Diet alleviating other neuro symptoms?

[wcmike]

I'm curious if anyone who has tried the gluten-free diet has noticed improvement in neurological symptoms other than seizure activity.

I've seen reduction or elimination of a number of symptoms since going GF: yawning, memory & concentration problems, an intense need to sleep about an hour after eating, difficulty falling asleep at night, waking up tired, afternoon headaches, occasional loss of balance. These are the 'normal' sounding things. Then there are the odd ones: I used to sometimes get a feeling of floating as I would drift off to sleep (this probably contributed to the dreams - also absent now - of flying); occasionally I'd get a sensation that a hand, arm, or foot was swollen, the skin feeling tight and puffy, but with no actual change in appearance; and muscle twitches as I was beginning to fall asleep.

I'm sure it's gluten that is/was the cause: I originally tracked the onset of some of the symptoms quite closely to increases in blood sugar, but experimentation showed I could consume sugar water alone and get blood sugar rises & falls without any of the above symptoms. Looking back at the food diary, the other consistent food (or ingredient in food) was wheat. Further testing confirmed that wheat causes the whole range of symptoms

So now I'm wondering just how isolated - or common - my experience is.

[Silat]

Have you been diagnosed with Celiac Disease? Sounds like you've have a lot of positive changes from removing gluten from your diet, which may indicate Celiac Disease.

[wcmike]

No celiac diagnosis, but that may partly be because I had independently eliminated gluten from my diet. The test for gliadin antibodies was negative for celiac, even after a week of including lots of wheat in my diet. I felt awful after that week, though, so I won't be going back to the old way of eating.

[Nakamova]

It's great that eliminating gluten makes a noticeable difference for you. If a food allergy or sensitivity is preventing you from digesting and absorbing nutrients properly, your body can be affected in so many ways. The article at the link below characterizes gluten sensitivity as a "systemic autoimmune disease", that can manifest in different ways throughout the body, not just as celiac disease.

http://www.ncbi.nlm.nih.gov/pubmed/20170845

[wcmike]

I don't think that improper digestion or absorption of nutrients had much to do with the changes that came after eliminating gluten. I have two reasons for this belief: first, improvements in sleep quality, daytime alertness and anxiety became obvious within about 3 days of beginning the diet; second, I could reliably induce an almost immediate cascade of symptoms by eating wheat products, beginning with uncontrolled yawning about a half hour after eating.

It seems that gluten was having a more direct effect on my system than altering nutrient absorption.

[RobinN]

excellent observations

[wcmike]

Since September 2011 I've been monitoring my reactions to different foods, and reviewing as much of my medical history as still exists, in the light of the new discoveries. The most significant thing (as far as my epilepsy diagnosis is concerned) is that for the only two seizures for which I remember the immediately preceding events, the last pre-seizure memory for both was a total loss of language comprehension (one reading comprehension, the other listening comprehension). After starting to track my blood sugar and keeping a food diary that included any post-meal symptoms, one of the first entries after high-carb and gluten-containing lunch was that my reading comprehension was zero: I kept re-reading the same page of a book but couldn't make any sense of it. It wasn't until months later, when I read through 10- and 12-year old medical records that I was reminded of the preceding events of those seizures and experienced an 'aha!' moment.

At the time I was making those food diary entries, I had no idea of trying to find a connection to my seizures, or a gluten connection. I was, I thought, tracking symptoms related to my blood sugar. In fact, I made up a nice chart relating the onset of symptoms (yawning, tiredness, memory and concentration trouble) to rather specific blood-sugar readings. What I could not figure out was why the symptoms persisted long after blood sugar had returned to normal. Why would a carb-heavy lunch consumed at 1pm affect the quality of my sleep for the next two nights and make me feel fatigued the next few days, when blood sugar returned to normal by 3pm and stayed in a very narrow range thereafter?

No medical professional with whom I shared my blood-sugar findings and post-meal symptoms (and relief from those symptoms on a low-carb diet) questioned a) that everything I was finding was completely due to blood sugar fluctuations; b) that there might be some other food allergy or sensitivity at work; or c) perhaps there could be some linkage between the food-induced symptoms and any other previously-diagnosed condition like epilepsy. So I feel like I am completely on my own and a bit flaky, contemplating that a 37-year-old diagnosis of idopathic epilepsy may have been incorrect or at the very least incomplete. My seizures may not have been "unprovoked:" they may well have been caused by some dietary factor and gluten is a very likely candidate.

[RobinN]

I have read that there can be a four day range. I think it was a John Symes article. When I am not on my phone I will look for that info.
Good for you for figuring this out. This has been my approach too

[epileric]

It's great that eliminating gluten makes a noticeable difference for you. If a food allergy or sensitivity is preventing you from digesting and absorbing nutrients properly, your body can be affected in so many ways. The article at the link below characterizes gluten sensitivity as a "systemic autoimmune disease", that can manifest in different ways throughout the body, not just as celiac disease.

http://www.ncbi.nlm.nih.gov/pubmed/20170845

I hate when people post "abstracts" like that when they aren't abstracts. It makes claims as to what gluten sensitivity is but makes no reference to how this was found or why they might think that such a thing as gluten sensitivity exists. Abstracts are supposed to give facts with personal views discarded as much as possible but here they even say that it is just someones personal view.

In this Personal View, we review the range of neurological manifestations of gluten sensitivity and discuss recent advances in the diagnosis and understanding of the pathophysiological mechanisms underlying neurological dysfunction related to gluten sensitivity.

A good abstract will give details of what research was done, How it was done & what conclusions were drawn & why as opposed to just making claims.

As far as gluten sensitivity goes I've not found any such abstracts or proof that it exists.

[wcmike]

I have read that there can be a four day range. I think it was a John Symes article. When I am not on my phone I will look for that info.
Good for you for figuring this out. This has been my approach too

I take it the four-day range means that the gluten stays in the body for four days. That would be consistent with what I've observed, though by the third day of avoiding gluten, I'm pretty much back to my improved, gluten-free self.

[wcmike]

I hate when people post abstracts like that when they aren't abstracts. It makes claims as to what gluten sensitivity is but makes no reference to how this was found or why they might think that such a thing as gluten sensitivity exists. Abstracts are supposed to give facts with personal views discarded as much as possible but here they even say that it is just someones personal view.

A good abstract will give details of what research was done, How it was done & what conclusions were drawn & why as opposed to just making claims.

As far as gluten sensitivity goes I've not found any such abstracts or proof that it exists.

Whatever the phenomenon might be called, I have some kind of reaction to gluten. Ingesting it definitely causes a range of symptoms; avoiding it causes these symptoms to gradually abate and not recur. Whether there is some official, medically-recognized name for it is of little personal significance.

That said, it would be nice to have some body of medical literature to point to that clearly demonstrated not just an association or a cause-and-effect relationship, but a clear demonstration of the actual mechanism(s) by which gluten causes all the various maladies ascribed to it.

[epileric]

That said, it would be nice to have some body of medical literature to point to that clearly demonstrated not just an association or a cause-and-effect relationship, but a clear demonstration of the actual mechanism(s) by which gluten causes all the various maladies ascribed to it.

I think the problem is exactly that- that no studies have been able to show any such mechanism yet.

[epileric]

I have read that there can be a four day range. I think it was a John Symes article. When I am not on my phone I will look for that info.
Good for you for figuring this out. This has been my approach too

Actually we’ve discussed John B. Symes before except we called him Dogtor J and he was shown to be very wrong in his claims.

If you remember, we should all be very skeptical of this person. First of all, he’s a veterinarian, not a human doctor. He tends to think that what is good for animals is good for humans. Even when scientists experiment with mice they don’t assume that.

Secondly, he makes claims about having done experiments but does not tell what those experiments are or advertise what was done so that people can try to duplicate them & prove him right to give him credibility. That alone is suspicious.

Thirdly, of this list of 5 things that define a quack, Mr. Symes fits all but the first one (though he does sell consultations on his website instead of supplements).

1) Beware of people who attempt to push vitamin supplements on you. These quacks are attempting to make you believe that all your health problems are caused by your body's lack of nutrients. However, it has been proven that it is possible for people to get all the vitamins and nutrients that they need from good food choices.
2) Be careful of quacks that make claims without showing you the research for these claims. If you are seeking out alternative medical advice, you should ask to see what studies have been done to prove that this remedy is effective.
3) Watch out for claims that include the word "natural." A quack will attempt to push products or remedies that are "all natural" and do not contain "synthetic" ingredients.
4) Spot a quack by the way that they promise dramatic results in short periods of time. Quacks may try to push pills on you that miraculously melt away the fat and the sugar that is found in your body.
5) Check out their degrees or accreditations. Many accreditations and degrees held by quacks are not legitimate. Check with the U.S. Department of Education to see if the degree held by the person is accredited.

http://www.sinpuurou.com/health/how_..._a_quack/#more

If you don’t trust that list there are numerous lists that define quacks that will describe Mr. Symes so please be careful when considering this individuals advice

[wcmike]

Actually we’ve discussed John B. Symes before except we called him Dogtor J and he was shown to be very wrong in his claims.

I've run across the "dogtor" in Google search results when looking for information on gluten's effects. Can't say that I've looked deeply at his website.

...
Thirdly, of this list of 5 things that define a quack, Mr. Symes fits all but the first one (though he does sell consultations on his website instead of supplements).

If you don’t trust that list there are numerous lists that define quacks that will describe Mr. Symes so please be careful when considering this individuals advice

A year ago, I'd have considered quackery the diet changes that I've been working through since last fall - South Beach, low-carb, low-glycemic, gluten-free. Until I saw the effects for myself, I was an adherent of the calories-in > calories-out model of weight control, and believed that eating fat was unhealthy (and fattening, in and of itself). Then I started eating a diet high in fat & protein and low in carbs, but without counting calories or doing any portion control whatsoever. Not only do I feel better, objective measures of blood pressure and cholesterol - which I expected to go through the roof - improved.

I am now more open to considering that dietary therapy can have significant positive effects on health. Still skeptical of supplements and vitamins, though, since my experience was of benefit through removal of an offending food. I intentionally did not change anything else until over four months had elapsed, no vitamins, no medications changed, no difference in activity level. While there may have been a change in nutrient absorption, or the types and amounts of nutrients available due to the changed sources, for reasons previously stated I don't think nutrients had much of anything to do with the improvements I saw, any more than nutrition would play a part in an athlete's better performance after removing the 50lb sack of bricks strapped to his back.

[epileric]

Definitely if a diet works use it, I"m not saying not to but I am careful to believe those that seem to have no basis for their claims.

[DogtorJ]

Actually we’ve discussed John B. Symes before except we called him Dogtor J and he was shown to be very wrong in his claims.

@epileric - I would honestly like to know what you have found to be wrong about my work. I have been researching the epilepsy-diet connection for over 12 years now and have been contacted by numerous people in the medical profession- MDs, RNs, dieticians, and the like - and have never had one correct anything that I have written.

Please list the things that you have found to be wrong so that I may address them.

If you remember, we should all be very skeptical of this person. First of all, he’s a veterinarian, not a human doctor. He tends to think that what is good for animals is good for humans. Even when scientists experiment with mice they don’t assume that.

First of all, dogs are not mice. The physiology of dogs and humans is very similar, which is why they use dogs in many medical studies. Both species have been shown to be gluten intolerant. Both species suffer from "idiopathic epilepsy". Both species suffer from hypothyroidism, liver disease, pituitary/hypothalamic/thalamic/hippocampal/blood brain barrier disorders and adrenal dysfunction, all of which contribute to the complicated nature of epilepsy.

Secondly, he makes claims about having done experiments but does not tell what those experiments are or advertise what was done so that people can try to duplicate them & prove him right to give him credibility. That alone is suspicious.

I have never claimed to have done experiments. I'm not sure where you got that notion. If I ever used the word "experiment" it would have been an informal use of the term, such as "I experimented with different dog foods to find which ones worked best", which means I suggested various brands to my clients to see which did the best job of halting their seizures.

My work is an open book to those who actually go on the site and read the material. My first paper "idiopathic Epilepsy - The Dietary Solution lays out EXACTLY what I did and how I learned what I did. My site tells the reader which foods I used/recommend so that they can do exactly what you say I have not done...enable the reader to duplicate ALL of my work for themselves. In addition, I have spoken at 4 major veterinary conferences and one human one on this subject, enabling veterinarians and MDs to duplicate my work.

The information is and has always been FREE to anyone who wants it. I sell nothing on my site. The only compensation I have received is for a handful of paid veterinary consultations (never charging for phone calls about human cases). Doesn't quackery usually involve the sale of items (e.g. supplements) or the use of questionable lab tests or machinery to promote an alternative method to conventional treatment? Are you equating the employment of proper nutrition with the use potions and gadgets?

Thirdly, of this list of 5 things that define a quack, Mr. Symes fits all but the first one (though he does sell consultations on his website instead of supplements).

If you don’t trust that list there are numerous lists that define quacks that will describe Mr. Symes so please be careful when considering this individuals advice

First of all, it's Dr. Symes. I did 3 years of undergraduate work, went to 4 years of veterinary school and followed that with exclusive 1.5 year internship at Angell Memorial Animal Hospital in Boston. I am now in my 33rd year of practice. I believe I've earned the title.

Secondly, if you are going to call someone a quack, you better be ready to back that up. I would like to know your real name and what you do for a living (other than moderating a forum) so that I can know that you are qualified to critique my work the way that you have. I would then like to have you lay out exactly why you believe I am a quack.

I'll give you a heads up, tho. Before you get started, you need to do some EXTENSIVE research on gluten intolerance, including reading countless PubMed articles on the subject. You then need to study neurophysiology, neuroanatomy, immunology (including vaccinosis), virology (e.g. How many viruses are KNOWN causes of seizures?), bacteriology (including the role of pleomorphic bacteria, cell-wall deficient bacteria, mollicutes in mitochondrial function), gastroenterology (especially the ramifications of the leaky gut syndrome), internal medicine, endocrinology, nutrition, and the seasonal nature of disease.

I'll be honest, you write like you don't believe that gluten intolerance is a real problem. Is that why EVERYONE is talking about this and that we have major food manufacturers offering gluten free products now? Did you know that the gluten-epilepsy connection was actually made in the late 1880s? Have you ever been on www.gfcfdiet.com and read the Success Stories? Have you ever actually been on my Website or read the Testimonials section? Do you REALLY think I made all of that up??? If so, you are not only calling me a quack but also a liar. The quack part is subjective: If someone doesn't believe something because they don't know the truth, then they can say what they want. But to call someone a liar needs some serious backing. Is that what you are saying??

Once again, please tell me your name and occupation so that we will be on equal footing here. If it needs to remain confidential, feel free to PM or Email me that information. I will not divulge the information. It's only fair that I know who my accuser is and whether you are qualified to call me a quack and/or a liar.

BTW - I did not give myself the title of "GARD Diet Guru". I'm not sure who did. I have always been very open about the nature of my work, which started with ASTOUNDING results in K9 epilepsy and has gradually gained the attention of human epileptics, many of whom have done remarkably well on the diet.

[DogtorJ]

Definitely if a diet works use it, I"m not saying not to but I am careful to believe those that seem to have no basis for their claims.

I humbly suggest that the main reason it seems to you that I have no basis for my claims is because you are unaware of the medical research in this area. Google "gluten, epilepsy" or "gluten, seizures" and you will find all of the basis you need. Then, all you need to know is that gluten is not the only culprit...and why.

[Silat]

First of all, dogs are not mice. The physiology of dogs and humans is very similar, which is why they use dogs in many medical studies. Both species have been shown to be gluten intolerant. Both species suffer from "idiopathic epilepsy". Both species suffer from hypothyroidism, liver disease, pituitary/hypothalamic/thalamic/hippocampal/blood brain barrier disorders and adrenal dysfunction, all of which contribute to the complicated nature of epilepsy.

Please explain your reasoning for believing that a diet that works for a carnivore (dogs) would work equally well for an omnivore (humans).

Also, to clarify, are you saying you're making these claims about the success of the GARD diet, purely from your experience as a vet, and from hearing others personal experiences, without any scientific studies/experiments backing your claims?
How do you rule out things like the placebo effect, outside variables that could influence the results, and people exaggerating their personal experiences?

[Nikkal]

"google"? That's your citation? Telling us to use Google for medical information? How about something from PubMed? If you've got all these studies, how about giving journal info?

[DogtorJ]

"google"? That's your citation? Telling us to use Google for medical information? How about something from PubMed? If you've got all these studies, how about giving journal info?

Yes...Google. What easier way to see for yourself the vast amount of information on topic, including journal articles and personal testimonials? Do I really need to cut and paste the links to all of the articles I have amassed on the topic over the past 12 years? I think Robin N. has already done that a number of times on this forum.

I would suggest that you start here:

http://www.google.com/search?q=gluten%20seizures

Then expand your search to include casein, soy, glutamate, aspartame/aspartame, and seizures. You will learn much more from doing this than my simply posting PubMed articles like this one:

http://www.google.com/search?q=PubMe...ten%20seizures

I've been involved in this debate numerous times over the past 12 years and found that no matter how many PubMed articles I post, it's still not enough if the person does not believe that proper nutrition has anything to do with their illness, which still blows my mind but...

Understand this: Once the leaky gut is established (by gluten, casein, soy, and/or corn), there is nothing that can't go wrong with an individual.