Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

What Can You Do To Deal With Neuro, Joint And "other" Issues?

JoshB

Recommended Posts

cyberprof Enthusiast
cyberprof
Posted

That may work for some, but the super sensitive among us, not so much. Even an unwashed hand with a trace of gluten means days of sickness or worse weeks of ataxia.

Kquad, you missed my point. My point is - not everyone can bring food into a restaurant, theatre, event. In some cases, it is illegial. I usually opt to not eat at all in these situations because I am super sensitive and over 3+ years that is sometimes the only solution.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Replies 51
  • Created
  • Last Reply
T.H. Community Regular
T.H.
Posted

It's important to note that bringing in your own food to restaurants is illegal in some states/cities, Washington State as a case in point... It is also impractical for executives and other business people who have 50+ hour a week jobs (like me) and lots of travel to places where they don't know anyone and aren't familiar with the restaurants. We just have more limitations than those who don't travel or who don't have business lunches or conferences one or more times a week.

I was not aware that some states did not allow that. Thanks for mentioning it! CA, NM, and AZ seem to be fine with this, legally speaking.

Very true that it's a much different kettle of fish when traveling and in careers with a lot more business do's that involve food. My husband has a lot of travel and work lunches/conferences, as well, and while we used to accompany him on many trips, we can no longer do that easily. The food issues have been too difficult to accommodate without weeks of planning, and for the upscale places, bringing our own food is problematic. Just 'not done.' ;)

We've had to make sure we find hotels with kitchenettes or microwave/fridges. I always have to bring food with me (a pain in the butt). And we have to keep the trip to a limited time, due to food restrictions. Even with all that, the last trip I went on I was ill pretty much the entire 2 weeks from gluten reactions.

For a celiac who is sensitive enough not to be able to eat at a restaurant without getting ill, I have no idea how they usually cope with numerous business lunches except eating beforehand, and then getting a drink of water and chatting with people during the meals. Travel has got to be a nightmare, based on my limited experience. At least when I was ill, I wasn't also trying to interact with business partners, etc....

I have heard of a few who are extremely sensitive travelers ship food for themselves to the hotel ahead of time, and make sure to get one with at last a microwave and a fridge. They still can't eat at the lunches/dinners involved with the business, but they can at least go on the trip and keep their job.

cougie23 Explorer
cougie23
Posted

I hear you Josh...

It's not so MINOR when you can't use your hands (starts with the tingling ...for those of you who don't have this...turns into severe pain...and if you refuse to stop the activity...your affected extremity goes numb...then dead!!! won't work at alll!!!)not to mention...not being to remember who to spell things you've never had problems with before! OR forgetting in the middle on a conversation...what exactly what it is your talking about(and having poeple look at you like your crazy..or worse, STUPID!!! I really hate that!!! :angry: )stuttering out of nowhere when you've never stuttered before! Not to mention the migraines and severe neck aches...leg cramps like your muscles are tearing so bad you wake up in the middle of the night screaming!! Oh yeah...DUDE...I hear you!!!Just so you know I'm an Artist/ illistrator...I can totaly relate! :D

cougie23 Explorer
cougie23
Posted

I hear you Josh...

It's not so MINOR when you can't use your hands (starts with the tingling ...for those of you who don't have this...turns into severe pain...and if you refuse to stop the activity...your affected extremity goes numb...then dead!!! won't work at alll!!!)not to mention...not being to remember who to spell things you've never had problems with before! OR forgetting in the middle on a conversation...what exactly what it is your talking about(and having poeple look at you like your crazy..or worse, STUPID!!! I really hate that!!! :angry: )stuttering out of nowhere when you've never stuttered before! Not to mention the migraines and severe neck aches...leg cramps like your muscles are tearing so bad you wake up in the middle of the night screaming!! Oh yeah...DUDE...I hear you!!!Just so you know I'm an Artist/ illistrator...I can totaly relate! :D

Thats "HOW" how to spell things...dam dyslexia!!! :rolleyes:

cougie23 Explorer
cougie23
Posted

A Rheumy is your best bet I reckon...because you are celiac it means that you have a high chance of other autoimmune diseases. (I have two including celiac and about to be diagnosed with another) Your symptoms sound similar to mine ( I am 33 and mine started showing up at 28) If it is some kind of connective tissue disease - the sooner you get onto the better. Not saying thats what it is - but you've been gluten-free for awhile and there is no improvement. Are you in the US? Or somewhere else? Just in terms of expense I mean....

Yeah thats what I thought...but then when I read up on it, I foud that one of the main symptoms was swelling and a distinct reddness in the afending joint! I know with myself...(and it sounds like Josh is having the same problem....its more than juat the joints...AND I don't have any of the swelling...just all the other crazy symptoms!!! ;)

Thats why I thought I had MS for so long...my nurological tests came back borderline...(Maybe /maybe not!!) and I had 95 out of the 100 symptoms...even the far fetched ones I didn't think were related to any thing! untill I met my wonderful doctor who "thinks outside the box"!!! :D

cougie23 Explorer
cougie23
Posted

Yeah thats what I thought...but then when I read up on it, I foud that one of the main symptoms was swelling and a distinct reddness in the afending joint! I know with myself...(and it sounds like Josh is having the same problem....its more than juat the joints...AND I don't have any of the swelling...just all the other crazy symptoms!!! ;)

Thats why I thought I had MS for so long...my nurological tests came back borderline...(Maybe /maybe not!!) and I had 95 out of the 100 symptoms...even the far fetched ones I didn't think were related to any thing! untill I met my wonderful doctor who "thinks outside the box"!!! :D

Dam typo's!!

Kquad Apprentice
Kquad
Posted

Kquad, you missed my point. My point is - not everyone can bring food into a restaurant, theatre, event. In some cases, it is illegial. I usually opt to not eat at all in these situations because I am super sensitive and over 3+ years that is sometimes the only solution.

Sorry, In a warped way, it is funny having people with neurological symptoms trying to make coherent posts or ( as now for me ) read them coherently. :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cougie23 Explorer
cougie23
Posted

Sorry, In a warped way, it is funny having people with neurological symptoms trying to make coherent posts or ( as now for me ) read them coherently. :)

Yeah ..I know...

I used to think...what is wrong with these people!!!Untill about 2 years ago my own spelling just started getting worse!! I mean...I allready had difficulty...but now ..it's just rediculous...I can't spell anything right...even when I'm careful..and correct myself...I still mess up...or worse...have to use other words because I simply can't reember how to spell something simple..or it just comes out jumbled...repetitively!!! :blink:

cougie23 Explorer
cougie23
Posted

;) The worsed thing though..is trying to correct a misspelling..and make the same mistake...some times three times!! it's like..man I'm stupid ..WTF!!! :angry: ..very fustrating! or like I said before...you go to write how..and it comes out who..or worse..owh! :blink: It's not funny!!. not if it's happening to you! :huh:

It is getting better now that I'm watching my food. But Ihave quite a ways to go. :D

JoshB Apprentice
JoshB
Posted
  • Author

;) The worsed thing though..is trying to correct a misspelling..and make the same mistake...some times three times!! it's like..man I'm stupid ..WTF!!! :angry: ..very fustrating! or like I said before...you go to write how..and it comes out who..or worse..owh! :blink: It's not funny!!. not if it's happening to you! :huh:

It is getting better now that I'm watching my food. But Ihave quite a ways to go. :D

The worst thing is making a small spelling mistake and believing auto-correct when it suggests an entirely different word.

cougie23 Explorer
cougie23
Posted

The worst thing is making a small spelling mistake and believing auto-correct when it suggests an entirely different word.

Yeah but at least its the stupid computers fault and not yours! :rolleyes:

beleive me..theres been days I've felt like putting a gun to my head ..rather than having to see"THAT LOOK!!!" in someones eyes of what a compleate moron they think I am...especialy when a boss or someone important tells you in detail how to do something and 2 minutes later you can't remember what they said! the humiliation is unbearable!!! :( on top of all the other debilitating crap...this really IS a disease!!!

(apearently im supersensitive!....aaaaaaarrrrrgggggh!!!!!!!!!!!!!! <_<

cougie23 Explorer
cougie23
Posted

On a lighter note...I read that "CHIPOLTE"resterant is compleatly gluten free(except for flour torrtillas-optional)...and will even change the gloves thier wearing if you ask!!! :D

JoshB Apprentice
JoshB
Posted
  • Author

On a lighter note...I read that "CHIPOLTE"resterant is compleatly gluten free(except for flour torrtillas-optional)...and will even change the gloves thier wearing if you ask!!! :D

I go there all the time. Never had a problem that I've noticed.

ravenwoodglass Mentor
ravenwoodglass
Posted

;) The worsed thing though..is trying to correct a misspelling..and make the same mistake...some times three times!! it's like..man I'm stupid ..WTF!!! :angry: ..very fustrating! or like I said before...you go to write how..and it comes out who..or worse..owh! :blink: It's not funny!!. not if it's happening to you! :huh:

It is getting better now that I'm watching my food. But Ihave quite a ways to go. :D

Yea I am so thankful for that little edit button, well that and backspace. I usually have to edit any post at least 3 times before I get it right. :blink:

beebs Enthusiast
beebs
Posted

Yeah thats what I thought...but then when I read up on it, I foud that one of the main symptoms was swelling and a distinct reddness in the afending joint! I know with myself...(and it sounds like Josh is having the same problem....its more than juat the joints...AND I don't have any of the swelling...just all the other crazy symptoms!!! ;)

Thats why I thought I had MS for so long...my nurological tests came back borderline...(Maybe /maybe not!!) and I had 95 out of the 100 symptoms...even the far fetched ones I didn't think were related to any thing! untill I met my wonderful doctor who "thinks outside the box"!!! :D

Mine don't swell and aren't red either....but I still haven't gone into remission after 9 months.....arrggghhh

JoshB Apprentice
JoshB
Posted
  • Author

My knuckles are red sometimes but not always, and it doesn't seem to correlate with pain. They are enlarged, but it's hard to tell if maybe they just look big because I'm so skinny.

Some of the joints don't straighten all the way, and some twist to the side a bit, so I'm relatively sure there is something going on beyond nerves. The doc took x-rays though, and just says "Looks good! No problems on the film." How you can have those sorts of physical changes and not see something on an x-ray is beyond me, but unfortunately I know jack about x-rays. He did some sort of blood test for arthritic inflammation, but that was negative too.

shezatrip Apprentice
shezatrip
Posted

Here is what you do=

You buy kefir grains online. I ordered mine from etsy...you put the grains in a jar and two days later you will have

kefir. It will start adding flora back in instantly. You will feel so much better!!

many get raw milk and add it to their grains. The raw milk is also loaded with enzymes and nutrients/that paturized milk

does not have.

Next, you start eating a T. of raw unpasturized sauerkraut with each meal......you will again start feeling huge

differences.

only eat grassfed/organic meat...fruits, veggies, etc...

This will help you so much

pricklypear1971 Community Regular
pricklypear1971
Posted

Here is what you do=

You buy kefir grains online. I ordered mine from etsy...you put the grains in a jar and two days later you will have

kefir. It will start adding flora back in instantly. You will feel so much better!!

many get raw milk and add it to their grains. The raw milk is also loaded with enzymes and nutrients/that paturized

milk

does not have.

Next, you start eating a T. of raw unpasturized sauerkraut with each meal......you will again start feeling huge

differences.

only eat grassfed/organic meat...fruits, veggies, etc...

This will help you so much

Do you drink kombucha tea?

beebs Enthusiast
beebs
Posted

My knuckles are red sometimes but not always, and it doesn't seem to correlate with pain. They are enlarged, but it's hard to tell if maybe they just look big because I'm so skinny.

Some of the joints don't straighten all the way, and some twist to the side a bit, so I'm relatively sure there is something going on beyond nerves. The doc took x-rays though, and just says "Looks good! No problems on the film." How you can have those sorts of physical changes and not see something on an x-ray is beyond me, but unfortunately I know jack about x-rays. He did some sort of blood test for arthritic inflammation, but that was negative too.

oh the joys of autoimmine disease! Negative isn't always negative if you know what I mean. For example the blood tests for SJogrens -only about 60% of patients show up in those...whereas its about 98% for lupus!

cougie23 Explorer
cougie23
Posted

My knuckles are red sometimes but not always, and it doesn't seem to correlate with pain. They are enlarged, but it's hard to tell if maybe they just look big because I'm so skinny.

Some of the joints don't straighten all the way, and some twist to the side a bit, so I'm relatively sure there is something going on beyond nerves. The doc took x-rays though, and just says "Looks good! No problems on the film." How you can have those sorts of physical changes and not see something on an x-ray is beyond me, but unfortunately I know jack about x-rays. He did some sort of blood test for arthritic inflammation, but that was negative too.

I agree with BEEBSs...negitive isn't allways negitive...especialy with us!!

The twisted joints sound kinda suspicous...you might whant a second opinon on that one!!! :(;) ....at least do some more research! :huh:

JoshB Apprentice
JoshB
Posted
  • Author

[Edit] This post is getting off topic; breaking this off into another thread.

Kim69 Apprentice
Kim69
Posted

This is all very interesting. I have been gluten-free for 20 months and recently had a gastroscopy that showed full villi recovery and an excellent response to a gluten-free diet.

Hmm that's all well and good but I still have such horrible fatigue. I havent been able to work a full days work since becoming sick 2 yrs ago (fatigue was worst symptom). Brain fog has been bad. I am an engineer so I need my brain working!

Recently my symptoms have changed to more neurological. For past 2 months I have had spasms and twitches, weakness and aches in legs and arms and hands. I was dx with fibromyalgia but I am not convinced. I have double vision and light sensitive eyes that ache after looking at a computer screen. I do have a sinus infection that I am having surgery for in 2 weeks so I am hoping my eyes will be fixed but the surgeon isn't hopeful :(

I take the following supps - co enzyme q 10, Serracel, Glucosamine, magnesium, zinc, calcium, multi b, vit d.

I had an MRI and have ruled out ms. All other usual suspects such as hashimotos and hormones have been ruled out.

My household (husband and two teenagers) refuses to become gluten-free. I must admit I have considered moving out!

cougie23 Explorer
cougie23
Posted

Yeah I am so thankful for that little edit button, well that and backspace. I usually have to edit any post at least 3 times before I get it right. :blink:

I see...your right, you can totally go back (after posting) and clean up any thing you miss...Thankyou! :D

GFinDC Veteran
GFinDC
Posted

... Has anyone had success handling nerve and joint problems? IE you had tingling/static shock feelings/hot point pain/etc and you found some way to deal with it beyond "wait and see". Similarly if you had joint pain and/or eye pain was there anything that helped?

Probably the number one concern for me now is memory and concentration, and I don't even know where to start there. My vitamin levels seem to be back in reasonable ranges, and that's really all I know to do.

I used to have joint pain, muscle twitches, and brain fog. I can't say I am completely free of those now, but they are much reduced. For me the joint pain was more a soy issue and nightshades than gluten.

cougie23 Explorer
cougie23
Posted

[Edit] This post is getting off topic; breaking this off into another thread.

Josh why so moody? are you angry :( ???

I guess theres not alot you can do but learn as much about this and your own symptoms...take whatever supliments and nutrision you can and wait to HEAL!!! Sometimes thats all you can do...It all depends on your own body..and what it's capable of!Only time will tell...Sorry :( .We tried to HELP...But we SHARED too...sort of a US TOO sorta thing...(you get alot of that here)! :rolleyes:

I agree about the Doctors though...they can be some real insensitive jerks!!!

Don't be sad!!! (or angry...) Just take care of yourself!!!!

We'll be there if you want to talk!!...And please forgive us if we get disctracted easily...alot of us have FOCUS ISSUES!!! LOL :blink::D

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of...
    3. Ginger38
      - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this. He couldn’t guarantee me a negative biopsy meant ...
    4. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    5. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,471
    • Most Online (within 30 mins)
      7,748
    Lynda Gibbons
    Newest Member
    Lynda Gibbons
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      My only proof

      By Mari · Posted

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      Challenges eating gluten before biopsy

      By Ginger38 · Posted

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.