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Neurological Reaction To Coconut Oil

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Sheesh! I was sleeping so well. I stopped using lemons and peppers and my eczema went away. I also stopped using coconut oil and found I could sleep like a baby! But unfortunately tonight I had some leftover pancake that my boyfriend cooked for himself--I forgot til now that he used coconut oil in the pan. Just that little bit and I can't sleep--again!

I guess it makes it pretty clear that I am really allergic to coconut as well as the other above items.

There was an older thread about this, but I thought I would bring it up again.

I just took some ibuprofen. Am hoping it will work. I am going to take some baking soda since it is an allergy.

And no, this isn't due to candida overgrowth die off, I am certain. The eczema that I thought was candida has gone away. It is a clear case of an allergy affecting my nervous system. It makes my sciatic nerves inflamed and causes lumps on the ridges of my top hip bones, making it almost impossible to sleep--despite my having taken a hot bath and done an hour's worth of stretching and yoga earlier tonight and long walks almost every day. Its also inflaming the nerves in my neck. Aach! Its not fair. I am going to have to ask my boyfriend to stop using the coconut oil too... I just can't afford mistakes like this.

Anyone else here have a similar response to coconut oil? Any quick fix remedies? I suppose I will have to ride this out, however it would be nice to know if there are any tried and true remedies on this for my future arsenal...

Bea

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Wish I knew how to fix it. I suspect I've become allergic to coconut oil too. I don't know how to describe my symptoms yet. But I don't feel well/feel funny after I have some. Many of these allergens seem to cause GI inflamation that interferes with my sleep. Love to know how to get rid of that! Have you been using hexane free coconut oil? Tomatoes interfered with my sleep-really bad dream, and such. Crazy the way food can affext us.

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Wish I knew how to fix it. I suspect I've become allergic to coconut oil too. I don't know how to describe my symptoms yet. But I don't feel well/feel funny after I have some. Many of these allergens seem to cause GI inflamation that interferes with my sleep. Love to know how to get rid of that! Have you been using hexane free coconut oil? Tomatoes interfered with my sleep-really bad dream, and such. Crazy the way food can affext us.

I agree, it is crazy! I just wouldn't have thought it could affect me like that.

The coconut oil is hexane free, cold pressed, organic. So I doubt the kind of coconut oil is the problem... Its just the coconut itself.

I began to suspect it could possibly be a problem since I tend to be allergic to nuts in general. Plus my dad was allergic to the nightshade family.

I have had this terrible eczema as well as wracking nerve problems at night. The last few days both symptoms went away--except for last night after I had that snack!

We grew bushel fulls of tomatoes and peppers in our garden. Go figure! My reaction certainly wasn't caused by any pesticide etc.

The baking soda in a glass of water seemed to help, but nevertheless it w as 4 AM by the time I got to sleep!

I read elsewhere some folks use benedryl. I might get some for an emergency, though I generally don't do well with stimulants (pseudo-ephedrine)---so then again I might not. Its probably better for me to just to stay away from the stuff I guess.

I also have some sleep herbs I could have taken. Was too tired to whip them up. I should mix them in a jar, dry, and have them at the ready I suppose. Passion flower, valerian, chamomile, hops. Either that or make up capsules... But I think that might be just going a little too far.

At least now I know why I didn't have very good sleep these last several months!

Being able to sleep unhindered is such a gift. I look forward to doing so again tonight.

Bea

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Hi Bea,

I am allergic to coconut--so sensitive to it that water filtered through coconut hulls (in most commercial filters) makes me extremely ill.

I have gotten so that I can't use topical products with coconut--and most natural soaps and just about all shampoos contain coconut derivatives. I get tremors in my hands, trouble sleeping, and migraines just from using these sorts of products. If I ingest any--including pans washed with Clorox Naturals Dishwashing Detergent (all coconut)--I add nausea and dizziness to the mix.

The only remedy that has ever worked for me is to strictly avoid coconut in any form.

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Hi Bea,

I am allergic to coconut--so sensitive to it that water filtered through coconut hulls (in most commercial filters) makes me extremely ill.

I have gotten so that I can't use topical products with coconut--and most natural soaps and just about all shampoos contain coconut derivatives. I get tremors in my hands, trouble sleeping, and migraines just from using these sorts of products. If I ingest any--including pans washed with Clorox Naturals Dishwashing Detergent (all coconut)--I add nausea and dizziness to the mix.

The only remedy that has ever worked for me is to strictly avoid coconut in any form.

Hi Jersey Angel,

Oh wow--I was just talking to my boyfriend about that possibility. I have heard of others who can't handle the coconut shells turned into carbon for most water filters. Do you use a kind that doesn't have that type of charcoal?

I suppose the only way to figure that out is to stop using them and see what happens both without it and then when its re-introduced? I am hoping of course that I don't have it that bad. Whichever way it turns out, this not sleeping thing with the legs on fire etc. etc. has gotten way too old for me to ignore.

What type of shampoo do you use by the way? I just noticed that my beloved desert essence fragrance free shampoo has cocamidopropyl betaine in it.

Is coconut also in most gluten free cosmetics? Do you use a kind that doesn't? I'd be much obliged if you let me know.

Bea

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Hi Jersey Angel,

Oh wow--I was just talking to my boyfriend about that possibility. I have heard of others who can't handle the coconut shells turned into carbon for most water filters. Do you use a kind that doesn't have that type of charcoal?

I suppose the only way to figure that out is to stop using them and see what happens both without it and then when its re-introduced? I am hoping of course that I don't have it that bad. Whichever way it turns out, this not sleeping thing with the legs on fire etc. etc. has gotten way too old for me to ignore.

What type of shampoo do you use by the way? I just noticed that my beloved desert essence fragrance free shampoo has cocamidopropyl betaine in it.

Is coconut also in most gluten free cosmetics? Do you use a kind that doesn't? I'd be much obliged if you let me know.

Bea

Bea, I figured out about the filter when I put two and two together and realized that I got much sicker shortly after we bought a new refrigerator with a water filter. I looked into what they use for filtration because I wondered if by chance wheat was involved (it's not). But, I did discover that they used coconut hulls, and immediately switched to spring water which I still drink to this day.

This was reinforced during a visit to my sister's home where she served ice water from a Brita Filter pitcher. I got so nauseous and had stomach pain severe enough that I had to lie down. (since I always bring my food with me, it had to be the water) Went back to my spring water and began to feel better. Have not challenged it since :)

The shampoo issue was difficult--I was getting migraines nightly and tremors in my hands. I searched the internet for "coconut free" and found a shampoo bar that is coconut free by Chagrin Valley called Olive Babassu. I have been using it since August and after a period of both me and my hair getting used to it I have to say I love it. My hair is softer, holds color longer, and no ill effects.

http://www.chagrinvalleysoapandcraft.com/shambar.htm

I love the Unscented Castille (olive oil) bar soap from The Soap Shed--I use that in my shower and bathroom sink. Before I found out about shampoo bars, I used this to wash my hair too. (I prefer shampoo bars for hair--they lather really well and rinse out nicely)

http://www.soapshed.com/store/Castile-Soap-c-288.html

For makeup, I use Everyday Minerals for foundation, Nars blush, Loreal Telescopic mascara, Smashbox eye shadow (occasionally), and Afterglow lipstick.

http://www.everydayminerals.com/

http://www.afterglowcosmetics.com/lips/

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Being able to sleep unhindered is such a gift. I look forward to doing so again tonight.

Bea

AMEN to that! what with dust mite allergy, blood sugar or other metabolic fluctuations, GI inflamation etc. If I work REALLY hard I can get a good night's sleep occasionaly. I feel like I work so hard to sleep most nights and wake up all but rested. :(

Jerseyangel, if you have the time and don't mind I too would be interested in hearing more. Products etc. I mentioned to someone not long ago that I thought I would have to be careful with coconut. Just food products alone, there are so many things available these days and it's so easy for me to overdo lowcarb things with my limited diet. I rub coconut oil on my feet everyday to keep them in good shape-as Dr. Bernstein recommendeds for diabetics(pure oils not moisturizers) and the facial moisturizer I use now has coconut oil. I'd use olive oil for my feet but it is not clear like the coconut oil and I don't want to end up with discoloration of my socks.

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Bea, I figured out about the filter when I put two and two together and realized that I got much sicker shortly after we bought a new refrigerator with a water filter. I looked into what they use for filtration because I wondered if by chance wheat was involved (it's not). But, I did discover that they used coconut hulls, and immediately switched to spring water which I still drink to this day.

This was reinforced during a visit to my sister's home where she served ice water from a Brita Filter pitcher. I got so nauseous and had stomach pain severe enough that I had to lie down. (since I always bring my food with me, it had to be the water) Went back to my spring water and began to feel better. Have not challenged it since :)

The shampoo issue was difficult--I was getting migraines nightly and tremors in my hands. I searched the internet for "coconut free" and found a shampoo bar that is coconut free by Chagrin Valley called Olive Babassu. I have been using it since August and after a period of both me and my hair getting used to it I have to say I love it. My hair is softer, holds color longer, and no ill effects.

http://www.chagrinvalleysoapandcraft.com/shambar.htm

I love the Unscented Castille (olive oil) bar soap from The Soap Shed--I use that in my shower and bathroom sink. Before I found out about shampoo bars, I used this to wash my hair too. (I prefer shampoo bars for hair--they lather really well and rinse out nicely)

http://www.soapshed.com/store/Castile-Soap-c-288.html

For makeup, I use Everyday Minerals for foundation, Nars blush, Loreal Telescopic mascara, Smashbox eye shadow (occasionally), and Afterglow lipstick.

http://www.everydayminerals.com/

http://www.afterglowcosmetics.com/lips/

Thanks Patti--I will definitely look into getting some of these. At least I have the lipstick already!

Bea

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AMEN to that! what with dust mite allergy, blood sugar or other metabolic fluctuations, GI inflamation etc. If I work REALLY hard I can get a good night's sleep occasionaly. I feel like I work so hard to sleep most nights and wake up all but rested. :(

Jerseyangel, if you have the time and don't mind I too would be interested in hearing more. Products etc. I mentioned to someone not long ago that I thought I would have to be careful with coconut. Just food products alone, there are so many things available these days and it's so easy for me to overdo lowcarb things with my limited diet. I rub coconut oil on my feet everyday to keep them in good shape-as Dr. Bernstein recommendeds for diabetics(pure oils not moisturizers) and the facial moisturizer I use now has coconut oil. I'd use olive oil for my feet but it is not clear like the coconut oil and I don't want to end up with discoloration of my socks.

Hi missy's mom,

In addition to the links I posted above, I use the Fragrance Free Moisturizer from Dakota Free. I also have used their coconut free Babassu Bar Soap and liked it very much.

http://dakotafree.com/

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Thanks Patti--I will definitely look into getting some of these. At least I have the lipstick already!

Bea

You're welcome Bea :)

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Just thought of something else that I think I mentioned in another thread....Clorox Naturals Dish Detergent is all coconut and exacerbated my symptoms when I was using it on my non stick pans that I wash by hand.

I switched back to Palmolive which is working well for me.

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Just thought of something else that I think I mentioned in another thread....Clorox Naturals Dish Detergent is all coconut and exacerbated my symptoms when I was using it on my non stick pans that I wash by hand.

I switched back to Palmolive which is working well for me.

Thanks for the heads up. TJ's is made from coconut oil!

Bea

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Just thought of something else that I think I mentioned in another thread....

Oye--just realized I mentioned it earlier in this very thread! :ph34r:

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Sheesh! I was sleeping so well. I stopped using lemons and peppers and my eczema went away. I also stopped using coconut oil and found I could sleep like a baby! But unfortunately tonight I had some leftover pancake that my boyfriend cooked for himself--I forgot til now that he used coconut oil in the pan. Just that little bit and I can't sleep--again!

I guess it makes it pretty clear that I am really allergic to coconut as well as the other above items.

There was an older thread about this, but I thought I would bring it up again.

I just took some ibuprofen. Am hoping it will work. I am going to take some baking soda since it is an allergy.

And no, this isn't due to candida overgrowth die off, I am certain. The eczema that I thought was candida has gone away. It is a clear case of an allergy affecting my nervous system. It makes my sciatic nerves inflamed and causes lumps on the ridges of my top hip bones, making it almost impossible to sleep--despite my having taken a hot bath and done an hour's worth of stretching and yoga earlier tonight and long walks almost every day. Its also inflaming the nerves in my neck. Aach! Its not fair. I am going to have to ask my boyfriend to stop using the coconut oil too... I just can't afford mistakes like this.

Anyone else here have a similar response to coconut oil? Any quick fix remedies? I suppose I will have to ride this out, however it would be nice to know if there are any tried and true remedies on this for my future arsenal...

Bea

Coconut oil is extremely high in salicylates. If it is the salicylates you are reacting to, then Ibuprofen could be adding to you your reaction. If one is allergic to salicylates then they would be unable to use Ibuprofen as it is so closely chemically related that it can cause the same reactions. Neurological reactions are common with salicylic acid allergy/intolerance...ranging from ringing in the ears, to internal angst, migraine headache, despair, restless legs. Fruits are often high in salicylic acid. Celiacs are often allergic to salicylic acid. Just one more thing for you to consider. I found out the hard way about being allergic to aspirin. You can find the symptoms by googling chronic salicylic acid poisoning. The symptoms can occur not only from the medicine but also from salicylic acid containing foods like coconut oil and fruit. Insomnia is also one of those reactions. good luck. Just wanted you to consider this.

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Sheesh! I was sleeping so well. I stopped using lemons and peppers and my eczema went away. I also stopped using coconut oil and found I could sleep like a baby! But unfortunately tonight I had some leftover pancake that my boyfriend cooked for himself--I forgot til now that he used coconut oil in the pan. Just that little bit and I can't sleep--again!

I guess it makes it pretty clear that I am really allergic to coconut as well as the other above items.

There was an older thread about this, but I thought I would bring it up again.

I just took some ibuprofen. Am hoping it will work. I am going to take some baking soda since it is an allergy.

And no, this isn't due to candida overgrowth die off, I am certain. The eczema that I thought was candida has gone away. It is a clear case of an allergy affecting my nervous system. It makes my sciatic nerves inflamed and causes lumps on the ridges of my top hip bones, making it almost impossible to sleep--despite my having taken a hot bath and done an hour's worth of stretching and yoga earlier tonight and long walks almost every day. Its also inflaming the nerves in my neck. Aach! Its not fair. I am going to have to ask my boyfriend to stop using the coconut oil too... I just can't afford mistakes like this.

Anyone else here have a similar response to coconut oil? Any quick fix remedies? I suppose I will have to ride this out, however it would be nice to know if there are any tried and true remedies on this for my future arsenal...

Bea

I forgot to add that I noticed you saw improvment from taking baking soda. This is standard treatment for salicylic acid overdose. I know some people drink it when they ingest too many salicylic acid containing foods to conrol the symptoms. Your reason was different but hospitals administer IV bicarbonate of soda to balance the blood levels of salicylic acid. Just an interesting thought for you to consider.

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I forgot to add that I noticed you saw improvment from taking baking soda. This is standard treatment for salicylic acid overdose. I know some people drink it when they ingest too many salicylic acid containing foods to conrol the symptoms. Your reason was different but hospitals administer IV bicarbonate of soda to balance the blood levels of salicylic acid. Just an interesting thought for you to consider.

Well my god if that is true! My celiac older sister is allergic to salicylic acid. It is possible I could be too... Thank you!! I never even really considered this for myself--though I am very allergic to aspirin. I tolerate many herbs for instance that my sister cannot... However I am seemingly allergic to most if not all fruit. Though who knows really what is what. My head is spinning!!

ps--my boyfriend says yes, silly. aspirin is salicylic acid. It gives me bruises, like it did my grandmother...

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Coconut oil is extremely high in salicylates. If it is the salicylates you are reacting to, then Ibuprofen could be adding to you your reaction. If one is allergic to salicylates then they would be unable to use Ibuprofen as it is so closely chemically related that it can cause the same reactions. Neurological reactions are common with salicylic acid allergy/intolerance...ranging from ringing in the ears, to internal angst, migraine headache, despair, restless legs. Fruits are often high in salicylic acid. Celiacs are often allergic to salicylic acid. Just one more thing for you to consider. I found out the hard way about being allergic to aspirin. You can find the symptoms by googling chronic salicylic acid poisoning. The symptoms can occur not only from the medicine but also from salicylic acid containing foods like coconut oil and fruit. Insomnia is also one of those reactions. good luck. Just wanted you to consider this.

This could be it. Oh boy. Thank you again!!

So--are there any non salicylic acid fruits??

I don't use aspirin--and only use ibuprofen sparingly.

I do use many herbs.

Lately I have been having peppermint tea...

I haven't noticed veggies causing me a problem.

There must be degrees of salicylates, eh? I should find a list.

Not only was my mom's mom allergic to aspirin, but so was my dad. He couldn't tolerate wintergreen... He had terrible low blood sugar and was diagnosed late in his life as being a veritable yo yo --an up and down daily manic depressive. However the doc could have been wrong...since they don't often look at causes. His heart eventually gave out--not to mention his kidneys. He was on dialysis--as was his brother. Their mother died from kidney disease too. She was a devout christian scientist. Her positive thinking unfortunately did not help her with this condition. I heard she had terrible migraines after giving wonderful parties...

I know that I used to be kind of emotionally unstable back in my twenties before I made major changes in my diet (when I too had chronic kidney problems), but now have a very steady disposition (and no longer have kidney disease though I watch what i eat like a hawk)...whereas my dad used sugar candies and fruit drinks to self medicate himself...as well as exercise. At least he had the exercise part right.

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I read elsewhere some folks use benedryl. I might get some for an emergency, though I generally don't do well with stimulants (pseudo-ephedrine)---so then again I might not. Its probably better for me to just to stay away from the stuff I guess.

Hi, Bea

Benedryl is an antihistamine and not stimulant at all. On the contrary, is anticholinergic amd will make you sleepy so it's really good at bedtime if you are having a reaction that keeps you awake. Another way Benedryl is marketed is as Sominex, if that gives you an idea. ;) It may also make your mouth a little dry. It is an old, good medicine and extremely effective for acute allergies of all kinds. The newer, less sedating antihistamines aren't nearly as good. A lot of boxes tell you to take 50 mg, but try 25 mg at first to see you react.

I'm glad to hear that you figured out what you thought was candida. It's much nicer to have a reaction you can control better.

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This could be it. Oh boy. Thank you again!!

So--are there any non salicylic acid fruits??

I don't use aspirin--and only use ibuprofen sparingly.

I do use many herbs.

Lately I have been having peppermint tea...

I haven't noticed veggies causing me a problem.

There must be degrees of salicylates, eh? I should find a list.

Try the Feingold association for lists.

http://www.feingold.org/index.php

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Well my god if that is true! My celiac older sister is allergic to salicylic acid. It is possible I could be too... Thank you!! I never even really considered this for myself--though I am very allergic to aspirin. I tolerate many herbs for instance that my sister cannot... However I am seemingly allergic to most if not all fruit. Though who knows really what is what. My head is spinning!!

ps--my boyfriend says yes, silly. aspirin is salicylic acid. It gives me bruises, like it did my grandmother...

There is another list by the Prince Albert Royal Hospital on the salicylic acid containing foods and the limits that are allowed if you are sensitive. The only fruits are thickly peeled ripe Barlett pears and thckly peeled golden delicious apples. I came to find out about Celiac by first finding out I was intolerant of salicylic acid. You wrote about your Dad being allergic to wintergreen...it is extremely high in salicylic acid. Literally poison to someone who is allergic to sals. I think I googled salicylic acid content of foods when I found the most comprehensive list you can imagine. There is also a book called The Healthier I Ate The Sicker I Got- I think it is online and it may have all the lists. I eliminated sals...and started getting better. I was taking Ibuprofen for the flu-like symptoms of Celiac. Later-not getting well, I eliminated foods and preservatives...and the very last thing I tried...was wheat. I'm so happy I found your post and I hope you will update me on how this goes for you. Almost all fruits and vegetables have sals...but you can have Brussel sprouts and leeks (hope you like them) Sue Dengate is another author who wrote Fed Up With Food Additives...and there is some sal information there. If you google chronic aspirin poisoning you will find horrifying lists of the symptoms. Congestive heart failure, kidney problems, etc. It is very very scary. You will feel soooo much better if this is part of your problem. It was a huge relief to me to find out so I don't want anyone to go through what I did. I almost killed myself. And it doesn't take much to make you react. Wish you the best and I'm thinking about you.

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There is another list by the Prince Albert Royal Hospital on the salicylic acid containing foods and the limits that are allowed if you are sensitive. The only fruits are thickly peeled ripe Barlett pears and thckly peeled golden delicious apples. I came to find out about Celiac by first finding out I was intolerant of salicylic acid. You wrote about your Dad being allergic to wintergreen...it is extremely high in salicylic acid. Literally poison to someone who is allergic to sals. I think I googled salicylic acid content of foods when I found the most comprehensive list you can imagine. There is also a book called The Healthier I Ate The Sicker I Got- I think it is online and it may have all the lists. I eliminated sals...and started getting better. I was taking Ibuprofen for the flu-like symptoms of Celiac. Later-not getting well, I eliminated foods and preservatives...and the very last thing I tried...was wheat. I'm so happy I found your post and I hope you will update me on how this goes for you. Almost all fruits and vegetables have sals...but you can have Brussel sprouts and leeks (hope you like them) Sue Dengate is another author who wrote Fed Up With Food Additives...and there is some sal information there. If you google chronic aspirin poisoning you will find horrifying lists of the symptoms. Congestive heart failure, kidney problems, etc. It is very very scary. You will feel soooo much better if this is part of your problem. It was a huge relief to me to find out so I don't want anyone to go through what I did. I almost killed myself. And it doesn't take much to make you react. Wish you the best and I'm thinking about you.

Hi again.

Sorry about the delay in answering your post. I have been up to my ears in family of late--just got my brother out of the hospital and am also now taking care of my 95 year old mom.

I am so grateful for your insights. It does really seem like your suggestions hit the mark--I woke up this morning with my head feeling clear instead of the usual foggy brain I have had for more years than I can remember.

There are some things that I am finding I am actually not allergic to like the bananas--though I think I am better with riper ones--and the brown rice.

It will take time to go through and figure this all out. I pasted some lists from the internet. I still need to get alternate oils since normally I use either coconut, olive or grape seed all of which I am guessing are big no no's. I was also eating tons of zucchini!! The one good choice was the sunflower seeds--but not so the pumpkin seeds, eh?

What I gather is that once one is used to this diet etc. then you can try going off the path a bit and see what you can have outside the strict sal. diet.

I do wonder about using spices such as ginger and basil. Are they truly out? I already gave up the peppers. It just seems a bit harsh to go off almost all culinary spices however if that must be, so be it...

I am looking forward to trying out lentils and split pea etc. again. It will be interesting to see if I can tolerate them without the accompanying salicylic acid.

Although my diet is limited, knowing these things in many ways is increasing its range.

Plus already I am less itchy etc. So a very big thanks! to you.

And yes, as my journey goes on I will posts more about it. It would be interesting to me if you also let me know more tips you discovered that apply to you.

Hugs!

Bea

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I found this list of foods that were safe/unsafe:

http://salicylatesensitivity.com/about/food-guide/

I don't know how accurate it is, but it seemed like a nice starting place. :-)

Thanks--it is very helpful. I also looked up Sue Dengate's blog. She wrote Fed Up With Food Additives. She suggests some of us are also fruit sensitive--which I may well be. I did not react well to that banana. I was OK with it the first day, but the second day with a banana was too much. Maybe I will be able to have fruit say once or twice a week. Who knows? Anything is an improvement at this point.

I have yet to try out lentils etc. Am looking forward to it! I may try some out this weekend...without peppers etc.

Bea

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    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Hi Isabel, Your body needs nutrients to grow.  Nutrients not absorbed well when we have celiac disease damage in our guts.   But, if you do a good job of avoiding gluten, the gut damage should heal and you will be able to absorb nutrients again. The thing to remember is celiac disease is an immune system reaction.  Immune reactions are very sensitive and just a tiny amount of gluten can get them going.   And they can last for months.  So it;s very important to avoid all gluten all the time, to keep the immune reaction down.  Keeping the immune reaction down keeps the damage down, and the healing can keep up. You may start to grow more if you can absorb nutrients better.  Some extra vitamin pills might be a good idea.  Your doctor should know.  
    • Thank you Gail for your response. Of course one should be mindful of the possibility of food allergies but I don't think that's the case with my current situations. Save for gluten containing product, everything I eat now I used to eat before with no reaction whatsoever. I think my issue is more likely to be deficiency in minerals and such.
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