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Seizures


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#1 skimomma

 
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Posted 01 March 2010 - 09:46 PM

I have a child who suffered from severe seizures for years until 6 months ago I found information by accident about the link between seizures and wheat allergy. She eliminated wheat from her diet and has not had a seizure since September. I don't if she is "cured", but life is certainly much better. If she eats gluten she has symptoms ranging from depression, muscle aches, muscle tremors, and feeling like she has the flu. We learned last year that her Vitamin D level was very low. I learned how many gluten allergy suffers are low in minerals and vitamins. Just wondering if others have heard of this seizure symptom. Seems unbelievable a doctor didn't not the information I did as a mom about the possible connection.
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#2 ravenwoodglass

 
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Posted 02 March 2010 - 06:49 AM

Not only have I heard of it I had them for years. At one time I was on almost toxic levels of an antiseizure med with horrible side effects. It is too bad that more isn't aknowledged in this country about the effects of gluten on the brain.
I'm glad to hear you DD is doing well. It must be an incredible relief for all of you to have her responding so well to the diet.
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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 skimomma

 
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Posted 02 March 2010 - 10:47 AM

Not only have I heard of it I had them for years. At one time I was on almost toxic levels of an antiseizure med with horrible side effects. It is too bad that more isn't aknowledged in this country about the effects of gluten on the brain.
I'm glad to hear you DD is doing well. It must be an incredible relief for all of you to have her responding so well to the diet.



Thank you for sharing. I was sure we would find others with similar symptoms. Since this condition leads to being nutritionally deficient. Did you address that in any way? Certain supplements or anything?
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#4 ravenwoodglass

 
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Posted 02 March 2010 - 12:19 PM

Thank you for sharing. I was sure we would find others with similar symptoms. Since this condition leads to being nutritionally deficient. Did you address that in any way? Certain supplements or anything?


My brain damage got pretty advanced but I have healed a great deal. I took sublingual B12 daily for a long time and still take it once a week. I also took Royal Jelly, from bees so if someone is allergic to bees it is out, I took that more for my skin and hair issues but it seemed to help with energy also. I also still take a 'stress' vitamin with high levels of B and C.
  • 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)

#5 soblessed128

 
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Posted 03 March 2010 - 11:30 AM

I have had seizures for 15 yrs and just realized that they are probably gluten related. I would notice that when I ate gluten products the side effects of my meds would increase. How ironic. Last year I caught a virus and my doctor thought it was allergy related. I soon after that started having symptoms of fybromyalgia. I then connected the dots and realized I had to go gluten free. My seizure activity has decreased tremendously. So much my neurologist is thinking of decreasing my meds. Good luck to you and your duaghter. I wish more attention was given to diet and how it plays a part in diseases.
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#6 macocha

 
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Posted 04 March 2010 - 08:31 AM

that is really interesting and something to be aware of! Thank you for sharing.

On a side note, my son has a low vit d intake as well. interesting.
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Son officially diagnosed 3.18.10 with celiac biopsy results. age 12.

daughter, 10, diagnosed fructose intolerant 2009.

#7 skimomma

 
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Posted 04 March 2010 - 11:59 AM

I have had seizures for 15 yrs and just realized that they are probably gluten related. I would notice that when I ate gluten products the side effects of my meds would increase. How ironic. Last year I caught a virus and my doctor thought it was allergy related. I soon after that started having symptoms of fybromyalgia. I then connected the dots and realized I had to go gluten free. My seizure activity has decreased tremendously. So much my neurologist is thinking of decreasing my meds. Good luck to you and your duaghter. I wish more attention was given to diet and how it plays a part in diseases.


That is really great you made the connection and are having less seizures. They are so life interfering. My daughter also has/had many fibromyalgia symptoms as well. Muscle pain, brain fog, trouble sleeping.
At first we just cut out the wheat products, but it became clearer as we went that gluten is the problem. I wonder as you stay off the gluten and your body detoxes (not a fun process - my daughter acted like she had flu through that part) and your gut heals, that you may be healthier than ever before. Good luck to you!
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#8 skimomma

 
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Posted 04 March 2010 - 12:03 PM

that is really interesting and something to be aware of! Thank you for sharing.

On a side note, my son has a low vit d intake as well. interesting.



When I read how depleted they can be in vitamins and minerals it was another red flag when I remembered the Vit D test being low. I suspect Vitamin B as well. From what I have read so far sometimes they are so low in folate (which is a key nutrient to the neurological system) - so maybe that's part of the seizure trigger. There is a video on YouTube about a young boy with seizures - no apparent cause. The mom was found to be celiac, so they tested the family and the little boy was positive. As his diet changed, the seizures stopped. That is what got us started. Do you give your son supplements now? We use Carlson drops and she went from a level of 14 to the 40's - still too low, but better.
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#9 skimomma

 
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Posted 04 March 2010 - 12:06 PM

My brain damage got pretty advanced but I have healed a great deal. I took sublingual B12 daily for a long time and still take it once a week. I also took Royal Jelly, from bees so if someone is allergic to bees it is out, I took that more for my skin and hair issues but it seemed to help with energy also. I also still take a 'stress' vitamin with high levels of B and C.


Being a teen, it's an issue to get her take responsibility for taking supplements, so she can truly get healthier. But I give her credit - it's not easy to do this diet as a teen and at least she has changed that part. She must of felt really bad to stick to it as long as she has. I hope you continue to improve!
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#10 ravenwoodglass

 
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Posted 04 March 2010 - 03:27 PM

Being a teen, it's an issue to get her take responsibility for taking supplements, so she can truly get healthier. But I give her credit - it's not easy to do this diet as a teen and at least she has changed that part. She must of felt really bad to stick to it as long as she has. I hope you continue to improve!


If she is good about the diet she may get better with the supplements. I had a student once who had a severe brain injury but really needed to feel she was responsible for herself. We used post it notes all over the place. Perhaps a post it on the door of the frig or her bathroom mirror that says 'Don't forget your supplements' might do the trick.
  • 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)

#11 macocha

 
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Posted 05 March 2010 - 01:43 PM

I give him Vit D pills. I have liquid that I give the youngest (who is four). My other kids I have upped their Vit D because of the lack of sun here in the Pacnw. So, even though I was supplementing him prior to the Vit D test, he was still showing a lower level.

I will have to look into the Carlson drops. Thanks!
  • 0
Son officially diagnosed 3.18.10 with celiac biopsy results. age 12.

daughter, 10, diagnosed fructose intolerant 2009.




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