Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Neurological Reaction To Coconut Oil


YoloGx

Recommended Posts

YoloGx Rookie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



missy'smom Collaborator

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.

YoloGx Rookie

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

jerseyangel Proficient

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.

YoloGx Rookie

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

jerseyangel Proficient

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.

Open Original Shared Link

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)

Open Original Shared Link

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

Open Original Shared Link

Open Original Shared Link

missy'smom Collaborator

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



YoloGx Rookie

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.

Open Original Shared Link

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)

Open Original Shared Link

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

Open Original Shared Link

Open Original Shared Link

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

Bea

jerseyangel Proficient

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.

Open Original Shared Link

jerseyangel Proficient

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

Bea

You're welcome Bea :)

missy'smom Collaborator

Thanks Patti.

jerseyangel Proficient

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.

YoloGx Rookie

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

jerseyangel Proficient

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:

eatmeat4good Enthusiast

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.

eatmeat4good Enthusiast

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.

YoloGx Rookie

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...

YoloGx Rookie

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.

Skylark Collaborator

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.

Skylark Collaborator

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.

Open Original Shared Link

eatmeat4good Enthusiast

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.

YoloGx Rookie

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

T.H. Community Regular

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

Open Original Shared Link

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

YoloGx Rookie

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

Open Original Shared Link

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

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.