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

Seizures

skimomma

By skimomma
in Related Issues & Disorders

Recommended Posts

skimomma Newbie
skimomma
Posted

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.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

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.

skimomma Newbie
skimomma
Posted
  • Author

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?

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

soblessed128 Newbie
soblessed128
Posted

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.

macocha Contributor
macocha
Posted

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.

skimomma Newbie
skimomma
Posted
  • Author

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!

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

Celiac.com Sponsor (A8-M):


skimomma Newbie
skimomma
Posted
  • Author

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.

skimomma Newbie
skimomma
Posted
  • Author

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!

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

macocha Contributor
macocha
Posted

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!

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. RMJ
      - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea

      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight. My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she...
    2. Colleen H
      - Colleen H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Stomach burning and neuropathy

      Hello I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet. Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I...
    3. sleuth
      - sleuth replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      Of course my son is on a 100% gluten free diet. I wish his symptoms were not debilitating as there are right now. He cannot work, even when a miniscule of cross contamination occurs. It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc. It's literally neurological inflammation. Not to be taken lightly here. We...
    4. Scott Adams
      - Scott Adams replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-F...
    5. Me,Sue
      - Me,Sue posted a topic in Coping with Celiac Disease
      1

      Nausea

      Hi all I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also]. BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,840
    • Most Online (within 30 mins)
      7,748
    Sunnie Sunshine
    Newest Member
    Sunnie Sunshine
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • RMJ
      Nausea

      By RMJ · Posted

      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Stomach burning and neuropathy

      By Colleen H · Posted

      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Nausea

      By Me,Sue · Posted

      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
×
×
  • 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.