Epi Improved w\gfdiet-md report

Zoe

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Here's encouraging news on the connection between gluten sensitivity and seizures:



Canales P, Mery VP, Larrondo FJ, Bravo FL, Godoy J.
Department of Neurology, Hospital Regional de Talca, Talca, Chile.

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.

PMID: 17122729 [PubMed - indexed for MEDLINE]
 
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Zoe

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You can quickly look it up by the PMID. Here's a google link to it:
Epilepsy and celiac disease: favorable outcome with a gluten-free ...Epilepsy and celiac disease: favorable outcome with a gluten-free diet in a patient refractory to antiepileptic drugs. Canales P, Mery VP, Larrondo FJ, ...
www.ncbi.nlm.nih.gov/pubmed/17122729
 

RobinN

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The only problem in convention medical practices is the lack of knowledge in how to test for it.
Also the tests are tricky, so I am sure that insurance is going to put up a "stink".
Patients won't be willing to give it a "Go" because they don't have lab work that "proves" anything.

I do believe there is a genetic test, but it is very expensive to do. Perhaps with this news you have posted, it will be easier to get this type of testing done.
 

Zoe

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The only problem in convention medical practices is the lack of knowledge in how to test for it.
Also the tests are tricky, so I am sure that insurance is going to put up a "stink".
Patients won't be willing to give it a "Go" because they don't have lab work that "proves" anything.

I do believe there is a genetic test, but it is very expensive to do. Perhaps with this news you have posted, it will be easier to get this type of testing done.
Stool testing is another option. The director of this lab designed and patented the stool tests he is using. The test does not require a doctor's prescription. His data have not been published so his work is not recognized in conventional medicine. However, Dr. Scot Lewey, who I may have mentioned before, speaks postively of Dr. Fine and his tests. They are much less expensive and invasive than conventional testing, which cannot prove without doubt that someone has gluten sensitivity or celiac disease-the definitions are controversial and changing as they are challenged by new research.

Even if you could afford to get the testing for genetic markers, it wouldn't prove much other than you have a greater likelihood of developing gluten related disorders than people who don't have the markers. However, not everyone who has the genetic markers develops signs or symptoms of gluten sensitivity, so is that (expensive) test really necessary? The bottom line is you want to know if you are having any kind of negative reaction to gluten in your diet, period.
Researchers in the UK are arguing that gluten sensitivity should be reclassified as a neurological illness.

Understanding the Genetics of Gluten Sensitivity by Dr. Scot LeweyDr. Scot Lewey is a digestive disease specialist doctor (board certified ... However, according to unpublished data from Dr. Ken Fine of Enterolab, ...
http://www.celiac.com/articles/1046/1/Understanding-the-Genetics-of-Gluten-Sensitivity-by-Dr-Scot-Lewey/Page1.html

What is gluten? How can gluten be harmful? What is gluten ...This test is being offered at an affordable price by EnteroLab. ... EnteroLab. com This new stool test can detect antigliadin antibodies in stool whether a ...
https://www.enterolab.com/StaticPages/Frame_Faq.htm
 
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Also the tests are tricky, so I am sure that insurance is going to put up a "stink".
Patients won't be willing to give it a "Go" because they don't have lab work that "proves" anything.
It's sad that insurance companies aren't more supportive of less evasive treatments that could potentially cure the ailment. Over time this would save them, and us, more money. Tests and research costs money up front, but this will also save more money in the long run.

Scientists can't keep working if they find the "cure", so they just keep leading us on with the latest drug that promises some sort of relief without the cure. There's where they make the money.

What's even worse is that patients aren't willing to give this a "Go" even without the lab work. What's the harm in removing gluten from your diet for 30 or 60 days to see if there is an improvement? I would much rather live without gluten (and I do) than to live on pills and suffer from a treatable condition.

I'm sorry, I guess I just hopped up on my soap box :soap:
 

RobinN

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Soap boxes are good... they help you to see above the crowd. Sometimes we need to do that to see the bigger picture.

To be honest though, I would have to say that I believe it would take far longer than 60 days to realize this approach is helping. It would take longer than two months for the intestinal tract to heal. That is the ultimate goal.

Certainly if you are that sensitive to gluten you would see an immediate reaction, as some folks do. However, if you are not showing intestinal distress, and only neurological or psychological distress, I would think that the gut needs to be healed.
 
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You're right that for those less sensitive, it may take longer than 60 days for the intestinal tract to heal. Even if it took a year, I would find that more favorable than many of the other options offered.
 

Zoe

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I'm sorry, I guess I just hopped up on my soap box :soap:
:agree:With Robin! Keep hollering and rattling their cages. We are all often alone in dealing with seizures. Conventional medicine's approach is so narrow it can be life threatening-and was for me! Guess I better run get more soap so we can keep the wheels on our soap boxes greased!:soap::mrt:
 

Zoe

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You're right that for those less sensitive, it may take longer than 60 days for the intestinal tract to heal. Even if it took a year, I would find that more favorable than many of the other options offered.
It may take several years to heal. And if you heal, you may harm yourself all over again if you start eating a lot of gluten after improving on the diet. I think I might have done this to myself.
 
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I believe it's highly possible to cause damage again by reintroducing these products back into the diet after healing. That's why I have virtually no plan of ever going back to my previous way of eating. I'd rather maintain my health and not yo-yo.
 

Zoe

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I believe it's highly possible to cause damage again by reintroducing these products back into the diet after healing. That's why I have virtually no plan of ever going back to my previous way of eating. I'd rather maintain my health and not yo-yo.

I don't know about the raw foods diet, but think this holds true or gluten sensitivity. I'm learning -painfully- from experience. If the diet continues to work for you then there's no reason to go off it. Certainly there's not a good reason for me to go back to alcohol, now that I've been sober for thirty years, either!
I do have some concerns\questions about the raw foods diet, but haven't asked many specific questions. I didn't want you to feel on the defensive by my questions.
With the gluten free diet some people do heal and may be able to go back to eating some gluten in their diet. But if they go back to the diet they were on to start with, I think they will get sick all over again too. :soap:
 
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Feel free to voice any questions or concerns. I'll do my best to answer what I can for you. I promise not to take offense :)
 

Zoe

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Feel free to voice any questions or concerns. I'll do my best to answer what I can for you. I promise not to take offense :)
Thanks Sarah,
Does your diet include raw grains, or beans?
 
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I do not include sprouted grains or beans in my diet, but some people choose to do so. There's no special nutritive value in raw sprouted beans or grains that I can't get elsewhere. They just don't appeal to me.
 

Zoe

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I do not include sprouted grains or beans in my diet, but some people choose to do so. There's no special nutritive value in raw sprouted beans or grains that I can't get elsewhere. They just don't appeal to me.
Thanks Sarah,
Sorry I'm just getting this. I asked about the beans and grains because of their phytate content. I'm interested in more details about what you do eat during a typical day and does it provide you with all the nutrients you need, minerals, vitamins, amino acids, proteing, fiber, carbohydrates?
I stick pretty close to a gluten free diet, lots of veggies, very little meat, tofu and eggs for protein along with some soy powder. What about bread?
I'd like to understand more what it is about the diet that leaves you feeling so much better and is helping your son with his seizures. :ponder::mrt:
 
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Hi Zoe,

I've spent the last almost two years of my life researching diet and nutrition and the human digestive system. I don't claim to be an expert, but I feel confident that I am making the right choices for my family based on what I've learned and how our bodies have responded to the dietary changes we've made.

I don't believe grains and legumes(beans) were ever intended for human consumption. We lack the digestive enzymes necessary to break down and assimilate them. Birds and a few other animals do have the digestive enzymes necessary for grains and beans. This is why so many people have digestive issues (gas/bloating) and disease (celiac) from the consumption of bean and grain products. As humans we feel entitled to eat whatever we want, but that doesn't mean our bodies were designed to eat whatever we could manipulate into a tasty meal.

My breakfast typically consists of a quart-sized fruit smoothie made with fruit, ice, and just enough water to blend. I always include bananas in this smoothie to give it a sweet flavor and creamy consistency. My breakfast is usually 500-700 calories. Lunch is another quart-sized fruit smoothie along with some celery, cucumbers, grapes, or some other finger food that I might desire to munch on while I sip the smoothie. This usually provides around 700-900 calories. My favorite, well rounded dinner consists of a smoothie made with more acidic fruits like pineapple and berries, a raw soup, and a salad topped with tomatoes, bell peppers, cucumbers, nuts, and a fruit of some sort (grapes, pineapple, or clementines). Dinner usually provides between 300-600 calories. The bananas I consume at breakfast and lunch provide a lot of calories for those two meals, which is ideal because I am more active during the day than in the evening hours. I snack on fresh fruit if I get hungry between meals. I would say that snacking averages into another 100-200 calories a day. I average between 1800 and 2500 calories. I use www.nutridiary.com to track my calories and nutrients. I don't enter them in every day, but I will do that every so often just to make sure I'm getting what my body needs. My food varies depending on my mood and what's in season. Some days I may make a fruit salad at lunch instead of a smoothie. Some evenings I may prefer to make a dip and eat veggies and dip instead of a salad.

I get all the nutrients my body requires from the food I eat. I haven't needed supplements since beginning this way of eating. I've had my blood checked three times and each time it has come back perfect. The first time it was checked my insurance premiums were lowered because I was so healthy. My protein levels are right where they should be and my blood sugar levels remain consistent. My blood pressure and cholesterol is perfect. I've always been anemic and I've been on iron pills for this issue in the past. My iron levels now remain normal as well. I don't have to take multi-vitamins and calcium pills anymore. My PMS symptoms, heavy, painful menstrual cycles, and extreme painful ovarian cysts have been relieved. For the first time since puberty, my cycles come regular, they're lighter, and without the debilitating pain I once suffered. My regular headaches have disappeared. My energy levels have soared. My heart rate has come down(used to race). My joints don't creak when I move anymore. I felt like I was much older the way my joints used to pop and creak every time I walked across a room. My seasonal allergies went away. I haven't been plagued by my annual sinus infections anymore. I haven't even had so much as a cold since we changed our eating habits. All body odor left. I really have no need for deodorants anymore. Bad breathe is gone as well. My hair is healthier, no longer dry and brittle. My emotions and moods stay balanced. I can think clearer, like a brain fog lifted. Really, I could go on and on about the benefits. The more I think back to how I was two years ago and how I am now, I'm amazed. I lived on ibuprofens for cysts, headaches, cramps, back aches, etc. I haven't had a pill of any kind in more than 21 months. On top of all of this, I released over 55lbs of excess weight. I went from being lethargic and obese to being healthy and energetic.

The changes I've seen in Elijah have been just as amazing. He used to be tired and listless a lot. He didn't want to do anything and rarely had the energy to go out and play. He just wanted to sit around and play computer games or watch videos. He rarely sits at a game now. When the weather is nice (or even when it's not), he is begging to get out and ride his bike or play with the neighbors. He would cry whenever we had to go to the grocery store because it hurt him to walk around. At the age of 5, he still had to sit in a cart or stroller because he could not keep up. Now we can't keep up with him. His physical abilities have really improved on this diet. Besides that, he hasn't had seizures while adhearing to it. The only seizures he's experienced since being diagnosed 19 months ago was when I let him indulge in some processed foods over the New Year holiday. I have read many, many success stories of adults and children who have healed from many diseases (even epilepsy) by this same diet. I also have a personal friend who came off of 6 different seizure meds with raw foods.

I believe what makes this diet work isn't what I am eating, it lies in what I am NOT eating. When you remove the products that your body can't digest well (grains, beans, dairy, etc) and remove the products that cause adverse reactions in our bodies (MSGs, preservatives, sugars, additives, etc) then our bodies can function as they should. We have more energy because our bodies our not using as much of it's energy on digesting hard-to-digest foods. We feel better and think better because our brains aren't dealing with the assault of excitotoxins. We don't suffer from common colds, viruses, and infections anymore because our immune system isn't weakened by improper diet. When our bodies and digestive systems are functioning as they should, then they can absorb vitamins, nutrients, and minerals much better than before.

I hope this answers some of your questions. If you have more, feel free to ask. I actually started a raw food thread, so I may move this conversation over there so it will be easier to find in the future.
 
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Zoe

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It makes sense to move this to a raw foods thread. It may be that the diet is lacking many of the additives and foods prepared in a way that they trigger chronic inflammation. I've seen some links to the raw food diet also concerning whether the diet triggers ketosis, which can also improve seizures.
 
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