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

Still Learning

SarahJimMarcy

Recommended Posts

SarahJimMarcy Apprentice
SarahJimMarcy
Posted

We are coming up on one year gluten free. Yay us!

My daughter (14) has had a few strange things happen, and from reading what others have posted, it sounds like ataxia.

In one episode, she couldn't move her legs.

Last night, she couldn't move her arms or speak very easily.

Scary for her, and my husband was ready to carry her into the ER.

Having been through the legs episode with her, I wanted to wait 10 minutes, and sure enough, it resolved itself. She described it as her muscles felt like they had been overworked, like a marathon, and she just couldn't get them to move.

In each of these cases, we can track it back to unintentional gluten exposure. If this is ataxia, do we do anything more than what we're doing? Is there any permanent damage or could this escalate to a real dangerous level? Does ataxia happen to different parts of the body? Anything we can do to help her get through it?

Any help and advice would be greatly appreciated.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Ataxia is a loss of balance. What you are describing does not sound like ataxia, IMHO. It would be a good idea to get her to the doctor very soon to be checked out. If it happens again before you can get her into the doctor call an ambulance. Better to be safe than sorry.

rosetapper23 Explorer
rosetapper23
Posted

I agree with ravenwoodglass--this doesn't sound like a gluten-exposure problem (and it doesn't sound like ataxia); however, gluten has been known to cause neurological and muscle problems. This could be something else, though (and I can think of two possibilities), and I agree that your daughter needs to be evaluated very soon by a doctor. Please let us know what happens....

SarahJimMarcy Apprentice
SarahJimMarcy
Posted
  • Author

We are only about an hour from the Mayo. Do you think I should try to get her in there?

ravenwoodglass Mentor
ravenwoodglass
Posted

We are only about an hour from the Mayo. Do you think I should try to get her in there?

I would get her in wherever she can be seen soonest. She might get to Mayo quickest with a referral from her ped if they feel she needs a specialist not available in your city.

UKGail Rookie
UKGail
Posted

There is a woman in our local support group who arrives in a wheelchair. As newbie to the group the only thing I know is that she is under the care of a respected neurologist, who thinks her problems are probably linked to celiac. He is apparently trying to get her walking again, and is not neccessarily anticipating a successful outcome. I'm afraid I don't know if she is newly diagnosed or a celiac with a well-established gluten free diet. I suspect the former though, as the meeting was specifically for old hands to give support to the newbies.

I would definitely take your daughter to see a good neurologist as soon as possible. If you can find one with an interest in celiac disease, then so much the better.

I think I understand what your daughter is saying about her muscles feeling "overworked". I also get chronic fatigue when glutened, and my muscles feel like I have just run a marathon. I will have zero desire to move, and it is really hard work to go anything, even to get up to go to another room. This issue lasts about a week each time. However, I am much older than your daughter, and have been dealing with this symptom at this lower level of severity for a long time. Given your daughter's youth and the severity of her reaction, it is important for her to be thoroughly checked out.

I would be very pleased to hear how you get on with this, and hope to see you post in due course that this distressing symptom has resolved.

Best wishes.

SarahJimMarcy Apprentice
SarahJimMarcy
Posted
  • Author

Well, we ended up at Children's ER today as she had another episode early this morning. They did a bunch of tests and their working guess is that she is low in trace nutrients, especially selenium and zinc, and that thyroid may be an issue. More results to come on Thursday ...

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Well, we ended up at Children's ER today as she had another episode early this morning. They did a bunch of tests and their working guess is that she is low in trace nutrients, especially selenium and zinc, and that thyroid may be an issue. More results to come on Thursday ...

I hope they figure out what is going on and she feels better soon. Thanks for the update on how she is doing.

rosetapper23 Explorer
rosetapper23
Posted

Oh, this is good news! I hope that nutritional elements will be the only thing they find. Hooray for good medical care!

SarahJimMarcy Apprentice
SarahJimMarcy
Posted
  • Author

All tests have come back normal and it is the primary care doctor's opinion that it is stress. Being 14, starting high school, having a vision disability and celiac on top of that is too much. We have calls in to therapists. I feel like a terrible parent for not knowing. When I got my diagnosis, I was relieved. But I should have known that is not how a 14 year old would feel.

  • 1 month later...
SarahJimMarcy Apprentice
SarahJimMarcy
Posted
  • Author

I know people can come back to these threads many years later so I thought I would update it. After the ER visit, we had to go follow up with our primary care doctor. He was out that week, so I asked for the most experienced doctor they had available. So it was Dr. Hoffman at Southdale Peds (MN) who said, "I think this is stress. I could send you to more doctors and I will give you some names, but whenever I give someone a life-chainging diagnosis like celiac, I give them therapists names as well." Well, Dr. Hoffman was giving me some very wise advice. We have found a good therapist and it is starting to make a difference. I guess the lesson is do not ignore the psychological element to celiac. I'm really proud of the progress my daughter is making.

rosetapper23 Explorer
rosetapper23
Posted

Thank you so much for the update--I've wondered over the past month if your daughter's problems had been resolved.

It's good to know that she's on the path to good health once again and that you found a caring doctor.

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. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      44

      results from 13 day gluten challenge - does this mean I can't have celiac?

      I'm not delaying my recovery- I was well on my way to recovering, IF I do have celiac disease by listening to my body and not eating the foods that made me feel ill. the drug I just stopped taking was making me incredibly ill and it's unfortunate and more than a little frustrating that the dr
    2. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      44

      results from 13 day gluten challenge - does this mean I can't have celiac?

      Click on the image to make it larger. Maybe doesn't work on phone browser, That was from 2021. Absolutely, they should be tested, The point is you have symptoms that the doctors don't understand and malabsorption may be the cause. Not trying to. But much of your rant includes refeferences that may indicate multiple nutritional deficiencies...
    3. Scott Adams
      0

      Celiac.com Video News: January 2026

    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      44

      results from 13 day gluten challenge - does this mean I can't have celiac?

      I can't read any of this... the print is too small and it looks like all you eat is milk, cereal cookies and some fruit..? and some coffee?
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      44

      results from 13 day gluten challenge - does this mean I can't have celiac?

      fortunately you don't need to understand anything that doesn't directly affect you. 🤗 you earlier assumed I was deficient in nutrients and minerals due to celiac malabsorption but...... now it doesn't matter? because why? it might mess up your deficiency argument? if you don't know the difference between having actual celiac disease and NC...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,427
    • Most Online (within 30 mins)
      7,748
    Elizabetht
    Newest Member
    Elizabetht
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I'm not delaying my recovery- I was well on my way to recovering, IF I do have celiac disease by listening to my body and not eating the foods that made me feel ill. the drug I just stopped taking was making me incredibly ill and it's unfortunate and more than  a little frustrating that the dr  
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Click on the image to make it larger.  Maybe doesn't work on phone browser,  That was from 2021. Absolutely, they should be tested, The point is you have symptoms that the doctors don't understand and malabsorption may be the cause.   Not trying to.  But much of your rant includes refeferences that may indicate multiple nutritional deficiencies.     Some countries also have tax incentives and financial aid for Celiacs.   Celiac disease is recognized as a disability under the ADA because it substantially limits major life activities like eating and digestive function. Protections require reasonable accommodations in public accommodations, including schools (504 plans), colleges, and hospitals. These often include providing safe, gluten-free food, though they do not force restaurants to provide it.  As far as your recovery, eat gluten free.  Get healthier now and worry about diagnosis later.  Many here on the forum have gone ten or more years looking for a diagnosis, with many doctors and many misdiagnosis along the way. It really doesn't matter why, but you cannot eat  gluten.  That is what is important.  With gluten out of the way, maybe the doctors can make sense of your remaining symptoms.  If you need the ADA, then a medical diagnosis is the way to go.  Meantime you are delaying your recovery from whichever celiac disease or NCGS and the inevitable step one of Gluten Free Diet. tWe come to share experiences and maybe it will help someone. In reality, I don't care.  By the way I have stopped 6 medications Against Medical Advice because they did not do their job and the side effects were crippling. This is a lifelong fight for your life.  Pick you battles carefully.  Assume the worst, celiac disease, and deal with it.  Denial is not just a river in Egypt. Pleased to meet you, too.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I can't read any of this... the print is too small and it looks like all you eat is milk, cereal cookies and some fruit..?   and some coffee?   
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      fortunately you don't need to understand anything that doesn't directly affect you.  🤗 you earlier assumed I was deficient in nutrients and minerals due to celiac malabsorption but...... now it doesn't matter? because why? it might mess up your deficiency argument?  if you don't know the difference between having actual celiac disease and NCGS....!!!! correct me if I'm wrong but actual celiac disease causes actual physical damage to your body and increases your risk of certain cancers... just as a start. I have an identical twin sister- IF I have celiac disease, chances are she may too. I have a daughter and other first degree relatives... you also get ADA protections with an actual celiac diagnosis.  but again, not your decision to make  nor to understand. but to suggest that there is no valid reason to find out for sure is incomprehensible on a board dedicated to celiac disease. if you ask me but you didn't so- nevermind.   don't worry though, another member has declared that in her expert opinion based on who knows what- that I don't have celiac!!!  but instead I am "full of beans" and probably killing myself for eating such scary things, I don't know.   if you think you can diagnose me off one single biomarker and a hunch of some sort...based on your history and some research study that you think is relevant- um, well, Glad to meet you, Dr McCoy aka Bones. 🫠 I did not know this was a place where strangers want to play doctor  I am hoping to hear from other members who are not so quick to make judgements and... stuff, let's just leave it at that... perhaps there aren't any.  time will tell I guess                    
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

×
×
  • 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.