Hi Jimbob, i totaly get where your coming from, this is one of my symptoms ive been remembering from way back to age 14. i do believe in the auto immune problem and believe my gluten allergy has alot to do with mine.
you've prob already read about Ramsay Hunt syndrome, as it can cause heaps of damage to the brain, with out ever showing up with all the GB symptoms. it can attack the brain and cause damage similar to MS.
so your on the right track, good luck to you . jen from Australia.

Thanks for posting, Jen. That is a great testimonial and really helps to pull things together.

The study of lectins explains sooooo much. (http://www.krispin.com/lectin.html). Once we see that these harmful glycoproteins (especially those from gluten, dairy, soy and corn) can cause tissue damage/inflammation ALL BY THEMSELVES, without an immune response, then things start really making sense. We can then see that the immmune response is secondary to that damage, which helps to explain why we see such a variation in the measurable response by different individuals. Some will respond with an outpouring of antibodies yielding positive tests while others will not, explaining negative tests in individuals who end up responding well to the elimination diet when they go ahead and do it anyway in the face of those negative tests.

These dietary glycoproteins are also a big part of what we love to call "autoimmune disease". Personally, I do like nor do I use that term anymore unless I put it in quotes. That term implies that the immune system is attacking it's own body's tissues for no good reason. I contend that this does not happen...ever. The immune system always responds appropriately and we simply do not fully understand why it does what it does some times, with the inflammation being incited by lectins being the prime example.

Lectins are antibody-sized proteins/glycoproteins. That makes them really tiny. How would we know they are there when they are that small? We can't see them in a routine tissue sample. It would take biochemical analysis or, again, antibody tests to determine whether they are involved. Therein lies the rub. Once again, not everyone responds with what we might call an "appropriate" response...one that we can detect readily. We just have to know that these lectins can and do cause changes in the individual cells of the body (from neurons to nephrons to blood cells, etc) of susceptible individuals. I contend that the "big 4" (gluten, dairy , soy and corn) are not GOOD for anyone. They are simply better tolerated by some than others. This is the nature of "spectrum disorders", which range in severity from the best of the best to the worst of the worst. I tell people to think "peanut allergy" when thinking about the worst of the worst. Whoa! Now that's a sensitivity.

So, does gluten affect neurons? Definitely. Can it kill neurons? Yes! Do a search for "gluten, neurons" and you'll find some interesting things. But how it does that is the interesting thing, and the clue is in the link above about lectins. A concurrent study of viruses helps to see the big picture and that is why I write so much about this on my site now.

It is logical that the viruses INSIDE that cell are the things that determine the response of that cell to the challenge by lectins, carcinogens, and other chemicals/pollutants, etc etc. Reading the Lectin Report above, one might ask what determines how a cell decides which of the ten different responses it will manifest once challenged by the lectin (from cell death to tumor formation). I believe the answer lies in the adaptive viruses found inside that cell. That's what viruses do in nature...facilitate adaptation (as well as cause variation in nature).

The cool thing to see is that our very DNA contains these adaptive viruses. They now estimate that up to 45% of the genetic codes in our double stranded DNA is actually viral information. This is what retroviruses, in particular, do...they infect the cell and incorporate their genetic info into our DNA. That is why they are main viruses involved in cancer AND why cancer can be "genetic" (inherited). This info can be transmitted vertically to the offspring.

The other cool thing to see is that cancer itself is an adaptive process. The viruses that "cause" cancer are simply adapting to the challenges (e.g. carcinogens) that we keep throwing at them. When all else fails, they cause the cell they are designed to protect to start growing out of control in order to ensure the survival of that virus and the cell itself. So, I now look at a tumor as a protective cocoon. Radical idea??? Yup. Does it make sense when you understand what viruses do in nature that is good and vital? It does to me.

So, why don't we all have cancer and have it early in our lives. Once again, because there is another part of the "syndrome" that is necessary...a weakened immune system. Yes, we are killing cancer cells right now (hopefully). The immune system recognizes when a cell is trying to do something that it deems inappropriate or harmful and send in the cavalry....hopefully. This could be just what we (incorrectly) label as an "autoimmune response". No, the body DOES know exactly what it is doing each and every time it does something. I believe that down to my socks. We just don't understand what it is doing sometimes, and this is one of those times.

How does this apply to epilepsy and other neurodegenerative diseases (e.g. MS, Alzheimer's, Parkinson's, ALS)? Again, as we stated above, some viruses love the central nervous system. The two most common brain tumors in vet medicine are the astrocytoma and oligodendroglioma, both viral and of those cells that control many of the supportive functions of the neuron, including the production of the myelin sheath and the control of neurotransmitter levels (glutamate). If there are viruses in there causing tumors, then through "reverse engineering", we can see that there are going to be the processes (e.g. "autoimmune diseases") that precede the formation of tumors, because these are the means by which the immune system controls the tumor production...until it gets overwhelmed by all that we are throwing at it.

I hope this make sense and helps in some way.

John

Here is an Email I just received from someone to whom I sent my posts on this thread in the form of a mail out (to my "Friends of DogtorJ"). I like to keep them up to date on my "extracurricular activities".

It is a very tragic but powerful statement. I hope it helps in some way.

John

(PS. You may be shocked to see how many times things go wrong on the LEFT side of the body as opposed to the right. Here is a thread I started a while back- http://neurotalk.psychcentral.com/sh...ad.php?t=13197 )

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Doc - I found your comments so interesting. My Mom died in 1968 of a brain tumor at the age of only 54 - oligodendroglioma of the left anterior cerebral hemisphere. Since I have celiac, I know that she did too - seizures, multiple miscarriages, thyroid issues (probably Hashimoto's), major mood and personality changes, short stature, and probably many others (she died when I was 20 and I sure didn't know then what I know now.)

I am constantly working for our new GlutenFreeLexington group (glutenfreelex.org) and all my family members who have trouble with the the multiple food intolerances. Daily I am seeing how the Lord didn't make this problem - man did. And man (if he wants to hard enough) has to work to correct it the best way we know how - by celiac/gluten awareness, good eating habits and lots of daily faith and Bible study.

Make it a great summer and keep up your writing.

[QUOTE=DogtorJ;110018]
Now, on that lack of drive or motivation to do the diet.... Is it because you do not believe it will help, that you think it would be too hard to do, or that you are simply not interested in the concept? The diet is very logical from every angle from which we approach it.

Well, it's hard to explain, but a combo of the above, lol.

I have a lot more wrong with me than "just" epilepsy. I have rsd/crpsII, due to a surgical screw-up and a minor electrocution... that's been going on for 14 years now, a very long time to be in constant pain.

Then there's the AIDS. That's the one people think is the worst, of course (Due to pain issues, I'd rather have aids than rsd). I am not on the meds I should be on, because they all cause horrible muscle/nerve aches, which exacerbate the rsd/crps more than I can handle. It's great not treating one disease because of what it does to the symptoms of another, I tell you what. I have a great choice to make... die quicker w/o the aids meds, or live longer in excruciating pain. Hmmmm

What's even worse is the aids meds dosages. Michael, my man, is 5'11" and 235 lbs... I am 5'0" and weigh a whopping 90 lbs. Yet, they give us BOTH the exact same dosages of aids meds. They will NOT give me kids meds (more expensive, I gather), nor will they allow pills for adults to be cut in half. So, that leaves me with just one alternative: to take none.

I basically live on Boost, which I doubt very seriously meets the needs of your diet, lol. Most of the rest of my food comes out of boxes these days, yuckos, except when Michael feels like cooking. He's got aids and hepC, too. However, he is a french chef.... and couldn't begin to cook w/o all those ingredients you want us to avoid. It already takes me long enough grocery shopping, having to make sure everything I buy is msg-free. Michael is allergic to it, causes him days-long migraines. Now that I have had no msg in my diet for so long, I can't tolerate it either.

So, there are my reasons for not adopting your diet. While it may be the greatest thing ever, it is definitely not for me. When you figure out how to box it and ship it, let me know, lol! Of course, then I wouldn't be able to afford it, nor would my insurance cover it. Another Hmmmm.

Hey Rogue,

I do sympathize with the difficulty of eating like this. It was really tough at first, with my trying to find things to eat being just as hard as giving up all of my favorite junk. But, it becomes a lifestyle and MUCH easier with time. I eats lots of meats/eggs/fish, fruits, veggies, salads, nuts, berries, some rice and some potatoes. I eat a lot of the same thing but that's OK. I'd rather feel good than have as much variety as I use to. Of course, my variety could be much greater if I had more time to be creative. This does not have to be so limiting. There are lots of great gluten-free products out there now and more on the way.

The cold hard truth ( ) is that people in your medical situation need this information more than anyone else. You may find that your pain threshold would improve dramatically in a short period of time. And you're right about the Boost. Dairy-based nutrition is the worst. I wanted to cry every time I walked the halls of the hospice my Mom was in, as I watched all of the elderly (many with Alzheimer's) drinking all of that Boost and Ensure. They'd be much better off drinking a fruit smoothie or veggie juice with egg protein. But hey, that doesn't come in a can.

The key is immune system health and the "big 4" are wreaking havoc on our ability to maintain a healthy "coat of armor". Cow milk is not the number one human, dog and cat allergen for no reason. Note that the Boost boldly states that most of its flavors are gluten-free. Thank Goodness. The combo is a major one-two punch. It does have corn products, though.

Have you read about Eating Right for Your Blood Type? Great stuff, all based on the topic of lectins. Dr. D'Adamo knows what he is talking about. (www.dadamo.com). Check out some of his testimonials. Amazing and totally explainable.

Keep seeking answers.
John

I most certainly will, thank you I have bookmarked that link, it's lunch time lol. Thank you very much for all your help.