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Nowhere Left To Go But Insane


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#16 Ninja

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Posted 18 April 2012 - 06:59 AM

That's awesome that you are doing so much to keep your body healthy. I'm sure it doesn't feel like it now, but in the long run you'll be better for it.

A thought that struck me was: nothing in life is permanent unless you believe it to be. Yes, money makes things ridiculously hard and sickeningly competitive, but the idea is that YOU have the power to change things. If you let the external world take that away from you be it through money or insomnia, not working, etc. you'll feel powerless and out of control (yea, it's totally cliche, I know..). No one likes that feeling.

I think it's important to remember that you will sleep again. If you don't, you'll figure out why you can't and then sleep. Like Bubba's Mom said, it's a good sign that you are dreaming.

I take NOW methyl B12 lozenges (one - 1000 mcg's) an hour before I go to sleep and it really seems to help me... granted my insomnia was very minor and not consistent. The epsom salt baths really help with relaxation, too.

Honestly, expecting others to change when they don't even know why they should be changing is probably not realistic. Wheat doesn't cause them any overt problems... there's no reason to search and/or read about it. That's their problem, you don't have to fix it for them.

Give, don't take away: Yes, there is gluten in a lot of places where it needn't be, but... you can't probably make a "safe" version that is better. You want your grandma's biscuits? Ask a friend to come over sometime and make your own. I'm sure there's biscuit recipes floating around on this site somewhere... :)

And as others have said, being 100% gluten-free is really crucial.

~Laura
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Gluten Free 2/12 

 

Let the soul speak with the silent articulation of a face

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#17 Skylark

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Posted 18 April 2012 - 07:44 AM

In capsule form I take: Vitamins A, B1, B2, B3, B5, B6, B12*, C, E, Iron, Selenium, Folic Acid.
Sublingual form: D3, K2.
Powder form: calcium, magnesium.

This is not a complete list. In particular I notice zinc is missing, which can be critically important for some people. You also are not getting trace elements, which can be very low in non-organic food. Also, have you looked into methylfolate?
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#18 GlutenFreeRampage

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Posted 18 April 2012 - 08:15 AM

Well, then, you are not gluten free. You can't do that. The minute you put gluten back in, you're not gluten free.


I know... it's like throwing gasoline on a fire. I'm sure very few people can claim to be 100% gluten-free. Any time you leave the sanctity of your gluten-free 'bubble', into a world where it floats around almost as much as the common mold spore, you're not gluten free either. I know, that makes us all mad. But what can we do? Literally live in a bubble? The house here should be almost 99% free of it, the utensils/pots/pans/etc. are washed thoroughly and kept from cross contamination, as are the foods I regularly eat. Yeah I slip up and do bad from time to time when I know I could have done more to avoid it, but those instances are becoming fewer and farther between.

I honestly can't tell much difference between getting trace amounts and

Many of us TOLD you, your sleep is messed up from gluten. It's a neurotoxin. To help with your sleep issues, NO GLUTEN.


There's a myriad of other factors that possibly contribute to my lack of sleep, but I'll try harder to avoid even the trace amounts that I can't see.

To help with the serious raging anger you have? That's not our place ---and that is not what this forum is about.


I posted this in the "gluten intolerance and behavior" forum. Raging anger is behavior, and I'm having it because I hate avoiding gluten because I have at least an intolerance to it. I'm totally in the right place!

Here is what I know: we cannot control all the things that happen to us, we can only control the way we RESPOND to it.


Awesome advice. It reminds me of a quote from a movie called 'Revolver' that says something like, "if you change the rules on what controls you, you change the rules on what you can control". I'm very guilty of letting too many things get to me and affect the way I feel, and my responses are wild sometimes. I'm way too passionate about things. I need to step back, breathe, and just try to accept the things I cannot change and pray for the ability to change the things I can (Serenity prayer, another incarnation of the same advice :) ).

But we ARE also telling you, some of that anger might very well diminish if you got rid of the gluten 100%.


I hope it does, but I still feel like my psychological desire to have what I can't have is more powerful; also, if I want to be crazy-serious about it, that would mean no more visits to my Grandparent's house. It's terrible having to tell them I'm not going to visit them anymore because their house is poison to me. And I'm sure they're covered in gluten almost all the time, so that'd mean no visits FROM them too. No hugs either. And other family/friends? Well, that living in a bubble scenario is starting to make more sense.


If you have unDXed Celiac, rather than just an intolerance, it's enough to keep your immune system whacked out like it's on crack? :blink: If I get even a trace of gluten..I know I won't be sleeping for a while! :o I get completely wired...and that's just from trace that I can't even see.


That kinda freaks me out, but yeah my immune system has been total crap since early childhood. I'm much better now with the diet I try to adhere to... maybe I need to take it to extreme levels and shut myself off from the outside gluten-filled world... I always feel a bit wired too. Ok, very wired. A doctor once thought I was on crack or meth because my blood pressure and heart rate were very high even though I was baseline calm... and now knowing that gluten does affect the body that way, it's definitely a factor. I'm a skinny guy with a high rate of metabolism, so I'm naturally wired up too. It's gonna be a long journey to figure this out, but once I've tackled the problem, another one will rear its ugly head to ruin me; it always does; but I don't want to get into all the other problems I've had in the past. Trading one illness for another, and another...
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#19 Skylark

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Posted 18 April 2012 - 08:47 AM

To help with the serious raging anger you have? That's not our place ---and that is not what this forum is about. Frankly, the whole world is not going to change just for you.

IH, why is anxiety or depression OK but anger is not? Do you realize that severe irritability is every bit as much a symptom of mental imbalance as anxiety? That irritability and insomnia are the hallmarks of mania? Sure that first post is hard to read, but you have to read between the lines.

Your advice to stay strictly gluten-free is good but there is no guarantee that gluten is the underlying cause. My bipolar irritability and insomnia did not go away strictly off gluten. It took other interventions. If you think this forum is not the place for other interventions we'd best stop talking about Hashimoto's, depression, other intolerances, and all the other health problems that people with celiac disease experience that are not necessarily helped by only a gluten-free diet.

I hope it does, but I still feel like my psychological desire to have what I can't have is more powerful; also, if I want to be crazy-serious about it, that would mean no more visits to my Grandparent's house. It's terrible having to tell them I'm not going to visit them anymore because their house is poison to me. And I'm sure they're covered in gluten almost all the time, so that'd mean no visits FROM them too. No hugs either. And other family/friends? Well, that living in a bubble scenario is starting to make more sense.

You're just being extreme. :P You know full well there is a difference between drinking normal beer and hugging a family member. It's true you might not be able to eat food they serve you and might need to bring your own or offer to cook.

Is your lack of willpower from the insomnia? It's hard to keep it together not sleeping. You might get better 100% gluten-free but see my post above about things your supplements are missing. I really would recommend one of the many chelated, complete supplements for bipolar illness, whether or not you've been formally diagnosed with bipolar. At a bare minimum you should have zinc and try methylfolate.
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#20 IrishHeart

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Posted 18 April 2012 - 08:54 AM

No one gets "wired" better than I do. :blink: I used the phrase wired-for-sound to describe my bizarre gluten-induced lunacy I suffered for 3 years.

I get it. I do.

What I meant by raging anger was the pretty outrageous stuff you talk about --hatred for other cultures, calling people hypocrites, poisoning crops, wanting to hurt others...yada yada yada---that over-the-top stuff? really?? That's either hyperbole --for effect---or you are not rational.

Which is it?? :) I think you are rational. I think you are just so exhausted but revved up that you can't stop yourself from spouting all that's in your head.

Again, I get it. I really do.

Behavioral issues we can help with ---means gluten-induced "temper tantrums in children", adults who are being short -tempered, finding yourself feeling depressed and anxious or manic, experiencing mild paranoia ---that sort of thing.

We can claim to be "knowingly" 100% gluten-free. Meaning none of us purposefully do things like drink beer. We strive to avoid it and we can because we take the time to understand the reality of living gluten free and it does not involve living in a self-imposed bubble and being angry as a result.

Why do you have to stop visiting your grandparents or giving them hugs??? Hon, you really are unnecessarily paranoid.

Gluten eaters are not contagious!

I feel as if no matter what we say, you have a contrary response.
We want to help!! :)

You need to calm down a little bit and view a gluten free diet in a different way. It does not mean we live a bubble and avoid social contact.

I DO understand what you are saying about the myriad of factors that disturb your sleep. I had them too and I had sleep studies done, took various drugs, and tried stress -reduction classes, meditation, yoga and everything else that was suggested but I was still very ill from unDxed celiac and they were totally ineffective!! I still lay awake every night and nearly lost my freakin mind from it. Until I went gluten-free and it all calmed down and my adrenals stopped being so tapped from the stress and now, I sleep better than I have my entire adult life.

However, IF gluten is your problem, then THAT has to go!

But it is not instantaneous.

You will have to be patient ---and from all you are writing here--I suspect that will be your biggest challenge.

We want to help, hon. We do!

Best wishes, IH
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#21 IrishHeart

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Posted 18 April 2012 - 08:57 AM

IH, why is anxiety or depression OK but anger is not? Do you realize that severe irritability is every bit as much a symptom of mental imbalance as anxiety? That irritability and insomnia are the hallmarks of mania? Sure that first post is hard to read, but you have to read between the lines.



Yes, I had it. Lots of anger and irritability. I did not say it was not okay or that it was not part of the complexity of gluten-induced mania.

I explained more fully what I meant in the post above. Perhaps I worded it wrong and I explained what I meant further.

I meant his glaring rage and over-the-top stuff about Jews, etc.

I am just trying to get this poor sleepless kiddo to calm down a little.

I commisserate. I lived it for years. It's awful. I felt totally detached and insane from lack of sleep and gluten head. I held onto my sanity with all I had.

I am not saying a gluten-free diet solves everything. I do not believe that --even for myself --and I never say that to anyone and you know I am not that naive.

But IF gluten is an issue, which is why he is on here in the first place, then dabbling in beer drinking is not helping his efforts. IMHO

I'll leave it you to handle as you seem to have more valuable information for him.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#22 Skylark

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Posted 18 April 2012 - 08:59 AM

Gotcha. When I got that way I was really not rational. About the only thing that would get me to calm down and sleep was Seroquel. <_<
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#23 Ninja

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Posted 18 April 2012 - 09:16 AM

Gluten can be like an opioid. There's no rule on how long it takes to "detox" (as far as I know)... especially if you've had a few gluten-y treats here and there along the way.
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Gluten Free 2/12 

 

Let the soul speak with the silent articulation of a face

~Rumi
 

 


#24 IrishHeart

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Posted 18 April 2012 - 09:19 AM

Sadly, I tried them all--even Seroquel--and it made me jump right out of my skin all night long. None of those things worked for me. Instead of helping me sleep, they created a hyperactive mind. So, then I was not only exhausted, but I was wide awake and dopey, but racing in my head and heart.

Oddly, my BP was 80/50.

My doctor suggests that when gut absorption is impaired, medications do not work as they should in celiacs. For that reason, I cannot take pain meds either, which would be very helpful with this horrible joint pain I have. Also, any meds that involve the seratonin component---have the opposite effect on me.

So, I take nothing. I slug it out.

In the end, I think our young friend here has to adopt a more realistic picture of what being gluten-free means and how it can help with the many complications that arise from a true gluten intolerance, including the seemingly irrational behavior we exhibit and the anger and frustration of it all.

IMHO
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#25 GFinDC

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Posted 18 April 2012 - 12:34 PM

Hi Rampage,

I was just thinking of another thing that might be bothering you besides flowers, sunshine, and singing birds. :D Hyper thyroid symptoms could include anger and irritability and insomnia also. There is an autoimmune condition called Hashimoto's thyroiditis where the immune system attacks the thyroid. People with celiac get Hashi's sometimes. It can cause both hyper and hypo symptoms at different times. They test it by a blood draw and I think the test is for TPO antibodies. Anyhow, it might be something to have checked. I think you have to ask for the antibody tests though, or they might just test your hormone levels only. Hormone levels only won't detect Hashi's so make sure they do test for the antibodies. I don't think they test inside bubbles though, could be a problem there... :)

Oops, wait a minute, smilies don't piss you off do they? :(
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#26 Skylark

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Posted 18 April 2012 - 01:48 PM

Good point! Hyperthyroidism definitely causes irritation and sleeplessness. If it's longstanding it's more likely Graves' than Hashi's. Hashi's will make you swing between hyper- and hypo.
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#27 IrishHeart

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Posted 18 April 2012 - 02:01 PM

Hi Rampage,

I was just thinking of another thing that might be bothering you besides flowers, sunshine, and singing birds. :D Hyper thyroid symptoms could include anger and irritability and insomnia also. There is an autoimmune condition called Hashimoto's thyroiditis where the immune system attacks the thyroid. People with celiac get Hashi's sometimes. It can cause both hyper and hypo symptoms at different times. They test it by a blood draw and I think the test is for TPO antibodies. Anyhow, it might be something to have checked. I think you have to ask for the antibody tests though, or they might just test your hormone levels only. Hormone levels only won't detect Hashi's so make sure they do test for the antibodies. I don't think they test inside bubbles though, could be a problem there... :)

Oops, wait a minute, smilies don't piss you off do they? :(


Good thoughts, Gee Free Dee Cee!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#28 pricklypear1971

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Posted 18 April 2012 - 02:01 PM

Hi Rampage,

I was just thinking of another thing that might be bothering you besides flowers, sunshine, and singing birds. :D Hyper thyroid symptoms could include anger and irritability and insomnia also. There is an autoimmune condition called Hashimoto's thyroiditis where the immune system attacks the thyroid. People with celiac get Hashi's sometimes. It can cause both hyper and hypo symptoms at different times. They test it by a blood draw and I think the test is for TPO antibodies. Anyhow, it might be something to have checked. I think you have to ask for the antibody tests though, or they might just test your hormone levels only. Hormone levels only won't detect Hashi's so make sure they do test for the antibodies. I don't think they test inside bubbles though, could be a problem there... :)

Oops, wait a minute, smilies don't piss you off do they? :(



You made me giggle.

Before I was treating my Hashis I would have strangled you (but regretted it later) for that post.

Happily, now, I just giggle at myself.

And yes, it is a TPO Antibody test and you must ask for it - it isn't standard. Also ask for TSH and free t3/t4. Perhaps TRAb?

And yes, Hashis can make you a tad moody. You may also look into other hormones as well, as the combo of Celiac/Hashis really wreaks havoc on your hormones, adrenals.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#29 GlutenFreeRampage

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Posted 19 April 2012 - 08:49 AM

When I was typing out the list of supplements I take, I did notice how there was a lack of trace minerals and stuff like zinc, copper, etc. I used to take multi-vitamins that supplied it all, but stopped doing it because I couldn't find any without the cyanide-B12. I'll put it on my list to find something for my next order at Vitacost that will give me the right stuff... I'd been hoping to get the rest of what I needed from my regular habit of juicing. I suppose I do need more sublinguals to avoid GI malabsorption.

Gluten eating people (mainly their clothing) and their kitchens / dining rooms are indeed contaminated with gluten; and I've heard stories of super-sensitive celiacs reacting to simply walking into a place that regularly uses wheat/gluten. Bad advice to say otherwise that these people and places are not harmful. 100% free is extreme, unless it's still ok to breathe it in? Which doesn't make sense to me.

No more talk about beer, please... it's not a major concern for me, it was just one of the things I miss.... and it's one thing that I should avoid for other reasons... liver health... and stuff.

<<offensive material deleted by moderator>>

I have noticed that some medications or herbal remedies, taken orally, have had the opposite effects on me. I can't remember where I heard this, but the only medicine we need is really just healthy food. I still need work on my diet, but I believe that many ailments can be solved in the long run with diet alone. And for the ones that can't be helped with just healthy eating, then, I strongly believe that's where a "survival of the fittest" ideology comes into play... or to put it another way, it's all genetic and there's nothing much more that can be done except to make sure I don't reproduce offspring... If I'm genetically predisposed to get sick all the time, then I'm certainly not passing it on to an innocent child.


I'll see what I can do in respect to getting some more bloodwork done.

A therapist I once visited, for meditation/massage/accupressure/etc. said that she could tell my adrenal glands were always overworked and that it's like my body is stuck in a fight-or-flight response. She figured it might have started from an early childhood trauma I received, which was a correct assumption. It's funny how one physiological disorder can cause other problems to manifest. I feel so broken sometimes, yet from an outward appearance I usually seem to be fine and others are relentless at expecting way too much of me.


It never helps to be compared to someone else with similar, or worse, disorders and then be expected to feel/act/perform just as good or better. I'm not them. I don't share the same goals and aspirations. What I want to do with my life is not the same. Apples and oranges. But, yeah, my family says they understand then come back at me with hostility because I'm not meeting their expectations. It was their gamble to raise me, they lost, so no need to make me feel like the loser. I need to make my own way... somehow... some day.. and I'll have to do it without their consent or approval. I'm not a part of them, I'm way too different. Oh crap I'm rambling again, sorry!

Edited by psawyer, 20 April 2012 - 05:18 PM.
offensive material deleted by moderator

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#30 Skylark

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Posted 19 April 2012 - 09:26 AM

When I was typing out the list of supplements I take, I did notice how there was a lack of trace minerals and stuff like zinc, copper, etc. I used to take multi-vitamins that supplied it all, but stopped doing it because I couldn't find any without the cyanide-B12. I'll put it on my list to find something for my next order at Vitacost that will give me the right stuff... I'd been hoping to get the rest of what I needed from my regular habit of juicing. I suppose I do need more sublinguals to avoid GI malabsorption.

No, what you need are chelates. Sublinguals are the latest way to extract money from gullible consumers. Very few things are actually absorbed sublingually. You pay extra, swallow the supplement, and absorb it through your digestive tract as usual.

There are quite a few products with chelated micronutrents. We've known for decades to give proteinates or amino acid chelates to farm animals because they don't absorb inorganic. For some reason the supplement industry has failed to carry this knowledge over to humans. Chelates are particularly important for getting minerals and trace elements into your brain. EMPowerplus has the chelates. QuietMinds and EvinceNaturals are supposed to be similar to EMPowerplus but I've never tried them. My psychiatrist friend has had some moderate success with Metagenics supplements but she says EMPowerplus is better.

You are overly concerned about cyanocobalamin. It is probably slightly inferior to methylcobalamin but it is NOT actively toxic the way you are imagining. If you have to take some to get the chelated trace elements, it's well worth the tradeoff. Cyanocobalamin will not make you irritable/insomniac. Lack of zinc and trace elements can.

Also don't overlook my mention of methylfolate. If this happens to be your problem you will fix it in a matter of weeks with one pill.
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