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Neurological Reaction To Coconut Oil


YoloGx

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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


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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.


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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

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      Thanks for sharing, Karen. Certainly a needed reminder what we already knew (and I've posted many times on this forum) but sometimes forget, namely, autoimmune disorders tend to cluster. Where one is found, you can look for others to show up eventually. The thing that is unusual in your son's case is the onset of several of them at such a young age. My sister in law, who is in her early 60's has Crohn's and struggles with constipation so I don't think that is unusual with Crohn's. If nothing else, it's the outcome of not eating much because of the pain. Now that you know what is going on with your son and the Crohn's, we hope he is beginning to improve.
    • Nathan.
      Hi there. My son is turning 16 this month. He had an endoscopy and biopsy to confirm celiac. He went gluten-free and his pain never got any better. I think it got worse. Months went by. The pain started around 7th grade. He missed a lot of school in 8th grade, and a whole lot in 9th grade. He couldn't go to school in 10th grade. All along the gastroenterologist prescribed Hyoscyamine, didn't help at all. Cyproheptadine, no less pain. Peppermint oil, ginger, Miralax, Senna. Doc said he was constipated, but I couldn't get him to have Miralax daily. Eventually he went on Linzess and no senna or Miralax. Sorry this is long, there will be a point.  We gave his school not just a doctors not, but everything, and U of M makes a lot of notes. They still turned us in for Truancy.  I didn't get him enrolled in online school fast enough.  The school would not recommend an online school and i didn't know which one to choose.  Doc thought it was nerve pain and mental. He recommended the u of m my pain program.  Nathan did so good, 3 days a week supposed to be for 4 weeks.  Never missed, always on time.   After two weeks, they discharged him. Said it was not  benefitting him.  Pain went on. I had been asking if there were any other test they could do. Ultrasound, colonoscopy. Doc said we can do it, but I don't think we'll find anything.  Finally he had a colonoscopy and another endoscopy.  Guess what, they did find something. They found a ton of tiny ulcers everywhere, from the esophagus to his rectum. They think Crohn's. I understand they didn't check for that because he was more constipated, not much diarrhea. He is getting an MRI with contrast on Sunday. Also they want him to do a cal-protectin (give a poop sample). Then an appointment on the 16th to talk about treatment. Then the probation officer on the 17th. In the meantime he is taking Budesonide extended release.  $276.00 for 30 pills, and that's with insurance. Also he was diagnosed with hyperthyroidism, Graves disease a few months ago. If it is for sure Crohn's,  it will be three autoimmune diseases. If someone is gluten-free for a month or more, and the pain is no better, don't stop looking. I was beside myself. Did they think he was exaggerating, lying? I was considering taking him to a holistic doctor, who would probably recommend Peppermint oil and ginger.  He's such a good kid. Kind of an introvert. He was on the 9th grade soccer team. He would try to go to practice and kept having to stop, the pain was that bad. Every time he ate, it didn't matter what, gluten-free chicken tenders, mac and cheese, pizza, ice cream, all gluten-free, he would eat a normal amount but stop and say, I can't eat anymore, my stomach hurts.  If anyone reads all this, thank you. I had a gut feeling, no pun intended, that he had an additional problem. They found celiac and stopped looking. If you don't feel better, keep on your doctor to check further, keep looking.   Take care, Karen  
    • Scott Adams
      Most likely cross-contamination I believe.
    • cristiana
      I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
    • knitty kitty
      Hello,   The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine.  We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease.  Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals.  There are eight B vitamins that all work together.  Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days.  Without thiamine, the other B vitamins may not be able to function properly.   Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/    Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/   Thiamine has antifungal and antibacterial properties.  Thiamine helps keep Candida in check.  Thiamine helps keep SIBO in check.  Thiamine helps with black mold, Aspergillis infection.  Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/   Thiamine deficiency can make ones voice hoarse and can cause localized edema.  Niacin deficiency can make ones voice hoarse.  (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/   Anesthesia can cause B12 deficiency.  B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/     Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency.  As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/   The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened.   Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi).  Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ).  B12 deficiency can present as diarrhea or dementia.  Not everything is caused by hidden gluten.  Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium.  Your physician can give you a shot of B12 before anesthesia administration.   By the way, Celiac Disease genes have been traced back to having originated in Neanderthals.  I'm not a singing teacher on the net.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body.  I've experienced nutritional deficiencies myself. Hope this helps!  Keep us posted on your progress!
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