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    Do you have questions about celiac disease or the gluten-free diet?

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A good friend of mine has a child who has had seizure his whole life. He's not 3.5 and also has some developmental delays. I don't know all the details, but I know they have been searching for answers for so long and praying so hard for him to be cured. It's been a tough road for them. I've seen a lot of you post about seizures as a symptom. I'm looking for some info to share with my friend that could help her in researching celiac as a possibility. Thankfully, our family hasn't had to deal with this as a symptom, so my knowledge is limited. Thanks in advance for your replies!

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Guest nini

you can tell your friend that when I was 14 I was dx'ed with "non specific seizure disorder" and was prescribed dilantin for a while, after my daughter was born, I started having seizures on a daily basis and still could find no cause, after going gluten free the seizures stopped and only reappear when I've been accidentally glutenend.

my dad, on the other hand, had full blown Epilepsy. He outgrew it as an adult, but he also does well on the gluten-free diet (when he sticks to it)

my daughter and I are the only confirmed Celiacs in the family.

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I had Pm'd this to Nisla, but this is the description of Alex's symptoms that my friend e-mailed me:

"Alex has been diagnosed with PVL (perio ventricular lugamalasia

(spelling

unsure)). He has secondary generalized epilepsy associated with

developmental delay. His EEG pattern appears similar to that of Lennox

Gaustaut (spelling unsure) Syndrome in that the background of the EEG

is

mildly slow but he doesn't match that diagnosis perfectly so his neuro

doesn't feel comfortable with putting him in that bucket so she just

keeps

saying "secondary generalized epilepsy with delay". His primary

seizure

type is petit-mal seizures (absence and myoclonic jerks) with some gran

mals. The gran mals and myoclonic jerks are for the most part

controlled by

medication and diet (except during fever and illness) but the absence

petit-mal seizures still exist on a daily basis despite our best

efforts.

They are much fewer (maybe 100 per day versus the innumerable ones

before

the diet) and certainly more benign in nature (his safety is not as at

risk

as it was before - no helmet yeah!). I wouldn't say that his seizures

are

the primary reason for the delay though. I believe his delay is caused

by

whatever is causing the seizures - most likely the brain damage. He is

progressing which is a very positive thing. He learns new words and he

is

achieving some milestones in the physical realm as well as the

occupational

realm. This is good because as long as he is progressing there is hope

that

he will at least somewhat catch up. We don't know if he will ever be

caught

up to peers and will most likely be special ed his whole life but we

can

pray and hope. Alex has been classified as mildly mentally retarded by

the

education system. A label that I cringe when I hear but totally

understand

why they have to do it. This isn't a label he has to be stuck with

though.

As he develops speech he can better show how much he really knows. His

lack

of communication skills make it hard to do a true assessment especially

of

his cognitive abilities. Alex's expressive speech is way behind but

his

speech recognition is only slightly behind. He understands and obeys

commands and seems to understand way more than he can express to us.

This

usually ends in frustration for him which is heart breaking in and of

itself. He wants to express and cannot always get his requests

acknowledged

by us."

Like I told Nisla, most of this is a foreign language to me, but for those who have siezures, you will probably understand better. Thanks for helping!

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I asked b/c I think the seizures associates with calification in the brain are more common in Celiacs. Do you have a copy of Dangerous Grains? There is some good info in their on Celiac/gluten relationship to seizures. I've pasted some info and links below. I did some research for a friend whose daughter was having seizures--with no solutions. But can't find where I put it all!

http://brain.hastypastry.net/forums/showthread.php?t=2139

Blood tests for gluten sensitivity antibodies were performed on 783 patients referred for seizures. In 36 patients who also had clinically evident celiac disease, no further seizures were noted after treatment with a gluten-free diet. In a second group of 9 patients, celiac disease was not recognized because of mild or absent symptoms, but the diagnosis was confirmed by jejunal biopsy. [Lancet 1992;340: pp.439-43]

Seizures. There have been numerous reports of children and adults with seizures associated with celiac disease. Studies have provided some insight into this condition. The Institute of Clinical Pediatrics24 evaluated 783 patients referred because of seizures. Serology tests for antigliadin and antiendomysial antibodies were performed in all of these patients. In a cohort of 36 patients who also had clinically evident celiac disease, no further seizures were noted after treatment with a gluten-free diet. In a second group of nine patients, celiac disease was not recognized because of mild or absent symptoms, but the diagnosis was confirmed by jejunal biopsy. Three of these nine patients showed occipital calcifications on brain imaging (Figure 9).

In another study,25 31 patients with epilepsy and cerebral calcifications (a reported complication of celiac disease) underwent blood screening and endoscopy. Of these patients, 24 were diagnosed with celiac disease. The authors of this study found that a gluten-free diet was only beneficial in affecting the clinical course of epilepsy if the diet started soon after the onset of the seizures.

A child with intractable seizures, occipital calcifications and folate deficiency due to celiac disease underwent therapeutic resection of the right occipital lobe and remained seizure-free for four years.26 Pathologic examination of brain tissue revealed a cortical vascular abnormality with patchy pial angiomatosis, fibrosed veins and large, jagged microcalcifications. These abnormalities were similar, although not identical, to those found in patients with Sturge-Weber syndrome.

A review27 of 39 published articles on patients with celiac disease, cerebral calcifications and epilepsy concluded that the exact pathogenic process was unknown. Chronic folic acid deficiency in untreated patients was considered a possible explanation. Mental impairment was extremely variable.

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Jen,

Thanks so much. I just noticed that you are in Indianapolis. So is my friend!!!! It's a small world!

I asked b/c I think the seizures associates with calification in the brain are more common in Celiacs. Do you have a copy of Dangerous Grains? There is some good info in their on Celiac/gluten relationship to seizures. I've pasted some info and links below. I did some research for a friend whose daughter was having seizures--with no solutions. But can't find where I put it all!

http://brain.hastypastry.net/forums/showthread.php?t=2139

Blood tests for gluten sensitivity antibodies were performed on 783 patients referred for seizures. In 36 patients who also had clinically evident celiac disease, no further seizures were noted after treatment with a gluten-free diet. In a second group of 9 patients, celiac disease was not recognized because of mild or absent symptoms, but the diagnosis was confirmed by jejunal biopsy. [Lancet 1992;340: pp.439-43]

Seizures. There have been numerous reports of children and adults with seizures associated with celiac disease. Studies have provided some insight into this condition. The Institute of Clinical Pediatrics24 evaluated 783 patients referred because of seizures. Serology tests for antigliadin and antiendomysial antibodies were performed in all of these patients. In a cohort of 36 patients who also had clinically evident celiac disease, no further seizures were noted after treatment with a gluten-free diet. In a second group of nine patients, celiac disease was not recognized because of mild or absent symptoms, but the diagnosis was confirmed by jejunal biopsy. Three of these nine patients showed occipital calcifications on brain imaging (Figure 9).

In another study,25 31 patients with epilepsy and cerebral calcifications (a reported complication of celiac disease) underwent blood screening and endoscopy. Of these patients, 24 were diagnosed with celiac disease. The authors of this study found that a gluten-free diet was only beneficial in affecting the clinical course of epilepsy if the diet started soon after the onset of the seizures.

A child with intractable seizures, occipital calcifications and folate deficiency due to celiac disease underwent therapeutic resection of the right occipital lobe and remained seizure-free for four years.26 Pathologic examination of brain tissue revealed a cortical vascular abnormality with patchy pial angiomatosis, fibrosed veins and large, jagged microcalcifications. These abnormalities were similar, although not identical, to those found in patients with Sturge-Weber syndrome.

A review27 of 39 published articles on patients with celiac disease, cerebral calcifications and epilepsy concluded that the exact pathogenic process was unknown. Chronic folic acid deficiency in untreated patients was considered a possible explanation. Mental impairment was extremely variable.

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That's cool! If you ever need to connect her with a local, let me know. We have a great group of Celiacs here in Indy...

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A good friend of mine has a child who has had seizure his whole life. He's not 3.5 and also has some developmental delays. I don't know all the details, but I know they have been searching for answers for so long and praying so hard for him to be cured. It's been a tough road for them. I've seen a lot of you post about seizures as a symptom. I'm looking for some info to share with my friend that could help her in researching celiac as a possibility. Thankfully, our family hasn't had to deal with this as a symptom, so my knowledge is limited. Thanks in advance for your replies!

I am also a celiac that suffers from seizure.

What are the seizure like? (I was unable to read one of the posts the words ran off the page. Sorry.)

How is your friend baby since your posting?

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My friend has decided to try the diet. Alex is already on the ketogenic diet, so it's not a far stretch to the gluten-free one. I hope it helps. I don't know why you couldn't read the post. Sorry!

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