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Nowhere Left To Go But Insane
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39 posts in this topic

I have Crohn's and found out by my own trial and error that I have a sensitivity to gluten. It helps a great deal to stay gluten-free, but it's only one severed head of the hydra that plagues me. I know this is a forum for Celiacs, but it made more sense to post here instead of a Crohn's forum - most Crohnies are ignorant to the fact that gluten is poison and that they'd benefit from avoiding just as I have.

I slept like a baby the first few weeks being gluten-free, then after that it was back to the same tossing/turning until my mind could no longer physiologically stay conscious.... by which time it's time to get up and get ready for another day of work without much, if any, sleep. Day after day, week after week until my health deteriorates and I stay constantly sick. No amount of OTC or prescription sleep remedies can knock me out. Not even combined overdoses taken with alcohol. I refuse to do drugs like Lunesta or Ambien, for I am very certain dangerous sleepwalking episodes would occur. In fact, now, I refuse to take any form of industrial chemicals pandered to the public as "medicine"... I don't need any more of my internal organs to fail or become poisoned. It's all natural for me now.

I've been gluten-free for at least 8 months now, and the mood swings are not any better. From time to time, I find myself snapping back at people, flipping the bird, cursing them, etc. I'm becoming increasingly intolerant of gluten-eating people... and society as a whole. <<offensive material deleted by moderator>>

I hate sitting at the same table as the other people while they get to enjoy many of the foods I must stay away from, both gluten-containing and other foods not suitable for Crohn's.

A special Crohn's diet didn't bother me too much, but gluten free has sent me over the edge.

I pray for the day when the rust fungus devastates the entire world's supply of wheat. If I could, I would travel to parts of the globe to collect my own samples to disperse amongst the evil crops of this backwards nation. Hopefully mother nature will be able to handle it without my help, and wipe out this insidious grain to leave room for the healthy ones.

I'm unable to put on blinders and a fake smile like many of you, acting like nothing's wrong and that it'll all be ok. I'm stuck in a prison without bars, looking at how smug people are because they've found a medicine that works.. so then they can continue to work and support themselves without needing to leach onto someone for dependency. I hope those "medicines" erode you all from the inside out. I hope you really do get what you pay for in the end.

Every single time someone, who darn well knows of my diet restrictions, asks me if I want to eat this or that... bla bla bla... I want great harm to come to them. I want to bring them down to my level to make them finally understand.

Or maybe I should tuck tail between legs and run away from the few friends/family I have left? Are they detrimental to my well-being? Do I have to run and hide from everything just so I won't explode on them every time they unknowingly tease me?

I absolutely can not handle being around average people any more. Are there any gluten-free communes or cults I can join? It kills me to despise my own family. They're hypocrites. I don't belong with them. I need to be surrounded by nothing but people akin to me. Understanding. Loving. Supportive. Gluten and poison free.

Where can I go?

I'm going insane.

Edited by psawyer
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I'm unable to put on blinders and a fake smile like most of you, acting like nothing's wrong and that it'll all be ok. I'm stuck in a prison without bars, looking at how smug people are because they've found a medicine that works.. so then they can continue to work and support themselves without needing to leach onto someone for dependency. I hope those "medicines" erode you all from the inside out. I hope you really do get what you pay for in the end.

I don't put on a "fake smile and blinders". A gluten-free diet isn't the end of the world for me. It has its moments, but once I got the hang of it, I don't mind it because I feel so much better. Coming on here and insulting people won't get you much support if that was your intention.

At the risk of making you angry...well...angry-er and directed at me....I think you might need some psychological help. At the least some counseling and some help with your anger.

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I had to laugh a little (not at your expense obviously) while reading this, because I'm having that kind of day too. It just pisses me off that everyone (ok not EVERYONE, but you know what I mean) else can just wander into in a restaurant, or order greasy chinese takeout and all they have to worry about is the short term calorie bomb. Now, I'm not saying I wish I could go back to my horrible eating habits, because I wouldn't even if I could! But I am very healthy and workout - I think I should be able to have a glass of wine a night without getting lightheaded - I should be able to eat salad and breadsticks at Olive Garden - I should be able to eat sushi again without feeling awful! While I started with just gluten, I am now soy intolerant, and I think I'm picking up either dairy or corn (or both, which I can't even think about right now - been mostly grain free for a month - it sucks). All day today, I've had no control over my own emotions. Things in my life are awesome right now, but having to worry about my next meal is making me really mad lately. Like you, I watch everyone stuffing their faces and I hope it comes back to haunt them. Which of course, makes me feel guilty for thinking that way. I really don't have anything to offer you, except a sympathetic ear and some support. I hope you start to feel better soon - all that anger isn't healthy.

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I am so sorry you are in such pain. I think a lot of us wish there was some med we could take and live like gluten eating folks. A lot of us were on many toxic meds before diagnosis and got little relief from them and they did more harm than good. It is great that we can heal so much from just avoiding gluten, and whatever else we may have to avoid. In my case soy also.

It can be very restrictive though if we let it and at times it is hard not to let it.

Some of us still live restrictive lives. I am one of them so I understand to some extent your anger and frustration. I did find counseling to be somewhat helpful but it can be hard to find a counselor or psychiatrist that we click with and who is knowledgeable about how celiac can negatively impact brain function and mood.

Even a small amount of gluten can send some of us into a world filled with anger or sadness. Could you be getting small amounts of gluten or cross contamination? We often become more sensitive to smaller amounts once the antibodies have died down which could explain why you were doing great then have gone down hill. I also get what I call the 'speed' effect from being glutened followed by a crash where I am either angry or more often now severely depressed.

Tell us what you typically eat and the things you miss the most and perhaps we can help you find alternatives or or where CC might be sneaking in.

There are a lot of very helpful and kind people here. Welcome to the board and I hope we can be of some help.

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There are some people that suffer through withdrawal from gluten. For certain individuals gluten has an opiate affect. That is a hard habit to quit. It is no wonder you are miserable. There is also a natural feeling of mourning the loss of gluten and the easy lifestyle of not thinking about what you are eating.

I do think you should start taking some sublingual vitamin B12. If you are suffering from a defiency of B12 anxiety is a symptom.

It is time to start focusing on the positives. There are plenty of yummy naturally gluten free foods to enjoy. Gluten free replacements foods are coming along too. It is now possible to find gluten free specialty products in larger grocercy stores. :)

That being said... There are just people out there that are just annoying! :D;)

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Holy smokes!

I was severely sleep-deprived for 2 years (while very ill from un- diagnosed celiac and still consuming gluten ) and was about as whipped up and manic as can be, but I didn't curse entire cultures and wish that people who take medicines erode from the inside out, express a desire to poison the crops of all the countries of the world and wish bodily harm to others around me!

Really???

That's a bit much, don't you think? :blink:

I'd like to say you can find supportive people right here--there is no better community of gluten free people to bond with than on here, but you are not starting out on the best foot. :rolleyes:

We understand the frustration that comes with dealing with autoimmune illnesses and dietary restrictions.

But I do not "put on a fake smile and blinders" and pretend anything.

I just live my life, happy to have regained my brain function and stopped the illness that tried to kill me.

I eat a healthy diet and I enjoy treats and I do not feel deprived. I have a long way to recovery but I do not spend my time angry and cursing out others around me. I do not feel such seething hatred for anyone who can eat gluten without harm. (In fact, I feel sorrow for them !!---because the majority of people I know should be gluten-free and they are not--- and they have various illnesses and depression themselves.)

I am afraid you have a lot more going on than just anger at having to be gluten free, hon. I think your brain is impacted from gluten and sleep deprivation. Been there/done that!

You sound extremely depressed and I doubt any of us can help you with that. We CAN offer dietary suggestions and we can listen and encourage you stay on track, but you may need to see a professional about the serious lack of sleep --because I KNOW it wreaks havoc on the body and the mind. It happened to me too. I feel your pain and anguish.

I wish you well.

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Gosh, you sound like me before I got onto decent supplements. Insomniac, spitting fire, and irritated as hell. Plus I was having bipolar episodes. You're bipolar right? I recognize the symptoms in your post from my own struggles.

I did not improve at all mentally my first year gluten-free. My GI system settled down but not my mind. After a year a naturopathic shrink recommended some SERIOUS supplements to heal my mind. Plus I had to taper off all the poisons... er medicines... that my HMO shrink had me on. You're a step ahead of me in that regard. After about three months on the supplements, the bipolar illness was mostly gone. In six months my useless HMO shrink declared me in remission and sent me on my way. I am no longer irritable, I sleep solidly for 7-8 hours, and my family says my personality has completely changed for the better. I'm certainly happier.

I take a total supplement called EMPowerplus for mental health, available at http://www.truehope.com It's expensive but for me it was an absolute godsend. Nothing else works quite like it. TrueHope has a call center and can help you get started. (Expect your body to freak out for the first couple months and you may need probiotics or Candida treatments.) Along with the EMPowerplus, I take a fish oil concentrate that has at least 750mg of EPA/DHA combined. If I slack on the fish oil or supplements, I don't sleep and the old irritability creeps back in.

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Every single time someone, who darn well knows of my diet restrictions, asks me if I want to eat this or that... bla bla bla... I want to do great harm to them. I want to bring them down to my level to make them finally understand.

May I ask why? Is it their ignorance, dismissive behavior, the fact that they will never truly understand, their seemingly fake sympathy, ...?

You didn't go through Crohn's testing for those other people, nor did you eliminate gluten for anyone other than yourself. You have sought health for YOURSELF and that is admirable. These people that ignite fire in you are not doing it to get a reaction from you, they are simply unaware. There are a lot of those people in our society, but getting angry at them won't change anything. Those people cannot provide the support you would like

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well, some things that might help.

Let's see, sub-lingual B-12, dissolves under the tongue and is absorbed in the mouth. So you get some even if you aren't absorbing nutrients well in your GI tract.

Sunshine for Vitamin D.

Some people get B-12 injections and other nutrients. Basically, vitamin shots.

Gluten can affect the brain, so it is not surprising to me if you have insomnia. There are several threads about insomnia on the board.

Also, I don't think anger is surprising. I used to get angry easily, which is not my usual way. But for a while before I went gluten-free I was prone to a quick temper and unreasonable anger at things that just shouldn't really matter. I think anger can be a symptom of nutrient deficiency. Or maybe it's just the gluten attacking our brains. Either way, gluten-free can help. Although it might take a while for it to have a noticeable affect, 6 to 18 months for nuero symptoms is what people usually say.

A simple whole foods diet is what works best IMHO. Not eating out very often, and if eating out make sure to check ahead of time for the gluten-free options. We tend to get other food intolerances also, and they can have pretty severe symptoms too. An elimination diet is something to consider if GI symptoms don't improve after a few months.

We have several members with Crohn's so it's not a problem to post here. My younger brother had Crohn's for that matter. I post on a Crohn's site also, although I don't have it.

And here is my standard welcome to the site message . Some links that might help;

Don't worry about being perfect at the gluten-free diet right away, but spend some time reading the threads and FAQ info here. Check out the threads on breakfast ideas or dinner ideas or even snack ideas (if that kind of thing appeals to you). :) There are even threads on safe candy for Halloween and other holidays. And a recipe area for lots of great things to eat.

FAQ Celiac com

http://www.celiac.co...celiac-disease/

What's For Breakfast Today?

http://www.celiac.co...180#entry726053

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

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I pray for the day when the rust fungus devastates the entire world's supply of wheat. If I could, I would travel to parts of the globe to collect my own samples to disperse amongst the evil crops of this backwards nation. Hopefully mother nature will be able to handle it without my help, and wipe out this insidious grain to leave room for the healthy ones.

I'm thinking that was a rant and you aren't usually this extreme. I can relate, especially to the above part.

I hope things get better for you. Take it one day at a time.

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I think most of us have felt frustrated..and angry at times? It may be that you are lacking some vitamins/minerals, OR maybe you have an additional food intolerance? I found that dairy made me have insomnia and mood swings. I'd have an overwhelming anger the day after I consumed dairy.

With Crohn's you may not be absorbing everything you need from your diet, along with maybe having some malabsorption from Celiac type damage? Supplements are vital..especially Probiotics. They help to keep yeast and bad bacteria from taking over your intestines, and help digest your food. Vitamin D3, fish oil, multi-vitamin, B complex.

I suggest keeping a food log. Write down what you eat and any symptoms you feel. It can be insomnia, anger, sadness, anxiety,..whatever really. Just mak a note. Many food intolerances are delayed reaction type things, so you need to have a way to go back and connect the dots to figure it out.

I hope we were just seeing you totally frustrated..and you're not still feeling so angry? You may find it helpful to have some counseling? Having Crohn's and Celiac too..and maybe another intolerance is a lot to handle! :blink: The people around you just aren't going to "get it" as far as understanding what it's like to be you..because they have no frame of reference. Please don't hate them for that? They probably have their own shit stuff to deal with that you may not understand fully?

Hoping today is a better day for you....

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WOW, I'm overwhelmed with the amount of responses. First, I'd like to say a big THANK YOU to every single person that replied. Really, thank you. Thank you, thank you!

Yes, yesterday was one of my 'bad days' and I'm sorry for directly or indirectly offending any one person or group.

But, hey, it took a bad day to push me into finally joining one of these forums... I haven't discussed most of my problems and raw feelings with anyone before. I suppose if I didn't express myself to the fullest and held back, I can't get to the real root of the problems.

I've often thought maybe talking with a professional therapist would help, but then I realize that I'm not the one that should have to change - it's most everyone else (the gluten eating people). If the general public could somehow become aware that their diet is hazardous to their health, then perhaps worldwide change could come about and WE would then become the majority, instead of the minority. That's really what I think boils my blood, is being stuck in a minority group while the majority poisons themselves and others. It's rational to be angry at that, right? So, I'm not really the one that needs help - it's everyone else. ;) But, yeah, I know I should approach it in a positive way. Am I a bit bipolar? I don't know, but the longer I starve myself from my fav. foods, the more divided I become.

Most people don't learn to change until they face great adversity or disability, so I guess that's why I've wished bodily harm to others... to give them a 'frame of reference' so they can understand and help swing the vote to stamp out wheat-based foods/additives. It's still very bad of me, and on my good days (like today) I feel bad knowing that I think such negative thoughts.

I guess I should mention all the vitamins and stuff I take...

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.

*I want to take this time to mention that the B12 I take, in conjunction with Iron, is in the form of methylcobalamin. The most common form, cyanocobalamin, has a cyanide molecule for its base (poison!). The next time I need to buy more, I'll try to find a sublingual form that's safe.

It's been a while since I've had fish oil, which I've taken tons of in the past... I switched to Barlean's flaxseed oil because it seems to help lubricate my GI tract better while giving me the Omegas at the same time... and it's also more cost effective than fish oil caps. I admit I've been slacking off on the oil, and I should really try harder to use it more often.

I've taken about a half-dozen different probiotic mixtures, which most didn't seem to change anything. Other kinds would give me very painful gas and bloating. Either way, I'd taken enough to make sure I had a wide variety of good bacteria... and sometimes I've felt like I had too much good bacteria - which can be a bad thing. I guess maybe I should stick with one that seems to be very active and only take it every other day or every 3 days... I'll just have to experiment more with dosage on it.

I also take plenty of digestive enzymes before/during/after meals. I've found one that seems to do OK and covers all the basic types of foods I might ingest, and is cost effective as well. For a while I was on Garden of Life's OmegaZyme Ultra but it didn't feel like it was working too well... way too expensive, too.

My general diet... let's see... I also avoid soy, except for soy lecithin, since it's in way too many things I don't want to cut out and it's supposedly not too bad. I don't know if I have a soy intolerance or not, but I just read more bad things than good things about soy.... ok, so now and then I flavor some rice with soy sauce, and I know it is not gluten-free.... no such thing as a gluten-free soy sauce that tastes good. I might have to try making my own sometime.

No idea if I have corn intolerance, but I try to avoid corn, although I do still eat things made with cornstarch. Corn is bad, physically and chemically, it was never meant for animal nor human consumption... It's only good use is for making ethanol. Watch a documentary called 'King Corn', it's interesting.

I avoid processed sugars and salts about 90% of the time. I'm a huge fan of pure RAW honey, 'sugar in the raw', and sea salt. Raw honey is great for digestion, and the end result smells super sweet as well (no joke!).

Almost every day I do my juicing. I try to alternate between vegetables and fruits/berries each day. It's not all organic... I wish it was, but hey I can't always make it perfect. And I do my best to wash it all with water + lemon juice to remove any chemical residue.

I am dairy-free; I no longer drink animal milk or eat cheese - never was a big fan of dairy... slimey stuff.. eww. I drink rice/almond milk and use vegan "cheese" when baking.

I don't eat beef - beef is one of the worst meats to digest, as it wants to sit in the gut and rot... a constipating nightmare. Pork, on the other hand, is fairly easy to digest for me, which proves to myself that the lie about pork's indigestibility is just that - a lie. But, it's still red meat, and I have to keep it limited. I can also handle chicken, turkey, and fish. Despite what meats I eat, I'm trying hard to limit the portion to be 20% or less of my total meal... 5-10% would be more ideal. I'll never give it up.

I'm also doing real good at eliminating preservatives. I really wish more things used vitamin E as a preservative instead.

I don't drink or cook with tap water; I use bottled spring/distilled/RO water, whichever's on hand.

Ok, Now I'm trying to think of ways in which gluten makes it's way into me... I've been good at keeping cross contamination down, but sometimes I try to just ignore it and 'bargain' with myself... saying.. "hey, a little molecule here or there floating around won't hurt me, just as long as I don't eat a plate full of gluten". I fear that it might not be enough?

When I go to my grandparent's, my grandmother is always still making her biscuits... so I know the entire kitchen/dining room is contaminated.... but it's the thought of having to abstain from her awesome cooking that sends me into a fury, not the gluten. I'm certain of it. Still yet, though... what if...?

I almost never eat out at restaurants now, I get to be the one left at home while the whole family goes out to celebrate, etc... And there's this one Chinese food place in town that makes the best I've ever tasted, and I've been to plenty of places across the country... they got it hooked up from a supplier to get some real awesome quality ingredients that no other place has PLUS their recipes.. oh man... they are masters. And I miss it.

From time to time, I've cheated and drank a couple beers. I know that gluten-free beer does exist, but it's sold in a town a half-hour away and costs between 8-10 dollars for a six pack... and I have no idea if it's good or tastes like pee. Too big of a gamble and a major inconvenience to even get it. Wine and rum, on the other hand... mmmm :)

But, NO! Alcohol is bad, unless used very very moderately. What's the point in that? Hmm... well there is another social intoxicant with many healing properties that is outlawed... Cannabis. Too bad I don't live in a state that allows it to be used medicinally, I'm sure some edibles would help with my inflammation and my mood all in one, with no adverse side effects. Plus, it helps keep the cancer away.

If you're still wondering, yes, I would very much like to infect wheat crops with the rust fungus. It'd be a huge sacrifice, but it's one that is greatly needed, I believe. Destroy that which is evil so that which is good may flourish, right? No hate in that, just pure logic. The greater good.

Well, now I'm the one that's rambling, so I guess I'll sign off and go make some veggie juice and try to enjoy the rest of a somewhat good day I'm having... just gotta keep the bad thoughts locked away.

Thanks again for the support and advice.

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Oh, I also forgot to mention that I did go to see a specialist about 15 or 20 years ago to help find out why I couldn't sleep. All I remember from it was that they put electrodes all over my head and had me to lay down in an extremely uncomfortable bed and told me to go to sleep and they'd see what was wrong... insane, right? My problem was that I couldn't go to sleep and they wanted me to sleep on demand to see what the machine would tell them about my brainwaves.

Well, I was kid and totally at the mercy of my parents/doctors to help me out, as I couldn't do anything on my own. No more help was given to me, and I've spent most of my life deprived of sleep.

In fact, I calculated that I've experienced an extra 10+ years of consciousness (wakefulness) due to the hours I've missed every night of my life. I've barely managed to get just enough rest to keep me alive... and during the small amounts of time that I do sleep, I'm dreaming almost the entire time... so that's like being awake in my sleep too.

I can't afford to pay for sleep clinics and multitudes of tests, and whatever.. Don't think it'd really matter now, though. I didn't get the help when I needed it so many years ago... My brain's hardwired into the person I've become now, it's too late to change it.. Who knows what kind of nice person I could have become...

I really don't care about much anymore except just trying to rest and recover from a lifetime of sleep-deprived agony. I just want to sleep. I don't want to work (well, yes I do, but only if I can sleep when I need sleep). I want to sleep. I need to sleep.

I don't need demanding schedules of work, and worrying about bills, etc.. I need to sleep first. THEN, maybe, I can go and be a productive person. But I can't sleep. Can't hold a job for very long until it almost kills me. Can't pay for the help I need. I'm homeless but not houseless. I'm a failure, and I've accepted it.

Just trying to make the best of a conundrum I'm in.... til the day I die. I've often thought of doing something so I can be sent to prison, and violently earn myself some quality solitary confinement... Get away from the stress of knowing I have to get a job to support myself, but to do that I need, sleep, to get a job.. I have to sleep... maybe without all the stress and being in solitary I could just concentrate on nothing else but relaxation. Total relaxation. Never having to worry about where my next meal comes from, or anything. Just time to rest and not be bothered by anyone.

I can't just throw what little money I have left from my last job into sleep therapies... if one doesn't work, I'll have nothing left to pay for the next alternative, so on and so forth...

I worked my butt off through school and college to now be homeless, sleepless, and insane. I dunno. More bad thoughts creeping in. Money money money... work work work... bills bills bills... I gotta do something, how do I function? Catch 22's and rocks and hard places galore.

School was fairly easy to get through, and all the time I missed wasn't a big factor because in school the work can be made up and handed in late for a decent grade. In the real world, you miss work, you miss out on earning money. That money's gone. Miss a bill, or whatever payment, and things are taken from you. Tragic.

I don't want everything just handed to me, I just need to un-screw myself so I can function as an independent individual. Without poisonous meds. I dunno.

I'm just supplying more info about myself here; no need to help with my sleep issues.

Let's just concentrate on the diet... at least for now. One thing at a time.

Sorry again for such a long post, but I want to be as detailed as I can possibly be.

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We don't need a lot of details to help you with dietary advice. But here is what I see:

YOU said:

"From time to time, I've cheated and drank a couple beers. I know that gluten-free beer does exist, but it's sold in a town a half-hour away and costs between 8-10 dollars for a six pack... and I have no idea if it's good or tastes like pee. Too big of a gamble and a major inconvenience to even get it."

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

Try Bard's or Planet Earth. It does not taste like pee.

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

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.

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.

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

It worked for many of us.

:)

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WOW, I'm overwhelmed with the amount of responses. First, I'd like to say a big THANK YOU to every single person that replied. Really, thank you. Thank you, thank you!

Yes, yesterday was one of my 'bad days' and I'm sorry for directly or indirectly offending any one person or group.

But, hey, it took a bad day to push me into finally joining one of these forums... I haven't discussed most of my problems and raw feelings with anyone before. I suppose if I didn't express myself to the fullest and held back, I can't get to the real root of the problems.

I've often thought maybe talking with a professional therapist would help, but then I realize that I'm not the one that should have to change - it's most everyone else (the gluten eating people). If the general public could somehow become aware that their diet is hazardous to their health, then perhaps worldwide change could come about and WE would then become the majority, instead of the minority. That's really what I think boils my blood, is being stuck in a minority group while the majority poisons themselves and others. It's rational to be angry at that, right? So, I'm not really the one that needs help - it's everyone else. ;) But, yeah, I know I should approach it in a positive way. Am I a bit bipolar? I don't know, but the longer I starve myself from my fav. foods, the more divided I become.

Most people don't learn to change until they face great adversity or disability, so I guess that's why I've wished bodily harm to others... to give them a 'frame of reference' so they can understand and help swing the vote to stamp out wheat-based foods/additives. It's still very bad of me, and on my good days (like today) I feel bad knowing that I think such negative thoughts.

I guess I should mention all the vitamins and stuff I take...

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.

*I want to take this time to mention that the B12 I take, in conjunction with Iron, is in the form of methylcobalamin. The most common form, cyanocobalamin, has a cyanide molecule for its base (poison!). The next time I need to buy more, I'll try to find a sublingual form that's safe.

It's been a while since I've had fish oil, which I've taken tons of in the past... I switched to Barlean's flaxseed oil because it seems to help lubricate my GI tract better while giving me the Omegas at the same time... and it's also more cost effective than fish oil caps. I admit I've been slacking off on the oil, and I should really try harder to use it more often.

I've taken about a half-dozen different probiotic mixtures, which most didn't seem to change anything. Other kinds would give me very painful gas and bloating. Either way, I'd taken enough to make sure I had a wide variety of good bacteria... and sometimes I've felt like I had too much good bacteria - which can be a bad thing. I guess maybe I should stick with one that seems to be very active and only take it every other day or every 3 days... I'll just have to experiment more with dosage on it.

I also take plenty of digestive enzymes before/during/after meals. I've found one that seems to do OK and covers all the basic types of foods I might ingest, and is cost effective as well. For a while I was on Garden of Life's OmegaZyme Ultra but it didn't feel like it was working too well... way too expensive, too.

My general diet... let's see... I also avoid soy, except for soy lecithin, since it's in way too many things I don't want to cut out and it's supposedly not too bad. I don't know if I have a soy intolerance or not, but I just read more bad things than good things about soy.... ok, so now and then I flavor some rice with soy sauce, and I know it is not gluten-free.... no such thing as a gluten-free soy sauce that tastes good. I might have to try making my own sometime.

No idea if I have corn intolerance, but I try to avoid corn, although I do still eat things made with cornstarch. Corn is bad, physically and chemically, it was never meant for animal nor human consumption... It's only good use is for making ethanol. Watch a documentary called 'King Corn', it's interesting.

I avoid processed sugars and salts about 90% of the time. I'm a huge fan of pure RAW honey, 'sugar in the raw', and sea salt. Raw honey is great for digestion, and the end result smells super sweet as well (no joke!).

Almost every day I do my juicing. I try to alternate between vegetables and fruits/berries each day. It's not all organic... I wish it was, but hey I can't always make it perfect. And I do my best to wash it all with water + lemon juice to remove any chemical residue.

I am dairy-free; I no longer drink animal milk or eat cheese - never was a big fan of dairy... slimey stuff.. eww. I drink rice/almond milk and use vegan "cheese" when baking.

I don't eat beef - beef is one of the worst meats to digest, as it wants to sit in the gut and rot... a constipating nightmare. Pork, on the other hand, is fairly easy to digest for me, which proves to myself that the lie about pork's indigestibility is just that - a lie. But, it's still red meat, and I have to keep it limited. I can also handle chicken, turkey, and fish. Despite what meats I eat, I'm trying hard to limit the portion to be 20% or less of my total meal... 5-10% would be more ideal. I'll never give it up.

I'm also doing real good at eliminating preservatives. I really wish more things used vitamin E as a preservative instead.

I don't drink or cook with tap water; I use bottled spring/distilled/RO water, whichever's on hand.

Ok, Now I'm trying to think of ways in which gluten makes it's way into me... I've been good at keeping cross contamination down, but sometimes I try to just ignore it and 'bargain' with myself... saying.. "hey, a little molecule here or there floating around won't hurt me, just as long as I don't eat a plate full of gluten". I fear that it might not be enough?

When I go to my grandparent's, my grandmother is always still making her biscuits... so I know the entire kitchen/dining room is contaminated.... but it's the thought of having to abstain from her awesome cooking that sends me into a fury, not the gluten. I'm certain of it. Still yet, though... what if...?

I almost never eat out at restaurants now, I get to be the one left at home while the whole family goes out to celebrate, etc... And there's this one Chinese food place in town that makes the best I've ever tasted, and I've been to plenty of places across the country... they got it hooked up from a supplier to get some real awesome quality ingredients that no other place has PLUS their recipes.. oh man... they are masters. And I miss it.

From time to time, I've cheated and drank a couple beers. I know that gluten-free beer does exist, but it's sold in a town a half-hour away and costs between 8-10 dollars for a six pack... and I have no idea if it's good or tastes like pee. Too big of a gamble and a major inconvenience to even get it. Wine and rum, on the other hand... mmmm :)

But, NO! Alcohol is bad, unless used very very moderately. What's the point in that? Hmm... well there is another social intoxicant with many healing properties that is outlawed... Cannabis. Too bad I don't live in a state that allows it to be used medicinally, I'm sure some edibles would help with my inflammation and my mood all in one, with no adverse side effects. Plus, it helps keep the cancer away.

If you're still wondering, yes, I would very much like to infect wheat crops with the rust fungus. It'd be a huge sacrifice, but it's one that is greatly needed, I believe. Destroy that which is evil so that which is good may flourish, right? No hate in that, just pure logic. The greater good.

Well, now I'm the one that's rambling, so I guess I'll sign off and go make some veggie juice and try to enjoy the rest of a somewhat good day I'm having... just gotta keep the bad thoughts locked away.

Thanks again for the support and advice.

Well..it looks like you've got the nutrition stuff worked out pretty well? my sister has Crohn's and won't take the time to work out what she needs, so doesn't supplement at all. I guess she goes into overwhelm?

If soy bothers you, it's possible that soy lethicin does as well? It bothers me..big time. It *could* feed into your insomnia? Ditto with the occasional beer, soy sauce, Granny's biscuits. 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.

The Probiotics..maybe if you get the kind that has dairy it's the one that gives you bloating? Culturelle makes a good dairy free version. You can't overdo the good bacteria. Whatever isn't needed by the body just passes through. The good stuff aids digestion/absorption and keeps the yeast and bad bacteria down.

Fish oil feeds your brain. If you aren't sleeping much your brain needs feeding. Have you tried organic coconut oil? It's really good for the brain too. It helps regulate blood sugar as well.

If you talk to a professional because of all you're dealing with..they won't fix it for you. They won't make the world change, but they will give you coping skills. When we can't change our circumstances, or change the people around us, the only thing we CAN do is learn how to cope and be at peace with it.

I understand the anger at how wheat..(and soy too) are added to all sorts of things where it doesn't need to be. Part of it is that it affects the brain and makes people want more of it. People wanting it more makes better profits for companies, so it comes down to economics. Most people don't even realize they're being manipulated like that. It made me mad too when I started reading labels more, and learned about it.

MSG ticks me off too. It's a chemical that makes your brain think things taste good when they don't really. How about if they leave it out..and make the food honestly taste good instead? :angry:

I'm happy to hear you say you dream when you sleep. It's the REM (rapid eye movement) deep dream sleep that's restorative. Maybe you could try things like soaking in a warm epsom salt bath before bedtime(relaxing and pulls toxins from your body), avoid bright light so you're able to produce melatonin better? Little things that help..but you really need to be sure you're eliminating even trace gluten because that could be feeding your insomnia?

They wanted to do a sleep study on me too..and I told them I'd have to actually be able to sleep in order for them to study? LOL 'Tis a puzzle I guess we'll never know the answer to? :unsure:

I hear you on the restaurants too. My two attempts at trying to eat out were failures. I don't want to try anymore. Don't get me started on the foods I miss...

I guess that's one key to coping for me? I try real hard not to think about what I can't have. I need to focus on the things I can have. I have certain foods that are treats for me and I thoroughly enjoy every bite of them. :D

Hoping things get better for you.

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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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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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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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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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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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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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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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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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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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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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    • I eat them with no issues and know several other Celiacs that eat them with no issue.
    • I am sorry that you are sick! i think you need to really adhere to a gluten free diet that consists of ONLY whole foods (no processed gluten-free foods) and do not go out to eat, until you start to see improvement.  Each tiny gluten exposure can set you back.  It sounds like you really became even more ill after the gluten challenge.   I was just anemic when diagnosed.  I waited seven weeks for my endoscopy due to work issues, so i took the time to consume lots of gluten.  Like a loaf of sourdough per day not to mention all the cakes, cookies that I loved.  (Okay, I just ate a few out of each package......)  by the end of seven weeks, I knew I had celiac disease.  I had a bloated stomach visible under my left rib cage, pinching when I bent over, indigestion, etc.  Not to mention some weird Fibro pain my my shoulders, tingly legs, etc.   Most resolved, but it took about two years. If you  ask for thyroid panel, be sure it includes testing for thyroid antibodies.   
    • My daughter, who is almost 21 and has celiac disease, was diagnosed with Epilepsy a year ago. Hindsight being 20/20, we realized she had been having seizure since she was a teenager but the random passing out and feelings of being 'out of it' were attributed to dehydration or poor nutrition and sleep habits during numerous trips to the emergency room. In our reading about Epilepsy, I have found some mention of celiac and gluten issue connections and even where a strict adherence to a gluten-free diet provided a lot of improve the with frequency and severity of seizures.  I would be interested to know if anyone else shares this experience.
    • I have also reacted to various Planters products, believing them to be safe because gluten is not listed in the allergens but have had almost identical reactions to yours.  It did not occur to me that I might be getting zapped from them until just recently when I ate some of their Salt and Vinegar almonds and became really ill and then recognized that I had reacted to them before. I have notice in the past few months that the 'Hermans' brand nuts, which have never mentioned wheat in their allergens now carries the 'processed in a plant that processes wheat' disclaimer.  It makes me wonder if all nuts are processed in the same manner and if all nuts and nut products should be considered unsafe? I know that I will not trust the Planters brand any longer regardless of whether wheat is listed or not.
    • I've heard some people say that they're gluten free, and some say they're not.. I had a container of planter's cashews that I ate a few days ago and I haven't been feeling that great since then. I thought I was fine, but yesterday I woke up with a headache and was feeling really gassy all day. Then since last night, every once in a while I'll have some stomach cramps. They last for a few minutes and then go away.. that has happened 3 or 4 times since last night. It seems weird that I wouldn't have a reaction right away though.. or at least within a few hours of eating them. I ate some on thursday and on friday, and I didn't really start to feel sick until saturday. It's been a while since I last got glutened though, so maybe my reaction has changed? Or maybe I'm being paranoid and I just ate too many cashews haha. But that's the only thing I've eaten in the past like 2 weeks that was different. Has anyone else had a problem with planter's nuts?
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