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Need Help With A Newspaper Submission. . ..
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I've come to all of you smart friends, as I have so successfully done before, for some information.

I've been watching and listening with great interest to recent news reports dealing with the "Liberation Treatment", a controversial medical procedure used in the treatment of multiple sclerosis that involves angioplasty to unblock veins in the neck. The story is all over the news here in Canada, as the federal and provincial governments face much pressure to start funding studies on the efficacy of this approach. Lately there have been many Canadians who have spent thousands and thousands of dollars to get themselves to Poland and Bulgaria for this treatment. Some have had improvement of MS symptoms, some have not. Many still have the cognitive difficulties, the fatigue, join and muscle pain, ataxia, depression, myelopathy. . . . . . ....and on and on....

As I have watched the documentaries on TV and read about these people, I find myself with a knot in my stomach, always thinking, "Dear gawd. .. . ...... . .it often takes eleven years or more to rightfully diagnose gluten intolerance/celiac disease, and we'll never know how many individuals were never diagnosed, or were misdiagnosed with something else, and ended up dying from complications of gluten trouble". :(

I want to strike when the iron is hot -- this subject is being talked about around many water coolers right now. So, I am going to write an editorial and submit it to our local newspaper, hoping to reach people who have MS or know someone who does and inform them about celiac disease, how symptoms can mimic many conditions and how testing is easily done.

I would love to hear from celiacs here who have been misdiagnosed with MS, who had symptoms lessen or disappear with a gluten-free diet and therefore concluded that the cause of their illness is gluten. I will mention this forum in my piece if there is great response, as there is nothing more powerful than reading real voices!

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I was thought to have MS for a long time. Both because of my symptoms and because the UBO white lesions are similiar to the lesions found in MS. Mine were in the wrong place but it wasn't until I had a spinal tap done that they firmly ruled out MS. Ms lesions will throw debris specific to the demylinating process into the spinal fluid. UBOs don't. Unfortunately some doctors will diagnose MS based on the MRI lesions and symptoms but not do the spinal tap. As the spinal tap, although an easy procedure in itself, can lead to the worst headache one can ever experience that can scare folks off from the procedure. IMHO spinals should always be done on an inpatient basis to avoid this but they are often now, as mine was, done on an outpatient basis. This means that the person will be upright and the headache will occur as to avoid that the patient needs to be totally flat for a day. My advice is to have anyone who has not be conclusively diagnosed by spinal to be sure to have celiac screening and a trial of the diet. It did take several months for my MS like symptoms to resolve.

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Thanks for this, Raven. :) I've read your posts through the last few years and marvelled at how you have managed to get through such tough times brought on by misdiagnosis.

I did a forum search and have found a couple of threads on the MS-celiac connection, but they are three and four years old. I was hoping to get a fair amount of current responses. I've been to many of our local celiac association meetings, and in the last couple of years I have spoken to FOUR people there who were misdiagnosed with MS, were on expensive meds with side-effects, and long story short, started eating gluten-free and their symptoms eventually disappeared and have not come back. Incredible - - and this was just in the last two years.. . . . . ...I cannot help but wonder how many people would have told me this story if I'd been attending these functions for ten or twenty years!

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Hm. I'm being tested for celiac disease within the next two months and I'm actually telling my mom to get tested too because she has much of the same problems I do - and she has MS. So we'll see.

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MS was the first working diagnosis I had. I then went on to have 9 different diagnosis over 4 years. After feeling I wasn't beeing taken seriously by my primary physician, I switched doctors and was tested on the first visit for Celiac. Bingo. After 2 years strictly gluten free, most of the neurologic symptoms have improved, but are not gone. I suspect permanent damage has been done but life is more manageable now.

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    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
    • It only takes a minute to make a difference. Celiac disease has been overshadowed by the gluten-free diet fad. Getting diagnosed and staying healthy is no piece of cake – those of us who have celiac disease struggle to stay healthy. We need better. We need to be understood. We need a cure. View the full article
    • If you are one of the approximately 2-3 million Americans with celiac disease, ZyGluten™ may be taken before you eat out at a restaurant or a friend\'s house, as it may help break down any gluten cross-contamination that you might encounter. View the full article
    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
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