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New Here! celiac disease & Epilepsy?

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I have a two year old daughter who has Epilepsy and I always felt there was a deeper cause for her seizures. What started us on this dx was the fact that she kept getting sores on her butt that we were being told where staph infections. Well we did some allergy/intolerance testing and found out that she is allergic/intolerant to pretty much everything. Milk, soy, chicken, wheat, gluten, and food preservatives.

Her immuno doctor & gen ped (her neuro is on the same track too) is pretty sure that she has celiac disease and recommend that we discontinue wheat and glutens. I have to be tested and so dose her older sister as we could be asymtomatic for celiac disease (it dose run the family). We also found out that it could be the very cause of her seziures and the cure for them (hopefully)!

Thought I'd give a little intro!

Would be interested if there was any children or adults that have Epilepsy too! :)

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I was never diagnosed with epilepsy, but I do have a history of nocturnal myoclonus (uncontrollable movements) and the myoclonus that affects your hands. I was unable to write legibly.

Both have gone away within the last month and I am medicine free.

I also cleaned up my diet though and avoid dairy, eggs, soy, corn and the "crap" found in processed foods. I had digestive issues that forced me to address all food sensitivities. Those are gone too :D

Others here have had similar experiences. Hope this helps ... Marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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Hi I just read your post about your two year old. The first time my seizures were detected were about 44 years ago.  At the time it was diagnose as a seizure disorder. At that time you did not talk about. I always new there was something deeper going on... and I have done a great deal of research including coming across an article that research into food allergies was discontinued when anti seizure medication cam into play.  I had my DNA test and I have marker for celiac disease. I had some tests done and the GI doc said it is likely I have celiac disease.  I found your post when I was looking for an article posted on one of the celiac site on celiac disease and epilepsy and celiac disease.  I was printed in the Journal of Neurology.  I wish I had printed it.  I talked about patients who have been diagnosed with epilepsy don't have any gut damage but it effect the brain.  I started with DNA marker.  I found experimenting on my own eliminating gluten and dairy and recently corn has been a huge help. Keto diet has been known to help with seizures disorders. I kept a journal of what I ate and how it affected my health emotionally, physically. I was able to find my triggers and eliminate them. Alcohol, Stress, Lack of sleep, Sugar, Caffeine, gluten and dairy and corn.  As I got older, I also paid attention and tracking my dream and received a lot of answers.  Best wishes you your daughter and family.  At this point, with our food supply being tampered with I believe that DNA testing for Celiac Disease genes.  If you have the markers, it doesn't mean you have celiac disease but the possibility is there...  You would need to refer to you doctor, preferably one that has knowledge of Celiac Disease.  It took me 46 years to get diagnosed.

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I am a 52 yo mom who started having seizures in infancy, soon after beginning baby cereal. At 41, and many seizures later, I was finally dx'ed with celiac disease. Been completely gluten-free 10 1/2 years now, and my szs completely stopped about 9 mo after all gluten had been eliminated from my diet. I had a few "oopses" along the way but just marked 5 years sz-free in February!! :) Gluten is poison!!!! 

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4 hours ago, LIZARD66 said:

I am a 52 yo mom who started having seizures in infancy, soon after beginning baby cereal. At 41, and many seizures later, I was finally dx'ed with celiac disease. Been completely gluten-free 10 1/2 years now, and my szs completely stopped about 9 mo after all gluten had been eliminated from my diet. I had a few "oopses" along the way but just marked 5 years sz-free in February!! :) Gluten is poison!!!! 

Thanks so much for sharing!  ?


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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On 5/3/2019 at 1:55 AM, LIZARD66 said:

I am a 52 yo mom who started having seizures in infancy, soon after beginning baby cereal. At 41, and many seizures later, I was finally dx'ed with celiac disease. Been completely gluten-free 10 1/2 years now, and my szs completely stopped about 9 mo after all gluten had been eliminated from my diet. I had a few "oopses" along the way but just marked 5 years sz-free in February!! :) Gluten is poison!!!! 

SOOOOOOOO HAPPY for you, it is really tough to not know when we will collapse, but after so much time it must be quite freeing. 


2.5 pounds at birth, anemic and now iron deficient and hope for normal levels once villi return.

Diagnosed Celiac myself then confirmed by blood test and endoscopy July 2018. Colonoscopy=normal! 
Seizures from 8yrs old to 32, then nothing until 45 yrs old, seizure on dec 1st 2018. No brain damage on MRI.

DDD in several discs, and 2 herniated cervical discs, 20 years of BODY pain, but MUCH better since gluten-free & yoga.

Plantar Fasciitis and neuromas in feet, arthritis in big toes. Tendonitis in lower leg, tennis elbow. Pain while walking since mid 2016 with all these issues, but better with physio/ schockwave therapy.

ON a gluten-free, vegetarian, low fodmap, no more than 2 ingredients in processed food diet. Blepharitis since mid 2016, but getting better recently after allergy discoveries: Soy, Lactose, Apples, Celery, Hazlenuts, Almonds.

Mononucleosis at 15yrs old for 6 months

Dedicated to doing better, living an easier life full of fun, getting rid of intolerances, pain and doing research to help myself and to help others.

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