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

Ataxia Or Als?


curiousgirl

Recommended Posts

curiousgirl Contributor

my neurological symptoms are now so severe, after many doctors and many tests, i was finally diagnosed with ALS.

 

but, the diagnosis was rescinded for several reasons…my tongue muscle is good; my breathing is good; and, after 6 years, i'm still here...

 

so, i'm back to being undiagnosed.

 

someone mentioned ataxia to me; if it is gluten ataxia, have i not been strict enough??

 

i'm afraid to get my hopes up again...


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



Celiac.com Sponsor (A8-M):



mamaw Community Regular

eleven years  ago  I to was  given  a death sentence  of ALS... Got my medical disability quickly  ....after  three  months  I was  able to  walk  &  talk  again & the  choking  became  less & less...I  was  brought  to  celiac  by  divine  intervention  &  never  heard  of  it  before that..., I  have  ups & downs   but  I'm alive.......In eleven years  I  have only  been glutened   once. I'm VERY strict  &  have loads of  other  problems( health issues)  & allergies.   again  it's   still all good  I'm alive!!!!!

 

I've  had  two friends  a male  & a  female  who both  got  a  ALS death  sentence  as well... one  lived  for  seven years  with a gluten-free  lifestyle,    a  good  life... the other  died  within  months &  would not  consider  a gluten-free  lifestyle...  only they  would  consider if a  medical  doc  suggested   it....when  the  end  was  near  they  said  I should have  followed  a gluten-free  diet  you both  are still going strong....

Honestly  I  don't  know  if  I  have ALS  or not  &  don't  fret  about it  because  I  got  eleven years to date  that we  thought  I would never see....for me  every day is a gift...... I take  nothing  for granted...

blessings

curiousgirl Contributor

eleven years  ago  I to was  given  a death sentence  of ALS... Got my medical disability quickly  ....after  three  months  I was  able to  walk  &  talk  again & the  choking  became  less & less...I  was  brought  to  celiac  by  divine  intervention  &  never  heard  of  it  before that..., I  have  ups & downs   but  I'm alive.......In eleven years  I  have only  been glutened   once. I'm VERY strict  &  have loads of  other  problems( health issues)  & allergies.   again  it's   still all good  I'm alive!!!!!

 

I've  had  two friends  a male  & a  female  who both  got  a  ALS death  sentence  as well... one  lived  for  seven years  with a gluten-free  lifestyle,    a  good  life... the other  died  within  months &  would not  consider  a gluten-free  lifestyle...  only they  would  consider if a  medical  doc  suggested   it....when  the  end  was  near  they  said  I should have  followed  a gluten-free  diet  you both  are still going strong....

Honestly  I  don't  know  if  I  have ALS  or not  &  don't  fret  about it  because  I  got  eleven years to date  that we  thought  I would never see....for me  every day is a gift...... I take  nothing  for granted...

blessings

 

may i contact you in your mailbox?

Archived

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

  • 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. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

    2. - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

    3. - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

    4. - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

    5. - sha1091a posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,689
    • Most Online (within 30 mins)
      7,748

    EndlessSummer
    Newest Member
    EndlessSummer
    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

    • knitty kitty
      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • 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.