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pemlhs1201

Help with Not Feeling Crazy

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Hello, Thank you for reading my post and any feed back anyone can give. I apologize ahead of time if it's a little all over the place. I recently have had an exposure to gluten and it fully effects my brain function so I am a little all over the place.

Well, I am 29 years old and I was diagnosed with Celiac Disease almost 5 years ago. My processes of discovering I was Celiac positive mostly involved my arthritis in my knees, however, after the diagnosis and removing gluten completely from my diet, I realized how much it affected my brain function. I went from a really depressed, bipolar, suicidal person to someone who is smiling, laughing and truly happy a majority of the time. 

The biggest things I have run into after my diagnosis are memory loss or lack of memory, and significant mood changes if exposed for too long, both of which are really hard for me to explain to people, especially friends who may be dealing with my faults directly. Most of the time I am really good about my diet. I try my hardest to not eat out, clean the counters before I make dinner, and avoid all gluten products. I also tend to not eat gluten free products either and I don't drink. So being exposed to gluten for a long enough period of time for my brain to be struggling is a big deal for me and frankly pretty damn scary. 

My doctors have done many tests in the past couple days, the most important one for this subject is the scan of the function of my brain, or lack there of. Right now my brain's function has diminished about 25% of normal, some parts are over compensating and other parts are pretty much not working correctly. I am having a hard time fighting my own demons, convincing myself that people believe I am some awful person, when I know for a fact that none of those words have been said to me, especially lately, yet I conjure up that that is what people think. 

Anyway, I am in search of some help, mostly people I can talk to that may be experiencing the same thing. How do you explain to people you are struggling with a mental disorder that is controlled simply by what you eat, when you know that they will never truly understand no matter how many different ways it’s explained? How do you explain to people you are sick when your brain can’t function well enough for you to realize it? and How do I not drive myself crazy while my body recovers from my exposure?

If someone can lay some insight as to what is going on that would be so helpful, or even just talk me through it that would be great too. 

Thank you for your time. 

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45 minutes ago, pemlhs1201 said:

Hello, Thank you for reading my post and any feed back anyone can give. I apologize ahead of time if it's a little all over the place. I recently have had an exposure to gluten and it fully effects my brain function so I am a little all over the place.

Well, I am 29 years old and I was diagnosed with Celiac Disease almost 5 years ago. My processes of discovering I was Celiac positive mostly involved my arthritis in my knees, however, after the diagnosis and removing gluten completely from my diet, I realized how much it affected my brain function. I went from a really depressed, bipolar, suicidal person to someone who is smiling, laughing and truly happy a majority of the time. 

The biggest things I have run into after my diagnosis are memory loss or lack of memory, and significant mood changes if exposed for too long, both of which are really hard for me to explain to people, especially friends who may be dealing with my faults directly. Most of the time I am really good about my diet. I try my hardest to not eat out, clean the counters before I make dinner, and avoid all gluten products. I also tend to not eat gluten free products either and I don't drink. So being exposed to gluten for a long enough period of time for my brain to be struggling is a big deal for me and frankly pretty damn scary. 

My doctors have done many tests in the past couple days, the most important one for this subject is the scan of the function of my brain, or lack there of. Right now my brain's function has diminished about 25% of normal, some parts are over compensating and other parts are pretty much not working correctly. I am having a hard time fighting my own demons, convincing myself that people believe I am some awful person, when I know for a fact that none of those words have been said to me, especially lately, yet I conjure up that that is what people think. 

Anyway, I am in search of some help, mostly people I can talk to that may be experiencing the same thing. How do you explain to people you are struggling with a mental disorder that is controlled simply by what you eat, when you know that they will never truly understand no matter how many different ways it’s explained? How do you explain to people you are sick when your brain can’t function well enough for you to realize it? and How do I not drive myself crazy while my body recovers from my exposure?

If someone can lay some insight as to what is going on that would be so helpful, or even just talk me through it that would be great too. 

Thank you for your time. 

I am not sure why you think these issues are due to gluten?  You say you are eating gluten free?  Maybe you should consider  that you might have an additional issue besides Celiac?  I would hate for you to dismiss a real problem that you might be able to get some help for.  

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That's all possibilities except this person doesn't eat gluten!  I hate to see them not seek help.

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4 minutes ago, kareng said:

That's all possibilities except this person doesn't eat gluten!  I hate to see them not seek help.

I  Believe they are saying they experience these symptoms when exposed to gluten. I agree with seeking help and would never dissuade anyone from doing so. 

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15 minutes ago, 5143Betty said:

I  Believe they are saying they experience these symptoms when exposed to gluten. I agree with seeking help and would never dissuade anyone from doing so. 

 

21 minutes ago, kareng said:

That's all possibilities except this person doesn't eat gluten!  I hate to see them not seek help.

I apologize for the confusion. I do not eat gluten. I am on a very strict gluten free diet. However, I have recently been exposed to it for around a month now and I am not sure how but I am working to fix that and make sure my diet is again completely gluten free. 

I believe that the causes are due to celiacs based off of how I feel on and off gluten and physical examinations of my gut and brain function by the doctors. When my body is clean I do not have mood swings or depression and haven’t had these issues for almost 4 years. But during this exposure I am experiencing extreme mood swings, anger for no logical reason and hate for myself. Which again I experience before celiac diagnosis and now that I have been clean I haven’t had the issues until this point. So I’m seeing if others experience the same thing and how they deal with it and how they communicate to others during a time like this. Hope that clarified some things 

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I’m new to this but have a friend who has inhaled it and has had reactions from shampoo and other topical items. I also read recently that someone had to drink bottled water because their water had wheat in it which I’m thinking must be well water? Could it be one of these things?

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7 hours ago, pemlhs1201 said:

Well, I am 29 years old and I was diagnosed with Celiac Disease almost 5 years ago. My processes of discovering I was Celiac positive mostly involved my arthritis in my knees, however, after the diagnosis and removing gluten completely from my diet, I realized how much it affected my brain function. I went from a really depressed, bipolar, suicidal person to someone who is smiling, laughing and truly happy a majority of the time. 

Back when I went gluten-free  about 5 years ago now, I used to call that mean side of me Mr.Hyde, I was confused all the time and my mind would start looping on the same ideas over and over and I could not move on to a new thought like a broken records....drove me nuts and had me snapping at people and punching walls. Scariest thing in the world is when you own mind does not work.....I did a whole drama post about it years ago. It is a odd aspect of the disease referred to as gluten ataxia. You body will attack the brain/nervous system when gluten is detected in the body by mistake. Yes it causes brain damage....I used to do computer coding, I spent years in college trying to learn it...took me longer then anyone else but  got it....stuff no longer makes sense now. I used to be semi fluent in japanese .....no longer...I used to love math....number rearrange on pages now.....yeah it broke me. 

Best thing you can do is stay gluten-free, nerve damage is the slowest to heal....like decades/lifetime.  I still have nerve issues with my hands and feet they refer to as peripheral nephropathy.
Other things to consider are upping your B-vitamins, alll of them, adding magnesium, and going to a high fat diet with tons of nuts, seeds, fish to promote your brain health. I take some other things to boost my brain. You learn to compensate in odd ways -_- I recently got glutened myself from a CC issue...the brain issue did not get worse this time...but my hands and feet lost most feelings.....I have been posting updates. But it is scary.

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4 hours ago, Audrak said:

I’m new to this but have a friend who has inhaled it and has had reactions from shampoo and other topical items. I also read recently that someone had to drink bottled water because their water had wheat in it which I’m thinking must be well water? Could it be one of these things?

...Scare tactic? like crazy...I think your friend is having a reactions to a mineral or something like a mast cell reaction? I have never heard of wheat in tap water....my tap has too much other crud in but I have pipes from the 40s in apartment and been drinking filtered since I moved in here years ago. Shampoos/etc if they contain wheat will get you by you touching your food, lips, etc after using them. Inhaled.....yeah if you inhale flour through the nose it gets washed down your throat with the mucus and that will trigger the reaction when you digest it.

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8 hours ago, pemlhs1201 said:

 

I apologize for the confusion. I do not eat gluten. I am on a very strict gluten free diet. However, I have recently been exposed to it for around a month now and I am not sure how but I am working to fix that and make sure my diet is again completely gluten free. 

I believe that the causes are due to celiacs based off of how I feel on and off gluten and physical examinations of my gut and brain function by the doctors. When my body is clean I do not have mood swings or depression and haven’t had these issues for almost 4 years. But during this exposure I am experiencing extreme mood swings, anger for no logical reason and hate for myself. Which again I experience before celiac diagnosis and now that I have been clean I haven’t had the issues until this point. So I’m seeing if others experience the same thing and how they deal with it and how they communicate to others during a time like this. Hope that clarified some things 

I guess my point is that you seem to think it is gluten, but you are very careful & you don't know where it is coming from.....so maybe it isn't  gluten this time.

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On 12/29/2017 at 5:08 AM, pemlhs1201 said:

 

I apologize for the confusion. I do not eat gluten. I am on a very strict gluten free diet. However, I have recently been exposed to it for around a month now and I am not sure how but I am working to fix that and make sure my diet is again completely gluten free. 

I believe that the causes are due to celiacs based off of how I feel on and off gluten and physical examinations of my gut and brain function by the doctors. When my body is clean I do not have mood swings or depression and haven’t had these issues for almost 4 years. But during this exposure I am experiencing extreme mood swings, anger for no logical reason and hate for myself. Which again I experience before celiac diagnosis and now that I have been clean I haven’t had the issues until this point. So I’m seeing if others experience the same thing and how they deal with it and how they communicate to others during a time like this. Hope that clarified some things 

Hello there

I was diagnosed in 2014 after experiencing a period of  dreadful anxiety (phobias, mind racing in the small hours of the night, a feeling of impending doom etc, inability to function during the day, brain fog). 

Before I was diagnosed it was discovered I was low in iron (ferritin) at level 6, and just above normal B12. Supplementing with these helped enormously, but apart from that I found reading the following books so helpful.   You might wish to google them - I think they can all be bought on line, via amazon.  (I realise that they are perhaps not an exact match for what you are going through, but these issues do appear to have some overlap.)

Paul David's At Last a Life (there is a website too, anxietynomore.co.uk)

Dr Steve Llardi, Depression Cure: The 6-Step Program to Beat Depression

Dr Tim Cantopher, Depressive Illness, The Curse of the Strong.

I also sought one hour of weekly counselling through a private registered counsellor because all through the diagnosis journey the doctors didn't know what was wrong and thought it might be cancer.  It helped me to have a safe place to just vent my fears etc.  

In the UK it is difficult to see someone quickly when encountering  such mental health issues.  I'm sure if I'd had an MRI scan at the time it would have shown some interesting readings, I was not myself at all.  But thankfully little by little I got well.

I have however had relapses and that is why I am posting this to you.  Is gluten the cause? In my own case  I really don't know as I've only just learned that my TTG levels are still quite elevated even after being gluten free for years (or at least I thought I was).  But what I do notice is that almost without exception these relapses occurr when I find myself in a stressful situation that I feel I can do nothing about.  I think it is adrenaline, with nowhere to go,  somehow sparks things off again.  

It could well be that it is gluten that is causing this stuff with you.  It's never a bad idea to see a doctor at times like this in case you are deficient in something or there is some other root cause.  But using the tips I have learned in the books I have read, particularly David and Llardi's books, helps me get back on track.

I'm sorry if this isn't particularly helpful to your situation but I thought I'd share in case.

 

 

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12 hours ago, pemlhs1201 said:

  I am in search of some help, mostly people I can talk to that may be experiencing the same thing. 

Eating gluten gives me horrible chest pains where it feels like I'm having a heart attack, crippling back pain that causes constant pain, it causes tics under my eyes and my muscles to twitch uncontrollably, I get rashes on my skin, scales and sores on my scalp, I get constipation/diarrhea, foul smelling wind, stomach cramps that feel like someone reached into my belly and twisted it,  it affects my eyesight as I get blurred patches over my vision, and all of these and more physical symptoms are as nothing compared to the despair anxiety and crippling depression it plunges my brain into. That's the real thing I'm scared of when I eat out, that I'm going to feel that way again. I never want to feel that way ever. 

Quote

How do you explain to people you are struggling with a mental disorder that is controlled simply by what you eat, when you know that they will never truly understand no matter how many different ways it’s explained?

It's difficult. I've drifted away from my old friends because of it. The one thing I did find useful was when I could point to the rash that appeared on my chest and say, this is what it does to me on the outside, but its doing it to me on the inside as well. 

Quote

How do you explain to people you are sick when your brain can’t function well enough for you to realize it?

Again difficult. Although because I lived so long with the brain fog I did find Id developed coping strategies for it. In fact I decided that I was more a walking collection of coping strategies than a person at one point, because I'd lived with all this internally for so long without any explanation other than it being who I was. Try to control what you do and your environment. Prepare in advance. Have things ready and organised. It helps a little. 

Quote

and How do I not drive myself crazy while my body recovers from my exposure?

Hold on to the fact that now YOU KNOW what caused it and YOU KNOW that it will pass in time. It's a lot better for me knowing that there's a physical cause and that it will pass in time.

Finally, this site has been very helpful for me, I've learned a lot here. It's a good site with some great people who are very helpful. Hope you find as much advice and support here as I've done. :)

All the best,

Matt

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I want to thank everyone so much for reaching out. I really appreciate it. It's great to know that I am not the only that suffers with these symptoms. So thank you all so much for the insight. I am definitely going to do some more research about alternative things to take to supplement my brain function, like magnesium. I have spoken with my doctors about it all and I've pretty much gotten the "you can try whatever you want, everyone is different and everything reacts different." I will just be keeping a close eye on what is happening to my body and hopefully find somethings to help me out. 

 

10 hours ago, Jmg said:

Hold on to the fact that now YOU KNOW what caused it and YOU KNOW that it will pass in time. It's a lot better for me knowing that there's a physical cause and that it will pass in time.

Matt, I want to thank you very specifically for this statement. This is something that I am repeating to myself over and over so I remember that this will pass. I am very thankful you reached out and provided me with some sort of strategy to get me through this. 

I feel like we all know what we are suppose to do to keep ourself healthy, but sometimes it just doesn't work, and no matter what you try to do fix it, it continues to be broken. So reminding myself that this time will pass and to just keep working to make it better really helps have motivation to continue to want to do better. 

Thank you all again so much and I will keep you posted about what's going on. Being young, and uneducated about all of this, and dealing with issues that I feel like most people will never experience is difficult and I am so glad to be able to talk to others that share my situation and can understand me. 

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17 hours ago, pemlhs1201 said:

I want to thank everyone so much for reaching out. I really appreciate it. It's great to know that I am not the only that suffers with these symptoms. So thank you all so much for the insight. I am definitely going to do some more research about alternative things to take to supplement my brain function, like magnesium. I have spoken with my doctors about it all and I've pretty much gotten the "you can try whatever you want, everyone is different and everything reacts different." I will just be keeping a close eye on what is happening to my body and hopefully find somethings to help me out. 

 

Matt, I want to thank you very specifically for this statement. This is something that I am repeating to myself over and over so I remember that this will pass. I am very thankful you reached out and provided me with some sort of strategy to get me through this. 

I feel like we all know what we are suppose to do to keep ourself healthy, but sometimes it just doesn't work, and no matter what you try to do fix it, it continues to be broken. So reminding myself that this time will pass and to just keep working to make it better really helps have motivation to continue to want to do better. 

Thank you all again so much and I will keep you posted about what's going on. Being young, and uneducated about all of this, and dealing with issues that I feel like most people will never experience is difficult and I am so glad to be able to talk to others that share my situation and can understand me. 

Just wanted to point out an alternative viewpoint. I've been gluten-free for 10 years and had depression for 15 or a bit more. About 4 years ago it got changed to a bipolar Dx. Occasionally I have to change the level of my meds. I still don't feel totally great, like I used to over 15 years ago, but I know I'd be awful without the meds. I pray someday to find a balance. Sounds like you are well on your way!

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On 12/30/2017 at 2:29 AM, pemlhs1201 said:

Matt, I want to thank you very specifically for this statement. This is something that I am repeating to myself over and over so I remember that this will pass. I am very thankful you reached out and provided me with some sort of strategy to get me through this. 

You're most welcome and thank you for your kind words :) Everyone here has gone through their own, very individual battles and come through the other side. Take strength from that too. I spent a lot of time reading the stories on this forum and learning about some of the weirder manifestations of gluten on the body that I'd not even realised were connected. It's a giant jigsaw puzzle and I still remember the bizarre feeling of triumph when I realised my white tongue or funny shaped fingers were also explained by the dreaded gluten! 

Victoria's made a good point below as well:

13 hours ago, Victoria1234 said:

Just wanted to point out an alternative viewpoint. I've been gluten-free for 10 years and had depression for 15 or a bit more. About 4 years ago it got changed to a bipolar Dx. Occasionally I have to change the level of my meds. I still don't feel totally great, like I used to over 15 years ago, but I know I'd be awful without the meds. I pray someday to find a balance. Sounds like you are well on your way!

Because gluten exposure can cause depression doesn't mean that you're invulnerable to non gluten depression striking. I came to the conclusion following my initial success going gluten free that depression could still strike, although it didnt come with some of the recognisable physical tells of the gluten mediated depression.

I think over time you become more prone to it and so all the good advice about dealing with depression still applies to you even if you're being strict on the diet.  This ranges from simple things like eating the right things to getting some sunlight each day, investigating counselling and cognitive behavioural therapy techniques to challenge some of the negative thought patterns that become engrained over time.  I also found talking and writing about it helped, if you're having trouble getting to sleep you can read about it here.  :P Basically taking action, exercise, supplementing, talking, writing, mental exercises, and yes, seeing your doctor and maybe taking an anti depressant, can all help, just as staying strict on the diet will also help in time. 

All the best :)

Matt

 

 

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On 12/29/2017 at 8:59 AM, cristiana said:

(note - the quote date/time stamp here isn't right, I had trouble with the cut/paste)

I apologize for the confusion. I do not eat gluten. I am on a very strict gluten free diet. However, I have recently been exposed to it for around a month now and I am not sure how but I am working to fix that and make sure my diet is again completely gluten free

 

 

Hi - I think some of the issue here may be stemming from confusion about the word "exposed" and the two things in bold above -- while you are very strict about eating gluten, am I right that you've been accidentally eating some and for the past month have accidentally been not-gluten-free?  If so, that likely is the cause of your cognitive problems, which I'm sure must be really difficult.  It sounds like you're on the right track with trying to make sure you get this accidental gluten ingestion eliminated from your environment.  Have you checked all your meds, hand moisturizers, etc. (I don't worry about most care products, but I do care about what goes on my hands)?  Dedicated toaster, cutting board, non-stick cooking utensils and pots?

Also, is your thyroid ok?  As auto-immune disorders seem to run in packs, it's not unusual to have Hashimotos Hypothyroidism and Celiac together.

As far as communicating the issue to others (your original question), I think it's fair to say to those who know you well that this is a side effect of an accidental glutening, and as for others, I think you can just let it go.  Chances are they don't see your struggles as intensely as you feel them. Bringing it to their attention may even make it more of an issue.

 

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On 12/28/2017 at 10:12 PM, pemlhs1201 said:

Hello, Thank you for reading my post and any feed back anyone can give. I apologize ahead of time if it's a little all over the place. I recently have had an exposure to gluten and it fully effects my brain function so I am a little all over the place.

Well, I am 29 years old and I was diagnosed with Celiac Disease almost 5 years ago. My processes of discovering I was Celiac positive mostly involved my arthritis in my knees, however, after the diagnosis and removing gluten completely from my diet, I realized how much it affected my brain function. I went from a really depressed, bipolar, suicidal person to someone who is smiling, laughing and truly happy a majority of the time. 

The biggest things I have run into after my diagnosis are memory loss or lack of memory, and significant mood changes if exposed for too long, both of which are really hard for me to explain to people, especially friends who may be dealing with my faults directly. Most of the time I am really good about my diet. I try my hardest to not eat out, clean the counters before I make dinner, and avoid all gluten products. I also tend to not eat gluten free products either and I don't drink. So being exposed to gluten for a long enough period of time for my brain to be struggling is a big deal for me and frankly pretty damn scary. 

My doctors have done many tests in the past couple days, the most important one for this subject is the scan of the function of my brain, or lack there of. Right now my brain's function has diminished about 25% of normal, some parts are over compensating and other parts are pretty much not working correctly. I am having a hard time fighting my own demons, convincing myself that people believe I am some awful person, when I know for a fact that none of those words have been said to me, especially lately, yet I conjure up that that is what people think. 

Anyway, I am in search of some help, mostly people I can talk to that may be experiencing the same thing. How do you explain to people you are struggling with a mental disorder that is controlled simply by what you eat, when you know that they will never truly understand no matter how many different ways it’s explained? How do you explain to people you are sick when your brain can’t function well enough for you to realize it? and How do I not drive myself crazy while my body recovers from my exposure?

If someone can lay some insight as to what is going on that would be so helpful, or even just talk me through it that would be great too. 

Thank you for your time. 

Thank you for posting. Your honesty and openness is refreshing. My son is five years old and experiences the same as you, to include hallucinations, insomnia and stereotypies to name a few. His symptoms are all neuro psychological. Have you looked into trying a mild blood pressure med to control the accidental glutening? We were prescribed clonodine. It's not something to take all the time, just if you need to take the anxiety and insomnia levels down. I have only given it to my son during one episode and the first time I gave it to him he said, "finally!" and then fell asleep. He had been suffering from insomnia, anxiety, intrusive and dark thoughts for days. He needed the sleep. (Side note:  a lot of meds are made with lactose so you should always ask for dairy free and of course gluten free when filling a prescription).

So my son responds very negatively to the following foods which are considered by some to be cross reactive to gluten. 

  • Rye
  • Barley
  • Spelt
  • Wheat
  • Oats 
  • Buckwheat
  • Sorghum
  • Millet
  • Amaranth
  • Quinoa
  • Corn
  • Rice
  • Potato
  • Hemp
  • Teff
  • Soy
  • Milk (Alpha-Casein, Beta-Casein, Casomorphin, Butyrophilin, Whey Protein and whole milk)
  • Chocolate
  • Yeast
  • Coffee (instant, latte, espresso, imported)
  • Sesame
  • Tapioca (a.k.a. cassava or yucca)
  • Eggs

 

Our best bet has been to only eat fresh fruits, vegetables, grass fed meat and gluten free nuts. I highly recommend trying an AIP diet. 

After a glutening I may give him one or two methylated B12 supplements. Have read studies involving the use of B9 in psychiatric disorders, but haven't tried it.

Let me know if you want to chat or have any questions. I've been dealing with this for about two years now. We can probably learn from each other. 

 

P.s. Just discovered recently that he reacts the same way to coconut as he would to gluten. Eliminated and now we're normal again. If you start feeling like you can't climb out of it then look very closely at your diet. Food logs are easier to make if you're eating very limited whole foods. You can slowly add things back. 

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6 hours ago, artistsl said:

Thank you for posting. Your honesty and openness is refreshing. My son is five years old and experiences the same as you, to include hallucinations, insomnia and stereotypies to name a few. His symptoms are all neuro psychological. Have you looked into trying a mild blood pressure med to control the accidental glutening? We were prescribed clonodine. It's not something to take all the time, just if you need to take the anxiety and insomnia levels down. I have only given it to my son during one episode and the first time I gave it to him he said, "finally!" and then fell asleep. He had been suffering from insomnia, anxiety, intrusive and dark thoughts for days. He needed the sleep. (Side note:  a lot of meds are made with lactose so you should always ask for dairy free and of course gluten free when filling a prescription).

So my son responds very negatively to the following foods which are considered by some to be cross reactive to gluten. 

  • Rye
  • Barley
  • Spelt
  • Wheat
  • Oats 
  • Buckwheat
  • Sorghum
  • Millet
  • Amaranth
  • Quinoa
  • Corn
  • Rice
  • Potato
  • Hemp
  • Teff
  • Soy
  • Milk (Alpha-Casein, Beta-Casein, Casomorphin, Butyrophilin, Whey Protein and whole milk)
  • Chocolate
  • Yeast
  • Coffee (instant, latte, espresso, imported)
  • Sesame
  • Tapioca (a.k.a. cassava or yucca)
  • Eggs

 

Our best bet has been to only eat fresh fruits, vegetables, grass fed meat and gluten free nuts. I highly recommend trying an AIP diet. 

After a glutening I may give him one or two methylated B12 supplements. Have read studies involving the use of B9 in psychiatric disorders, but haven't tried it.

Let me know if you want to chat or have any questions. I've been dealing with this for about two years now. We can probably learn from each other. 

 

P.s. Just discovered recently that he reacts the same way to coconut as he would to gluten. Eliminated and now we're normal again. If you start feeling like you can't climb out of it then look very closely at your diet. Food logs are easier to make if you're eating very limited whole foods. You can slowly add things back. 

Cross reactivity is a bit of a myth type thing, but we do get food sensitivities and intolerance issues that do creep up and they are always different for each person. A food diary and keeping track of what causes symptoms is what you need to do. Here is a true gluten avoidance list and a article on food sensitivities.
https://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life

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12 hours ago, Nikki2777 said:

 

As far as communicating the issue to others (your original question), I think it's fair to say to those who know you well that this is a side effect of an accidental glutening, and as for others, I think you can just let it go.  Chances are they don't see your struggles as intensely as you feel them. Bringing it to their attention may even make it more of an issue.

 

This is great advice!

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7 hours ago, artistsl said:

 

So my son responds very negatively to the following foods which are considered by some to be cross reactive to

I can only guess how hard this has been for the three of you. I hope one day he can get at least some of those back. Have you looked at probiotics? 

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14 hours ago, Jmg said:

I can only guess how hard this has been for the three of you. I hope one day he can get at least some of those back. Have you looked at probiotics? 

He is taking Garden of Life for Kids which contains 14 live cultures. I tried giving him coconut kefir, but that backfired on me due to the unknown coconut sensitivity. 

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8 hours ago, artistsl said:

He is taking Garden of Life for Kids which contains 14 live cultures. I tried giving him coconut kefir, but that backfired on me due to the unknown coconut sensitivity. 

Has it helped at all? I'm no expert but I'm interested in what research has been done into the effectiveness of probiotic strains, mainly in relation to my milk allergy which seems to be histamine mediated at least in part. I'm currently wading through this paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5622781/  and Chris Kresser's site has an overview which does have some useful links: https://kresserinstitute.com/gut-flora-food-allergies-connection/

 

 

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On 1/25/2018 at 6:11 AM, Jmg said:

Has it helped at all? I'm no expert but I'm interested in what research has been done into the effectiveness of probiotic strains, mainly in relation to my milk allergy which seems to be histamine mediated at least in part. I'm currently wading through this paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5622781/  and Chris Kresser's site has an overview which does have some useful links: https://kresserinstitute.com/gut-flora-food-allergies-connection/

 

 

I feel like it helps with anxiety. He's had antibiotic exposure while in the womb, and four occasions prior to age four. I believe there is definitely something to it. Have considered and will likely try an at home FMT.

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2 hours ago, artistsl said:

I feel like it helps with anxiety. He's had antibiotic exposure while in the womb, and four occasions prior to age four. I believe there is definitely something to it.

It seems like some strains are more effective than others, but I've yet to put that to the test. 

Quote

Have considered and will likely try an at home FMT.

From what I've read there's been some very promising results from that. If you go ahead I hope you can post an update here. 

Best of luck to you and your son whichever path you choose. 

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I'd like to say think you for this post and the responses. I have suffered from 2 decades of depression. 

Doctors have thrown every med known to man at me and therapy for 10 years. None of it worked. I already know gluten and my body hate each other. The longer I stay away from it, the harder I am hit when I eat it again. I know now that it causes inflammation that aggravates prior injuries or just certain muscles that are tight to begin with. I know it causes GI problems and brain fog. I have no doubt after experimenting these past few weeks. I feel like my own guinia pig.

Since depression for me is treatment resistant, I suspect something else and honestly, I hope after I stop gluten that will improve and maybe go away. I have had to deal with abuse and PTSD along with other life stressors so it isn't the only cause but I highly suspect that it is aggravating the problem. 

I'm glad to read about someone who had depression improve after going gluten-free. Can I ask how long it took after going gluten-free for you to improve in that regard? The longest I went was 2 months and it didn't improve depression but other things did improve. I suspect it wasn't long enough because of years of damage as well as mitigating circumstances compounding on my poor mood.

I just need some hope here. Because doctors have failed me left and right. I can't tell you how many times doctors have screwed up other things for me. Prescribing me meds at the same time that interact and almost causing seizures that could kill me. I knew something was wrong, called a trusted doc and he said to stop taking that med because I might seize and die. And I spent over 2 years trying to find a diagnosis for a spinal condition that everyone brushed off. Surgery fixed it and I can walk again for more than 5 minutes. I can walk for over an hour at a time again and it's been less than a year since that surgery. I didn't give up and accept what they said. I wouldn't be walking if I had.

Sorry I rambled. Just wanted to say thank you for giving me hope. I see a new doc in 2 weeks and am asking for a full blood panel to see what is going on with my body. I know there is something off about my thyroid. The last blood test set I got said so. I have kept eating gluten to try to get the celiac test but it's just not friggen worth it to suffer for several more weeks. It may not be accurate either because I've been gluten-free for too long. And even if it isn't celiac, I know gluten is an issue. I just want to know if it is the only issue or if the damage done has to be reversed with other help to fully get better. 

I think I'm gonna go gluten free and do an elimination diet for 3 months and see what happens and have my doc run a full blood panel anyway in 2 weeks to see what is going on inside. I read "Whole 30" which is an elimination diet and eliminates most possible triggers for food allergies. I want to implement that immediately and it's also gluten free. Might help someone else in my position. Thanks again.

 

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    Jefferson Adams
    Celiac.com 06/23/2018 - If you’re looking for a great gluten-free Mexican-style favorite that is sure to be a big hit at dinner or at your next potluck, try these green chili enchiladas with roasted cauliflower. The recipe calls for chicken, but they are just as delicious when made vegetarian using just the roasted cauliflower. Either way, these enchiladas will disappear fast. Roasted cauliflower gives these green chili chicken enchiladas a deep, smokey flavor that diners are sure to love.
    Ingredients:
    2 cans gluten-free green chili enchilada sauce (I use Hatch brand) 1 small head cauliflower, roasted and chopped 6 ounces chicken meat, browned ½ cup cotija cheese, crumbled ½ cup queso fresco, diced 1 medium onion, diced ⅓ cup green onions, minced ¼ cup radishes, sliced 1 tablespoon cooking oil 1 cup chopped cabbage, for serving ½ cup sliced cherry or grape tomatoes, for serving ¼ cup cilantro, chopped 1 dozen fresh corn tortillas  ⅔ cup oil, for softening tortillas 1 large avocado, cut into small chunks Note: For a tasty vegetarian version, just omit the chicken, double the roasted cauliflower, and prepare according to directions.
    Directions:
    Heat 1 tablespoon oil in a cast iron or ovenproof pan until hot.
    Add chicken and brown lightly on both sides. 
    Remove chicken to paper towels to cool.
     
    Cut cauliflower into small pieces and place in the oiled pan.
    Roast in oven at 350F until browned on both sides.
    Remove from the oven when tender. 
    Allow roasted cauliflower to cool.
    Chop cauliflower, or break into small pieces and set aside.
    Chop cooled chicken and set aside.
    Heat 1 inch of cooking oil in a small frying pan.
    When oil is hot, use a spatula to submerge a tortilla in the oil and leave only long enough to soften, about 10 seconds or so. 
    Remove soft tortilla to a paper towel and repeat with remaining tortillas.
    Pour enough enchilada sauce to coat the bottom of a large casserole pan.
    Dunk a tortilla into the sauce and cover both sides. Add more sauce as needed.
    Fill each tortilla with bits of chicken, cauliflower, onion, and queso fresco, and roll into shape.
    When pan is full of rolled enchiladas, top with remaining sauce.
    Cook at 350F until sauce bubbles.
    Remove and top with fresh cotija cheese and scallions.
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    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its celiac disease, a sensitivity to the protein, or any other reason, it can be really hard to find suitable places to eat out. When you’re on holiday in a new and unknown environment, this can be near impossible. As awareness of celiac disease grows around the world, however, more and more cities are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the list below.
    Perhaps unsurprisingly, the U.S is a hotbed of gluten-free options, with four cities making the top 10, as well as the Hawaiian island of Maui. Chicago, in particular, is a real haven of gluten-free fare, with 240 coeliac-safe eateries throughout this huge city. The super hip city of Portland also ranks highly on this list, with the capital of counterculture rich in gluten-free cuisine, with San Francisco and Denver also included. Outside of the states, several prominent European capitals also rank very highly on the list, including Prague, the picturesque and historic capital of the Czech Republic, which boasts the best-reviewed restaurants on this list.
    The Irish capital of Dublin, meanwhile, has the most gluten-free establishments, with a huge 330 to choose from, while Amsterdam and Barcelona also feature prominently thanks to their variety of top-notch gluten-free fodder.
    Finally, a special mention must go to Auckland, the sole representative of Australasia in this list, with the largest city in New Zealand rounding out the top 10 thanks to its 180 coeliacsafe eateries.
    The full top ten gluten-free cities are shown in the graphic below:
     

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

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    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

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      EMA
      IGA A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to see if you have celiac. It looks like you are missing the DGP tests. Perhaps you can get them done while you are waiting for your gastro appointment. You could possibly have a more definitive result from them.  
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