the only one I can thrive on.  It took a whole year for things to slowly resolve and occasionally I mess up and eat something that I thought was okay and then my symptoms of vertigo and falling over happen."

Here is another link that may be helpful:

If you have gluten Ataxia the recovery time may be slow. For some people on this forum with gluten ataxia it can take at least six months. I would post your celiac results on this forum to make sure you got the full tests and that they are interpreted correctly. 

Coq10  deficiency ataxia can be genetic in origin or related to a vitamin deficiency.

https://www.ataxia.org.uk/news/treatable-ataxias

I have not heard of a blood test for non-celiac blood sensitivity, so I am not sure what they are referring to in the webpage above.

It does sound possible to me that restless leg syndrome could be a symptom of gluten withdrawal but I don't know.

"I live in Alabama and unfortunately gluten free is laughed at around here which has led me to believe I have ALS even though I have had 2 clean EMGs."

 Wheat most definitely does cause neurological problems for some people. 

 

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Hi Erica, I don't know what your neurologist did exactly as blood tests but there is no such thing as a blood test for non celiac gluten sensitivity. At least not a blood test that has been medically proven. You need to ask the doc why he/she gave you that diagnosis -- based on what? NCGS can be diagnosed based upon elimination of other things including celiac but that all requires a lot of testing. You might wish to read this:
http://www.cureceliacdisease.org/category/faq-non-celiac-gluten-sensitivity/

And especially this:

http://www.cureceliacdisease.org/faq/what-is-gluten-sensitivity/

Sorry about living in AL, I know what you're up against medically and gluten free wise as my best friend also lives there.

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On 7/17/2019 at 2:25 AM, Solafide3 said:

Hi everyone,

I apologize if this is a long post, but I am in desperate need of help. I started having neurological symptoms in Dec 2018. Muscle twitching, muscle weakness, balance problems, joint and muscle pain. Became TERRIFIED of ALS. Went to the neurologist. She did a blood test and diagnosed me with Non-Celiac Gluten Sensitivity.

1.This is where my first problem starts. Other doctors have told me that NCGS isn’t real. I have also read the blood tests aren’t reliable, but this neurologist is swearing by it?

2.I admit I haven’t managed to stay gluten free for a whole 2 weeks yet. It seems that my muscle twitching (I have no vitamin deficiencies) gets way worse when I stop eating gluten, and gets better when I reintroduce gluten. Is this some sort of weird withdrawal?

3.I have a dull ache that only happens on the right side of my body. On my palm, my butt bone, and bottom of my foot. It also feels like my ankle and wrist are weak when I walk. Does anybody else have this?

I will be so grateful if someone can answer these questions. I live in Alabama and unfortunately gluten free is laughed at around here which has led me to believe I have ALS even though I have had 2 clean EMGs. I don’t mean to be dramatic but I just can’t function with this worry. Thank you

Erica


 

 
  •  

Hello Erica, my name is chris and I’m from Australia. I have nervous system issues as well, mild balance problems, chronic nerve pain in my feet, fatigue. I went gluten free as a desperate attempt to try and help the pain in my feet as I had become addicted to painkillers and struggled through every day at work. Since going gluten free my pain has gone from a 9/10 while standing to a 5/10. It’s been a rocky road though, as I went gluten free over a year ago, and had really awful withdrawals, dizzy, fatigue, sore/weak neck, nauseous, headache, which lasted about 2-3 months. I’m now past the worst of that, but still have some pain in my feet. But have discovered new foods that aggregate my feet, fatty foods like red meat and coconut cream, dairy and corn all aggravate my symptoms. I’m seeing a dietician and working on exactly what is triggering me, as she thinks my stomach is trying to heal and I keep giving it triggers. There are tough days but I can almost see the light. I hope this message helps you to know you’re not on your own, diet is everything. How are you going now? If anyone has any other advice please comment, none of my doctors I’ve been to have been able to diagnose me, I’ve had to do the whole thing from the internet. 

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2 hours ago, Chris H said:

Hello Erica, my name is chris and I’m from Australia. I have nervous system issues as well, mild balance problems, chronic nerve pain in my feet, fatigue. I went gluten free as a desperate attempt to try and help the pain in my feet as I had become addicted to painkillers and struggled through every day at work. Since going gluten free my pain has gone from a 9/10 while standing to a 5/10. It’s been a rocky road though, as I went gluten free over a year ago, and had really awful withdrawals, dizzy, fatigue, sore/weak neck, nauseous, headache, which lasted about 2-3 months. I’m now past the worst of that, but still have some pain in my feet. But have discovered new foods that aggregate my feet, fatty foods like red meat and coconut cream, dairy and corn all aggravate my symptoms. I’m seeing a dietician and working on exactly what is triggering me, as she thinks my stomach is trying to heal and I keep giving it triggers. There are tough days but I can almost see the light. I hope this message helps you to know you’re not on your own, diet is everything. How are you going now? If anyone has any other advice please comment, none of my doctors I’ve been to have been able to diagnose me, I’ve had to do the whole thing from the internet. 

Hi Chris, sorry to hear about your nerve pain, I think it’s great you found a dietitian to work with you on what’s happening. Unfortunately my situation has gotten more complicated. My symptoms have almost completely subsided except for the muscle twitching, and I think that’s only due to the fact that I have become pregnant.I have read that due to changes in immune system when you are pregnant helps some who are sensitive to gluten tolerate it more. But of course I don’t t know if this is really what’s going on, it has just left me more confused. One thing though, I think the fact that you and I have not gotten worse as time has gone on might definitely signify it’s diet related. It’s just hard when doctors can’t give you any answers. Have you had a full food allergy panel done? I’ve read a lot of posts on here of other people who had nerve pain for a very long time and it got better once off gluten, but because they had it for so long, some damage still remains.

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On 7/16/2019 at 11:25 AM, Solafide3 said:

Hi everyone,

I apologize if this is a long post, but I am in desperate need of help. I started having neurological symptoms in Dec 2018. Muscle twitching, muscle weakness, balance problems, joint and muscle pain. Became TERRIFIED of ALS. Went to the neurologist. She did a blood test and diagnosed me with Non-Celiac Gluten Sensitivity.

1.This is where my first problem starts. Other doctors have told me that NCGS isn’t real. I have also read the blood tests aren’t reliable, but this neurologist is swearing by it?

2.I admit I haven’t managed to stay gluten free for a whole 2 weeks yet. It seems that my muscle twitching (I have no vitamin deficiencies) gets way worse when I stop eating gluten, and gets better when I reintroduce gluten. Is this some sort of weird withdrawal?

3.I have a dull ache that only happens on the right side of my body. On my palm, my butt bone, and bottom of my foot. It also feels like my ankle and wrist are weak when I walk. Does anybody else have this?

I will be so grateful if someone can answer these questions. I live in Alabama and unfortunately gluten free is laughed at around here which has led me to believe I have ALS even though I have had 2 clean EMGs. I don’t mean to be dramatic but I just can’t function with this worry. Thank you

Erica


 

 
  •  

Same story... Twitching all over body, pain mainly on left side of body, two clean emgs, freaked out about als, saw tons of doctors, they said I was overreacting. 

Went gluten free month and half ago. joint pain mostly gone, pain in muscles on left side/nerve pain mostly gone. Twitching still going but a little better. 

Any update on you? 

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25 minutes ago, Z4CH said:

Same story... Twitching all over body, pain mainly on left side of body, two clean emgs, freaked out about als, saw tons of doctors, they said I was overreacting. 

Went gluten free month and half ago. joint pain mostly gone, pain in muscles on left side/nerve pain mostly gone. Twitching still going but a little better. 

Any update on you? 

Well, nothing has gotten worse, so I guess that’s a good sign. The only thing that still worries me is my right wrist and right ankle joints kind of hurt. They feel weak but I don’t have any loss of strength. I read things can get worse before getting better after going gluten free, so I’m hoping it’s just that.

I’m sorry you are having to go through the same thing, but it does help knowing someone else has these worries. Thanks for commenting.

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Glad nothing is getting worse for you. 

You still gluten free? 

Yeah, I have subjective weakness in my left hand and foot still. But when it comes to actually using it, I have no problem. Just a little pain. The worst part is trying not to obsess over something not feeling up to par. 

 

Thanks for responding! I’ll probably check back in a month for another update since we have similar symptoms. Hoping this gluten free diet keeps working. 

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yes, you can have gluten withdrawal - I had it and it lasted about 2 weeks then every day was better than the last.  I skipped dairy for about 6 months and at about 6 months (yes, this long) or so, I felt like a fog had lifted off of my brain.  if you are having a gluten reaction, it will cause inflammation anywhere in your body it wants.  nerves are the last to the healing party.  be patient and don't cheat.

welcome to the forum :) 

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I had gluten withdrawal that lasted for 2 months. It can take a long time for the body to heal depending on how damaged you were.

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