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ravenwoodglass

Great Paper On The Neurological Manifestations

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This is one of the best articles I found when I researching the effects of gluten on the brain. It also details the need for total, absolute exclusion of gluten that is needed for recovery from the neuro complications. Those of us who have the neuro related problems need to be even more certain that we eliminate gluten from everything. They even have an MRI scan that shows the same kind of changes mine did. Too bad my neuro didn't recognize it would have saved me a lot of pain. He stated that 'they didn't know what caused the lesions but they were harmless, he saw them frequently and they were not the cause of my nerve problems or ataxia. In his opinion those were 'in my head' here have a prozac. Anyway I was looking for something else and came across this for anyone who is interested.

http://jnnp.bmjjournals.com/cgi/reprint/72/5/560

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This is one of the best articles I found when I researching the effects of gluten on the brain. It also details the need for total, absolute exclusion of gluten that is needed for recovery from the neuro complications. Those of us who have the neuro related problems need to be even more certain that we eliminate gluten from everything. They even have an MRI scan that shows the same kind of changes mine did. Too bad my neuro didn't recognize it would have saved me a lot of pain. He stated that 'they didn't know what caused the lesions but they were harmless, he saw them frequently and they were not the cause of my nerve problems or ataxia. In his opinion those were 'in my head' here have a prozac. Anyway I was looking for something else and came across this for anyone who is interested.

http://jnnp.bmjjournals.com/cgi/reprint/72/5/560

Thanks for posting this. I just read this article and found it very interesting. Other than lactose and casein intolerance (which caused digestive symptoms for me) gluten has mainly caused neurological symptoms in me. I have (when getting gluten) brain fog, fatigue, headaches, aching muscles and joints, insomnia, anxiety, depression, dizzyness. :blink: And most recently, a rubbery leg feeling and aching arms symptoms that lasts for a few days and gets better (I think it must be from an accidental glutening). I have only been gluten free since May so I have been eating things like Frito Lay chips which don't list gluten in the ingredients, but I think now I am having some reaction to them. I am getting ready to move to a more simplified diet, especially after reading this.

Sarah

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Great article! Every doctor should read it. They are diagnosing and treating only one symptom of the many possible symptoms that may result from gluten exposure to a gluten-intolerant person.

Gluten sensitivity is best defined as a state of heightened immunological responsiveness in genetically susceptible people. This definition does not imply bowel involvement. That gluten sensitivity is regarded as principally a disease of the small bowel is a historical misconception. Gluten sensitivity can be primarily and at times exclusively a neurological disease. The absence of an enteropathy should not preclude patients from treatment with a gluten-free diet. Early diagnosis and removal of the trigger factor by the introduction of gluten-free diet is a promising therapeutic intervention.

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Does anyone else get hypthyroid type of symptoms from glutening? I felt hypothyroid for a long, long time. Cold, skimpy eye-brows, needing lots of sleep, brainfog, forgetfulness, but since being gluten-free and now dairy free for almost a year those have gone away. Just curious because I run into a lot of women with these same symptoms yet normal thyroid levels and I'm wondering if it might be related.

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Does anyone else get hypthyroid type of symptoms from glutening? I felt hypothyroid for a long, long time. Cold, skimpy eye-brows, needing lots of sleep, brainfog, forgetfulness, but since being gluten-free and now dairy free for almost a year those have gone away. Just curious because I run into a lot of women with these same symptoms yet normal thyroid levels and I'm wondering if it might be related.

While your symptoms may have cleared up after having gone gluten-free, these are not necessarily clear signs of thyroid issues.

For instance, most women find their hair thins as they age - just in general. They may perceive that they are experiencing forgetfulness, but in a study I read which tested women with this issue the researchers concluded that the forgetfulness the women perceived was really not different from that of men or persons of any other age. They just expected to be forgetful, because we "know" that middle-aged women are, so they found confirmation wherever they looked. The report attributed forgetfulness to stress of overwork and overscheduling. Brain fog? Lack of sleep. Who gets enough sleep these days?

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Does anyone else get hypthyroid type of symptoms from glutening? I felt hypothyroid for a long, long time. Cold, skimpy eye-brows, needing lots of sleep, brainfog, forgetfulness, but since being gluten-free and now dairy free for almost a year those have gone away. Just curious because I run into a lot of women with these same symptoms yet normal thyroid levels and I'm wondering if it might be related.

Strong yes for me on this. I also lost a great deal of hair. They also used to test my thyroid frequently sometimes numbers would be a bit off but not out of the normal ranges.

While your symptoms may have cleared up after having gone gluten-free, these are not necessarily clear signs of thyroid issues.

For instance, most women find their hair thins as they age - just in general. They may perceive that they are experiencing forgetfulness, but in a study I read which tested women with this issue the researchers concluded that the forgetfulness the women perceived was really not different from that of men or persons of any other age. They just expected to be forgetful, because we "know" that middle-aged women are, so they found confirmation wherever they looked. The report attributed forgetfulness to stress of overwork and overscheduling. Brain fog? Lack of sleep. Who gets enough sleep these days?

I agree these were not thyroid issues, they were gluten issues. Everything you said in your second paragraph could have come directly from what my many doctors said before I went gluten-free. I was told it was aging and symptoms of menapause. Interestingly enough my hair has grown back and much of it is brown not snow white, I have no problems anymore with memory and forgetfullness, those were awful I had more than one time when I got in my car and couldn't remember how to turn it on. I didn't forget my keys I forgot they needed to go in the ignition and sat there crying and scared to death. This sort of thing never happens any more.

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Strong yes for me on this. I also lost a great deal of hair. They also used to test my thyroid frequently sometimes numbers would be a bit off but not out of the normal ranges.

I agree these were not thyroid issues, they were gluten issues. Everything you said in your second paragraph could have come directly from what my many doctors said before I went gluten-free. I was told it was aging and symptoms of menapause. Interestingly enough my hair has grown back and much of it is brown not snow white, I have no problems anymore with memory and forgetfullness, those were awful I had more than one time when I got in my car and couldn't remember how to turn it on. I didn't forget my keys I forgot they needed to go in the ignition and sat there crying and scared to death. This sort of thing never happens any more.

While your symptoms went away with a gluten-free diet, the conclusion of the research was that women who had no forgetfulness still perceived that they did, simply because they expected this to happen to them.

I haven't experienced memory or concentration issues, and I attrribute this to my diet (in ways that are totally outside the scope of this board).

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While your symptoms went away with a gluten-free diet, the conclusion of the research was that women who had no forgetfulness still perceived that they did, simply because they expected this to happen to them.

I haven't experienced memory or concentration issues, and I attrribute this to my diet (in ways that are totally outside the scope of this board).

You may also not have a form of celiac that impacts you neurologically. That is not the case for myself and my family. If that is the case you are fortunate.

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You may also not have a form of celiac that impacts you neurologically. That is not the case for myself and my family. If that is the case you are fortunate.

Undoubtedly this is true. But just about all women I know in my age range complain about forgetfulness and lack of concentration. I remember my mother going from doctor to doctor about this. People just expect middle-aged women to be scatterbrained, and so they expect it of themselves. It certainly makes it hard to diagnose and treat real symptoms.

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Undoubtedly this is true. But just about all women I know in my age range complain about forgetfulness and lack of concentration. I remember my mother going from doctor to doctor about this. People just expect middle-aged women to be scatterbrained, and so they expect it of themselves. It certainly makes it hard to diagnose and treat real symptoms.

It is unfortunate that so many doctors and lay people just assume it is a normal part of aging. These are by the way real symptoms that should not be ignored or considered normal. I thought they were normal too until I was 'lucky' and had them resolve with my celiac diagnosis. But then again many think that heartburn and gas are normal also and many attribute diarrhea to 'nerves' and constipation to a lack of fiber. I still find it hard to believe myself all the 'normal' aging stuff that has now disappeared. My gyno even said my periods may return, although I don't know if I would welcome going through menapause twice. My DS told me the other day that I seem like I am aging backwards since my diagnosis 4 years ago. Seeing as I will be 50 next week that is not a comment I mind at all.

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The paper was really interesting. I am sending it to my neurologist and my primary doc. I have peripheral neuropathy and have not found any success with meds. Currently, I am trying Aquatic Therapy and accupunture. It is too early to tell if these will be successful. I have been gluten-free for 4 years and yet the neuropathy symptoms seem to have stayed the same. (I also have diabetis) From the article, does it sound like the neuropathy symptoms should have resolved themselves? I really could not find an answer to that question....though it seemed like tough reading to me. Also my celiac disease was fairly easy to spot since the villa were mostly flattened! I still have some malabsorbsion issues and the doc says I always will. Thanks for the information. I hope my doc takes the time to read it.

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This is by far the best article that I have seen since being diagnosed with Gluten Ataxia & Gluten Sensitivity. I have taken in many of this particular MD's publications to my docs -- they are all getting educated -- and taking it very seriously. My one neurologist said that, after finding my diagnosis, that he was able to diagnose two other patients VERY early on in their disease process, prior to the amount of disability which I have. He said that he was sorry that he didn't know about this when I came in (although he said within the first two visits that he thought I had some form of Celiac disease . . . . ). I told him that he didn't know that it could affect me only neurologically.

Oddly, the neurologist at Johns Hopkins and at the Mayo Clinic do not believe in this . . . . they said that this MD was inaccurate, and that neurological conditions do not exist in the absence of true Celiac Sprue (!!!) . . . Hence, they diagnosed me with "Conversion Disorder" -- a psychiatric disorder in which you develop physical symptoms as a result of an emotional trauma. This was, however, despite the Psychiatrist at Mayo saying that I had absolutely NO signs or symptoms of Conversion Disorder . . . . .

Thank you for posting this one . . . I'll certainly take it into my next neuro visit. He will be glad to get this. Oh, also . . . because I had gene markers present for SCA on my genetic profile, as well, he is going to work in concert with these same docs in the UK to send samples of my blood over there to assist in their ongoing (and some new) research studies. This guy is really great. I am so glad I found him here.

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Thank you RavenWoodGlass for that great article! I've read about people getting their CSF tested but didn't really pay attention to why. And it's great to know how bad the gluten can actually be. So we can't eat ANY "gluten-free" prepared foods? It's just so hard to believe.

Have any of you had any genetic testing or MRI's done?

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The paper was really interesting. I am sending it to my neurologist and my primary doc. I have peripheral neuropathy and have not found any success with meds. Currently, I am trying Aquatic Therapy and accupunture. It is too early to tell if these will be successful. I have been gluten-free for 4 years and yet the neuropathy symptoms seem to have stayed the same. (I also have diabetis) From the article, does it sound like the neuropathy symptoms should have resolved themselves? I really could not find an answer to that question....though it seemed like tough reading to me. Also my celiac disease was fairly easy to spot since the villa were mostly flattened! I still have some malabsorbsion issues and the doc says I always will. Thanks for the information. I hope my doc takes the time to read it.

What it says in the article is that for some patients, the symptoms of neuropathy do not improve, but at least the condition stabilizes.

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Thank you RavenWoodGlass for that great article! I've read about people getting their CSF tested but didn't really pay attention to why. And it's great to know how bad the gluten can actually be. So we can't eat ANY "gluten-free" prepared foods? It's just so hard to believe.

Have any of you had any genetic testing or MRI's done?

I haven't had any genetic testing but I have had MRIs and spinal taps because they thought I had MS. They found white matter lesions but my neuro said they were just UBO's and that some folks have them and they mean nothing. I also had electromylograms where they stick needles in your muscles and measure the muscles reaction to electrical stimuli. These basically showed my right leg was dead with almost no recordable response. I was still told my ataxia, movement problems and parasthesias were in my head. How I managed to mentally control that machine, well who knows. I was very fortunate, I had ataxia since childhood and the last thing I expected going gluten-free was to get my reflexes (absent since age 5), balance and feeling back. Many do not but my experience at least shows it to be possible in some cases. I had a hard time finding gluten-free stuff when first diagnosed and with the exception of ice cream ate very little processed food. Stuck with meat, veggies and fruit, rice and potatoes. I don't know if that helped me or not, I just know I am happy to be able to walk unaided again. It took a long time to heal and it still seems a miracle to me.

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Wow, this is so timely! Thanks so much for this article, ravenwoodglass. I'm going to my first appointment this aft with my new neurologist after I had a sudden TIA last week (at least, this is what the ER docs suspected it was) and I will bring this along!

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Does anyone else get hypthyroid type of symptoms from glutening? I felt hypothyroid for a long, long time. Cold, skimpy eye-brows, needing lots of sleep, brainfog, forgetfulness, but since being gluten-free and now dairy free for almost a year those have gone away. Just curious because I run into a lot of women with these same symptoms yet normal thyroid levels and I'm wondering if it might be related.

Actually, you may have had hypothyroid caused by gluten malabsorption. The main hormone that the thyroid makes is T4, but it needs to be converted to T3 in order to work properly in the cells. There are several nutrients needed to convert T4 to T3, like iron, some of the B vitamins, even cholesterol, etc. which are often lacking in gluten sensitive people because of malabsorption. So, your thyroid can be fine, and producing properly, but your cells can be hypothyroid because they can't convert the T4. That would give you the hypothyroid symptoms, but since your actual thyroid is fine, once you start absorbing the nutrients necessary to convert, then the hypothyroid symptoms would clear up. The thyroid does make a small amount of T3, but not enough. So thyroid tests might still show some T3 in your system, and proper thyroid function, but there just isn't enough T3 getting into the cells.

Debbie

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Actually, you may have had hypothyroid caused by gluten malabsorption. The main hormone that the thyroid makes is T4, but it needs to be converted to T3 in order to work properly in the cells. There are several nutrients needed to convert T4 to T3, like iron, some of the B vitamins, even cholesterol, etc. which are often lacking in gluten sensitive people because of malabsorption. So, your thyroid can be fine, and producing properly, but your cells can be hypothyroid because they can't convert the T4. That would give you the hypothyroid symptoms, but since your actual thyroid is fine, once you start absorbing the nutrients necessary to convert, then the hypothyroid symptoms would clear up. The thyroid does make a small amount of T3, but not enough. So thyroid tests might still show some T3 in your system, and proper thyroid function, but there just isn't enough T3 getting into the cells.

Debbie

Debbie--Thanks for explaining that. I also had the hypothyroid symptoms, that were improved by the gluten-free diet, but not eliminated. I recently had a new set of blood work done, including TSH, T3 and T4. Everything was normal.

Ravenwood--That was a great article. I have neuropothy that improved to a point on the diet, but has since stayed the same. I imagine this is where it wll stay. I was having problems putting my foot down in the right place, tingling, numbness, vision issues and sensing everything was at an angle. My diet is about the same as yours--minus the rice. I feel it's definately worth it for the better sense of control I feel over my body.

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I haven't had any genetic testing but I have had MRIs and spinal taps because they thought I had MS. They found white matter lesions but my neuro said they were just UBO's and that some folks have them and they mean nothing. I also had electromylograms where they stick needles in your muscles and measure the muscles reaction to electrical stimuli. These basically showed my right leg was dead with almost no recordable response. I was still told my ataxia, movement problems and parasthesias were in my head. How I managed to mentally control that machine, well who knows. I was very fortunate, I had ataxia since childhood and the last thing I expected going gluten-free was to get my reflexes (absent since age 5), balance and feeling back. Many do not but my experience at least shows it to be possible in some cases. I had a hard time finding gluten-free stuff when first diagnosed and with the exception of ice cream ate very little processed food. Stuck with meat, veggies and fruit, rice and potatoes. I don't know if that helped me or not, I just know I am happy to be able to walk unaided again. It took a long time to heal and it still seems a miracle to me.

It sounds like you went through quite an ordeal, glad to know that you have partially recovered from eating gluten-free and that you can walk by yourself! Wow, what a blessing that is. In your spinal taps did they find elevated antigliadin antibodies? My neuropathy started in early high school with slight tremors in the arms when exerting strength. Now when I do abdominal or lat pull-down exercises I notice tremors. But those sometimes go away. Do you know if that has to do with the Purkinje cells being damaged?

I'm excited about that new Zonulin antagonist AT-1001 under development!! Have you heard of it?

http://www.celiac.com/st_prod.html?p_prodid=1251

I have a strong feeling that my BBB is too porous and lets in stuff that shouldn't get in there.

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Actually, you may have had hypothyroid caused by gluten malabsorption. The main hormone that the thyroid makes is T4, but it needs to be converted to T3 in order to work properly in the cells. There are several nutrients needed to convert T4 to T3, like iron, some of the B vitamins, even cholesterol, etc. which are often lacking in gluten sensitive people because of malabsorption. So, your thyroid can be fine, and producing properly, but your cells can be hypothyroid because they can't convert the T4. That would give you the hypothyroid symptoms, but since your actual thyroid is fine, once you start absorbing the nutrients necessary to convert, then the hypothyroid symptoms would clear up. The thyroid does make a small amount of T3, but not enough. So thyroid tests might still show some T3 in your system, and proper thyroid function, but there just isn't enough T3 getting into the cells.

Debbie

I don't have a thyroid any longer, had RAI many years ago.

No, I went the route of trying some Armour thyroid, it made me feel awful. I had hyper and hypo symptoms at the same time. I was a wee bit low on free T3. But since I've been off gluten and dairy I don't have those hypo symptoms at all and I got rid of the armour and just take the synth T4. I kept trying to find a dose of armour or armour + T4 that felt good, but it just didn't work. Finally I started just taking a smidge of armour every other day, then every 3 days, finally I just stopped altogether and realized I didn't have the symptoms any longer.

My theory is that sometimes neurological gluten symptoms look a lot like hypothyroid symptoms. I talk to women all the time on the internet who have perfectly normal TSH, FT3 and FT4 numbers but they feel hypothyroid. Actually, it could also be my casein intolerance. I didn't get real relief until I got off casein too, hard to say.

I should get my FT3 tested again just out of curiousity. Hmmm... should I pay $75 just to satisfy my curiousity? I'll have to ponder that awhile.

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It sounds like you went through quite an ordeal, glad to know that you have partially recovered from eating gluten-free and that you can walk by yourself! Wow, what a blessing that is. In your spinal taps did they find elevated antigliadin antibodies? My neuropathy started in early high school with slight tremors in the arms when exerting strength. Now when I do abdominal or lat pull-down exercises I notice tremors. But those sometimes go away. Do you know if that has to do with the Purkinje cells being damaged?

I'm excited about that new Zonulin antagonist AT-1001 under development!! Have you heard of it?

http://www.celiac.com/st_prod.html?p_prodid=1251

I have a strong feeling that my BBB is too porous and lets in stuff that shouldn't get in there.

Hi, They weren't looking for the antigliadan antibodies when they did the taps. They were looking for the markers for MS, which they did not find. Hopefully someone will be able to answer the Purkinje question because I don't know the answer to that.

I am actually very fearful of the Zonulin antagonist mainly because it will only act on the gluten that gets into the gut. It won't prevent the crossing of the mucosal tissue in the mouth. IMHO this is going to be a drug that ends up being misused by many newly diagnosed celiacs after it is available as Doctors will give them a pill rather than a diet sheet. I could see it being helpful for cross contamination issues but by the time food gets to the tummy the poison is already in the bloodstream and on it's way to the brain and other organs. If US GIs would start using the less invansive form of testing by using suppositories and rectal biopsy maybe US medicine would have the proverbial light bulb go off and (although lots will hate me for saying this :huh::ph34r: ) it will not get FDA approval until this issue is addressed.

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I could see it being helpful for cross contamination issues but by the time food gets to the tummy the poison is already in the bloodstream and on it's way to the brain and other organs.

"About Zonulin

Zonulin is a signaling protein that transiently and reversibly opens the tight junctions ("tj") between the cells of epithelial and endothelial tissues such as the intestinal mucosa, blood brain barrier and pulmonary epithelia."

Wouldn't a Zonulin antagonist prevent gluten from crossing over the blood brain barrier by preventing the "tight junctions" from opening? Does gluten in the blood stream cause havoc to areas other than the brain and spinal column?

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"About Zonulin

Zonulin is a signaling protein that transiently and reversibly opens the tight junctions ("tj") between the cells of epithelial and endothelial tissues such as the intestinal mucosa, blood brain barrier and pulmonary epithelia."

Wouldn't a Zonulin antagonist prevent gluten from crossing over the blood brain barrier by preventing the "tight junctions" from opening? Does gluten in the blood stream cause havoc to areas other than the brain and spinal column?

It would be great if it did prevent it from going into the blood stream, that would be fantastic. Having it in the blood stream had in my case caused inflammation in the muscles and joints and also destruction of my pancreatic tissue and has given me the heart that looks like I ate nothing but junk food all my life. In my twin brothers case it caused his liver to be destroyed, I will be 50 Monday, he will still be 15. Once the body gets into it's fight against the gluten the antibodies that are produced can attack the whole sustem leading to many of the autoimmune disorders. If Zonulin can really prevent it from crossing the mucosal barriers and getting into the blood I will be doing my happy dance all the way to a restaurant. :) When it comes on the market I won't be the first to try it but I won't be the last either. All we can do is hope and also hope that doctors don't forget to tell people that they would still need the diet.

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Okay, here it is, as related to my by my neurologist(s):

Perkinje cells, which are the primary component of the Cerebellum, rely on gliosis for their metabolism. Because of that, they have a protein which is remarkably similar to Gliadin in their RNA. When your body begins the autoimmune process, and continues to include Antigliadin antibodies, they begin to mistake the proteins on the Perkinje cells for Gliadin . . . thereby destroying them. Because they are destroyed somewhat randomly, it causes numerous "short-circuits" in the entire neurological system -- as the cerebellum controls virtually EVERY bodily process.

Additionally, the retina contains a proportionally large amount of Perkinje cells -- which may cause the person with high Antigliadin antibody levels to begin to develop night blindness and/or color blindness.

Having all of these, I believe that this is the truth. Because they thought that I had MS, I, too have endured spinal taps, MRI's which are too numerous to count, multiple EMG's -- although it's funny -- my neuropathy is so bad that I don't feel anything during the tests -- I guess that's an upside to having no feeling in your lower legs(?). I have autonomic dysfunction presently . . . which includes decreased intestinal motility (think: impaction every 7-10 days), no sweating . . . but the fluid stays in my body, so I have ankles the size of calves -- maybe even thighs, some days because my brain doesn't tell my vessels to bring it BACK UP to my lymphatic system, blood pressure that can go from 90/ they can't get a diastolic # --even the MD -- to 165/105 within a course of 15 minutes, without compensation in my heart rate, and what they thought were panic attacks . . . . which we now know is my heart rate skyrocketing for no apparent reason. When this becomes a permanent condition, and I don't have days that things are somewhat "normal" (aka, I actually sweat), then they will call it Autonomic Failure. All of this because the Perkinje cells in my cerebellum were destroyed by gluten -- and the antibodies were undetected for WAY too long . . . .

Such is life, and I go on from here . . . but if I can speak at any functions, write any articles to submit to journals for publication, whatever it takes to get the word out, I will. Without waxing philosophic, I DO believe there is a reason for this happening to me. I am working at finding out what that reason is. One, for sure, is that I am VERY secure in my marriage. My husband could have bolted at any time. I even OFFERED to divorce him so that he wouldn't be the "bad guy" . . . and he said the most loving, kind things that I have ever heard. So, I know that, we're in this -- together -- for the long-haul. There are other things that I must learn, and am pondering that on a daily basis. I don't like this disease -- in fact, I hate it -- but I refuse to let it take the enjoyment out of my life. (Sorry to get philosophical -- I seem to be doing that more & more these days . . . didn't mean to inflict it on you guys)

Hugs to you,

Lynne

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((((HUGS)))) to you Lynne!

I admire your courage and patience!!! Thanks for being here, you've already helped me tremendously with my tendonitis in your email! And as far as I'm concerned, your philosophy is great. You continue to serve others even when you are in the greatest need. What a great example for all.

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