The Gluten Docs & Seizures-Good News!

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Zoe

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Hi folks,
Yes, there really is a group of “gluten doctors” who take the gluten\seizure connection seriously. A lot of us have figured out that the gluten free diet for celiacs may also work as a treatment for many folks with seizures, whether or not we are diagnosed with celiac disease. Today I found the site for the HealthNOW Medical Clinic in Sunnyvale,California. The doctors there recognize and treat seizure disorders that may be triggered by gluten sensitivity.
Dr. Vikki Petersen is the clinic director. She is a Clinical Nutritionist, Chiropractor, and has BA with a major in Molecular Biology. Dr. Petersen’s book on gluten sensitivity, “The Gluten Effect,” is due to be published this month.
Dr. Petersen gave me permission to post an excerpt from her book about the gluten\seizure connection. Links to her blog and the clinic web page follow the quote. You can contact them from the site. I’ll be first in line to get the book!
Zoe
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From the Blog:Seizures and Gluten sensitivity:
There are many causes of seizures, some understood better than others. I wanted to discuss the known association between seizures and gluten sensitivity. Please understand that I’m making no assumptions on the part of gluten being a causative agent in Jett’s condition. It’s just that seizures are such a tragic event for the patient as well as their families and any data I can provide that may help someone is something I’d like to do.

Below is some data from our upcoming book, The Gluten Effect.

It is quite amazing how many other parts of your health can be actively affected by gluten without the presence of any digestive symptoms. Of all the other organ systems of your body, the nervous system is the area most commonly affected by gluten after the gastrointestinal system. And, because our nervous system handles so many important functions, symptoms related to the nervous system are quite varied.

Your nervous system incorporates central structures including your brain, spinal cord, peripheral structures that are made up of sensory nerves (which sense pain, hot, cold, etc.), motor nerves (allowing you to perform movements) and nerves that regulate your involuntary systems (such as your heart beating, breathing while you sleep, intestinal movements, etc.). In individuals who are predisposed to gluten intolerance, gluten triggers an immune reaction that can interfere with the function of these structures.

Is Your Brain “On Fire”?

There is an abundance of evidence that inflammatory changes occur in the brain and nerves that cause a variety of symptoms. These can range from clumsiness to headaches to numbness to mood disorders to memory problems. It has been reported that only thirteen percent of patients with neurologic symptoms from gluten sensitivity may have digestive symptoms, and, often, neurological symptoms in gluten-sensitive patients precede digestive symptoms by months to years when they do occur. For this reason, it is important to keep gluten in mind as a root cause when dealing with disorders of the nervous system.

Remember, symptoms are the body’s way of getting your attention and directing you toward the site of a problem. If standard tests and exams cannot reveal a cause, dietary factors, toxins, lifestyle issues and other stresses deserve your attention.

This is where gluten should be a strong consideration. Because gluten affects so many people silently, and because most of those symptoms are not related to the digestive tract, it needs to be an early consideration when addressing many health care problems. Examining the different way in which gluten affects your nervous system is an excellent way to appreciate the scope with which gluten results in a variety of symptoms. It also highlights the importance of your diet in relationship to your health.

Gluten’s Relationship to Seizures

An excellent study was evaluated with 171 patients who suffered seizures and likewise had gluten sensitivity/celiac disease and calcifications in the brain. The overwhelming majority had gliadin antibodies in the spinal fluid (which circulates around the brain and spinal cord), and, likewise, most had the gene for having gluten sensitivity. Though many were unresponsive to treatment in general, it was notable that some did respond well to a gluten-free diet.

Why would gluten cause seizures? And are the calcium deposits in the brain related to gluten? Likely, the answer is “yes” to both questions. The presence of calcium deposits reflects chronic inflammation in some tissues. When inflammation has been present for years, calcium forms scars where the inflammation is located. Additionally, brain calcifications can form as a result of a folic acid (a B vitamin) deficiency, which may have been a contributing cause to the calcium deposits in these patients. Since gluten causes digestive malabsorption, then, folic acid may indeed have been low due to that.

The Mechanism Explained

Regardless, the root cause is most likely an immune system attack triggered by gluten sensitivity. Antibodies that are made to attack gluten get confused (due to a process known as cellular mimicry) and attack normal tissue that looks similar to gluten’s protein structure. In the brain, once the tissue is inflamed chronically, calcium can deposit and form a hardened scar.

Because of this scar, seizures develop and can be difficult to control with normal seizure medications. Seizures are basically short circuits of the brain. Suppose there were an electrical pole knocked down onto the ground. The electrical wires tore and were lying unprotected, sending out sparks from their broken ends. The electrical connection had been severed. Calcium deposits and scars in the brain essentially do the same thing. They send off electrical “sparks” that can develop into seizures if enough brain tissue becomes involved. Medication may help the sparks from spreading, but with gluten-related seizures, medicines work less well.

Case Study: A Lovely Girl Who Leaves Her Seizures Behind

T.S. is a beautiful, vibrant, nine-year-old girl who had begun having seizures at the age of four. She had undergone standard medical testing without a cause of her seizures being found. We first saw her when she was four years old. Not only did we find that she was sensitive to gluten, but that she also had many intestinal infections, a Candida yeast infection, and an essential fatty acid imbalance. The infections were greater in number in her than in most adults we treat, and some were very resistant to treatment, requiring two rounds of antibiotics instead of the usual one. She was treated with fatty acids in addition to a gluten-free diet.

T.S. has had absolutely no seizures for two years. She told her mother recently that she knows that the gluten created her seizures, and she is more than happy to keep it out of her diet. It is noteworthy that her mother, also diagnosed by us as gluten-sensitive, never ate much gluten until her twenties because as a child, she had sensed that it bothered her. But, recalling when she was in college and consumed a lot of gluten, she remembered suffering from “brain fog” during that time.

Evidence of these inflammatory changes can be seen in some gluten-sensitive patients via MRI. This was supported in another study examining patients with gluten sensitivity and seizures, which demonstrated deep-tissue inflammation in at least twenty percent of the children studied who had seizures. In addition, none of these seizure patients had folic acid deficiency, which suggests that gluten was the primary cause of their problem.

It’s Worth Giving Gluten-free a Try

While, thankfully, seizures are an uncommon manifestation of gluten sensitivity, it is extremely important to recognize it as a cause because the only effective treatment may be a gluten-free diet. If you never think of gluten as a cause, then you will never test for its presence. It would be miserable to have to suffer, or see someone else suffer, with seizures when a potential cure may exist with a simple dietary change.

Link to blog on Travolta’s son with excerpt from book about seizures and gluten sensitivity.
http://glutendoctors.blogspot.com/

Link to the HealthNOW Medical Clinic in Sunnyvale, CA
http://www.healthnowmedical.com/
 
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Kisses to the Information Junkie **
good job *
thanks
joan*
 
Zoe,
It is so nice knowing that there are doctors who take this gluten intolerance/epilepsy possibility seriously.
Back last summer, I decided to give the GARD a try. I broached it with my primary care doc, who asked me what the main tenants of it were. I outlined it briefly for him and gave him Dogtor J's website address. He is all for me being on this diet. He also wants me to learn to use breathing exercises and meditation to control stress and relax.

This website(blog)is now in my bookmarks so I can check it regularly.
Thank you.
 
great site thank you *

This is exactly what I thought : ) Only in a scientific way : )
thanks again,
joan*

http://www.healthnowmedical.com/info/gluten_reading.html

Gliadin is a protein found in many common foods. Grains such as wheat, rye, barley, spelt and kamut, all contain the protein gliadin. Other grains such as oats, amaranth and quinoa are also frequently problematic. The first few grains may be better known to you, but they are all in this category.

For those patients sensitive to gliadin, it causes the small intestine to slowly erode. What is the consequence of this? Well, your small intestine is responsible for absorbing all the nutrients in the food you eat. The only way that your cells get fed is because the small intestine efficiently breaks down and absorbs that food. If the small intestine is no longer able to provide that function, your ability to absorb the nutrition you consume goes down dramatically.
 
Joan,
Now that is a sobering thought about a small intestine unable to perform its job. Makes me want to take good care of myself.
 
TA DA

You are rockin' Zoe.
One more for the neuro's file
 
Joan,
Now that is a sobering thought about a small intestine unable to perform its job. Makes me want to take good care of myself.

Be nice to your innards and they'll look out for you!::woot:
 
Zoe,
It is so nice knowing that there are doctors who take this gluten intolerance/epilepsy possibility seriously.
Back last summer, I decided to give the GARD a try. I broached it with my primary care doc, who asked me what the main tenants of it were. I outlined it briefly for him and gave him Dogtor J's website address. He is all for me being on this diet. He also wants me to learn to use breathing exercises and meditation to control stress and relax.

This website(blog)is now in my bookmarks so I can check it regularly.
Thank you.

Hi Molly,
How are you doing on the GARD diet? It is so neat that your doctor backs you on it, give that doc a gold star! On the breathing; that is so crucial to learning how abort seizures or prevent them altogether. Just changing your breath rate changes your heart rate, metabolism, and thus, your seizure threshold. Around 1992 there was a really neat study done on teaching progressive relaxation to people with seizure disorders in Chicago. It was so successful the researchers recommended making the training a regular part of the treatment for seizure disorders.
Robert Fried, PhD, wrote a book, "Breathe Well, Be Well," which is a complete training course on breathing training for health issues. You will be amazed to learn how much control you can exercise over your body, mind, and emotions when you start learning breath control.
Fried did some fantastic studies in New York when neurofeedback was still experimental . These are the abstracts to those studies. They are online at PubMed:

Psychosom Med. 1984 Jul-Aug;46(4):315-31.
Behavioral control of intractable idiopathic seizures: I. Self-regulation of end-tidal carbon dioxide.Fried R, Rubin SR, Carlton RM, Fox MC.
Eleven women and seven men with moderate to severe chronic hyperventilation and idiopathic seizures refractory to therapeutic serum levels of anticonvulsant medication were given diaphragmatic respiration training with percent end-tidal CO2 biofeedback. The training had a rapid correcting effect on their respiration, making it comparable to that of 18 asymptomatic control subjects. Ten of the seizure-group subjects were in the study at least 7 months and following treatment, 8 showed EEG power spectrum "normalization", restoration of cardio-respiratory synchrony (RSA), and their seizure frequency and severity were significantly reduced.

PMID: 6435147 [PubMed - indexed for MEDLINE

: Ann N Y Acad Sci. 1990;602:67-96.
Effect of diaphragmatic respiration with end-tidal CO2 biofeedback on respiration, EEG, and seizure frequency in idiopathic epilepsy.Fried R, Fox MC, Carlton RM.
Hunter College, City University of New York, New York 10021.

Breathing rate (RR), end-tidal percent CO2, and EEG were obtained in three groups: psychiatric referral subjects presenting with anxiety, panic phobia, depression and migraine; a group of idiopathic seizure sufferers; and a group of asymptomatic controls. Virtually all the noncontrol subjects were found to show moderate to severe hyperventilation and the accompanying EEG dysrhythmia. The seizure group subjects were taught diaphragmatic respiration with end-tidal percent CO2 biofeedback. The training normalized their respiration and altered their EEGs and seizure frequency.

PMID: 2122789 [PubMed - indexed for MEDLINE

His book is written for the general reader and has a section on seizure disorders. Let us know how you are doing with the diet and with the breathing and relaxation training (don't make us hold our breath wondering! LOL).
 
TA DA

You are rockin' Zoe.
One more for the neuro's file

We'll rock on together Robin! Just wish you could have rocked up there with Rebecca; or that I still lived in Palo Alto and could go there myself for my current health snafus! :mrt:
 
Zoe,
Thanks for the info on Robert Fried's book. I'm going to look that one up on Amazon.

I need to learn a new way of breathing, all the time. After I went to my doc, I tried focusing on my breathing, but did it mostly when I had an aura. Then it went by the wayside. I think that breathing right needs to be made a habit, not just a "save" for when a seizure is about to kick in.

The GARD is being good to me. And I'm finding out just how much difference it is making in the way I feel. An example was yesterday morning. I went to Panera with hubby for breakfast. I had one of their egg souffles, and as a treat, I had a hot Chai tea latte. I started drinking it, and felt bad. Then it occurred to me that all it is is the Chai tea(I do ok with that)and steamed cow's milk! The little dairy products I use anymore is goat's milk; big difference for me. So anyway, stomach goes into "I'm sick" mode, and I'm out of it for the rest of the morning. Staying away from the cow's milk IS making a difference.
 
Just wish you could have rocked up there with Rebecca;

Certainly within driving distance.
I personally don't need the confirmation that it is the right thing to do. The research behind it makes perfect sense to me. It is great to have this to show non-believers.

Molly - I am so happy that you are seeing a response to it. I hope it proves to be your "answer".
 
Robin,
It seems that it's the answer for the time being. I just keep on keeping on. I will allow that my attitude towards my seizures is a lot better today than a year ago. That goes for hubby too. I think that we both have a sense that the seizures do not happen just willy-nilly, that I do have some control over them, and that I'm not on the mind-numbing drugs of several years ago. I have an interest in living again; nice change.
 
Robin,
It seems that it's the answer for the time being. I just keep on keeping on. I will allow that my attitude towards my seizures is a lot better today than a year ago. That goes for hubby too. I think that we both have a sense that the seizures do not happen just willy-nilly, that I do have some control over them, and that I'm not on the mind-numbing drugs of several years ago. I have an interest in living again; nice change.

Hi Molly,
I hope the diet keeps working for you too. Since the reaction to the gluten sensitivity is inflammatory, I'm thinking this is what was triggering not only seizures, but the emotionalism. I stay more calm and grounded on the diet, and just feel better in general. You'll see in Fried's book how the breathing patterns can be upset by food reactions and so can lower the seizure threshold. Over time, this reaction may become conditioned, like Pavlov's dog. But the conditioning can be undone, as with breath and relaxation training, along with diet and meditation too! Keep on keeping on. It took me more than a year to see some really solid change with my breathing on a daily basis. Many people do hyperventilate (overbreathe) about the time they have a seizure, so slowing down and normalizing the breathing can help correct this problem.
You are right, it isn't about just a technique to use when we feel a seizure coming on; it is as much about improving our breathing to further reduce the risk of having a seizure in the first place. As you learn what things will trigger a seizure, you should also be seeing how you can respond to that trigger and disable it. Below is a link to some online breathing and relaxation training. This is the type of training that can be so useful for managing seizures. Enjoy!
:mrt:

How To Relax Using Deep Breathing Techniques (Self Help ...

Video: We show you how to relax using deep breathing techniques. This quick and useful guide will teach you how to master the basics of ...
[ame="http://www.videojug.com/film/how-to-relax-using-deep-breathing-techniques"]How To Relax Using Deep Breathing Techniques (Office Life)[/ame]
 
Zoe,
Viewed the video. I liked the step approach. I had to smile at the "clear your mind" instruction since this is a big problem for me.
So, I have a question. How many times a day do I practice this? Is it the ultimate goal to breathe like this all the time? Or is it for when you perceive that you're tense?
 
Zoe,
Viewed the video. I liked the step approach. I had to smile at the "clear your mind" instruction since this is a big problem for me.
So, I have a question. How many times a day do I practice this? Is it the ultimate goal to breathe like this all the time? Or is it for when you perceive that you're tense?

Molly,
Deep diaphragmatic breathing, like in the film, you use when you want to relax yourself. However, you want to do the diaphragmatic breathing all the time, breathing from your diaphragm, so that it fills gently when you breathe in, along with your lungs. You get much more oxygen this way than if you tense up your stomach when you breath. Practice will help you develop, or re-develop a rhythm that can become your norm over time.
How often each day you practice the routine on the film is up to you.
 
Very interesting stuff. I found another article that grabbed my attention regarding gluten:

Am J Med 2004;116:312-317.

Italian researchers have concluded that as many as 73% of patients with untreated celiac disease have at least one brain region that is hypoperfused (the blood vessels are damaged), although the condition is rare in the non-celiac and treated celiac disease populations. Dr. Giovanni Addolorato, from the Catholic University in Rome, and colleagues looked at 15 untreated and 15 treated (on gluten-free diets) celiac disease patients and compared them with 27 healthy controls. They found that 11 (73%) of the untreated celiac disease patients exhibited hypoperfusion in at least one cerebral region, when only one treated patient and no controls had the problem. Additionally they found that in 7 of the 26 brain regions that they looked at, blood flow was significantly lower in untreated patients than in controls, and no blood flow differences were detected between the treated group and the control group.

According to the researchers the cause of the vascular brain damage in celiac disease is unclear at this point, but it may be related to the increased intestinal blood flow, and/or endothelial inflammation caused by the autoimmune disease, perhaps involving antigliadin antibodies or unidentified neurotoxic antibodies.


http://www.celiac.com/articles/775/1/Untreated-Celiacs-at-Increased-Risk-of-Cerebral-Hypoperfusion/Page1.html

Could this possibly be the cause of seizures in some people?
 
It may

very well be..........very interesting stuff you found there, Googly.......very, very interesting.......
 
Very interesting stuff. I found another article that grabbed my attention regarding gluten:

[I

http://www.celiac.com/articles/775/1/Untreated-Celiacs-at-Increased-Risk-of-Cerebral-Hypoperfusion/Page1.html

Could this possibly be the cauqse of seizures in some people?

That article is really important. This could be a trigger, or the cause of seizures in many people. There is already quite a lot of research on this published on PubMED. Diminished brain blood flow (hypoperfusion) is one of the triggers for seizures. Try a google search on "hypoperfusion" "seizures" and you'll find more information on this.
The chronic inflammation in the brain from untreated gluten sensitivity, or other causes, is thought to be causing the kind of scaring in the brain you mentioned.
What also is being recognized is that non-celiac gluten sensitivity may be much more common than celiac disease. The nonceliac gluten sensitivity as well as that of celiac disease can affect any part of your body. Some people with gluten sensitivity have no symptoms other than neurological, or digestive, or psychiatric. The way the sensitivity plays out is dependent upon what part of your system is most vulnerable to the effects of gluten sensitivity.
When my seizures were uncontrolled, after my brain surgery failed. I went to see a nutritionist, thinking I might have an allergy of some kind. She told me that with lactose intolerance, lactic acid can build up and cause the equivalent of an "epinephrine rush" (adreneline surge) which could trigger a seizure. Going off the milk helped tremendously. She next helped me go on a gluten free diet which helped a lot too.Then with the breathing, other techniques and the taurine, my seizures finally stopped. Keep in mind it isn't the brain damage alone "causing" seizures, but all the other factors that tip the balance, like lactose for some, and or gluten for others. Stress is now recognized as a trigger for seizures-only over the last 8-10 years. You might want to do a search on "stress" "hypoperfusion" "seizures" and see what turns up.
Gluten and lactose are used in many meds, which can affect those who are sensitive or allergic to the gluten and lactose. The pharmacist can look up the information and it is also on the web.
It is much easier to go on a gluten free diet now than it was when I started on it and there's lots of information on the web about it too.

The link below is to a gastroenterologist who recommends a trial gluten free diet for anyone who has a neurological disorder. I have been reading the other articles he wrote and am very impressed.

Gluten Free Diet Should Be Considered By Everyone with Neurological and Psychiatric Symptoms
 
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dang, I hope if I'm scarred it's not late for me if I start this diet now :( I just recently bought a cookbook with a bunch of good GF recipes in it and am ready to go gung ho. This is very intriguing since I've always noticed a very hard "pulse" in my head. Patience I suppose is something I must have when starting this diet.
 
They say the best test is 30 days gluten free. BUT thats not as easy as it seems. Gluten hidden in many things like toothpaste and meds.

Ive been watching this site lately... It seems good to me. Heal the gut (can take weeks to years) and then get back, one at a time to what works for you.

http://www.breakingtheviciouscycle.info/

They say its a geat diet for autism and brain fog.

joan*
 
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