Celiac Sprue - Gluten Intolerance and Epilepsy

[Dennis Begley]

I've had the good fortune to know that I have an intolerance to gluten a good portion of my life. It was an accident that I discovered what was causing my health issues. I did not learn it from a Doctor.

I mention it here for a couple of reasons. I've read all I can about it. In the process I recently learned that there are studies being done that show a direct relationship between people with certain "diseases" and their intolerance to gluten. Included in the list of "diseases" is epilepsy.

There is a blood test today to determine gluten intolerance. It only works if you are consuming gluten. In my case since I don't, the test won't show it. What has been determined is that a large portion of the people with those "diseases" also have gluten intolerance. And the positives in that group are substantially higher than one would see in the population as a whole.

The accepted thought was that celiac sprue was rare and found only in descendants of people from Northern Europe. That isn't the case. In fact, today it is assumed about 1 in 133 people have this health situation worldwide. A much higher number of people with Epilepsy have gluten intolerance.

What this says to me is that some cases of epilepsy are caused by a lack of nutrients. If you have gluten intolerance and continue to consume gluten, you will not digest your food properly. Your digestive system will be messed up at best. You will not get the nutrients from your food. Some people have extreme malnutrition. Others don't show obvious symptoms but are being affected just the same.

In my case, my symptoms eventually became real obvious. (Too many Dominos pizzas in college.) My mother on the other hand didn't even know she was suffering from it until I talked with her. She has minor symptoms. By the way this is inherited. If you have it so does one of your parents. It is not something you catch. Somewhere in time your ancestors learned to survive without eating grains. But if you have gluten intolerance you will always have it and it will impact your health by interfering with your ability to digest food IF you consume anything with gluten.

With that said, when people first discover they have been suffering from gluten intolerance, the healing process can take some time. Depending on how badly your body has reacted to your consumption of gluten, you could be in pretty bad shape healthwise. Your digestive system could be a real mess. Your health could have been sorely affected. You will get immediate relief when you stop eating gluten. But you need to be real sensitive to healing your body. And you need to bulk up on a high grade supplement (pharmaceutical grade ONLY) to give your body a better chance of healing and restoring your health. You have not been getting those vital nutrients from your diet.

I am a HUGE fan of taking high grade supplements regardless of your health issue of choice. And those supplements SHOULD NOT be based on the minimum RDA levels. The RDA was never meant to be a recommended amount. It was established so our soldiers in WWII would get at least the absolute minimums to keep the from developing scurvy and rickets. You want to have a healthy body take optimum amounts of vitamins and minerals. The RDA for Vitamin E is 40 units, the optimum amount is 400 units. You would have to eat 22 lbs of spinach to get 400 units IF you assume the spinach you can get from the produce in the factory farms even have any Vitamin E any more.

Feel free to ask me for more information on Celiac Sprue. I have a wealth of knowledge on that, supplements and health in general.

Oh by the way AVOID Aspartame and be very aware of the chemicals in your diet. You are in training for the rest of your life. Treat your body like a temple it has to last you a lifetime. You are what you eat, drink or put on the largest organ of your body, your skin.
Thanks
Dennis

 

[Dennis Begley]

List of Diseases caused by Gluten Intolerance

Reviews of celiac disease in the world's leading independent general medical journal Lancet lists the following known problems associated to gluten when celiac disease is not diagnosed:

Lancet 1997:349:1755
Lancet 2003:362:383

· Alopecia (abnormal hair loss)
· Anemia
· Mouth sores
· Arthritis
· Autoimmune diseases, glandular disorders or attacks on any organs are 10X more common in people with celiac
· Cancers (especially of the small bowel, lymphomas, esophageal)
· Dermatitis herpetiformis (a itchy skin rash)
· Elevated liver enzymes tests
· Gastroesophageal reflux (GERD)
· Gastrointestinal symptoms (abdominal discomfort, diarrhea, constipation)
· Infertility or miscarriage
· Irritable bowel syndrome
· Lactose intolerance
· Liver disease of unknown origin
· Malabsorption of nutrients & nutritional deficiency such as iron, folic acid, calcium, magnesium and fat soluble vitamins
· Neurological symptoms such as peripheral neuropathy, ataxia, epilepsy, cognitive dysfunction.
· Osteoporosis or osteopenia, check vitamin D level for malabsorption
· Psoriasis
Disease Linked to Celiac Disease:
People with celiac disease tend to have other autoimmune diseases. These diseases include epilepsy, thyroid disease, systemic lupus erythematosis, type 1 diabetes, vascular disease, rheumatoid arthritis and Sjogren’s syndrome. A diagnosis of multiple sclerosis has sometimes been given when in fact the person had celiac disease. Gluten may be the underlying causes of these autoimmune disorders.
Source: NewsTarget at newstarget.com /022122.html

 

[Bernard]

... I recently learned that there are studies being done that show a direct relationship between people with certain "diseases" and their intolerance to gluten. Included in the list of "diseases" is epilepsy.

There is a blood test today to determine gluten intolerance.

Do you have any references for the studies you mention? I'd like to read about them.

Also, do you know what the blood test is called?

 

[Dennis Begley]

The blood test is for antibodies to gluten. I am sorry I don't know what the specific test is called. I've never had it having discovered I had the issue before there was a blood test. Dr. Kenneth Fine has an excellent article at celiac.com where he discusses the blood test and celiac sprue
celiac.com /articles /759 /1 /Early-Diagnosis-of-Gluten-Sensitivity-Before-the-Villi-are-Gone-by-By-Kenneth-Fine-MD /Page1.html

I wrote an article for EONS.com that has a lot of information and some links to further research and documentation worth taking a look at.
eons.com /groups /topic /236112--b-Celiac-Sprue-More-widespread-than-imagined-b-

Here another article specifically about celiac sprue and epilepsy at celic.com
celiac.com /articles /116 /1 /Epilepsy-and-Celiac-Disease /Page1.html

It is real obvious to me that diet has a tremendous impact on our health. People who have allergies or intolerances to food will suffer from other aliments as their health deteriorates. And let's not forget all those healthy chemicals like Aspartame in our food chain. No wonder sickness is so widespread.

Hope this is of help.
Dennis

 

[Zoe]

Do you have any references for the studies you mention? I'd like to read about them.

Also, do you know what the blood test is called?

Hi Bernard,
Below are some links for starters. Long term effect of untreated gluten intolerance can be the formation of scars [seizure foci] in the brain. I can't help but wonder how many people have had initial success from brain surgery to remove their foci, only to see them recur if the underlying cause of gluten intolerance remained undiagnosed and untreated. The drugs might succeed at suppressing the seizures for a time, but at what cost to a person's long term health?

Seizures and Epilepsy: Hope Through Research: National Institute ...National Institute of Neurological Disorders and Stroke ...... an intolerance to wheat gluten in foods that can lead to seizures and other symptoms. ...
www.ninds.nih.gov/disorders/epilepsy/detail_epilepsy.htm - 163k - Cached - Similar pages - Note this

Updated Rates Of Common U.S. Neurological DisordersIn an up-to-date review of most of the common neurological disorders in the United States ... Sensitivity To Gluten May Result In Neurological Dysfunction; ...
www.sciencedaily.com/releases/2007/01/070129172536.htm - 46k - Cached - Similar pages - Note this

Epilepsy and Other Neurological Disorders in Coeliac Disease - Google Books Resultby Giuseppe Gobbi - 1997 - Medical
Brain atrophy and dementia, with or without epileptic seizures, ... The syndrome proved to be progressive and resistant to gluten-free diet in most of the ...
books.google.com/books?isbn=086196537X...

Neurological disorders and adult coeliac diseaseNeurological disorders associated with adult coeliac disease. Brain. 1966 Dec;89(4):683–722. [PubMed]; COURSIN DB. Convulsive seizures in infants with ...
www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1553079 - Similar pages - Note this

Acta Neurologica Scandinavica - Fulltext: Volume 111(3) March 2005 ...Some observations may indicate that gluten-free diet may control the seizures if started close to the onset of the epilepsy (16). ...
pt.wkhealth.com/pt/re/obes/fulltext.00000132-200503000-00011.htm

 

[Bernard]

The way the issue has been framed in this thread is that *all* cases of epilepsy are related to gluten intolerance. I do not believe that there is any study/research anywhere which can support such a blanket claim.

From people experiencing seizures from TBI to others that have tried GFCF / GARD diets without success, it is clear to me that gluten intolerance isn't a "magic bullet" explanation.

Don't get me wrong, I believe that this is an area that should be fully explored by anyone experiencing seizures, but at the same time, it is important to keep things in proper perspective.

 

[RobinN]

Inflammatory bowel disease (IBD) has been linked to an increased risk for subsequent neurological disorders, new research suggests.

http://renegadeneurologist.com/infl...inked-to-prevalence-of-neurological-disorder/

 

[Felicia Fessler]

Gluten Intolerance References

Hello, everyone. I happened upon your site in my quest to learn all I can about gluten intolerance relating to my own health concerns and because a friend of a friend has a daughter who has epilepsy and I would like to pass on whatever information I can.

I only learned about gluten intolerance two weeks ago. I was about to travel with a group of gals from my association and talk started regarding sharing rooms. I mentioned that I had some concern about sharing a room because of the problems/symptoms that I was experiencing.

One of the gals wrote to me and explained that she has celiac disease and that I have many of the same symptoms as she had and that perhaps I may be gluten intollerant. She gave me a great deal of information; some of which I have already begun to incorporate into my diet and have noticed a few changes in a short amount of time.

She told me to contact a doctor by the name of Kenneth Fine, M.D., that he has been the only doctor to diagnose her disorder. Dr. Fine has a not-for-profit company called Intestinal Health (intestininalhealth dot org). She now lives a gluten-free life and is extremely happy. Intestinal Health is a not-for-profit site. Dr. Fine has a number of tests that can be purchased through the Intestinal Health site or through his lab, Enterolab. I purchased my gluten complete test today, along with a test for soy, dairy, and yeast. I understand that at least some of his tests are stool tests and that the stool tests can detect intollerances and sensitivities that the blood tests miss and are still effective even if someone has already started or is on a gluten-free diet.

She started to teach me about eating gluten free. This is a very difficult feat to accompllish in today's world. I followed her lead. Some restaurants really catered to gluten free individuals and some did not know what you were talking about.

Another site I found that might be of interest is DietNet. This is a New Zealand site and has quite a bit of information and even mentions Dr. Fine.

I am not convinced the gluten intollerance is the be-all and end-all cause of disease, but it may be a good place to start. At least it seems to be for me.

 

[RobinN]

Hi Felicia - Welcome to CWE.
I have heard good things about Enterolab. Unfortunately my insurance is rather particular, so it makes test from other labs out of the question unless I want to pay for them myself. I made the choice to go gluten free with my daughter just because it seemed like the smart thing to do, under the circumstances.

Do you also suffer from seizures? I was not clear on this. If so has it helped in that regard? Or are you only using it for intestinal health. Which in an of itself is rather important. My son suffers, and is attempting to be gluten and casein free. Again no testing, but he knows when he has made a bad choice.

I agree we also have found a handful of restaurants that have a gluten free menu. Many are listed on the internet, and kitchens are willing to be accomodating. Best bet when just beginning is to make awesome meals at home, so no one misses the "junk".

I am glad that you have found something that works for you.
Many doctors have no idea about this disorder.

 

[Dennis Begley]

Celiac Sprue and Epilepsy

Bernard, If you are referring to my post I am not suggesting that intolerance to gluten is "the cause" of epilepsy. That would be an untrue statement. But what I did read is that compared to the general population, people diagnosed with epilepsy have a 500-600% higher rate of having an intolerance to gluten.

If we take a look at the statistics assuming 1 out of 133people (based on that study) have gluten intolerance, that is .7% of people have it. Let's round that to 1% for ease of mathematics. If you assume the US has 300 million people then @1% that is 3 million people have gluten intolerance. But they tested people with different diseases (including epilepsy) and discovered that the rate of those with gluten intolerance was 500-600% higher or a rate of 5-6%.

The conversation suggests something though, that many diseases are very well the result of poor nutrition. Celiac sprue causes the sufferer to not digest food properly and therefore not get nutrition from eating. It reinforces my belief that proper nutrition is a basis of good health. This may seem like a pretty common sense statement but it is not accepted widespread. It never ceases to surprise me when I talk to people about health to learn how few people are aware of or selective in what they eat, get their supplements over the counter, don't drink water, don't even consider the toxins they put on their skin or in their bodies, use Aspartame, and so on. Has your MD ever told you your different aliments could be a result lack of nutrition, vitamins and minerals? Or was it more of a conversation about what drug might work best?

Here are some links for more information:

This is probably the blood test you asked about:
"High prevalence of celiac disease in Brazilian blood donor volunteers based onscreening by IgA antitissue transglutaminase antibody. "

What is celiac disease?
American Academy of Family Physicians
www aafp.org/afp/20021215/2269ph.html
(This web site (AAFP) is for MD's not necessarily for the public. They do have a sister site for the public.)

Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You Think
DAVID A. NELSEN, JR., M.D., M.S., University of Arkansas for Medical Sciences, Little Rock, Arkansas
www aafp.org/afp/20021215/2259.html
(I would suggest this page. This is where I got those statistics.)

Detecting Celiac Disease in Your Patients
HAROLD T. PRUESSNER, M.D.,
University of Texas Medical School at Houston
www aafp.org/afp/980301ap/pruessn.html
(This is a good page to read.)

Epilepsy and Celiac Disease
November 1993. European Journal of Pediatrics. Authors Hilhorst MI. Brink M. Wauters EA. Houwen RH. Institution: Department of gastro-enterology, Wilhelmina Childrens Hospital, Utrecht, The Netherlands.
www celiac.com/articles/116/1/Epilepsy-and-Celiac-Disease/Page1.html

Celiac Sprue Association/United States of America, Inc. (CSA) ( I did a search for epilepsy on their page)
www csaceliacs.org/isearch/index.php?s=epilepsy
(You can see in the list that this has been researched for quite a few years.)

You'll have to convert those URL's due to the limit I have as a new member to post links on the forum.

 

[RobinN]

The presence of tTG antibodies is highly suggestive of CD, while AGA can be elevated also in cases of wheat allergy.

Serologic testing:
IgA antigliadin antibody
and
IgG antigliadin antibody
and
IgA antiendomysial antibody or
IgA antitransglutaminase antibody


This is what was recommended to me.

 

[Felicia Fessler]

Hi, Robin,

The tests were a bit expensive. I have an HMO and they will not pay for anything that was not referred by your GP. I did not feel my request would be received well by my GP. So I did not even bother with the insurance. Although, if I do have a positive test result, I do plan to bring that to the attention of my GP.

It is important for me to have the tests performed as I understand that that gluten intolerance may be an inherited condition. As such, I would like to pass this information on to my family. My husband and son will be more receptive to the idea if they see positive test results. I fear that my son is headed in the same road I have been. Perhaps I can head him off at the pass. My brother has two autistic boys and knowing about gluten sensitivities may be of special interest to them.

Do you also suffer from seizures?

No, I do not have epilepsy nor anyone in my family. I was simply doing a search for items related to gluten sensitivity when I happened upon this site. A friend of a friend has a daughter who has epilepsy which is why I stayed to review the site. I intend on passing this information along just in case they are not familiar with your site.

I have not purchased any gluten-free books yet. I saw a few on the internet that seemed promising. I am certain that my family will not even notice the change once I have fully implemented a gluten-free lifestyle. Restaurants -- now that will definitely be a challenge.

 

[RobinN]

Felicia - it is interesting how the two are interelated. I have a son with Aspergers and he suffers from intestinal issues. I was thinking that he should be tested and then it might be assured that others in my family are. Though I might have more possibility of insurance covering my daughter as I now am seeing help with her seizures. It would be nice to know if we do carry the gene. I have also read that it is inherited. However, you can be sensitive to the allergens and test negative. Also my daughter has been gluten and casein free for almost a year, so there again I have heard the test will be negative. I certainly don't want her to start eating like she use to. The knowledge and the absolute does help when explaining it to others. They don't just think you are making some loopy hippie dietary choices.

We didn't have epilepsy in our family either. I see that now as only a label for someone that has had two or more seizures. Someone with a low seizure threshold. Those with celiac disease could down the road if untreated, find that they are now being hit by unusual symptoms... seizures being a symptom.

I think I have found better websites than books. What books have you found?
I like www.stankurtz.com
He is a dad that found his way to recovering his son from autism. He began with diet and healing the intestinal tract. You might have heard his name as he has been touring with Jenny McCarthy. His videos are so inspiring. I get choked up.

There is also a great group: GFCFkids@Yahoo
which helps with choices, supplementation, DAN doctors, product choices.

I am not sure where you live but here in SoCa I see more and more restaurants with Gluten Free menus or are willing to accomodate the restricted menu.

 

[Felicia Fessler]

Robin,

However, you can be sensitive to the allergens and test negative. Also my daughter has been gluten and casein free for almost a year, so there again I have heard the test will be negative.

This is the exact reason that I chose to be tested through Enterolab because they test with stool and not blood. From what I have read, the blood test may be negative yet you may still be sensitive to the allergens. Also, if you are already eating gluten/casein free, the blood test may also be negative. I understand that the stool testing can determine sensitivities even if you are already eating gluten/casein free.

I have not read any books as of yet. I have been gathering my information from the Internet. I have not heard of Stan Kurtz. I will check out his site.

I am in Las Vegas. I have not yet started asking restaurants about gluten free menus. Most of my family is in So. Cal. with a few in No. Cal.

The more we learn the better prepared we will be to heal ourselves.

 

[RobinN]

Is there not a genetic test that proves once and for all that you carry the gene? And that it most likely would get passed down to your children and theirs as well?

I guess when I received this knowledge I had already started my daughter and I on this diet. I figured that a test wouldn't change the fact that we both needed to be eating with a better nutritional plan. Everything I have read has pointed me in the direction of , gluten free, casein free, soy free, corn free, low sugar choices.

 

[Dennis Begley]

Gluten Free Food

I've been dealing with gluten intolerance for 20+ years. True it is something that you have to get use to. No more rolls, pizza, cakes, pasta. At this time I have more than adjusted to it. That is the way it is. Plus I can find non-gluten alternatives for all those things. I am not sure I will ever get use to the way non-gluten flours do not raise.

But eating in restaurants is a whole different situation. It does very little good asking if a menu item contains gluten in a main stream restaurant. They don't know and usually don't care. Many times they bring the box out to me so that I can read it. What I have done is become aware of menu choices that obviously won't contain gluten. I got a surprise at Perkins sometime ago. Their Hollandaise sauce must have had gluten. So I order that Omelet with salsa instead now. American type menus are inflitrated with gluten. I rarely go there and if I do its for a chicken salad. Or I order the sandwich with out the bread. That always gets a strange look. I have also learned that certain cultures are not so wheat dependent. Asian restaurants are pretty safe. Watch out for egg rolls and breaded foods. Some use potato flour for breading. Ask. Indian restaurants are a good choice too. I also do not eat red meat so those restaurants fit well with both my limitations.

I live in Minneapolis. One would think you could find a lot of restaurants with gluten free awareness. Not the case. Yes, there are a handful. Better just to ask to see the ingredients and be aware of what is likely to contain gluten.

You should have been with me when I started asking if they use genetically modified tofu at the Asian restaurants we go to. That was funny. What is GMO? And they all brought out the container. Funny thing was they ALL used the same brand which is NOT GMO.
American tofu is GMO, eat only Japanese tofu. Japan bans GMO foods. Hmmm.. wonder why? Do they know something that is being hidden from us?

 

[RobinN]

There are a few restaurants out here on the west coast that have gluten free menus.
PG Changs is one of them.
Islands have gluten free fries (dedicated fryer)

Several major restaurant chains are also reaching out to the celiac community. Outback Steakhouse, P.F. Chang’s and other restaurant companies offer menus of gluten-free dishes, and more are joining them.

Last month, Mitchell’s Fish Market, a 13-restaurant chain based in Columbus, Ohio, introduced gluten-free menus, and six months ago Boston-based Legal Sea Foods did the same in its 31 restaurants. Richard Vellante, the executive chef for Legal Sea Foods, said his company adopted a gluten-free menu after hearing requests from customers and also noticing that competing restaurants were doing it.

http://www.msnbc.msn.com/id/9144025/

 

[RobinN]

Celiac disease can be at the root of neurological disorders that occur when the immune system becomes confused, and immune cells and antibodies attack certain parts of the brain. While this theory (called molecular mimicry) has a lot of evidence behind it, newer evidence suggests that the real damage is caused by activation of the brain’s special immune cells, called microglia. In celiac disease, when microglia are activated, they secrete a number of harmful products, such as free radicals, lipid peroxidation products, excitotoxins (glutamate, aspartate, and quinolinic acid), and inflammatory chemicals called cytokines and chemokines. These inflammatory chemicals seep into the brain and cause damage to the brain’s connections (dendrites and synapses) and can even kill brain cells. This is termed “bystander damage.”

Blaylock Wellness Report
May 2009
Vol 6 No 5

 

[Loudmouth]

I have some good gluten-free recipie books, must be american as measurements are in cups (had to go to lakeland to buy some when the books came!) They are: wheat-free, gluten-free cookbook for kids and busy adults by Connie Sarros (published by Mc Graw Hill) and the Best Gluten-Free family cookbook by Donna Washburn & Heather Butt (published by Robert Rose). Hope you find them helpful, the recipies I've tried have all turned out well. Also, for gluten-free flour that rises better than most, I use a brand called Dove's Farm gluten-free but I don't know if it's available in the US or if you could get it shipped?

 

[RobinN]

Here is their site: Dove's Farm

Most likely too expensive to ship to the US, but worth checking at stores like Whole Foods. There are other companies that sell online. I can't recommend one at the moment, as I get all my products at WF.

A friend recommended this site: Jule's