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. knitty kitty
      - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      24

      Pain in the right side of abdomen

      It's important to correct the B12 deficiency first, replenishing the stores of B12 in the body within organs and tissues. As more B12 becomes available, the body will adjust how much folate to absorb from the diet. Dietary folate sources include leafy greens, broccoli, and Brussels sprouts, and liver. (Avoid spinach due to high oxalates and risk...
    2. Scott Adams
      - Scott Adams replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      24

      Pain in the right side of abdomen

      Vitamin B9 (Folate): The UL for Folic Acid is set at 1,000 mcg (1 mg) per day for adults. This limit primarily applies to synthetic folic acid found in supplements and fortified foods, not naturally occurring folate in food. High intake of folic acid can mask the symptoms of Vitamin B12 deficiency, which can lead to neurological damage if left untreated....
    3. Heatherisle
      - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      24

      Pain in the right side of abdomen

      Hasn’t been given folic acid as GP says vit b and folic acid can’t be given together which I find strange cos any time I did venepunctures B12 and folate were always grouped together? Her folate level was 2.2, just below the normal level
    4. Heatherisle
      - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      24

      Pain in the right side of abdomen

      Hi Thanks for your input. Don’t know which exact medication she’s on, keep asking but she keeps forgetting!!! I still think her Vitamin D levels might be low cos she had the back pain and tingling last year( around March /April) and levels were low so she had 3 month course then and it helped. She’s coming home next week (as in to ours) for a long weeke...
    5. knitty kitty
      0

      Dairy and Celiac: studies

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,668
    • Most Online (within 30 mins)
      7,748
    Hope Durbin
    Newest Member
    Hope Durbin
    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

    • knitty kitty
      Pain in the right side of abdomen

      By knitty kitty · Posted

      It's important to correct the B12 deficiency first, replenishing the stores of B12 in the body within organs and tissues.    As more B12 becomes available, the body will adjust how much folate to absorb from the diet.  Dietary folate sources include leafy greens, broccoli, and Brussels sprouts, and liver.  (Avoid spinach due to high oxalates and risk of kidney stone formation.). Folate level should be checked in future just in case Celiac malabsorption affects it.   Thiamine deficiency can be found with B12 deficiency.  B12, Pyridoxine B6, and Thiamine B1 all are involved with nerve health and nerve transmission.  These three vitamins together to improve nerve health better than just one of them alone.  They relieve neuropathy and pain, and improve brain function.  You're being an amazing mom for advocating for your daughter's health!  Hurrah! Interesting Reading: B Vitamins in the nervous system: Current knowledge of the biochemical modes of action and synergies of thiamine, pyridoxine, and cobalamin https://pmc.ncbi.nlm.nih.gov/articles/PMC6930825/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Thiamin metabolism in vitamin B6 or vitamin B12 deficient rats https://pubmed.ncbi.nlm.nih.gov/859042/ B Vitamin Deficiencies and Associated Neuropathies https://pmc.ncbi.nlm.nih.gov/articles/PMC12855320/#:~:text=The neurotropic B vitamins -B1,neuropathies [3%2C 4].
    • Scott Adams
      Pain in the right side of abdomen

      By Scott Adams · Posted

      Vitamin B9 (Folate): The UL for Folic Acid is set at 1,000 mcg (1 mg) per day for adults. This limit primarily applies to synthetic folic acid found in supplements and fortified foods, not naturally occurring folate in food. High intake of folic acid can mask the symptoms of Vitamin B12 deficiency, which can lead to neurological damage if left untreated. This is because folic acid supplementation can correct anemia caused by B12 deficiency without addressing the underlying neurological damage. Some studies suggest that excessive folic acid intake might increase the risk of certain cancers, such as colorectal cancer, particularly in individuals who have precancerous lesions.
    • Heatherisle
      Pain in the right side of abdomen

      By Heatherisle · Posted

      Hasn’t been given folic acid as GP says vit b and folic acid can’t be given together which I find strange cos any time I did venepunctures B12 and folate were always grouped together? Her folate level was 2.2, just below the normal level
    • Heatherisle
      Pain in the right side of abdomen

      By Heatherisle · Posted

      Hi Thanks for your input. Don’t know which exact medication she’s on, keep asking but she keeps forgetting!!! I still think her Vitamin D levels might be low cos she had the back pain and tingling last year( around March /April) and levels were low so she had 3 month course then and it helped. She’s coming home next week (as in to ours) for a long weekend so hopefully some TLC from mum and dad will help!!!    
    • Scott Adams
      how long does it take for the genetic blood test for celiac to come back?

      By Scott Adams · Posted

      Genetic testing for celiac disease (the HLA-DQ2 and HLA-DQ8 genes) usually takes about 3–10 days to come back, depending on the lab your doctor uses, though some places may take up to two weeks. The test itself doesn’t diagnose celiac disease—it only shows whether you carry the genes that make celiac possible. About 30–40% of people have one of these genes, but only a small percentage actually develop celiac disease. However, if the test is negative for both genes, celiac disease becomes extremely unlikely, which is why your doctor mentioned possibly canceling the endoscopy if the result is negative. If it’s positive, it just means celiac remains a possibility and further testing, like a gluten challenge followed by endoscopy, helps confirm it. Since you have an identical twin, it’s definitely useful information to share if the genes are present, because twins share the same genetic risk. It sounds like you found a very thorough GI doctor, which is great, especially since she’s also monitoring nutrients and looking at the whole picture.
×
×
  • 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.