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

Can Gluten Contamination Cause Seizures


Tig

Recommended Posts

Tig Newbie

Its been a decade now since I've been having seizures. I've seen many great neurologist who have prescribe me over six anti-epileptic meds and none seem to work. I've gotten MRI's and catscans done and they find no abnormalities in my brain. So now I'm desperate. I figured it maybe something I'm eating that my brain doesn't like. When I go to a nutritionist she tells me I have gluten allergies. In my country our main foods are either made with wheat or barley. She says all these years I've been depriving myself from nutrients. Basically I'm malnutritioned. So when she does this food allergy test she tells me I'm allergic to gluten, corn, and soy. So what, am I posed to starve to death? And could this gluten allergy thing be the real answer to my seizures?? Please help me figure this out


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

Gluten allergy or celiac, which is an autoimmune disease? The two can cause different problems (although I think seizures, while possible, are rare with either one).

richard

weluvgators Explorer

I know of three people in my small community that get seizures from gluten. One is a classic celiac diagnosis - she was sent by her neurologist to a disbelieving GI who was shocked to find that she was "the worst case" he had ever seen! She had been suffering from idiopathic seizures until they figured out the celiac disease. That was quite a struggle as she is a mother of three young children who was often the sole care provider for them! The other two people that I know who get seizures from gluten are a mother and son. It is quite evident for both of them that gluten exposure (even "just" CC) sends them into seizure. And again, it is a mother of three children (none of whom can drive her home if this happens when they are out!!) that suffers from this horrid side effect of gluten contamination. For the second family, I believe that idiopathic, fatal strokes at relatively young ages also appear in their genetics. The other family has fatty liver disease (amongst alcohol abstainers), thyroid and parathyroid dysfuntion that has also presented.

GlutenFreeManna Rising Star

Its been a decade now since I've been having seizures. I've seen many great neurologist who have prescribe me over six anti-epileptic meds and none seem to work. I've gotten MRI's and catscans done and they find no abnormalities in my brain. So now I'm desperate. I figured it maybe something I'm eating that my brain doesn't like. When I go to a nutritionist she tells me I have gluten allergies. In my country our main foods are either made with wheat or barley. She says all these years I've been depriving myself from nutrients. Basically I'm malnutritioned. So when she does this food allergy test she tells me I'm allergic to gluten, corn, and soy. So what, am I posed to starve to death? And could this gluten allergy thing be the real answer to my seizures?? Please help me figure this out

What country are you in? Perhaps there is somethign being lost in language translation. There is allergy to the gluten grains (wheat, barely, rye) and there is celiac disease or gluten intolerance. These are two different things. Celiac disease is an auto-immune reaction, not the same thing as an allergy. It would be good if you can get your tests to find out which tests they ran to find out about this "allergy". If they did not run a celaic panel then you will wan tot have that done BEFORE you go gluten free. If they did a celaic panel and it was positve then you need to be gltuen free regardles sof whether the seizures are caused by the gltuen. The gluten is making your body starve because it is not allowing you to absorb nutrients from your food. Eat simple gluten-free foods like meat, vegetables, fruit, plain rice, potatoes, etc. you will not starve tryign to eat gluten-free.

Now all that said, I had seizures prior to going gluten free and have not had one since. My seizures were not for as many years as you and were not severe/long lasting ones. Seizures can be caused by many things,so gluten may not be the cause for you. In my case the drs think it was gltuen attacking the brain or related to severe malnutrition somehow. Very little research has been done on the neuological reactions to gluten and seizures are a rare reaction. You can trial a gluten free diet and see if it helps you. Do not expect to see immediate results however. It may take many months to recover from neurological issues caused by gluten if that is the cause of your seizures.

Reba32 Rookie

have you tried a ketogenic diet to control your seizures? Open Original Shared Link

lovegrov Collaborator

Three in one small community? Wow. I was diagnosed 10 years ago and have never personally met anybody who has seizures from wheat, at least nobody that's told me they do. I've heard of a few online and had a friend who told me about somebody he met.

richard

weluvgators Explorer

I have only researched this for others, so not very well. But here are some links if you want to read more:

https://www.celiac.com/articles/116/1/Epilepsy-and-Celiac-Disease/Page1.html

Open Original Shared Link

Open Original Shared Link

That was what I found with a quick Google search. Hope it helps! I never considered it that unusual.


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



Celiac.com Sponsor (A8-M):



T.H. Community Regular

I never considered it that unusual.

I wonder, too, if we tend to meet more people with severe reactions when we have more severe issues with gluten ourselves. Everyone who is not having too much trouble probably doesn't go searching out answers and support as often, I imagine.

lovegrov Collaborator

Of course I'm not saying there's no link, just that its not real common. I've had contact with all sorts of folks with celiac.

richard

mushroom Proficient

In our highly symptomatic family only one member has ever been tested and the diagnosis was positive for celiac. Several members have passed on and can never be tested. One sister refuses to be tested. Another sister and I eat gluten free because we would not go back on gluten to be tested. My brother, who had massive digestive problems as a baby, failure to thrive (took Human Growth Hormone ultimately when he was a bit older), and had the family "digestive problems," developed a seizure disorder later in life that had the doctors diagnostically stumped and no medication controlled it. It was not severe but it did ultimately lead to his death from complications of a seizure. This is anecdotal only, but I would bet dollars to donuts that it was gluten-related.

jebby Enthusiast

There have actually been quite a few case reports in pediatric and neurologic medical journals over the last few years showing that celiac disease can lead to seizures. I will try to post some links later on. I do have a co-worker whose seizures went away once she was gluten-free, and she is now off all of her anti-epileptic medications.

jebby Enthusiast

References linking celiac disease with seizures/epilepsy (from pubmed.gov):

1. Pediatr Neurol. 2007 Mar;36(3):165-9. Increased prevalence of silent celiac disease among Greek epileptic children. Antigoni M, Xinias I, Theodouli P, Karatza E, Maria F, Panteliadis C, Spiroglou

K.

2. Mov Disord. 2009 Oct 30;24(14):2162-3. Gluten sensitivity presenting as myoclonic epilepsy with cerebellar syndrome. Sallem FS, Castro LM, Jorge C, Marchiori P, Barbosa E.

3. Neurologist. 2006 Nov;12(6):318-21. Epilepsy and celiac disease: favorable outcome with a gluten-free diet in a patient refractory to antiepileptic drugs. Canales P, Mery VP, Larrondo FJ, Bravo FL, Godoy J.

4. J Assoc Physicians India. 2010 Aug;58:512-5. Intractable seizures and metabolic bone disease secondary to celiac disease. Maniar VP, Yadav SS, Gokhale YA.

5. J Neurol Neurosurg Psychiatry. 2009 Jun;80(6):626-30. Epub 2009 Feb 24. Hippocampal sclerosis in refractory temporal lobe epilepsy is associated with gluten sensitivity. Peltola M, Kaukinen K, Dastidar P, Haimila K, Partanen J, Haapala AM, M√

Archived

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

  • 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. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

    2. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    3. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    4. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    5. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748

    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
×
×
  • 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.