Recovery Time Question For celiac disease Induced Myoclonus

[Korwyn]

For those who deal (or dealt with) celiac disease and GI triggered myoclonus and panic attacks, how long after going gluten-free did it take for those symptoms to fade to nothing (if they did) or to a stable level? My myoclonus didn't start until my celiac disease went full blown, and it is also brought on by soy and possibly sugar. It's been almost four months now that I've been gluten-free and it is somewhat frustrating, though I'm so grateful for the healing that I've had so far. I'm no longer (most of the time) a basket case mentally and am having far fewer anxiety and panic attacks.

[sylviaann]

For those who deal (or dealt with) celiac disease and GI triggered myoclonus and panic attacks, how long after going gluten-free did it take for those symptoms to fade to nothing (if they did) or to a stable level? My myoclonus didn't start until my celiac disease went full blown, and it is also brought on by soy and possibly sugar. It's been almost four months now that I've been gluten-free and it is somewhat frustrating, though I'm so grateful for the healing that I've had so far. I'm no longer (most of the time) a basket case mentally and am having far fewer anxiety and panic attacks.

Hi there,

I can totally relate to your myoclonus!! I started the gluten-free diet last October 2007 but it took me six months to discover many products I was using or consuming were not truly gluten-free or cross contaminated. I had already been suffering from myoclonus for almost two years before I returned to my Celiac Specialist for a consultation. Long story..but I had previously tested negative (biopsy and blood work in 1999).

Anyway, I am still experiencing myoclonus whenever I try to sleep (day or night). I am at the pint where I am going to stop all gluten-free grains for a few weeks and see if I can get my symptoms to subside. I did this test last April for several days and it worked for three nights. I have also stopped dairy, soy, and corn. Chocolate and caffeine also appear to bother me. I also have ulcerative colitis. Please feel free to contact me as I know how miserable and frustrated I have been dealing with this. How did you obtain your diagnosis with secondary myoclonus?

Talk to you soon,

Sylviaann

[sylviaann]

For those who deal (or dealt with) celiac disease and GI triggered myoclonus and panic attacks, how long after going gluten-free did it take for those symptoms to fade to nothing (if they did) or to a stable level? My myoclonus didn't start until my celiac disease went full blown, and it is also brought on by soy and possibly sugar. It's been almost four months now that I've been gluten-free and it is somewhat frustrating, though I'm so grateful for the healing that I've had so far. I'm no longer (most of the time) a basket case mentally and am having far fewer anxiety and panic attacks.

Hi there,

I was wondering if you notice a worsening of your myoclonus if you drink a beverage high in suger a few hours prior to bedtime? I drank Welch's white grape juice (diluted with water) last night with dinner and my symptoms worsened at bedtime. I also have several other "suspects" on my list but was wondering if this has ever happened to you?

Thanks a million,

Sylviaann

[Korwyn]

Hi there,

I was wondering if you notice a worsening of your myoclonus if you drink a beverage high in suger a few hours prior to bedtime? I drank Welch's white grape juice (diluted with water) last night with dinner and my symptoms worsened at bedtime. I also have several other "suspects" on my list but was wondering if this has ever happened to you?

Thanks a million,

Sylviaann

Hi Sylvia,

Oh yes. Peppers (nightshade), soy, gluten, sugar, corn-syrup, and starchy carbs are triggers. Soy, peppers, and the processed sugars are the fastest and worst. Non-processed fructose (fresh fruit) seems to be ok in moderation, but too much really sweet fruit does trigger it however it subsides in a couple of days. Corn-syrup and refined sugar produce moderate response that lasts for several days, and soy produces a horrible response along with panic, anxiety, and hot-flashes which takes 1 1/2 to 2 weeks to subside. The nightshades (especially the peppers side of the family) are a recent discovery in the last three weeks. We only use raw honey, pure maple syrup (B grade, A grade is WAY too expensive), and organic agave syrup as our sweeteners, even in our baking.

[sylviaann]

Hi Sylvia,

Oh yes. Peppers (nightshade), soy, gluten, sugar, corn-syrup, and starchy carbs are triggers. Soy, peppers, and the processed sugars are the fastest and worst. Non-processed fructose (fresh fruit) seems to be ok in moderation, but too much really sweet fruit does trigger it however it subsides in a couple of days. Corn-syrup and refined sugar produce moderate response that lasts for several days, and soy produces a horrible response along with panic, anxiety, and hot-flashes which takes 1 1/2 to 2 weeks to subside. The nightshades (especially the peppers side of the family) are a recent discovery in the last three weeks. We only use raw honey, pure maple syrup (B grade, A grade is WAY too expensive), and organic agave syrup as our sweeteners, even in our baking.

This is very interesting! I stopped eating peppers months ago because I read that the waxes sparyed on many fruits and vegetables contain gluten. I only eat organic apples, regular bananas, grapes, blueberries and melon (pre-cut..I wash it). I also canot eat Agave because it causes me to have a lower "GI reaction". I have only made my myoclonus connection with ingestion of gluten (including shampoos), antihistimines (I stay far away from these), dairy, and possibly sugar in the evening. I have been trying to figure out if I am intolerant to the gluten-free pasta (PPM's may be too high for me) or is it the starch (as you mentioned)? I am more inclined to think I cannot tolerate the PPM level as I am extremely sensitive. How long have you had myoclonus? I started suffering from it almost three years ago but did not make the gluten connection for 1.5 years, so I was absolutely miserable..non functional for a long time. When you were tested for Celiac Disease, did your specialist test you for an IGA deficiency? I do not have a definitive diagnosis but my Celiac Speciialist is very concerned and suspicious that I may have an IGA deficiency (which results in negative blood labs). My symptoms for the past 2.6 years are very indicative of either celiac or gluten sensitivity.

I also reacted to eating a Lays potato chip product last April....it was hell for several nights after that! My father had pamcreactic cancer (survived five years) and I believe he was probably a latent Celiac. I was diagnosed with ulcerative P. 12 years ago and my Aunt had Chrone's Disease.

Thank you for sharing your experience!

Sylviaann

[Korwyn]

This is very interesting! I stopped eating peppers months ago because I read that the waxes sparyed on many fruits and vegetables contain gluten. I only eat organic apples, regular bananas, grapes, blueberries and melon (pre-cut..I wash it). I also canot eat Agave because it causes me to have a lower "GI reaction". I have only made my myoclonus connection with ingestion of gluten (including shampoos), antihistimines (I stay far away from these), dairy, and possibly sugar in the evening. I have been trying to figure out if I am intolerant to the gluten-free pasta (PPM's may be too high for me) or is it the starch (as you mentioned)? I am more inclined to think I cannot tolerate the PPM level as I am extremely sensitive. How long have you had myoclonus? I started suffering from it almost three years ago but did not make the gluten connection for 1.5 years, so I was absolutely miserable..non functional for a long time. When you were tested for Celiac Disease, did your specialist test you for an IGA deficiency? I do not have a definitive diagnosis but my Celiac Speciialist is very concerned and suspicious that I may have an IGA deficiency (which results in negative blood labs). My symptoms for the past 2.6 years are very indicative of either celiac or gluten sensitivity.

I also reacted to eating a Lays potato chip product last April....it was hell for several nights after that! My father had pamcreactic cancer (survived five years) and I believe he was probably a latent Celiac. I was diagnosed with ulcerative P. 12 years ago and my Aunt had Chrone's Disease.

Thank you for sharing your experience!

Sylviaann

Most of what we buy fruitwise are things we peel or cut up and we get the bagged cheap apples. They aren't cosmetically appealing so they don't polish and wax them. Plus the Gala and Fuji apples have much more actual nutritional content than the 'Red Delicious' which are basically just sugar factories. I'm also quite sensitive. I had a reaction to Lay's Classic a couple months ago which I could only attribute to CC. I don't have a Celiac specialist, but my PCP (Primary Care Provider) has been extremely good about working with me and I have been doing much of the research myself and bringing journal articles and information to her. My myoclonus started the same time my celiac disease went nuts, which was just about a year ago. I've had many symptoms for the last 20 years but all misdiagnosed and mis-treated. I had a severe bout of C.Diff, which was apparently the last straw and my system just collapsed. In 8 months I went from muddling alone to non-functional with a whole variety of things. My celiac disease presents through neuro, psychological, and muscular primarily. Some of the GI and respiratory that I'd been fighting for years turned out to be the dairy issue. I do not have an IgA deficiency, though my blood work was negative. The final thing that turned it up was when I gave my Enterolab results to my Dr, along with a copy of my Dad's results and his GI blood work which did come back positive. The Enterolab + the dramatic health response to removal of gluten and dairy (and eventually soy, et al) were enough to convince my Dr.

The #1 worst trigger for me though is soy. Even soy lecithin in chocolate, some almond milk, dressings, seems to be enough to either set it off or keep it running at a continuously low level. Sugar seems to especially aggravate RLS in the evenings too.

[sylviaann]

Most of what we buy fruitwise are things we peel or cut up and we get the bagged cheap apples. They aren't cosmetically appealing so they don't polish and wax them. Plus the Gala and Fuji apples have much more actual nutritional content than the 'Red Delicious' which are basically just sugar factories. I'm also quite sensitive. I had a reaction to Lay's Classic a couple months ago which I could only attribute to CC. I don't have a Celiac specialist, but my PCP (Primary Care Provider) has been extremely good about working with me and I have been doing much of the research myself and bringing journal articles and information to her. My myoclonus started the same time my celiac disease went nuts, which was just about a year ago. I've had many symptoms for the last 20 years but all misdiagnosed and mis-treated. I had a severe bout of C.Diff, which was apparently the last straw and my system just collapsed. In 8 months I went from muddling alone to non-functional with a whole variety of things. My celiac disease presents through neuro, psychological, and muscular primarily. Some of the GI and respiratory that I'd been fighting for years turned out to be the dairy issue. I do not have an IgA deficiency, though my blood work was negative. The final thing that turned it up was when I gave my Enterolab results to my Dr, along with a copy of my Dad's results and his GI blood work which did come back positive. The Enterolab + the dramatic health response to removal of gluten and dairy (and eventually soy, et al) were enough to convince my Dr.

The #1 worst trigger for me though is soy. Even soy lecithin in chocolate, some almond milk, dressings, seems to be enough to either set it off or keep it running at a continuously low level. Sugar seems to especially aggravate RLS in the evenings too.

I buy the gala and fuji apples too I grew up in a medical family and like you, was researching extensively for two years when I presented the myoclonus theory to my Celiac Specialist in Atlanta last year. My primary symptoms are GI and the myoclonus. Are you able to eat the gluten free breads, flours and pasta? Is the gluten content (ppms) too high for you and/or do they exacerbate your myoclonus? I ate chicken marsala (rolled in Argo cornstarch and used gluten-free Marsala cooking wine) last night and am trying to determine whether this was a mistake. I fell asleep but woke up several hours later. I had trouble going back to sleep and then had small body jerks that kept me up. I love chocolate but will only eat very small amounts because of the caffeine. I will not eat soy or soy lecithin either. Did you ever have a biopsy? I know biospies don't always reveal villi damage..unless the disease has progressed to a severe state. I never had a genetic test because my doctor advised me that 40% of the population is carrying the celiac gene. Only a small% of those individuals will have the disease triggered in their lifetime. Based on my symptoms and family history, she could tell I have Celiac or gluten sensitivity.

One last question, do you take vitamins? I saw a dietician a few months back and she tested me (Metametrix Organic Acids test) for nutritional deficiencies. I am supposed to be taking several country Life vitamins but started wondering if I was reacting to them (possible CC). I am trying to slowly re-introduce them back into my diet. I currently take Metagenics Ultraclear Plus (chemical detoxification and vitamin B's). As super sensitive friend of mine swears that she reacted to Country Life products.

Sorry to ramble..

Thanks again,

Sylviaann

[sylviaann]

Most of what we buy fruitwise are things we peel or cut up and we get the bagged cheap apples. They aren't cosmetically appealing so they don't polish and wax them. Plus the Gala and Fuji apples have much more actual nutritional content than the 'Red Delicious' which are basically just sugar factories. I'm also quite sensitive. I had a reaction to Lay's Classic a couple months ago which I could only attribute to CC. I don't have a Celiac specialist, but my PCP (Primary Care Provider) has been extremely good about working with me and I have been doing much of the research myself and bringing journal articles and information to her. My myoclonus started the same time my celiac disease went nuts, which was just about a year ago. I've had many symptoms for the last 20 years but all misdiagnosed and mis-treated. I had a severe bout of C.Diff, which was apparently the last straw and my system just collapsed. In 8 months I went from muddling alone to non-functional with a whole variety of things. My celiac disease presents through neuro, psychological, and muscular primarily. Some of the GI and respiratory that I'd been fighting for years turned out to be the dairy issue. I do not have an IgA deficiency, though my blood work was negative. The final thing that turned it up was when I gave my Enterolab results to my Dr, along with a copy of my Dad's results and his GI blood work which did come back positive. The Enterolab + the dramatic health response to removal of gluten and dairy (and eventually soy, et al) were enough to convince my Dr.

The #1 worst trigger for me though is soy. Even soy lecithin in chocolate, some almond milk, dressings, seems to be enough to either set it off or keep it running at a continuously low level. Sugar seems to especially aggravate RLS in the evenings too.

Greetings Korwyn!!!

I want to thank you for posting about your symptoms and experience with myoclonus. You have helped me to solve a MAJOR piece of the puzzle causing my myoclonus symptoms. I was conducting non-stop extensive research this past week after speaking to another celiac friend who also has myoclonus. I discovered that my myoclonus is triggered by naturally occuring glutamates, as well as gluten and dairy. I reviewed my food diary and I have been "poisoning" myself for months. Everytime I ate shrimp, Boar's head Deli meats, Boar's Head hotdogs, most meats, Potato chips, tomato sauce, tomatoes, soy products, mushrooms, scallops, chicken broth, etc. I experienced body jerks all night. Aspartate (artificial sweetners) is also one of the worst glutamates!! All of these are considered "Excitotoxins" to the brain. Many autistic chidren also have problems with foods containing naturally ocurring glutamates. I used Aquafesh White trays for the first time two weeks ago and had horrible myoclonus all night!!! I discovered this past week that it contains sucralose (artifical Sweetener)!

Google naturally occuring glutamates and you will find numerous websites related to MSG and the associated products. If you keep a food diary, check it out and see if you make the connection. PLease feel free to contact me if you any links to websites.

Many thanks again for making me dig harder to solve this frustrating mystery..now I have to limit my diet even more but at least I know what is causing the myoclonus!!!

Sylvia Ann

[Korwyn]

I buy the gala and fuji apples too I grew up in a medical family and like you, was researching extensively for two years when I presented the myoclonus theory to my Celiac Specialist in Atlanta last year. My primary symptoms are GI and the myoclonus. Are you able to eat the gluten free breads, flours and pasta? Is the gluten content (ppms) too high for you and/or do they exacerbate your myoclonus? I ate chicken marsala (rolled in Argo cornstarch and used gluten-free Marsala cooking wine) last night and am trying to determine whether this was a mistake. I fell asleep but woke up several hours later. I had trouble going back to sleep and then had small body jerks that kept me up. I love chocolate but will only eat very small amounts because of the caffeine. I will not eat soy or soy lecithin either. Did you ever have a biopsy? I know biospies don't always reveal villi damage..unless the disease has progressed to a severe state. I never had a genetic test because my doctor advised me that 40% of the population is carrying the celiac gene. Only a small% of those individuals will have the disease triggered in their lifetime. Based on my symptoms and family history, she could tell I have Celiac or gluten sensitivity.

One last question, do you take vitamins? I saw a dietician a few months back and she tested me (Metametrix Organic Acids test) for nutritional deficiencies. I am supposed to be taking several country Life vitamins but started wondering if I was reacting to them (possible CC). I am trying to slowly re-introduce them back into my diet. I currently take Metagenics Ultraclear Plus (chemical detoxification and vitamin B's). As super sensitive friend of mine swears that she reacted to Country Life products.

Sorry to ramble..

Thanks again,

Sylviaann

Hi Sylvia - I missed this response somehow. I can eat the gluten-free flours, but we prepare our own bread. I don't have a problem with DeBoles Rice Pasta, or Tinkyada or Mrs. Leepers, but I have had issues with some of the other brands. I found out by the way that cornstarch makes me violently throw up! I have found it virtually impossible to find any kind of chocolate that doesn't have soy lecithin in it I did not have a biopsy because I could not go back on gluten. My Dr. took my Enterolab results along with my dietary response and improvement as a definitive diagnosis.

I do take a lot of vitamins. I have had no issues with Nature's Way vitamins, and VitaminShoppe is VERY good about their gluten testing, so that is where I get my Flax oil from. However as my system has began healing and I'm actually absorbing nutrients from my foods, I have had to cut back on the vitamins as I was actually overdosing on a number of them.

[Korwyn]

Greetings Korwyn!!!

I want to thank you for posting about your symptoms and experience with myoclonus. You have helped me to solve a MAJOR piece of the puzzle causing my myoclonus symptoms. I was conducting non-stop extensive research this past week after speaking to another celiac friend who also has myoclonus. I discovered that my myoclonus is triggered by naturally occuring glutamates, as well as gluten and dairy. I reviewed my food diary and I have been "poisoning" myself for months. Everytime I ate shrimp, Boar's head Deli meats, Boar's Head hotdogs, most meats, Potato chips, tomato sauce, tomatoes, soy products, mushrooms, scallops, chicken broth, etc. I experienced body jerks all night. Aspartate (artificial sweetners) is also one of the worst glutamates!! All of these are considered "Excitotoxins" to the brain. Many autistic chidren also have problems with foods containing naturally ocurring glutamates. I used Aquafesh White trays for the first time two weeks ago and had horrible myoclonus all night!!! I discovered this past week that it contains sucralose (artifical Sweetener)!

Google naturally occuring glutamates and you will find numerous websites related to MSG and the associated products. If you keep a food diary, check it out and see if you make the connection. PLease feel free to contact me if you any links to websites.

Many thanks again for making me dig harder to solve this frustrating mystery..now I have to limit my diet even more but at least I know what is causing the myoclonus!!!

Sylvia Ann

Wow! Thank you. I will be looking into that some more. Have you read the 'GAPS' diet book? It is fascinating. Open Original Shared Link - She specalizes in dietary issues relating to various psychological/neurological issues.

[sylviaann]

Wow! Thank you. I will be looking into that some more. Have you read the 'GAPS' diet book? It is fascinating. Open Original Shared Link - She specalizes in dietary issues relating to various psychological/neurological issues.

Hi Korwyn,

I will definitely chek out the gaps diet but now I have discovered yet Another possible trigger for my myoclonus...foods and cosmetics that contain salicyalates. I have been taking two medications for my chronic GI problem for 12 years and they both contain salicylates. I had been suspicious that I was suffering an adverse reaction (or hypersensitivity) for almost a year. I started conducting more research, reviewed my diary again and had another "Wow" moment". I have a serious problem now as my food, GI meds and cosmetic options are now extremely limited. I was reacting when I ate these foods (which are all high in salicylates: grapes, apples, strawberries, blueberries, melon, a few spices (but almost all spices contain very high levels). Mushrooms, Tomato sauces (and many sauces), many nuts, honey and toothpaste are also high in salicylates. I am also fairly certain that my coppertone sunblock aggravated my myoclonus. Many vegetables are also very high in Salicylates including sweet potatoes and broccoli. I am having a consultation with my specialist in Atlanta today as I am greatly concerned. I would like to pursue IGg4 delayed Food Intolernace testing asap so I can really know what is going on. I would like to know if this is happening due to leaky gut or what? I am so hungry and losing more weight (don't need to) because I am only eating small amounts of chicken, fish(only certain types), green beans, pears, eggs, organic bacon, iceberg lettuce with salt, water and cranberry juice.

Apparently many people have cross- food group sensitivites (i.e. if you have problems with sulfites-you may have problems with salicylates).

here are a few links:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Talk to you soon,

Sylvia Ann

[Korwyn]

I am having a consultation with my specialist in Atlanta today as I am greatly concerned. I would like to pursue IGg4 delayed Food Intolernace testing asap so I can really know what is going on. I would like to know if this is happening due to leaky gut or what? I am so hungry and losing more weight (don't need to) because I am only eating small amounts of chicken, fish(only certain types), green beans, pears, eggs, organic bacon, iceberg lettuce with salt, water and cranberry juice.

Wow. Let me know how it goes. I know that after about the first 6 weeks on the GAPS diet (I didn't include any of my known food sensitivities) I started testing certain foods limited foods that I had been reacting to before and found that I could tolerate small amounts of some of them which was encouraging as I was able to add back in small amounts of homemade goat's milk yogurt every couple of days which has been helping my GI a lot.

After a over solid week of nothing but the following....

(Veggies - organic) Lettuce, Kale (Cale), Swiss Chard, Collard Greens, Carrots

(Fruit - organic) Raspberries, Apples, Nectarines, Banannas

(Meat - locally raised and/or organic) Chicken, Pork, Beef

(Other - homemade) Sauerkraut, Goat milk yogurt

(Liquids - organic where applicable) Water, 100% Pomegranate Juice, Almond Milk, Hemp Milk, Brown Rice Milk, Hazelnut Milk

....Other than mild RLS just before bed I have had two consecutive days where I only recorded two myoclonic episodes!! In my thigh, and in my arm! Four in two days!

My weight is holding at 219 now. I've lost over 40# since April which is good, but I was worried about whether I could get it under control.

[Korwyn]

Sylvia, I was wondering if everything went OK with your consultation? Haven't seen any posts from you since that. :/

[sylviaann]

Sylvia, I was wondering if everything went OK with your consultation? Haven't seen any posts from you since that. :/

I have been in Savannah since last Sept and will be returning to Florida in a few days....I became extremely ill and almost ended up in the hospital after stopping my GI meds (which contained salicylates). I was on steriods for 2.5 months and recently weaned off of them. I saw an allergist in Savannah who treated my sister, nephew and mother for various allergy problems. I advised him of my three year ,"14 doctor" myoclonus from hell reactions. I also informed him of my diary and shared the long list of foods, GI meds, and cosmetics that appeared to be causing my myoclonus, agitation, GI problems, blurry vision, etc. He concurred with me that I indeed have a major intolerance to salicylates. I had a RAST blood test for wheat, milk, dogs, cats, soy and the results wre negative. I have been on a low salicyalte diet since late Sept and my myoclonus has greatly improved (I am sleeping much better!!). However, I still react to Benzoates (a member of the salicylate family) which are in almost every cosmetic item, cold meds, ginger ale, etc.) and sulphites (which are in everything!-yikes!). My allergist ids going to patch test me for these items (preservatives) in Feb. The patch tests will measure delayed reactions..which is what I have been having. I have seen additional reactions during the past few months (face flushing from eating a peeled yellow delicious apple yesterday and I cannot inhale cosmetic or medications containing sals or sulpites...really bothers my throat and creates a horrible taste in my mouth). I have a new GI doctor in Savnnah and he ordered a compounded liquid treatment NOT taken orally (actually a very small dose of steriods) for my ulcerative colitis and it seems to be working. I will also start taking Low Dose Naltrexone to hopefully maintain remission. I had a special blood lab last September that is supposed to be 92% specific to determine if a patient has IBD. Guess what..my test results revealed that My pattern was not consistent with IBD!!!. Salicylate intolerance is extremely difficult to diagnose and the only way to determine it is to keep a detailed diary (food, meds, events-exposures) and correlate the delayed reactions to what you have eaten. Maifestation sof salicyakte intolerance include colitis, asthma (my sister and her son), "D", uticartia/hives. Myoclonus is not specifically mentioned but I know that salicyakte toxicity can cause myoclonus and I found an article about a two year old boy who had myoclonus and it turn ed out that he had a severe salicylate intolerance (fruits).

How have you been doing?

[BigDogz]

Boy, am I glad that I found this thread! Before I went gluten-free, whenever I was quiet, I found I was having myoclonic muscle spasms. If I was sitting watching TV or stretched out on the couch with a good book, the muscle spasms in my arms and legs were so frequent and so intense that I looked like I was in the throes of a seizure. The ones I experienced in my sleep were so hard and violent that they actually hurt!

The twitches were disconcerting and uncomfortable but the one that drove me most nuts was the nearly continuous spasming of my eyelids. It would go on for hours at a time, stop for 15 or 20 minutes, start right back up and twitch for hours again! Looking back, I think I was having the same twitches when I was up, moving around, but they weren't as noticeable to me as when I was standing, sitting or lying quietly.

The reason why this thread is so interesting to me is that I noticed the past few weeks that occasional, mild muscle twitches had returned. I assumed that I have run into some "hidden" gluten somewhere and that was the cause. Now I'm wondering if there isn't something else, like the things you guys have listed, that's stirring things up. I think I just might start a food diary and see if I can find a pattern of twitches matching up to certain foods.

Thanks, guys!

[sylviaann]

Boy, am I glad that I found this thread! Before I went gluten-free, whenever I was quiet, I found I was having myoclonic muscle spasms. If I was sitting watching TV or stretched out on the couch with a good book, the muscle spasms in my arms and legs were so frequent and so intense that I looked like I was in the throes of a seizure. The ones I experienced in my sleep were so hard and violent that they actually hurt!

The twitches were disconcerting and uncomfortable but the one that drove me most nuts was the nearly continuous spasming of my eyelids. It would go on for hours at a time, stop for 15 or 20 minutes, start right back up and twitch for hours again! Looking back, I think I was having the same twitches when I was up, moving around, but they weren't as noticeable to me as when I was standing, sitting or lying quietly.

The reason why this thread is so interesting to me is that I noticed the past few weeks that occasional, mild muscle twitches had returned. I assumed that I have run into some "hidden" gluten somewhere and that was the cause. Now I'm wondering if there isn't something else, like the things you guys have listed, that's stirring things up. I think I just might start a food diary and see if I can find a pattern of twitches matching up to certain foods.

Thanks, guys!

You are welcome BigDog,

I can definitely relate to your experience as I was tortured for three years with severe myoclonus anytime I tried to sleep, day or night. I had body aches, blurred vision, hyperactivity, weight loss, worsening GI problems, heart palpitations, insomnia and the list goes on! I have lost weight due to being on the low salicylate diet but my myoclonus has almost disappeared (unless I ingest foods containing moderate to high levels of salicylates or am exposed to airborne chemicals containing sals such as colognes or fragranced products). Sulfites (in foods and cosmetics also cause the same reactions (and now cause me to cough and my throat will get hoarse/lose my voice when exposed. It floors me to see that physicians are not aware of salicylate intolerance in foods. In all likelihood, my problem is due to a sulfite oxidase enzyme deficiency. This causes an inability of my liver to be able to breakdown or metabolize foods and chemicals containing sals and sulfites properly. Here is some more info below but you can google salicylate sensitivity to find even more...I also have problems with aspartame, MSG, and preservatives (benzoates in anything such as suntan lotion, shampoo, body lotion, OTC medications or prescriptions, or soda cause me to have severe severe myoclonus).

Open Original Shared Link

Open Original Shared Link

Hope this helps you,

Sylvia Ann

[Korwyn]

I have been in Savannah since last Sept and will be returning to Florida in a few days....I became extremely ill and almost ended up in the hospital after stopping my GI meds (which contained salicylates). I was on steriods for 2.5 months and recently weaned off of them. I saw an allergist in Savannah who treated my sister, nephew and mother for various allergy problems. I advised him of my three year ,"14 doctor" myoclonus from hell reactions. I also informed him of my diary and shared the long list of foods, GI meds, and cosmetics that appeared to be causing my myoclonus, agitation, GI problems, blurry vision, etc. He concurred with me that I indeed have a major intolerance to salicylates. I had a RAST blood test for wheat, milk, dogs, cats, soy and the results wre negative. I have been on a low salicyalte diet since late Sept and my myoclonus has greatly improved (I am sleeping much better!!). However, I still react to Benzoates (a member of the salicylate family) which are in almost every cosmetic item, cold meds, ginger ale, etc.) and sulphites (which are in everything!-yikes!). My allergist ids going to patch test me for these items (preservatives) in Feb. The patch tests will measure delayed reactions..which is what I have been having. I have seen additional reactions during the past few months (face flushing from eating a peeled yellow delicious apple yesterday and I cannot inhale cosmetic or medications containing sals or sulpites...really bothers my throat and creates a horrible taste in my mouth). I have a new GI doctor in Savnnah and he ordered a compounded liquid treatment NOT taken orally (actually a very small dose of steriods) for my ulcerative colitis and it seems to be working. I will also start taking Low Dose Naltrexone to hopefully maintain remission. I had a special blood lab last September that is supposed to be 92% specific to determine if a patient has IBD. Guess what..my test results revealed that My pattern was not consistent with IBD!!!. Salicylate intolerance is extremely difficult to diagnose and the only way to determine it is to keep a detailed diary (food, meds, events-exposures) and correlate the delayed reactions to what you have eaten. Maifestation sof salicyakte intolerance include colitis, asthma (my sister and her son), "D", uticartia/hives. Myoclonus is not specifically mentioned but I know that salicyakte toxicity can cause myoclonus and I found an article about a two year old boy who had myoclonus and it turn ed out that he had a severe salicylate intolerance (fruits).

How have you been doing?

Hi sylvia!

I'm sorry it has take so long to get back to you. Wow, you've had quite a journey. I did not know that cornstarch contains sulphites. I'm doing research right now on sulfites and I think this might be a part of it. The delayed reaction bit you mentioned is interesting because that seems to be one of the things I'm having problems with. My food log doesn't follow the normal pattern for me of a reaction within 24-48 hours. Maybe I should go back and put my symptoms into excel and put in the foods and see if I can chart any kind of delayed reaction pattern to certain foods. I'd almost need to go back on a full elimination diet again to start that but it might be worth it. Maybe. I don't want to start uncontrolled weight loss again. Controlled yes, uncontrolled no.

I have been looking into the salicylate connection and I don't think that is a key component as a number of fruits, veggies, and nuts which have high salicylate levels seem to be just fine for me. But interestingly many (if not most) of them that I can't tolerate do have high salicylate levels. Which indicates it is something related to salicylate level, but not the salicylate levels themselves.

I ate a piece of blackberry pie with cornstarch and it made me so sick. I have never thrown up so hard in my life. I attributed it to butter that was in it, but then some time later I had a biscuit with cornstarch and also got sick.

http://www.zipworld.com.au/~ataraxy/Salicylates_list.html'>Open Original Shared Link/Salicylates_list.html

This gentlemen has some interesting information I've been researching, especially the links on celluar biology and detoxification. Open Original Shared Link

Hope you are feeling better and the new year is going better for you. I'm going to cross post this into the forum just in case anyone else wants to read it.

Corwin