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11 replies to this topic

#1 SarahJimMarcy

 
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Posted 31 March 2012 - 05:45 AM

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.
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Daughter diagnosed with celiac via endoscopy, April, 2011.
Mom, Dad and daughter all go gluten free.
We live in the Twin Cities, MN.

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#2 ravenwoodglass

 
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Posted 31 March 2012 - 09:52 AM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 rosetapper23

 
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Posted 31 March 2012 - 10:53 AM

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....
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#4 SarahJimMarcy

 
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Posted 31 March 2012 - 11:19 AM

We are only about an hour from the Mayo. Do you think I should try to get her in there?
  • 0
Daughter diagnosed with celiac via endoscopy, April, 2011.
Mom, Dad and daughter all go gluten free.
We live in the Twin Cities, MN.

#5 ravenwoodglass

 
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Posted 31 March 2012 - 01:42 PM

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.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 UKGail

 
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Posted 01 April 2012 - 06:38 AM

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.
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#7 SarahJimMarcy

 
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Posted 02 April 2012 - 11:39 AM

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 ...
  • 0
Daughter diagnosed with celiac via endoscopy, April, 2011.
Mom, Dad and daughter all go gluten free.
We live in the Twin Cities, MN.

#8 ravenwoodglass

 
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Posted 02 April 2012 - 11:54 AM

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.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#9 rosetapper23

 
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Posted 03 April 2012 - 09:51 PM

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

 
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Posted 05 April 2012 - 04:57 PM

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.
  • 0
Daughter diagnosed with celiac via endoscopy, April, 2011.
Mom, Dad and daughter all go gluten free.
We live in the Twin Cities, MN.

#11 SarahJimMarcy

 
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Posted 27 May 2012 - 07:17 PM

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.
  • 0
Daughter diagnosed with celiac via endoscopy, April, 2011.
Mom, Dad and daughter all go gluten free.
We live in the Twin Cities, MN.

#12 rosetapper23

 
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Posted 28 May 2012 - 10:38 AM

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.
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