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Allisonrc

Nerves

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Hi,

I was diagnosed with celiac disease about 4 months ago 

At first I didn't know I had it, I've had issues with nerves in my hands for a long time and I never wanted to bring it up because I always thought I was overreacting,

Until it got to the point where I couldn't do simple things like holding a dinner fork,and I couldn't feel my hands

Then i went to the doctor and got diagnosed and I've been gluten free ever since.

At first I noticed a difference and it seemed like everything was getting better

Until a couple weeks ago they started hurting again.

I have checked everything I have eaten or come in contact with and everything is gluten free I even cut dairy and sugar out but nothing is working!

Can anyone help??

Thank you

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Celiac.com Sponsor (A8):

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Hi Allison,

Did the doctor check your vitamin/mineral levels?  They should do that if they haven't already.  Nerves are affected by some of the B vitamins.  So you may be low on some of those.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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32 minutes ago, GFinDC said:

Hi Allison,

Did the doctor check your vitamin/mineral levels?  They should do that if they haven't already.  Nerves are affected by some of the B vitamins.  So you may be low on some of those.

Yes he did I have been on vitamins D & B

 

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1 hour ago, Scott Adams said:

I think you should re-check your diet to make sure it's 100% gluten-free, as it sounds like you may have been getting some contamination.

Ok I will try that

Thank you

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Hi Allisonrc.  Ask your doc to run another TTG gluten antibody test.  The numbers will definitively show whether you STILL have gluten in your food.  In my case, it took about 6 months on a STRICT, 100% fresh food gluten-free diet (absolutely no processed, packaged food--not even those labeled gluten-free--and no sharing food or eating out--even carryout) before my TTG level returned to normal.   If your updated TTG is normal, it's probably stress (understandable during this awful pandemic), vitamin deficiency, or something else.

I've been gluten-free for 8 months now and, thankfully, my TTG & vitamin panels are all normal.  I can say from personal experience that my increased, constant worrying, insomnia during this pandemic has really done a huge number on my immune system, my mental and physical health.  

Whichever the case, I wish you rapid recovery.

 

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20 hours ago, Kate333 said:

Hi Allisonrc.  Ask your doc to run another TTG gluten antibody test.  The numbers will definitively show whether you STILL have gluten in your food.  In my case, it took about 6 months on a STRICT, 100% fresh food gluten-free diet (absolutely no processed, packaged food--not even those labeled gluten-free--and no sharing food or eating out--even carryout) before my TTG level returned to normal.   If your updated TTG is normal, it's probably stress (understandable during this awful pandemic), vitamin deficiency, or something else.

I've been gluten-free for 8 months now and, thankfully, my TTG & vitamin panels are all normal.  I can say from personal experience that my increased, constant worrying, insomnia during this pandemic has really done a huge number on my immune system, my mental and physical health.  

Whichever the case, I wish you rapid recovery.

 

Thank you so much, I wish the same to you!

Yes I am stressed a lot lately i just didn't realize it could effect me like that.

I usually have headaches due to stress and worrying.

I just hope things will go back to normal soon!

Thanks again I will try what you've suggested.

Merry Christmas

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2 hours ago, Allisonrc said:

Thank you so much, I wish the same to you!

Yes I am stressed a lot lately i just didn't realize it could effect me like that.

I usually have headaches due to stress and worrying.

I just hope things will go back to normal soon!

Thanks again I will try what you've suggested.

Merry Christmas

Hi again, Allisonrc:

Yes...you'd be surprised how much chronic, severe stress, anxiety, depression, insomnia can manifest in a big number of physical symptoms.  I know I certainly was at first until I educated myself a bit by listening to neuro doctors, MH providers.   There are also many articles online about the link between physical symptoms and chronic, severe stress/anxiety.

I've also had some of the symptoms you mention. I've only recently begun to keep closer track of the days and after doing so, I noticed a big link: on "bad days" full of stress, worry those symptoms seemed to appear or intensify.   

Your body should heal on the gluten-free diet but it usually happens gradually, so be patient with yourself.  It's also a good idea to focus on helping your mindset heal by doing everything you can to relax more.  As a fellow celiac disease/gluten-free "newbie" I know that can be a big challenge, esp. while adjusting to this new diagnosis, big change in diet habits, and also living in a world challenged by a pandemic.

I have found soft music, meditation videos on YouTube, reading and exercise helpful.  Also, I used to be a big news addict and read my Iphone in bed before sleep.  And as a lifelong medical anxiety worrier, I used to spend countless hours online surfing symptoms and worrying about the worst case scenario, even when my doctors and tests repeatedly contradicted them.  LOL But after tuning out the news, breaking up with Dr. Google, and putting the phone away before going to bed, I came to realize how much those bad habits were actually harming my health by feeding and boosting my stress levels and physical symptoms.  

Hang in there.  We WILL get through this!!

I also wish you/your family a Happy Christmas and better New Year!

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45 minutes ago, Allisonrc said:

Kate,

OMG that is exactly what I do!!!!

I'm trying to stop it but everything just seems so overwhelming.

I'm going to try music and reading from now on Thank you😌

Totally understood!  As a fellow celiac disease "newbie" I find it very easy to relate to your fears, anxiety.  We have all been there.  Hopefully, we will both soon look back on 2020 as just a "bad patch" which we have overcome and healed from. 

In the meantime, the most important things you can do for yourself every day to facilitate healing of your gut, mind, and rest of your body are: pamper yourself/rest and stick to that 100% gluten-free diet "religiously".  Meaning no "occasional" cheating and no taking undue risks (like trying packaged foods that may or may not really be gluten-free). 

In my case, I ditched ALL packaged, processed foods because reading labels is just too confusing, stressful, and because some labels claiming gluten-free are just not honest or verified.  Much easier to skip that hassle altogether.  Also, gluten-free packaged food is very expensive, IMO not very tasty, and full of junk additives (sugar, artificial flavors, colors).  I vowed to buy, prepare, and eat only 100% fresh foods for at least the first year after diagnosis to jump start my body healing.   Congrats for ditching sugar and dairy, which are also well-known contributors to inflammation.  I recently gave up ice cream--not the easiest thing to do as it was my main pandemic "comfort food" but I could tell dairy and sweets really did a number on my digestion, mood so I had no choice.  😰

If you have any other Qs don't hesitate to ask...

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57 minutes ago, Kate333 said:

Totally understood!  As a fellow celiac disease "newbie" I find it very easy to relate to your fears, anxiety.  We have all been there.  Hopefully, we will both soon look back on 2020 as just a "bad patch" which we have overcome and healed from. 

In the meantime, the most important things you can do for yourself every day to facilitate healing of your gut, mind, and rest of your body are: pamper yourself/rest and stick to that 100% gluten-free diet "religiously".  Meaning no "occasional" cheating and no taking undue risks (like trying packaged foods that may or may not really be gluten-free). 

In my case, I ditched ALL packaged, processed foods because reading labels is just too confusing, stressful, and because some labels claiming gluten-free are just not honest or verified.  Much easier to skip that hassle altogether.  Also, gluten-free packaged food is very expensive, IMO not very tasty, and full of junk additives (sugar, artificial flavors, colors).  I vowed to buy, prepare, and eat only 100% fresh foods for at least the first year after diagnosis to jump start my body healing.   Congrats for ditching sugar and dairy, which are also well-known contributors to inflammation.  I recently gave up ice cream--not the easiest thing to do as it was my main pandemic "comfort food" but I could tell dairy and sweets really did a number on my digestion, mood so I had no choice.  😰

If you have any other Qs don't hesitate to ask...

Kate333

Thank you so so much you've helped me so much 

You've been so kind!

I wish you the best😊

 

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Yes, I think you are right, the more processed foods you eat, which include lots of milled alternative flours that could get cross-contaminated, the higher your risk. The same with eating out...even at restaurants that have GF menus you're still likely to get some contamination, especially if you do it regularly. 


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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5 hours ago, Scott Adams said:

Yes, I think you are right, the more processed foods you eat, which include lots of milled alternative flours that could get cross-contaminated, the higher your risk. The same with eating out...even at restaurants that have gluten-free menus you're still likely to get some contamination, especially if you do it regularly. 

Ok what about special occasions?

Especially with Christmas coming up!

Would it hurt me more to eat homemade gluten free baked goods?

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If you do I would go with certified gluten-free flours if possible. My main point is that consuming processed foods, especially milled flours, may increase the risk of getting small amounts of cross contamination. Since you started having symptoms again after going gluten-free, I just wanted to point out that shifting your diet to whole foods and cutting out possible areas of contamination might be a good idea. It is possible to get 100% gluten-free flours.


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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18 hours ago, Scott Adams said:

If you do I would go with certified gluten-free flours if possible. My main point is that consuming processed foods, especially milled flours, may increase the risk of getting small amounts of cross contamination. Since you started having symptoms again after going gluten-free, I just wanted to point out that shifting your diet to whole foods and cutting out possible areas of contamination might be a good idea. It is possible to get 100% gluten-free flours.

Thank you I will try that

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On 12/9/2020 at 12:23 AM, Allisonrc said:

Hi,

I was diagnosed with celiac disease about 4 months ago 

At first I didn't know I had it, I've had issues with nerves in my hands for a long time and I never wanted to bring it up because I always thought I was overreacting,

Until it got to the point where I couldn't do simple things like holding a dinner fork,and I couldn't feel my hands

Then i went to the doctor and got diagnosed and I've been gluten free ever since.

At first I noticed a difference and it seemed like everything was getting better

Until a couple weeks ago they started hurting again.

I have checked everything I have eaten or come in contact with and everything is gluten free I even cut dairy and sugar out but nothing is working!

Can anyone help??

Thank you

Allison,

Try taking some Benfotiamine. It is the Fat Soluble (with Meals) form of B-1 found in the Diabetic section.

It has been tied to both MS and Fibromyaglia.

Here is some research about it. I think it will help your nerve problems.

First link entitled "High-dose thiamine improves the symptoms of fibromyalgia"

https://pubmed.ncbi.nlm.nih.gov/23696141/

And this one entitled "High dose thiamine improves fatigue in multiple sclerosis"

https://pubmed.ncbi.nlm.nih.gov/23861280/

I know you mentioned your hands....but Thiamine deficiency commonly shows up in our Extremities....

I used to have "Pins and Needles" thought to be Pernicious Anemia that turned out to be an undiagnosed Thiamine deficiency.

Taking Befotiamine helped my burning pains in my hands and feet (especially bad at night)...so much so 1/2 of my body would fall asleep at night while sleeping!

See this recent article article in the NYT Magazine...

She had trouble getting a diagnosis too!

https://www.nytimes.com/2020/12/03/magazine/wernickes-encephalitis.html

This Posterboy blog post I wrote might also help you explaining my journey.

You might also search for Knitty Kitty or Thiamine on Celiac.com.

She is a big advocate of Thiamine as well.

Here is a thread she started that is worth your time to scan all the links of different conditions a Thiamine deficiency shows up in....

I hope this is helpful but it is not medical advise!

Posterboy,

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On 12/14/2020 at 6:13 PM, Posterboy said:

Allison,

Try taking some Benfotiamine. It is the Fat Soluble (with Meals) form of B-1 found in the Diabetic section.

It has been tied to both MS and Fibromyaglia.

Here is some research about it. I think it will help your nerve problems.

First link entitled "High-dose thiamine improves the symptoms of fibromyalgia"

https://pubmed.ncbi.nlm.nih.gov/23696141/

And this one entitled "High dose thiamine improves fatigue in multiple sclerosis"

https://pubmed.ncbi.nlm.nih.gov/23861280/

I know you mentioned your hands....but Thiamine deficiency commonly shows up in our Extremities....

I used to have "Pins and Needles" thought to be Pernicious Anemia that turned out to be an undiagnosed Thiamine deficiency.

Taking Befotiamine helped my burning pains in my hands and feet (especially bad at night)...so much so 1/2 of my body would fall asleep at night while sleeping!

See this recent article article in the NYT Magazine...

She had trouble getting a diagnosis too!

https://www.nytimes.com/2020/12/03/magazine/wernickes-encephalitis.html

This Posterboy blog post I wrote might also help you explaining my journey.

You might also search for Knitty Kitty or Thiamine on Celiac.com.

She is a big advocate of Thiamine as well.

Here is a thread she started that is worth your time to scan all the links of different conditions a Thiamine deficiency shows up in....

I hope this is helpful but it is not medical advise!

Posterboy,

Posterboy,

Thank you so much!

I am brand new to all of this and it's kind of overwhelming at times.

All of the people on this site have helped me research different things and i appreciate it so much!

I will look through everything you have mentioned and added above!

Thank you again. Merry Christmas! 

-Allison

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