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

Longer Term Recovery - Neuro Setbacks

cristiana

Recommended Posts

cristiana Veteran
cristiana
Posted

This quesiton is for anyone who has recovered from neurological symptoms.

 

I often read on celiac posts online that neuro symptoms are often the last to clear up.  I am trying my hardest to stay clear of gluten but the neuro problems persist, two years gluten-free.   They almost seem to disappear, then start off again.   Same things - buzzy ankle, tingling fingers due to ulnar compression/carpal tunnel, which has been properly DXd, and facial buzzing and tingles.  

 

Are there any celiac veterans out there who experienced these setbacks?  Was it always gluten that brought these things back or did you have a hunch that other factors were at play?

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

Celiac.com Sponsor (A8-M):


icelandgirl Proficient
icelandgirl
Posted

I'd love to know the answer as well. I am 100% gluten free. I haven't been glutened since March of last year, but I will have symptoms come up that are similar to before I went gluten free. It makes me wonder if we can have a flare up without consuming gluten.

GF Lover Rising Star
GF Lover
Posted

One thing to understand is that other things can activate the Auto Immune system.  Stress, sickness, other AI issues can all activate it.  This in turn can cause some, all or different symptoms to pop up while the AI system is cranked.  Also, remember that perfectly healthy people have aches, pains, tingles, head aches, all kinds of things that just happen and cannot be attributed to any disease or sickness.  

 

I'm not trying to belittle anything any one person is experiencing, but, keep things in perspective.  Also, consider the fact that some damage from Celiac or any AI Disease may be permanent.  Don't think of this stuff as a set-back,  Sometimes the smaller things can be dealt with easier when thinking about your health overall.

 

Colleen

cristiana Veteran
cristiana
Posted
  • Author

Colleen - thank you so much for that reply, I find it v. reassuring.   Looking back the latest stuff came along with some stressful hospital tests, a new job and a nasty virus.   You have really helped me. 

 

xx

GF Lover Rising Star
GF Lover
Posted

So glad I could help  :)

icelandgirl Proficient
icelandgirl
Posted

I agree...very helpful and comforting reminder Colleen.

GF Lover Rising Star
GF Lover
Posted

Here is an easy to read article that explains things better than I.  It's good for all of us to keep in mind.  New (a year or so) Celiacs can obsess about all kinds of things that really mean nothing due to Celiac.  Some people start cutting back foods they eat drastically thinking it is Celiac related when it's not.  

 

The best advice I can give any Celiac is to look at improvements as a whole and realize some things need a lot of time to improve and other things may never improve, but you will eventually find your new normal and work with it.

 

Stay positive girls  :D

 

Colleen

 

Open Original Shared Link

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

Celiac.com Sponsor (A8-M):


cristiana Veteran
cristiana
Posted
  • Author

Colleen - thanks so much for thinking to post this here.  It is very helpful.   :)

GF Lover Rising Star
GF Lover
Posted

I knew you would see it here.  Hopefully, Iceland Girl sees it too.  :)

icelandgirl Proficient
icelandgirl
Posted

Fantastic! Cristiana, you and I have discussed this cycle of stress before...good reminder.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,798
    • Most Online (within 30 mins)
      7,748
    Gracie B
    Newest Member
    Gracie B
    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

    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      Hello there! New to celiac community, although I have lots of family in it.  My two year old was just diagnosed with celiac disease based on symptoms and bloodwork.  symptoms (swollen belly, stomach hurting, gagging all the time, regular small vomit, fatigue, irritability, bum hurting, etc) she got tests at 18 months and her bloodwork was normal. She just got tested again at 2 1/2  because her symptoms were getting worse and these were her results :   Tissue Transglutaminase Ab, IgA 58.8 Unit/mL (High) Endomysial Antibody IgA Titer 1:5 titer (Abnormal)   Gliadin Antibody IgA < 1.0 Unit/mL Gliadin Antibody IgG 8.5 Unit/mL Immunoglobulin A 66 mg/dL Her regular pediatrician diagnosed her with celiac and told us to put her on the strict gluten free diet and that we wouldn’t do an endoscopy since it was so positive and she is so little (26lbs and two years old). I’m honestly happy with this decision, but my family is saying I should push and get an endoscopy for her. It just seems unnecessary and an endoscopy has its own risks that make me nervous. I’m certain she has celiac especially with it running in mine and my husbands family. We are now thinking of testing ourselves and our 5 year old as well.  anyways what would y’all recommend though? Should we ask for an endoscopy and a GI referral? (We are moving soon in 5 months so I think that’s part of why she didn’t refer us to GI)    
    • olivia11
      My journey is it gluten or fiber?

      By olivia11 · Posted

      This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense.   You are not confusing yourself  you have got it right. Thiamax (TTFD) plus a B-complex, and if you want benfotiamine, the Life Extension formula covers that at ~100 mg.
    • olivia11
      My journey is it gluten or fiber?

      By olivia11 · Posted

      High fiber can definitely cause sudden GI distress especially if it’s a new addition but accidental gluten exposure can feel similar. Keeping a simple food/symptom log and introducing new gluten-free foods one at a time can really help you spot the pattern. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense.
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      sorry a bit confused so I should take my B complex along with Objective Nutrients Thiamax for TTFD but what about a Benfotiamine to take. The Life extensions contains Benfotiamine and Thiamine together or im confusing myself. I am trying to see if I take Thiamax what should I take for Benfotiamine. Thanks EDITING after further research I see ones water soluble ones fat soluble. So I guess 100MG as you suggested of Life Extension contains Benfotiamine and Thiamine Hydrochloride. and the Objective Nutrients Thiamax contains TTFD.     would work for me.
    • Rogol72
      Build muscle back feeling weak?

      By Rogol72 · Posted

      I put on over 12kg by eating protein with every meal, 3 to 5 times a day. Eggs, Chicken, Tuna, Turkey etc. I stay away from too much red meat as it can be inflammatory. Scott is correct. I've come across a bunch of Coeliac PT's on Tiktok and Instagram. They all say the same thing, the key is getting enough protein and consistency.
×
×
  • 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.