Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 And Celiac

sellywelly

Recommended Posts

sellywelly Newbie
sellywelly
Posted

hi i am a teen that has seizures and celiac i was wondering if anyone else has them both. i know that having celiac can cause seizures . so write back :)

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

Celiac.com Sponsor (A8-M):


missy'smom Collaborator
missy'smom
Posted

Open Original Shared Link 2007, 07:43 PM'

My sister has seizures and shes' not diagnosed yet but I think she had celiac disease too.

Maybe this discussion will help. You can also go to the Example search box above and erase tomato sauce and type in seizures and search for other discussions that way.

ravenwoodglass Mentor
ravenwoodglass
Posted

I was but not anymore. I do not seize now unless glutened and even then they are different and not as severe. I should note I did not have full gran mal seizures, I had seizures in the sub illeal cortex which have a different sort of presentation.

cybermommy Newbie
cybermommy
Posted

I was diagnosed w/ idiopathic epilepsy 20 yrs ago (in college). Though by history we can document seizures in elementary school. I had mixed type seizures (mostly tempral lobe, but have had "grand mal" seizures too). I was on multiple meds & still had some seizures. When I went low gluten (only the hidden trace sources) I stopped having seizures. I am now totally gluten-free & off all seizure meds. The only seizure I have had since was when I got glutened & it was mild (eye blinking). I am not even having seizures w/ strobe lights or being startled awake. :D I still avoid Nutrasweet as it is unhealthy anyway & I am not willing to risk it. It is nice to be out of the fog that comes w/ celiac disease & seizure meds. :D

Hope this helps. Remember you can't suddenly discontinue seizure meds or it will cause you to go into a seizure that you can't get stopped (life threatening). Even people w/o epilepsy will have seizures if they take seizure meds then suddenly discontinue it. If you think having your celiac disease under control has resolved your seizure disorder, talk to your doctor about trying to wean from it. I hope yours is celiac disease related so you can be seizure free too. Keep me posted as to how you are doing.

God Bless,

Deb

  • 2 weeks later...
hlm34 Apprentice
hlm34
Posted

I have seizures and celiac. They CAN be related, but it my case they are not. I wish the seizures were a result of the celiac though, and then being gluten-free would relieve them. Unfortunately, since they are not, i have to do the gluten-free diet AND take meds for the seizure.

Have you had an EEG done?

Ed-G Newbie
Ed-G
Posted
hi i am a teen that has seizures and celiac i was wondering if anyone else has them both. i know that having celiac can cause seizures . so write back :)

I have both celiac and epilepsy also, but they are also unrelated. I was born having seizures, and had a febrile seizure when I was two, but the epilepsy did not begin to develop in earnest until I was a teenager.

I am interested in what type of seizures you have.

Ed

imsohungry Collaborator
imsohungry
Posted

Yep, epilepsy and celiac...unfortunately, mine are unrelated. However, there is evidence that the two can be related; it just doesn't happen to be so in my case. Keep hope and keep researching.

-Julie B)

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

Celiac.com Sponsor (A8-M):


RobinN Newbie
RobinN
Posted
hi i am a teen that has seizures and celiac i was wondering if anyone else has them both. i know that having celiac can cause seizures . so write back :)

My daughter has a new seizure disorder (first seizure at the age of 14). We have not had her tested for celiac and yet I put her on an elimination diet and we are waiting to see results. We have had one month free of seizures, and yet also started natural hormones, so I am not sure which is more helpful. Can say almost with assurance that the anti seizure meds are not helpful.

Thank God for the internet.

zkat Apprentice
zkat
Posted

I was diagnosed with idiopathic epilepsy when I was 19 (13 yrs. ago), in hindsight it was one of the first true signs of the celiacs. I have weened myself off my meds (not recommended without a dr) and have been seizure free for 6 months.

Kat.

marciab Enthusiast
marciab
Posted

I had myoclonus and petite mal seizures and both appear to have been eliminated by going gluten, diary, soy, egg, corn and chemical free. My stomach was killing me so I had to eliminate all of these at once, so I have no idea which one was the culprit. Or if some combination of these caused it.

However, I know I will get myoclonus, insomnia and horrible "D" if I accidently eat gluten again. I haven't had a petite mal seizure in 6 - 9 months ? but those weren't happening every day like the myoclonus.

I have read that dairy, etc can cause symptoms in others though. I haven't tested dairy, etc solely to see if any of those would cause my symptoms to come back.

If you google "gluten epilepsy" or "gluten seizures" you will get plenty of reliable sites on how the two are related.

Marcia

  • 3 years later...
Momofglutenfree Newbie
Momofglutenfree
Posted

Hi everyone- This is my first time posting on this board. I have referenced this web site probably a hundred times over the last two weeks-- it's been very helpful. My daughter (now 11) starting having seizures in January 2009. They started as partial seizures, but have now progressed to tonic-clonic seizures where she loses consciousness. They are terrifying for her and us.

She has been to the ER multiple times; we have seen neurologists as well. She has had two EEG's and an MRI. The medical community can provide no answers-- all the tests come back "normal". At any rate, I have been doing a lot of research on my own and have determined to give the gluten free thing a try. She has actually had neurological issues (numbness and tingling in her feet, legs, and now hands) for the last 5 years. In addition, she was thought to be lactose intolerant at one point because of stomach problems, but that turned out not to be the case. Now I wonder if she has been gluten intolerant all along. We are now on day 4 of no gluten. She has adapted very well, and so far, no seizures or numbness/tingling in her limbs.

I would love to hear from others that perhaps have had similar experiences. I will keep you all posted on our progress. I truly hope it is gluten intolerance because that is something we can live with. The other thing her neurologist is looking at is MS-- which is far more discouraging. Thanks!

mushroom Proficient
mushroom
Posted

Hello, and welcome.

I had a younger brother who, in retrospect, I am convinced was celiac/gluten intolerant. He had failure to thrive as a child, tremendous problems with eczema from birth. chronic diarrhea, and then later in life developed a seizure disorder which baffled his doctors - this was 30 years ago. They were initially passed of as petit mal, but became progressively worse and were uncontrrollled by meds. He passed away due to complications from a seizure ten years later. My sister and I are both self-diagnosed gluten intolerant/probable celiacs, and my other sister has gluten problems too which she chooses to ignore.

I, too, hope your daughter's problems can be resolved by going gluten free. Keep us informed.

txplowgirl Enthusiast
txplowgirl
Posted

Hi Selly, the (Company Name Removed - They Spammed This Forum and are Banned) has a good article about the relation between the two.

Becci Enthusiast
Becci
Posted

I had seizures before I was dx with Celiac, and felt recently as if I was going to have another one... Luckily I didn't...

But yes, I have had them... They started when I was 15...

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I had unexplained seizures before going gluten free. Actually they weren't sure if they were seizures or if I was fainting. My husband found me on the floor a couple times right after it happened (he heard the thud as I hit the floor once) and I usually had no memory of the minutes prior to it happening. I was tested for narcolepy, epilepsy, sleep apnea (because I also had extreme fatigue), I wore a heart monitor for a week, had an echocardiogram and had a scan of my entire spine. Everything came back normal. Since I went gluten free (almost a year ago now) I have not had any seizures/fainting. I don't have any evidence of a connection, but I would not be surprised.

  • 1 year later...
Crumblingbread Newbie
Crumblingbread
Posted

Hey all, first post here.

I was diagnosed with Celiac disease (after a large portion of diabetics at my children's hospital were tested because of their correlation) when I was 15, but stopped following the diet when I was 18 or so.

When I was 22, I had two grand mal seizures. After that I was put on Dilantin, a medication to rise a person's phenytoin levels which was slightly lower than it should have been.

I was then stable until last year (age 28) when I had two minor seizures within a couple of months.

No one ever mentioned the possible connection between my diagnosis of celiac disease and seizures. I've recently been tested for Gluten insensitivity and my tests were through the roof, so I clearly do have Celiac disease.

I'm hoping gluten was the cause of my seizures as I never really knew why they occurred.

mushroom Proficient
mushroom
Posted

I, too, hope you remain seizure-free now. From my limited experience with my brother, his seizures were petit mal-type, more a just kind of phasing out and not "being there" for a while mostly. No medication ever helped, he was never diagnosed celiac (although I KNOW he was), and they did become more frequent as time passed. Let's hope that whoever made the connection with celiac was on the right path and you are "cured" of this pesky condition. My best wishes to you. :)

And by the way, welcome to the board.

Archived

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

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


  • Member Statistics

    • Total Members
      126,485
    • Most Online (within 30 mins)
      7,748
    sammiller
    Newest Member
    sammiller
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      10 years later, my celiac is progressing

      By knitty kitty · Posted

      Hashimoto's is a type four hypersensitivity.   Read what this doctor did about hers... https://thyroidpharmacist.com/articles/food-sensitivities-and-hashimotos/ She adopted a Paleo diet. Once you get your inflammation down, and your nutrients up, your body's immune system can calm down and quit reacting to every little thing.
    • GardeningForHealth
      10 years later, my celiac is progressing

      By GardeningForHealth · Posted

      Most doctors would dismiss the experiences I have described here, including my food diary, as somatic reactions, and begin to think of me as a hypochondriac--so I am very careful about what I share with doctors.  Most of the research done so far in the medical field has focused on Type I hypersensitivity: classic IgE-mediated allergic responses. I wasn't even aware of Type IV (or had forgotten about it) until knittykitty reminded me about it with her post. But even when talking about an allergist, does an allergist understand that Celiac is a Type IV hypersensitivity reaction? And if so, would an allergist believe or understand that other foods can cause a Type IV hypersensitivity reaction? And if so, are there objective tests that prove these non-gluten reactions, such as a hypothetical Type IV hypersensitivity reaction to apples, plums, sausage, cassava flour, etc? I do not believe these tests exist right now.  And lets say that these tests did exist, and I could take them, and obtain objective proof (besides my food diary) of my reactions to these foods. Now what? Is there a treatment besides avoiding those foods? I am not aware of it. I would simply be told: avoid all of those foods forever.  And that is not reasonable either. Avoid all of those foods forever? Really? There are times that I feel malnourished. I then will eat a food from the bad list, and suddenly feel much better nourished, but then I have a reaction that begins the next day or the day after that, and lasting many days afterwards. The reaction is always the same: brain fog, fatigue, dizziness, headache, significant enough to impair any productivity. I have been on this elimination diet for about 3 months now, but each time I attempt to re-introduce a food item that I initially reacted to, I have the same reaction. Therefore, I do not believe it will ever be safe in the future to re-introduce a food back into my diet safely. This is a big problem with no solution.
    • aperlo34
      Eye irritation 2.5 months into gluten free diet

      By aperlo34 · Posted

      Title says it all. I’m at 4 months since Dx/starting gluten-free diet but the last month and a half I’ve had pretty irritated eyes. Originally they started really dry and sensitive to light, especially in the morning. Saw the eye doc and he said eye strain/dry eyes due to season change/radiators turning on in my apartment. I’ve been using a heat mask and eye drops and that helped a lot. However my eyes still feel tired and red and gunky, but not really dry anymore. Just a bit irritated.    any thoughts?   THANKS!
    • Mmar
      Refractory Celiac - doctor?

      By Mmar · Posted

      Hello! I have been on a strict gluten-free diet for 20 years after my initial diagnosis, but in July had an endoscopy that showed villous atrophy (but multiple ttgs have all been normal). I have gone through everything in my house to eliminate any gluten and have been eating almost no processed foods, and will be getting a second endoscopy in a month because my GI doctor thinks it could be refractory celiac. She told me that if it’s refractory, I would need to see a “specialist” because she doesn’t know enough.  I live in Philadelphia and the Celiac Center at Jefferson has 0 appointments with any doctors, I keep trying. Does anyone know of either a doctor in Philadelphia that treats refractory celiac or a doctor elsewhere that does virtual appointments to treat refractory? Thank you!
    • knitty kitty
      10 years later, my celiac is progressing

      By knitty kitty · Posted

      @GardeningForHealth, On my journey, I found following the Autoimmune Paleo Diet most helpful in reducing reactions to various foods.  It's very restrictive, but it really helps improve gut health.  It's worth the effort for a few weeks or months. Tea from any grocery store; Tea, organic; Tea, grown in USA, never-sprayed, loose leaf Tea contains TANNINS which can inactivate Thiamin resulting in Thiamin deficiency.  Tannins inhibit the absorption of other vitamins and minerals, especially iron. Tannins can inactivate digestive enzymes.  So drink tea between meals.  Choose a tea with lower levels of tannin, like green tea or Oolong tea.  Oolong tea contains amino acid Theanine which reduces inflammation in the digestive tract. Dairy; Rice, any brand, even after washing 3 times Many people develop Lactose intolerance because damaged villi in the intestinal lining of the digestive tract cannot produce the enzyme Lactase needed to digest the sugar in dairy, Lactose.   Many people with Celiac Disease react to the protein Casein the same as they react to the protein Gluten.  This is because both Casein and Gluten, as well as the protein in rice, carry a similar segment of a protein building block chain (33 mer peptide) that triggers the autoimmune response in Celiac Disease.  Basmati rice is less likely to carry this protein chain and may be better tolerated.  Don't wash rice before cooking.  The added vitamins get washed away.  Some of those grains of rice are extruded vitamins.  They dissolved into the cooking water and are reabsorbed into the grains as the rice cooks. Organic catchup, Potatoes; Tomatoes are a member of the Nightshade vegetables which have been shown to increase gastrointestinal permeability and "leaky gut syndrome."  Potatoes, Peppers and Eggplant also belong to the Nightshades, and should be avoided until healed.  Catsup usually is acidic which can be irritating to the digestive system. Any and all brands of gluten-free breads and dessert items; Cassava flour; Gluten-free flour Often these contain cross contamination with gluten.  @Scott Adams recently posted a new article about this.  Gluten free products are not enriched with vitamins and minerals needed to digest and process them.  They are high in insoluble fiber and saturated fats.  These may also contain microbial transglutaminase, see below. Sausage, Any processed meat These foods contain microbial transglutaminase, a flavor and texture enhancer, called "meat glue" in the food processing industry, which triggers and provokes anti-gluten antibodies to attack the microbial transglutaminase as well as the tissue transglutaminase produced by our own bodies as with Celiac Disease.  We have articles about microbial transglutaminase, too.  Cassava also contains Thiaminase, an enzyme which destroys Thiamin. Cucumbers from a grocery store, but not from my garden, Most apples, Zucchini, Plums Cucumbers, like these other fruits and veggies, contain lots of soluble fiber, pectin, which intestinal bacteria can ferment and then make short chain fatty acids, which are beneficial.  So that's a good thing.  However, commercially produced breeds of veggies and fruits may contain higher levels of pectins than historically home grown varieties.  Excess consumption of pectins can result in gas, bloating and diarrhea.   Bottled spices  There's an article (perhaps @Scott Adams can help us find, please) about how some spices can cause gastrointestinal symptoms. Gluten-free dairy-free ice cream These can cause reactions if one reacts to oats.  Products made from nuts or nut milks may contain high levels of lectins which are hard to digest and can cause all the usual symptoms.   Smoke from a fire; Strong cleaning chemical fumes These contain Sulfites.  Developing a hyperensitivity to Sulfites is possible in Celiac Disease.  We can be low in vitamins and minerals needed to process Sulfites.  I have Hypersensitivity Type Four where the immune system identifies Sulfites as something to be attacked.  Celiac Disease is another Hypersensitivity Type Four disorder. Packaged sweet potato chips; Packaged plantain chips;  Rice; Any and all brands of gluten-free breads and dessert items; Cassava flour; Gluten-free flour; Gluten-free dairy-free ice cream A High Carbohydrate diet can lead to Small Intestinal Bacterial Overgrowth (SIBO).  Adopting a Paleo diet like the AIP diet is a great way to change your gut biome without using antibiotics which kill off the bad with the good bacteria.  Taking probiotics may not be very effective as long as SIBO bacteria are entrenched in the digestive tract.  You change what you eat and you change what grows inside you.  You starve out the bad SIBO bacteria, repopulate and feed the good ones.  Supplementing with Benfotiamin helps because thiamine has antibacterial properties that keeps the bad bacteria in check and benefits the good bacteria.  Benfotiamin is needed to process all those carbs turning them into energy instead of them turning to fat.   I hope this has been helpful.
×
×
  • Create New...