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Links Between Spina Bifida, celiac disease And Seizures

blessedmama

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blessedmama Newbie
blessedmama
Posted

My daughter is 4 years old and was born with SB. She is a lower level of SB and is able to walk and has developed well (considering the horific prep the drs gave us). I breastfed her for 2.5 years and she has been healthy and gaining weight as she should. On her 3rd birthday she had a seizure. Oddly enough she continued to have them since, but only every 3-4 months. Some are mild and others required 911 emergency calls. The neurologist gave us a prescription to prevent them, but with side effects such as halucinations we have not given it to her. If she were having them more regularly we would probably reconsider. After she was born and after two miscarriages since, I was tested for Celiac, but do not have it. Both of my bioligical grandmothers (mom's mom and dad's mom) have celiac disease as well as my aunt and two first cousins. Although I do not have it, I have been around them enough to know what it entails and the symptoms. Anyhow, I have been researching celiac disease in relationship to seizures and SB and have found some, but most often what the results would have been if I had celiac disease and I do not. I am definitely going to get her tested, because I haven't before. Does anyone know a person with SB that has celiac disease?

I am sure I will get a few responses with advice for celiac disease, etc. I am not looking for that as much as someone who may know the links with Spina Bifida and celiac disease....although seizures can be in result to SB and being shunted anyway.

Thank you,

blessedmama

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home-based-mom Contributor
home-based-mom
Posted
My daughter is 4 years old and was born with SB. She is a lower level of SB and is able to walk and has developed well (considering the horific prep the drs gave us). I breastfed her for 2.5 years and she has been healthy and gaining weight as she should. On her 3rd birthday she had a seizure. Oddly enough she continued to have them since, but only every 3-4 months. Some are mild and others required 911 emergency calls. The neurologist gave us a prescription to prevent them, but with side effects such as halucinations we have not given it to her. If she were having them more regularly we would probably reconsider. After she was born and after two miscarriages since, I was tested for Celiac, but do not have it. Both of my bioligical grandmothers (mom's mom and dad's mom) have celiac disease as well as my aunt and two first cousins. Although I do not have it, I have been around them enough to know what it entails and the symptoms. Anyhow, I have been researching celiac disease in relationship to seizures and SB and have found some, but most often what the results would have been if I had celiac disease and I do not. I am definitely going to get her tested, because I haven't before. Does anyone know a person with SB that has celiac disease?

I am sure I will get a few responses with advice for celiac disease, etc. I am not looking for that as much as someone who may know the links with Spina Bifida and celiac disease....although seizures can be in result to SB and being shunted anyway.

Thank you,

blessedmama

How were you tested? Blood work? Biopsy? Genetic? Have you gone on a gluten-free diet or put your daughter on one? Without going into details, there could be malabsorbtion issues at work here.

blessedmama Newbie
blessedmama
Posted
  • Author
How were you tested? Blood work? Biopsy? Genetic? Have you gone on a gluten-free diet or put your daughter on one? Without going into details, there could be malabsorbtion issues at work here.

Yes, I have wondered if I should have had a biopsy...I only had bloodwork. Considering how prominent it is in my family further testing may not be a bad idea. I haven't put her on the diet, because I truly never thought that this could be the cause of the seizures. I guess when you're little girl has so much going on already, you don't want to think there could be ANOTHER disease or defect. What do you know about the genetic oral swab test? My chiropractor oddly enough offered to do it for her for no cost and I have heard it's expensive, so I might do that for both of us. Thank you.

missy'smom Collaborator
missy'smom
Posted

I'll mention malabsorbtion as well. My sister was having seizures and they couldn't find out what they were or why and she was taking the maximum dose of meds and it was no longer working. She still doesn't know what caused them but she is gluten-free now and it is clear that she has celiac disease and no longer has the seizures. I believe that she is still on the meds but at least it is clear that she is absorbing them now and they are working. She may try decreasing the dose and going off them.

home-based-mom Contributor
home-based-mom
Posted
Yes, I have wondered if I should have had a biopsy...I only had bloodwork. Considering how prominent it is in my family further testing may not be a bad idea. I haven't put her on the diet, because I truly never thought that this could be the cause of the seizures. I guess when you're little girl has so much going on already, you don't want to think there could be ANOTHER disease or defect. What do you know about the genetic oral swab test? My chiropractor oddly enough offered to do it for her for no cost and I have heard it's expensive, so I might do that for both of us. Thank you.

Blood work is notoriously inaccurate - I think someone posted as much as 30% false negatives? Never a false positive, though. I have not had tests so hopefully someone else will jump in with more testing info.

Definitely do research here on the forum for other manifestations of celiac and also for tests others have done. There is some incredible knowledge available here! :)

  • 5 years later...
TerraNeu Newbie
TerraNeu
Posted

There Is A Link Between Celiac And Malabsorption Of All Kinds.... Especially Folic Acid (B12). My Mom Kept Coming Up Negative; But She Is Celiac... Her Mom, My Grandma.. And I Are Both Celiac. My Husband Has Never Been Tested... But He Is Doing Better On A Gluten-Free & Corn-Free Diet, He Just Got Diagnosed Today With Spina Bifida. I Am Pretty Sure His Mom Has Celiac... But She Wont Get Tested And Does Not Want To Talk About It. It Is Better No KNow. I Am 43 And Have Had a Life Time Of Complications... LUPUS, RA, FIBRO, HASHIMOTOS, DH.. And Now Osteoporosis... And A List Of Allergies To Food, Medicines And Chemicals That Is Super LOng!!! It Is Best To Know THe TRuth.

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