Staff Telling Me That Seizures Are Not Caused By Gluten!

[TammyK]

Hello to All,

The appoint. is finally here, the day after tomorrow. My 11 YO dd has to stay up most of the night and be admitted into hospital for extended EEG. When the hospital called this morning to cover details, she was asking lots of questions. I had to tell her what we could do to trigger several episodes, (besides sleep-deprivation) which was to feed her gluten. The staff person followed with, "the fact that she has a seizure after eating gluten is a total coincedence, seizures are not caused by gluten!" I followed with, "she was having them 5 and 6 times a day and once I eliminated gluten tehy practically disappeared. That one seizure is always caused by an accidental food that contains hidden gluten". I'm sure she thinks we are idiots now.

If anyone prays out there, we'd appreciate some support in this way. For two days and one night she will have to be eating gluten while her brain activity will be monitored and her video-taped. This will not be fun for any of us, especially not her. I'm thankful there will be four people on duty the whole time. I'm hoping her case scenerio will cause some doubt in this highly recognized science university children's neurologoy department and medical staff. My husband is planning on taking proof from medical journals to present to the doctor. (can you recommend some)?

Now I know many of you would never choose to do this. Once she is home, it is gluten-free all way, forever. For now I'm doing what I'm told because I feel that I'm unable to handle this on my own. If for whatever reason she keeps having seizures despite her diet, (which is exaclty what is happening right now) I will be established with a doctor that can treat her. I'm always worried and stressed and waiting for the next episode. I hate medication and prefer lifestyle but I also hate seizures.

[gfpaperdoll]

I guess you know that the doctors are wrong on that. Seizures are a big problem for some when eating gluten.

Yours is not the first thread on here about that. Check the Babys & children thread on here, I am sure it was not too long ago that this came up.

Also, goggle celiac & seizures you will get a lot of hits.

You can also check the Gluten Free and Beyond Forum, those people are the same ones that post to the Brain Talk Gluten Intolerance/Celiac forum. They have some links etc. & several members that are seizure free on gluten free diet. One lady in France gets a seizure from farm raised salmon, because of the grains that the salmon are fed. Wild salmon she has no problem with...

actually, I think I have recently read about seizures & the gluten free diet, but cannot remember where. Google is our friend... might also check the autism threads...

We all know where you are coming from with the doctors etc. I hope everything goes okay.

Just demand that they give her excellent care & stay with her at all times to make sure they are not messing up. Wrong meds are all toooooooooo common. check & question everything. Okay to be nice while being a pain

[Jestgar]

J Immunol. 2007 May 15;178(10):6590-5.

eliac disease is an immune-mediated disorder triggered by ingestion of wheat gliadin and related proteins in genetically susceptible individuals. In addition to the characteristic enteropathy, celiac disease is associated with various extraintestinal manifestations, including neurologic complications such as neuropathy, ataxia, seizures, and neurobehavioral changes. The cause of the neurologic manifestations is unknown, but autoimmunity resulting from molecular mimicry between gliadin and nervous system proteins has been proposed to play a role. In this study, we sought to investigate the immune reactivity of the anti-gliadin Ab response toward neural proteins. We characterized the binding of affinity-purified anti-gliadin Abs from immunized animals to brain proteins by one- and two-dimensional gel electrophoresis, immunoblotting, and peptide mass mapping. The major immunoreactive protein was identified as synapsin I. Anti-gliadin Abs from patients with celiac disease also bound to the protein. Such cross-reactivity may provide clues into the pathogenic mechanism of the neurologic deficits that are associated with gluten sensitivity.

Neurologist. 2006 Nov;12(6):318-21

BACKGROUND: There is a well-documented relationship between epilepsy and celiac disease, including a syndrome characterized by epilepsy, occipital calcifications, and celiac disease. REVIEW SUMMARY: We report the case of a 23-year-old woman with an 11-year history of refractory epileptic seizures and newly diagnosed biopsy-proven celiac disease with increased antiendomysium immunoglobulin A antibodies. The patient showed a dramatic improvement after starting a gluten-free diet. CONCLUSION: This case emphasizes the need to include celiac disease in the differential diagnosis when investigating the etiology of epilepsy in refractory patients.

Arq Neuropsiquiatr. 2004 Dec;62(4):969-72. Epub 2004 Dec 15

Celiac disease (celiac disease/ Nontropicalsprue, gluten-sensitive enteropathy) is a malabsortive condition in which an allergic reaction to the cereal grain-protein gluten (present in wheat, rye and barley) causes small intestine mucosal injury. The onset is in the first four decades of life, with a female to male ratio of 2:1. It may be associated with a wide spectrum of neurological manifestations including cerebellar ataxia, epileptic seizures, dementia, neuropathy, myopathy and multifocal leucoencephalopathy. We report three patients with neurological manifestations related with celiac disease: one with cerebellar ataxia, one with epilepsy and one with cognitive impairment. The diagnosis of celiac disease was confirmed by serologic tests (antiendomysial and antigliadin antibodies) and biopsy of the small intestine. In two patients the neurological symptoms preceded the gastrointestinal abnormalities and in all of them gluten restriction failed to improve the neurological disability. CONCLUSION: celiac disease should be ruled out in the differential diagnosis of neurological dysfunction of unknown cause, including ataxia, epilepsy and dementia. A gluten free diet, the mainstay of treatment, failed to improve the neurological disability

Pediatr Med Chir. 2001 Mar-Apr;23(2):133-5.

Coeliac disease (celiac disease) is a gluten dependent enteropathy with genetic predisposition. The introduction of the gluten with the diet leads to a damage of the intestinal mucosa losing the ability of absorption. Together with the "classic forms", in wich the intestinal symptomatology is prevalent, there are atypical forms, with unusual clinical presentation and silent forms with no clinical symptoms. The neurologic symptoms are not frequent and regard seizures, headache, ataxia and psychiatric problems. We report on a patient with headache since 3 years of age in which the headache the only manifestation of celiac disease. The diagnosis of celiac disease was made at 11 years, when he came at our observation for episodes of headache. Also the older sister is found affected by celiac disease. After three months of gluten free diet, it was obtained the complete resolution of the headache. Also if the pathogenesis of the headache in patient with celiac disease is unknown we think that a autoimmune, vascular or blood flow mechanism could be ipotizeable

Pediatrics. 2001 Aug;108(2):E21

OBJECTIVE: Celiac disease (celiac disease), or gluten sensitivity, is considered to be a state of heightened immunologic responsiveness to ingested gluten proteins in genetically predisposed individuals. The gastrointestinal manifestation suggests a severe enteropathy of the small intestine with malabsorption, steatorrhea, and weight loss because of a deranged mucosal immune response. Neurologic complications occur, especially epilepsy, possibly associated with occipital calcifications or folate deficiency and cerebellar ataxia. There have been reports of brain white-matter lesions as an extraintestinal manifestation in Crohn disease and ulcerative colitis but not in celiac disease. METHODS: In this study, 75 diet-treated mainly pediatric patients with biopsy-proven celiac disease underwent prospectively clinical neurologic examinations, laboratory investigations, electroencephalography, computed tomography, and magnetic resonance imaging. The age range was 2.8 to 24.2 years with a mean of 11.6 years. The mean period of gluten exposure was 2.4 years. RESULTS: Ten patients had neurologic findings such as febrile seizures, single generalized seizures, mild ataxia, and muscular hypotonia with retarded motor development. No folate deficiency was found. The hippocampal regions showed no abnormalities. Computed tomography did not reveal any cerebral calcifications, but magnetic resonance imaging detected unilateral and bilateral T2-hyperintensive white-matter lesions in 15 patients (20%). There was no correlation between these lesions and dietary compliance or neurologic or electroencephalographic abnormalities. The mean gluten exposure time of these patients was slightly increased (not significant). CONCLUSIONS: Focal white-matter lesions in the brain may represent an extraintestinal manifestation of celiac disease. They may be ischemic in origin as a result of a vasculitis or caused by inflammatory demyelination. They seem to be more typical of pediatric celiac disease than cerebral calcifications. Their prognostic value is unclear and needs to be elucidated in additional studies. celiac disease should be suggested as a differential diagnosis in children with unclear white-matter lesions even without intestinal symptoms

Ital J Neurol Sci. 1995 Apr;16(3):187-91

We describe the case of a 25 year old woman who has been clinically and instrumentally examined over a period of about 20 years. A diagnosis of celiac disease was made when she was four years old and, ten years later, CAT revealed the presence of bilateral cerebral calcifications. The partial occipital seizures were controlled by adopting a gluten-free diet, which is still being followed four years after the discontinuation of anti-epileptic treatment.

Am J Gastroenterol. 1988 Sep;83(9):992-4

We describe two young adult patients with seizures and cerebral calcifications since childhood, diagnosed as Sturge Weber syndrome, who also had gluten enteropathy. Although the calcifications were located in regions similar to calcifications of Sturge Weber cases, many of the features of the syndrome were absent, and this diagnosis seems improbable. Whereas a coincidental involvement cannot be excluded, attention is drawn to this association between celiac disease and seizures with intracranial calcifications mimicking a Sturge Weber syndrome. After a gluten-free diet, antiepileptic therapy could be reduced in our patients