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Epilepsy & Gluten Sensitivity

Epilepsy.  It affects 3 million Americans and generally we as treating neurologists do not know the cause.  Certainly in some cases the cause is readily identifiable, but most cases of epilepsy are what we call “idiopathic,” meaning we don’t understand the cause.  The go-to treatment for epilepsy is using anti-convulsant medication.  That said, let’s have a look at another perspective on what we should be thinking about in terms of this sometimes devastating situation.

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  • CommonSense

    Given that a ketogenic diet has been used to help kids with epilepsy for over 100 years, I’d think that diet would be one of the first solutions offered all epileptics before powerful medications or removing part of their brain.

    • TechnoTriticale

      re: I’d think that diet would be one of the first solutions offered all epileptics …

      That isn’t just bad for the business model, it triggers a cluster of immune reactions in the average MD, starting with that they think people (kids esp.) can’t manage the discipline of KD.

      For more on the modern MD mindset on this, see:
      “What’s Up With My Doctor?” on Wheat Free Forum
      http://wheatfreeforum.com/index.php/topic,275.0.html

    • Crystal Adams

      Absolutely Correct

  • Chanah Shapira-Stillman

    Surgery is extremely drastic, but the meds can be also. I suffered several seizures and a severe migraine as a child, and the prescription at the outset was meds for 5 years, dilantin and barbituates. Had depression and fatigue most of the time (ages 10-15). No seizures after going off meds, although I did get occasional migraines. Ultimately, it seems this was celiac-related as I finally got a celiac diagnosis 2 years ago. A gluten-free diet would have saved me from those dark years. Any individual or parent who feels the diet is too hard too try should consider the downside of medications, and read up on the potential side effects.

  • Laura

    I have a patient who also took anti-seizure meds as a child. 30 years later she is put on a statin and now we are dealing with liver damage. Obviously both categories of drugs have dangerous side effects.

  • Amar

    Dear Dr Perlmutter,
    I have been on a gluten-free diet for close to a year and I wanted to get a cyrex array 3 test for gluten sensitivity. I was wondering if you would know how much gluten how long I need to reintroduce gluten into my diet to avoid a false negative
    Thanks

    • Carol

      Some recommendations.s are at least 2 servings of gluten for 4-6 weeks before a gluten test. Some doctors say 2-3 weeks, but come up with negatives that are suspected to be false.

  • Mark Turvey

    My son ( from 3yo to 5yo) had between 5 – 12 seizures per day which were diagnosed as Rolandic seizures after an EEG. We tried pretty much all the epilepsy meds but, even if they worked, they only did so for a short time. None of the neurologists we saw ever mentioned diet, only drugs or surgery. His seizures stopped around 3 days after going gluten free and have not returned in the 18 months since we did this. Thank you for making more people aware of this Dr Perlmutter

    • Liam’s Mom

      My son has doose syndrome. We have tried four anticonvulsants and none have worked. He’s on ketogenic diet and I have found that some of his food has gluten in it. Was there a specific menu you went with for your son?

      • Carol

        Try the Paleo.AIP diet. When stabilized, slowly add things back until you find the triggers vs safe foods.

        • Liam’s Mom

          I have read about paleo, but only minimally. I will do more research. Thanks 🙂

      • Mark Turvey

        No, just strictly gluten free. Has ketogenic helped? Sorry about the late reply, my gmail account was hijacked by a spammer so I have not been getting comment update emails. I will make sure to check in regularly now. markturvey(at)yahoo(dot)com(dot)au

        • Liam’s Mom

          No problem :). The diet has helped but he’s still having seizures. He just got out of the hospital yesterday. The grand mals and myoclonic seizures were increasing. He is fighting a cold as well, but even when he’s well he has seizures. The longest he has went seizure free is eight days. He has been on the diet since November 2014. I have read the benefits of going gluten free for epileptics. Most of the foods on the ketogenic is gluten free, but not all. I was curious what your son would eat. We have asked about the gluten to our dietitian; however, it isn’t something that is being considered at this time.

  • CHRISTINE

    SUGAR IS GLUTEN FREE, BUT IT IS STILL A POISON IN ALCOHOL THAT NEEDS TO BE ELIMINATED. JJ VIRGIN SAYS TO EAT PRACTICALLY NO SUGAR. WHITE RICE IS NOT GLUTEN ALSO. I STILL THINK THE PHASE 1 DIET OF DOUG KAUFMANN IS FAR BETTER THAN TO JUST GIVE UP GLUTEN

  • Bea from Texas

    I had idiopathic nocturnal grand mal seizures for 20 yrs, similar to my father. I also had rashes on the inside in the elbows, back of knees, tops of my feet and sides of neck, the nails on my small toes were black, arthritis in the neck, infertility, had recently been diagnosed with GI Reflux, asthma, and on my way to being diagnosed with IBS. I was treated with dilantin and then neurontin, but still had the occassional seizure. I can credit my dental bridge and all my chipped teeth to epilepsy. My neurologist was skeptical, but I have been gluten free for 8 yrs now, off anticonvulsants for 3 yrs and seizure free! I am too old to conceive now and I still have asthma, but life is so much better. It’s hard to believe the majority of my health issues were immulogic, due to a protein called “gluten”. I am an advocate for gluten free for everyone and have bettered many lives because of it. Dr. Perlmutter, please continue to spread this knowledge across the medical community.

    • Jane

      I started with petit mal at about 9 or 10 and started with grand mal at 11. I am now almost 60 and still take anticonvulsants. I learnt to drive at 48. I also had childhood arthritis which caused my knees to collapse and wear away from the age of 11. I now have new knees. I have bad arthritis in my hands and up to the point I stopped eating gluten & dairy I had 7 years of very painful fibromyalgia. This has gone completely, but I am too nervous to stop my anticonvulsants.

  • rev21

    Dr. Perlmutter: Is it OK to eat coconut butter instead or in addition to coconut oil? Or does coconut butter have too much natural sugar from the coconut meat? Thank you.

  • Pingback: New Study Validates Ketogenic Diet for Epilepsy Treatment in Adults | David Perlmutter M.D.()

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  • Julie Clark

    Dr. Perlmutter,

    Have you known of any cases of Todds Paralysis to be decreased as a benefit of a Gluten Free Diet?

  • Fiona

    To consider removing a part of someones brain before trying them on a gluten-free diet seems really crazy to me. I didn’t have epilepsy but when I stopped eating gluten it helped my acne clear up significantly and helped my energy levels a lot and my mood too.

  • Bill Whittemore

    I’m 57 years old. I’ve had epilepsy for my whole life. Including now, I never have been able to drive a car, for medical reasons. A couple year ago, I started to see Gluten-Free signs in the grocery store. Not knowing what that meant until my doing some research, I never wanted to buy that. I started to buy some Gluten-Free products about 5 months ago. I’m starting to notice better changes in how I’m feeling. I just don’t want to over do it.

  • Andrew

    My neurologist kind of laughed me off today when I asked if he could run a GS test, and said he wouldn’t even know how to interpret it. Which doctors, and what path would be best for getting tested by someone helpful?

  • Darn it

    I wish I had known this way back when my dog started having seizures, out of the blue. She loved pizza crusts.
    I would have been way more attentive to her diet, instead of just doing what the vet suggested (prescribing phenobarbital, which destroyed her liver after 3 years).

    Don’t eat it, don’t feed it to your kids, don’t feed it to your pets.

  • KT

    I’m going gluten-free tomorrow…. At first for weight/other health reasons. But I have also been dealing with seizures since I was 11 years old and had Reye’s Syndrome. Perhaps going gluten-free will also help tame/stop seizure activity, too!! Drugs haven’t been able to help and doctors just want to operate/over-medicate…..

    • David Perlmutter

      Wishing you health on this journey KT.

      • KT

        Hi Dr, Thanks and Happy New Year! I have been gluten-free but still am experiencing breakthrough auras. Had a grand mal in August. Not cool. I am back on Keppra, but still having auras. I need to be seizure free. I am going to try a gluten-free, ketogenic diet for a month. I’ll post back with my results. I def feel better without the gluten so that’s a plus! Take care!

  • Fabian Sophia

    Hello, my name is Sophia I have just been told I am having
    seizures; my kind of seizures is so different from all the others I have
    heard about. Three years ago I went to my doctor with dizziness,
    weakness, and unstable walking at times. I had an MRI done, they found
    nothing, so I was put on Prozac which I refused to take, after three
    years I went to another doctor who did an EEG right after one of those
    dizzy spells and found out that I was having seizures. He told me I had
    them at first on the left side of my front lob now it is on both sides.
    He started me out on Dilantin 300mg, but it was making me very sick, so
    now I’m starting on divalproex er 500mg. If anyone out there is having
    dizzy spells, make your doctor listen to you, have an EEG done within
    24hours, But after all procedure done. I was still an epileptic
    patient, who have completely lose hope. As the problem is always
    embarrassing and disturbing. While surfing the internet one fateful
    day, I saw woman’s comment about how medicine has complete cure her only
    son and prompted me into going through the testimony to know the detail
    and that was when I learned about Doctor Ethan.
    I contacted
    him with some info and he ordered a dispatch down to my country through
    delivery service, I took his medicine for couple of months, though
    hesitantly, considering the fact that I have done a lot of procedure.
    Over a year now, I have not show any symptoms of seizure and I believe I am cure if you want to contact him at this email doctor.ethan@yahoo.com

  • Elvira Rasuk

    My 6-year-old girl was diagnosed with frontal epileptic discharges. She has had episodes with fever. The doctor, ,prescribed kepra. Does anyone know of a pediatric doctor in Puerto Rico with the same perspective as Dr. Perlmutter? Also, I changed her diet to the grain free diet, but I don’t know if this is the best diet for her due to her condition, or if I should consider another one? If the grain free diet is her best option, should I give her the medication at the same time that she follows this diet? Or should I wait to see if the diet helps without the need of medication? Please advise. Thank you for your time, and for making the difference all around the world.

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