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

Celiac And Seizures

sugarsue

Recommended Posts

sugarsue Enthusiast
sugarsue
Posted

My 7 yr old dd has seizures that we believe are caused by gluten. She's been gluten free for over a year and has not had a seizure since.

I used to know within 10 minutes whether she had gluten (very bad BM's) but now things have changed and I can't tell any more. So I got a little lax on checking every ingredient. So she had a seizure this week. I have tracked back and I know where she got some good doses of gluten.

So of course I am getting the diet back under tight wraps. But this has me thinking. We don't have a celiac diagnosis but we do have a gluten intolerant diagnosis since the tests have been inconclusive. Does anyone know if seizures caused by gluten implies celiac? Or can non-celiac gluten intolerance cause seizures too. I think it is just splitting hairs since if gluten is causing her seizures, she can't eat any gluten.

Thanks.

Susan

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

My 7 yr old dd has seizures that we believe are caused by gluten. She's been gluten free for over a year and has not had a seizure since.

I used to know within 10 minutes whether she had gluten (very bad BM's) but now things have changed and I can't tell any more. So I got a little lax on checking every ingredient. So she had a seizure this week. I have tracked back and I know where she got some good doses of gluten.

So of course I am getting the diet back under tight wraps. But this has me thinking. We don't have a celiac diagnosis but we do have a gluten intolerant diagnosis since the tests have been inconclusive. Does anyone know if seizures caused by gluten implies celiac? Or can non-celiac gluten intolerance cause seizures too. I think it is just splitting hairs since if gluten is causing her seizures, she can't eat any gluten.

Thanks.

Susan

The only experience I have with seizures is with my brother. He developed them late in life, and we come from a suspected total celiac family, although none of us has been tested. My sister and I are gluten free and my sister's daughter is diagnosed celiac. My brother was born with eczema all over his body, always had multiple issues including failure to thrive, digestive problems, and then the seizures wich were labelled petit mal but I don't think anyone ever did a thorough workup on him before he died (of seizure-related complications). I wish someone had thought to take him off gluten, because we were a mjaor gluten-eating family. But not much was known about celiac then. I don't know if I am celiac or gluten intolerant - I just don't eat gluten, period. As you say, it really doesn't make much difference, but there is a definite hereditary pattern in our family on both my mother's and father's side.

Skylark Collaborator
Skylark
Posted

That's wonderful that you figured out the cause of your daughter's seizures!

As you realize, the phrases we use to describe gluten intolerance are not as well-defined as one would like. There can be autoimmune reactions in the nervous system that are initiated by gluten and stop when gluten is removed from the diet, just like intestinal celiac sprue. They seem to involve a different transglutaminase enzyme and possibly are more associated with HLA-DQ1 gene subtypes. Some of the people with nervous system autoimmunity do not have the intestinal antibodies doctors look for when they diagnose celiac disease, and they may not have any GI symptoms from eating wheat. Strictly your daughter would not be "celiac" but in ten or twenty years the semantics may totally change.

sugarsue Enthusiast
sugarsue
Posted
  • Author

Thank you both for your responses. I have seen a few other things that could possibly have been a seizure since that day but nothing like the first one I saw last week. Hopefully tightening her diet back up will take care of it. I have noticed her tummy hurting 1-2 days after a glutening. I think I just need to learn her new signs and of course start to be more careful again.

Susan

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,963
    • Most Online (within 30 mins)
      7,748
    AlissaW
    Newest Member
    AlissaW
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.