Unbearable Anxiety/Panic and now Insomnia

[This sucks.]

Okay well don't want to make this into a long story or post but I do have a lot of questions and information to share with you lovely people. 

If you want the main reason I seek help you can skip the 3 big paragraphs but they are very informative of my lifelong struggle with metal illness.

       Soo.. I ended up smoking Cannabis for many years of my like (14 years ) and I am now going to be 30.  I found that marijuana really felt good and helped me feel a lot more calm and helped me sleep through the night everynight. I have always been a go go go person with too much energy.  And as child I would always get very irritated and had some anger issues (temper tantrums), those went away perminately when smoking weed and just growing up and out of them i think. I would also drink a lot of beer on top of that.   I have been on antidepressants (pristiq , Citalopram not at the same time ) for about 7 years since I noticed started noticing anxiety tremors and unbearable anxiety and social anxiety,  and an anti-Psychotic for sleep for about  5 years ( Seroquel) . I hated being on these things but they were my only way of coping with the outside world.  

      About 7 months ago I was still smoking marijuana and drinking almost daily while on Pristiq and Seroquel ( I know really bad )  but I barley any side effects besides brain fog in the morning till about 1 or 2 everyday from the seroquel which I found bearable and livable until I noticed the anxiety returninga and my crazy go go go hyperactivity. So back to 7 months ago researched magnesium glycinate which I noticed worked very very well making me feel almost normal again when I took very high doeses (600 -1000mg a day ) I used this amazing feeling from the magnesium glycinate to take advantage of stopping and getting of my meds that I was on (pristiq 50mg and Seroquel 50mgs) and I weened off them perfectly and slept fine with the help of marijuana. Then one day I had a magnesium overdose and was throwing up and having diarrhea all day.  Magnesium wasn't working for me anymore as I assume I was deficient when it was so beneficial but wasn't deficient anymore hence the reason it stopped working .

       So I then went to a naturopath to help me check my levels of everything.  First he tried some vitamins that usually help anxiety disorders before doing all my blood test and they seems to work for a bit then made my anxiety worse ( I was still smoking cannabis everyday and then started to notice it wasn't helping anymore but making me very hyperactive , increasing my anxiety and heart rate).   When I decided to quit marijuana because it no longer was helping me but making things worse THIS IS WHERE SHIT GOT REAL, the withdrawal effect from stopping marijuana after 14 years of daily use made me have such crazy anxiety and I couldn't eat was loosing a pound a day and I need to eat a lot everyday to even maintain weight and not get scary thin.  I am a male and want to put  on muscle and not be skinny. ( I am a ultra rapid matabolizer as said from my genetic testing i just got done) which makes sense why i would loose weight so fast and why i need to eat so much to maintain weight.  My stomach was hurting so bad and I have never had stomach pains like this just always had D after eating pizza and fast food which left me thinking i'm just a little lactose or can't handle fatty foods very well.  My anxitey and stomach pains brought on my hypochondria so I needed test done.  I did the barium swallow and my xrays just showed some indigestion.  Then I told my  doctor I wanted a test for celiac as my bowl movements have never looked this way  (floating ).  

So my blood test results are 

Total iga 1.71

igG 24.8 * positive 

Iga AB 11.4

So I have celiac .  It made sense as to why I always had D after eating fast food or pizza. 

       The main reason I type this is that my anxiety has been way worse now that I have been gluten free for about 4 or 5 weeks.  I have new insomnia which I never had before only sleeping 2 out of every 4 days (the days I don't sleep I don't get one second of sleep) I really don't want to go back on meds but it seems like that is the only way to get my life and sanity back.  I'm hoping my life long anxiety and hyperactivity was because of gluten and after 6 months to a year i will be rid of it or be the person I feel  I am inside my mind.  I have been seeing my doctor ever two weeks and she seems to be getting fed up with me and ask why are you here (me- i'm here seeking help and opinions before I jump back on these life threatening meds). I have been seeing my naturopath every week even twice a week and have tried all the herbs and vitamins there are for me. We did all my blood test to rule out thyroid, testosterone, cortisol issues.  We only found that i had high magnesium level not to my surprise, and low vitamin d (60 nmol/L) . Thankfully I am absorbing all my nutrients very efficiently still.  So the past 3 weeks I have tried passion flower, valarien , pharma gaba, kava kava and this one 3 in one called neuropas balance (obviously on different days) and it seems like I am getting worse, sleeping eludes me and my anxiety has made me lose touch with all my friends in the past 3 months.  Lavender oil pills 80 mg 2 a day has been one the main thing besides some benzos I was prescribed when going to the doctors 3 weeks ago as a mess in complete panic for no reason.   Taking benozos as needed  has helped me actually live, but i don't want to have to take them because the withdrawl can be worse then the actual reason to start them .  Tried vitamin d for a week or so but something has been increasing my anxiety and insomnia that I stopped all of my suppliments ( vitamin E was in my  vitamin d drops , doesnt vitamin E have gluten in it ?)  I am also trying to sleep at night so i was taking life brand gravol , which i now saw it has Sodium starch and maltodextrin ( very suspect ingredients for gluten).  So maybe I have been getting glutened every night just trying to sleep. I saw a therapist who prelims for a psychiatrist and said I have mild depression as well when I said I have lost interest in things I use to enjoy (music, activity's, friends, games.)  I am at the last of my will and I would hope someone here has some insight or maybe have the same type of symptoms from gluten.

Here are some questions ....

Will being gluten free for 6 months to a year help me see some relief from this hell I am in? ( anxiety , insomnia and depression ) I have read some good stories on how people get relief from metal illness after 3 or 6 months to a year or two.  

The longer I ate gluten means the longer my mental recovery will be ?????

 I really don't want to be on any meds but at the moment I am so debilitated that I need some sort of help somehow right now or else I am just wasting my life and living in mental pain.

Would going on meds  while being gluten free help me with the time it takes for my gluten related mental illness to go away ( I hope to god it is because of gluten because if it isn't I will be doomed and will have to take horrible meds my whole life and have side that later in life will be horrible .  ( Seroquel and benozos lead to early Alzheimers and dementia as an example of horrible side effects, not to mention blood clots and other horrible things ) 

What should I do? as I am out of ideas and drive on how to better myself and after trying so much and getting nowhere or getting worse in the process. 

Thank you very much to whomever read my whole story 

and thank you very much to who replies with positivity as I am in great need of support right now.

and thanks to this great site , it has helped me very much !

 

Edit - ( okay anxiety and a little depression is one thing but my main worry now is NOT SLEEPING.  Eveynight that I can fall asleep I don't feel like I'm sleeping at all, no rem sleep at all and only for max 4 hours a night and I wake up totally energized and unrested.  Those hours I am supposeably sleeping I hear and feel my dog move on my bed and I'm never in a deep sleep.  So I even question mysef if I am actually asleep for those hour. Is this gluten withdrawal real and even at 5 weeks gluten free?  I need to get a real nights sleep so I can feel rested. It's been 3 weeks without any "real" sleep. ) 

[cristiana]

Hi TS

Welcome to the forum.

I am not perhaps the best qualified to answer all your questions, but I just wanted to say that as a person who suffered from debilitating anxiety very badly prior to my diagnosis, and has had the odd setback with it since going gluten free, there is nonetheless lots of room for hope.  Please remember that, just because you feel this way today and have done for a long time does not mean you are going to always feel this way. 

I have read your post and unless I have missed something, I cannot see you mentioning that you have had your vitamin B12 levels tested. I cannot tell you how important it is to have this level checked - B12 has a huge role in mental health. If you find your levels are low or even low normal you need to speak to a doctor about getting this put right. Sometimes supplements are enough but some folk need injections, at least initially.  

On a similar tack - how is your blood iron (ferretin).? If you are a celiac your iron levels might be low and again there is quite a bit of research to show that this could cause depression. This needs to be tested as you shouldn't supplement unless you need to - too much iron causes problems of its own.

Before I close, I would like to recommend a couple of books that might help you.  The first is 'At last a life' by Paul David. David had anxiety very badly for many years so has been there, bought the T-shirt.  And recovered.  As for myself, I didn't even know I had anxiety  when it struck - I felt so wretched and ill, and I was just googling in my symptoms, and then  I found his website. It was if he was writing about me.  It has been a lifeline to me and I still refer to it if I have the occasional setback.

Open Original Shared Link

Secondly - a book on depression. 

Open Original Shared Link

The author discusses why following the six steps combat depression.  The six steps are introducing physical exercise; eating more omega-3 fatty acids; natural sunlight exposure; restorative sleep; social connectedness; meaningful, engaging activity.  

I have bought it for friends and two (one of whom is a GP) thought it was absolutely brilliant and very helpful.

I hope others will chime in and help but I can tell you a lot of us have experienced anxiety, you are not alone.

 

 

[dharwood]

Welcome,

 I have been on this forum since being diagnosed via blood test last May. I have ran across several posts that would describe what I was going through almost to a tee. Yours is probably the closest. From the Marijuana, to the Pizza, to the fast food; to the meds and anxiety and sleeplessness. One thing that I suffered from that you didn’t mention was reflux/heartburn. Doctors put me on Prilosec 2 a day, sometimes they had me on 3 a day. I did that for 10 years at least. I am coming up on a year and I can tell you there is light at the end of the tunnel. I have said in other posts that I spent 21 years in the Army with multiple deployments and hardships, and nothing was as hard as these last 10 months have been on not only me, but my family too.

I would love to be able to tell you what worked for me, but I am still trying to figure it out myself. After going gluten-free I started having lots of joint and muscle pain. Like your Doctor, mine listened to my heart and lungs and said, “You have Fibromyalgia” She has no opinion on Celiac and it’s very frustrating. Having TriCare doesn’t help as it’s not the best insurance so I can’t get the Naturopath help I would like. I finally got a large litany of tests from the VA, and all my vitamins and minerals were good. Vit D was a little low, but I live in WA. A couple things were high; my Rheumatoid Arthritis numbers and something else that escapes me right now. Recently I started to cut things out of my diet; corn, potatoes, tomatoes, all dairy and pop. I have always loved my Makers Mark bourbon and I have tried to eliminate that too. Just got back from 6 days in Arizona and fell off the wagon a bit, and as I write this I am feeling the aches and pains again. I am lucky in that my wife has always liked to eat healthy and she is really behind me, helping me to eat better.

But I can assure you, there were times just months ago that I thought I may have to get admitted to the psychic ward. I had absolutely no control over my emotions. I had horrible thoughts of hurting myself or just ending it. Felt hopeless, helpless and worthless. I was missing work. I would get little to no sleep at night. Couple hours at best. I used to smoke pot every night about an hour before bed and it would help me sleep, but I was unable to do that due to the fact that it would make me paranoid and make things worse.  I had quit smoking cigarettes about 4 years ago and decided to start again. Crazy stuff. Just in the last couple months I have been able to sleep through the night. Didn’t even get up to go pee; which leading up to diagnosis happened normally 2 times a night. I am now back to having a couple puffs of pot before bed, and sometimes having a glass of red wine (hate it) after dinner. It’s a huge life style change for me, as I would always be camping and drinking, hunting and drinking, fishing and drinking… you get the picture. But if its going to make me feel better, so be it.

I hope you find what works for you and remember that it does not happen overnight. You can also drive yourself mad Googling stuff. Try not to get caught up in that. Good luck, you are not alone at all.

DH

[This sucks.]

Thank you Cristiana very much for you quick and very positive reply.  I will definately buy the book on anxiety first as I feel my minor depression is caused by my overwhelming anxiety and obsession over it.   sorry I didn't know what levels to post as I could have filled a page with all the tests I have gotten done recently.  My vitamin b12 is 518 pmol/L so it's good.  My ferritin is 133 ug/L so that's good too.   

How long have you been gluten free?  And did your anxiety ease a little after? or did it worsen?  And does it come back full force when being glutened?  Thank you again for being very nice and hopeful.  I really appreciate every and any reply. Thanks again!!  

 

[cristiana]

3 hours ago, This sucks. said:

Thank you Cristiana very much for you quick and very positive reply.  I will definately buy the book on anxiety first as I feel my minor depression is caused by my overwhelming anxiety and obsession over it.   sorry I didn't know what levels to post as I could have filled a page with all the tests I have gotten done recently.  My vitamin b12 is 518 pmol/L so it's good.  My ferritin is 133 ug/L so that's good too.   

How long have you been gluten free?  And did your anxiety ease a little after? or did it worsen?  And does it come back full force when being glutened?  Thank you again for being very nice and hopeful.  I really appreciate every and any reply. Thanks again!!  

 

You're welcome!

It is interesting what leads to anxiety.  There are lots of different causes. In my case I think it was a combo of low B12 and iron levels - mine were awful - and stress.  For other people it can be post-natal depression, overtiredness, bereavement - the list is long. And of course there does seem to be a real link with gluten as a cause although I'm not sure exactly the mechanics of that connection.  But it is interesting my own anxiety came about four months before my gastro symptoms started  - I think gluten was also part of the perfect storm that started mine off.

Just trawling through this website you will see 'anxiety' comes up again and again. And again and again...  Be reassured that a lot of folk really do feel better after a while.  

I'm so glad you're going to buy Paul David's book - even a cursory read of the website will be helpful, I'm sure. I found the tone so reassuring. He showed me that as sufferers we should try not to avoid anxious thoughts, as that is so exhausting. Rather, we need to acknowledge they are there but just think, 'They're only thoughts' and then just carry on with our day, no matter how awful we feel. Cutting ourselves off, overthinking things, these things give our anxiety too much importance, adding fuel to the fire.  

For me I saw my recovery as a sort of line chart, if that's what they're called. Like one of those jagged lines you see on heart hospital monitor! 

So after about a two to three weeks the line on the chart started to progress in a general upward direction  (upward being recovery) as the anxiety decreased, but that upward line was full of little ups and downs along the way.    When I was first recovering I began to notice that I'd have maybe a couple of hours of anxiety free time in a day.  Then maybe I'd have half a day here and there. And before I knew it it started to be a few good days, with a few bad hours or days thrown in.  I'd then go for a few months of really feeling fine, then a couple of bad days would come along.

Paul David calls these set backs. I have learned to see them just as that.  They can feel really grim -  and I mean grim - but I just try to carry on, not giving these thoughts any importance.  That diffuses things and I'm back on track again.

I've learned that adrenaline on a tired mind can make everything look so odd or feel odd, and stress is a real trigger for me.  I find that is when I have a setback normally.  So if I am beginning to see the old adrenaline playing tricks on me again, racing mind, disturbing thoughts, etc, I look at my diary and try to cut some of the the stress and spend time doing something I like or being with friends.  Rumination i.e. focussing on the anxiety is something that really doesn't help me so I try to be engaged with life outside my four walls when I'm having an off day - even if I don't always feel like it.

I'm not sure if gluten is a real factor for me these days as a cause as I try to be very careful not to eat it - but you never know, it sneaks in everywhere!

Oh - and sorry, I saw your first question last! I have been gluten free since the spring of 2013.  That said, I suffered anxiety very badly from about June the previous year.  It would come and go as I have illustrated above but it has been a  recovery over all.   I had my last setback about two months ago. Stress was definitely a big factor at the time.  Lasted about two days. But I am thankful to say I am much, much better now.

 

 

 

 

[This sucks.]

15 hours ago, dharwood said:

Welcome,

 

 I have been on this forum since being diagnosed via blood test last May. I have ran across several posts that would describe what I was going through almost to a tee. Yours is probably the closest. From the Marijuana, to the Pizza, to the fast food; to the meds and anxiety and sleeplessness. One thing that I suffered from that you didn’t mention was reflux/heartburn. Doctors put me on Prilosec 2 a day, sometimes they had me on 3 a day. I did that for 10 years at least. I am coming up on a year and I can tell you there is light at the end of the tunnel. I have said in other posts that I spent 21 years in the Army with multiple deployments and hardships, and nothing was as hard as these last 10 months have been on not only me, but my family too.

 

I would love to be able to tell you what worked for me, but I am still trying to figure it out myself. After going gluten-free I started having lots of joint and muscle pain. Like your Doctor, mine listened to my heart and lungs and said, “You have Fibromyalgia” She has no opinion on Celiac and it’s very frustrating. Having TriCare doesn’t help as it’s not the best insurance so I can’t get the Naturopath help I would like. I finally got a large litany of tests from the VA, and all my vitamins and minerals were good. Vit D was a little low, but I live in WA. A couple things were high; my Rheumatoid Arthritis numbers and something else that escapes me right now. Recently I started to cut things out of my diet; corn, potatoes, tomatoes, all dairy and pop. I have always loved my Makers Mark bourbon and I have tried to eliminate that too. Just got back from 6 days in Arizona and fell off the wagon a bit, and as I write this I am feeling the aches and pains again. I am lucky in that my wife has always liked to eat healthy and she is really behind me, helping me to eat better.

 

But I can assure you, there were times just months ago that I thought I may have to get admitted to the psychic ward. I had absolutely no control over my emotions. I had horrible thoughts of hurting myself or just ending it. Felt hopeless, helpless and worthless. I was missing work. I would get little to no sleep at night. Couple hours at best. I used to smoke pot every night about an hour before bed and it would help me sleep, but I was unable to do that due to the fact that it would make me paranoid and make things worse.  I had quit smoking cigarettes about 4 years ago and decided to start again. Crazy stuff. Just in the last couple months I have been able to sleep through the night. Didn’t even get up to go pee; which leading up to diagnosis happened normally 2 times a night. I am now back to having a couple puffs of pot before bed, and sometimes having a glass of red wine (hate it) after dinner. It’s a huge life style change for me, as I would always be camping and drinking, hunting and drinking, fishing and drinking… you get the picture. But if its going to make me feel better, so be it.

 

I hope you find what works for you and remember that it does not happen overnight. You can also drive yourself mad Googling stuff. Try not to get caught up in that. Good luck, you are not alone at all.

 

DH

 

Thanks you for your reply! And for the positive notes.

       I feel bad for all of us that we are in these situations.  I know this is not going to get better overnight , but I was very ill with lots of anxiety before going gluten free. I thought this would be my life savior but from going gluten free the last 5 weeks I am now having so so much trouble sleeping where when did not before ( I've never had insomnia like this) and I have been experience more anxiety while gluten free.  Weed always helped me sleep , but even after quiting smoking it and was still eating gluten all I would need would be one gravol and I would sleep the night away .  Since going gluten free, takeing 2 or  3 gravols  or taking 2 clonazepams will do nothing and I will lie awake ALL night which exuberates my anxiety the next day to the point where I just want to freak out and start smashing things because there is no relief from this hell.  Yes I'm happy that you have a good supporting wife and that must help so much.  Me, i'm almost 30 with no girlfriend because of anxiety and social anxiety still living at home and I can't and dont work because of my mental illnesses and I CANNOT take this lifestyle anymore.  My parents are the only  reason I am able to endure any of this as they are soooo supportive and amazing people.  My mother has even gone gluten free because she feels she could have celiac as well with having digestive problems her whole life as well, which helps tremendously so I don't feel so alone in this struggle.  

   I don't know if I have heartburn , but I have indigestion and I am always belching like crazy (I don't know if that is a sign of acid re-flux).

    But the main thing that is driving me insane is the INSOMNIA , my mother has too said her sleep quality has decline since going gluten free as well.

I thought going gluten free would be good for a celiacs body right ? why would it cause such side effects. ?

    Why do peoples quality of sleep decline when going gluten free?  I was never a person who could ever nap during the day anyways and was always using marijuana to help sleep.  So it makes sense that I am a candidate for gluten free related insomnia I guess. 

    You said the last couple months you have been sleeping fine . Is that because of the wine and having a puff every night or because you think you insomnia is getting better in time with the gluten free diet ?

    Did smoking cannabis make you more anxious or just paranoid ? I have never been paranoid it just increases heart rate and anxiety like crazy ?  How long of a break did you take before you felt like you could have a puff again without getting paranoid or anxiety ?? Because I hate the dreams I get when I do sleep as they are all anxious dreams and I wake up with a pounding heart. Cannabis was the only thing that use to shut my mind off and suppress my dreams which I would like to do right now.

Anyways Thank you very much for the reply and sorry for ranting as I feel hopeless.

  I hope you can finally figure it out yourself as all of us don't deserve to have mental illness or insomnia on top or struggling with the Celiac diet and lifestyle.

Thanks again for the reply!

[knitty kitty]

Please read this article about the kinds of drugs y'all are taking!  

Open Original Shared Link

Dementia doesn't happen just to old people.  It can happen to people with digestive disorders because the neurotransmitters that make your brain work correctly are made in the digestive tract.  

I understand what you're going through.  I suffered from anxiety and insomnia like you're describing.  I was prescribed some of the same drugs and only got worse.  Turned out I was having an anticholinergic reaction to the drugs.  It was a horrible scary experience.

 Here's an article on anticholinergic toxicity.

Open Original Shared Link

Marijuana has anticholinergic properties, so you may be getting more anticholinergic activity than you bargained for.  

I really hope this helps!  

 

[This sucks.]

2 hours ago, knitty kitty said:

Please read this article about the kinds of drugs y'all are taking!  

Open Original Shared Link

Dementia doesn't happen just to old people.  It can happen to people with digestive disorders because the neurotransmitters that make your brain work correctly are made in the digestive tract.  

I understand what you're going through.  I suffered from anxiety and insomnia like you're describing.  I was prescribed some of the same drugs and only got worse.  Turned out I was having an anticholinergic reaction to the drugs.  It was a horrible scary experience.

 Here's an article on anticholinergic toxicity.

Open Original Shared Link

Marijuana has anticholinergic properties, so you may be getting more anticholinergic activity than you bargained for.  

I really hope this helps!  

 

      Thanks for the warning and some insight knitty kitty,  But besides marijuana, I have been or had been taking the lowest dose or near the lowest does of any med I have been on. I have also just had my psychotropic genetic testing done which has giving me insight on which drugs are safest for me, which ones I should use with caution and which ones I should use with increased caution and with more frequent monitoring.  The test was out of Toronto (Genesight Canada).  I know too much of anything is bad for you, So I make sure not to over do it with any med or pill I take (besides overdosing on Mag Glycinate as I was always assured it was almost impossible and many others were up to the same does as me).  I have also done many test for my neurotransmitter levels which the results turned out to be Dopamine -minor deficit, Acytlcholine - moderate deficit not a surplus or excess,  Serotonin- moderate deficit, and the main one for me Gaba - Major deficit. 

May I ask which similar meds you were on and what were the dosages? (if you dont mind).

I am sorry to hear you had such a bad experience . Hope everything is going well for you now. 

Thanks for the response.

[knitty kitty]

I glad you found the articles interesting. 

I was prescribed the usual antidepressants and sleep aids, from clonipine, zolpidem, alprazolam, citalopram to benzodiazepines and tricyclic antidepressants, as well as medications for my worsening diarrhea.  I ran the gamut. Nothing helped. I felt I was getting worse and the doctors just kept writing prescriptions for stronger drugs. 

My digestive problems got so bad I developed nutritional deficiencies including pellagra.  It turned out that I was allergic to Sulfa drugs.  Many of the drugs I was prescribed contained sulfur compounds. But at the root of it all was undiagnosed Celiac disease.

It was Celiac disease that made my intestines not able to produce those brain neurotransmitters. The antidepressants and antihistamines exacerbated that.  There are many metabolic pathways that don't work correctly in people with celiac disease.  The sulphur pathway is just one. Some of the pathways fail because absorption of vitamins and minerals is diminished or out of balance.  

You said you had taken a lot of magnesium.  I wonder if you haven't gotten your system out of balance.  Taking zinc may help balance the magnesium excess.  Did you know that a poor sense of taste or smell often indicates a zinc deficiency?  

Anyway, I got myself off all the medications, eventually found a more capable doctor who helped put all the puzzle pieces together, and I'm doing so much better now gluten free and Sulfite free (nothing fermented or pickled).  Yes, it has taken over a year to feel better, but it's been worthwhile if I can help others regain their own health, too.  

 

 

 

[squirmingitch]

This sucks.,

You may be going through gluten withdrawal. It does exist and many (most) of us went through it for varying lengths of time & to varying degrees of severity. Just use the Google search box for this site & you will come up with hundreds of threads on the subject. Personally, I went through it for about 2 months. Lots of people only go through it for one or two weeks.

Are you sure all those supplements you're taking are gluten free? Supplements like what you're taking are not regulated you know.

Please read the Newbie 101 pinned to the top of the Coping forum and your mom might want to read it too so you guys can protect yourselves from cross contamination.

Personally, and you can disagree with my opinion, I would not be taking allllllllllllllllllllllllllllllll the stuff you listed. That's a LONG list! I believe one needs to be cautious & very careful taking a whole bunch of supplements (even if they are "natural"). One supplement reacts with another supplement & yadda, yadda, yadda...... IMO simple is best and getting the vitamins & minerals from foods is the best way to go. Otherwise you can get so tangled up in your shoelaces that you can't figure out what is causing this, what is making you feel that, and so on & so forth.

[cyclinglady]

I just want to add -- exercise.  It can help you not only physically, but mentally too.  It has helped me with insomnia.  

[dharwood]

10 hours ago, This sucks. said:

Thanks you for your reply! And for the positive notes.

       I feel bad for all of us that we are in these situations.  I know this is not going to get better overnight , but I was very ill with lots of anxiety before going gluten free. I thought this would be my life savior but from going gluten free the last 5 weeks I am now having so so much trouble sleeping where when did not before ( I've never had insomnia like this) and I have been experience more anxiety while gluten free.  Weed always helped me sleep , but even after quiting smoking it and was still eating gluten all I would need would be one gravol and I would sleep the night away .  Since going gluten free, takeing 2 or  3 gravols  or taking 2 clonazepams will do nothing and I will lie awake ALL night which exuberates my anxiety the next day to the point where I just want to freak out and start smashing things because there is no relief from this hell.  Yes I'm happy that you have a good supporting wife and that must help so much.  Me, i'm almost 30 with no girlfriend because of anxiety and social anxiety still living at home and I can't and dont work because of my mental illnesses and I CANNOT take this lifestyle anymore.  My parents are the only  reason I am able to endure any of this as they are soooo supportive and amazing people.  My mother has even gone gluten free because she feels she could have celiac as well with having digestive problems her whole life as well, which helps tremendously so I don't feel so alone in this struggle.  

   I don't know if I have heartburn , but I have indigestion and I am always belching like crazy (I don't know if that is a sign of acid re-flux).

    But the main thing that is driving me insane is the INSOMNIA , my mother has too said her sleep quality has decline since going gluten free as well.

I thought going gluten free would be good for a celiacs body right ? why would it cause such side effects. ?

    Why do peoples quality of sleep decline when going gluten free?  I was never a person who could ever nap during the day anyways and was always using marijuana to help sleep.  So it makes sense that I am a candidate for gluten free related insomnia I guess. 

    You said the last couple months you have been sleeping fine . Is that because of the wine and having a puff every night or because you think you insomnia is getting better in time with the gluten free diet ?

    Did smoking cannabis make you more anxious or just paranoid ? I have never been paranoid it just increases heart rate and anxiety like crazy ?  How long of a break did you take before you felt like you could have a puff again without getting paranoid or anxiety ?? Because I hate the dreams I get when I do sleep as they are all anxious dreams and I wake up with a pounding heart. Cannabis was the only thing that use to shut my mind off and suppress my dreams which I would like to do right now.

Anyways Thank you very much for the reply and sorry for ranting as I feel hopeless.

  I hope you can finally figure it out yourself as all of us don't deserve to have mental illness or insomnia on top or struggling with the Celiac diet and lifestyle.

Thanks again for the reply!

T.S.

I went through the same thought process (still am I guess) I wondered how I could feel worse, sleep worse, over the top anxiety, panic attacks, depression among other things, AFTER I went gluten-free. I can't explain it, but it happens. People talk about a withdrawal and maybe that's what it is. From listening to stories of people who withdraw off drugs or what-not, I swear it was the same thing. I had been taking blood pressure medicine for years and found out it may contain gluten, so I spoke with my Dr. and I quit taking it and monitored my BP on my own. Been fine since, not even borderline high. I am only taking a small dose of medication for PTSD, and I plan on talking to my VA Counselor about stopping that soon too. 

I went about 7 months with no cannabis and just recently have been able to introduce it back in. I get the high CBD low THC strain and it works well. And yes, I believe it helps me sleep. That's all I use it for. During the 7 or so months I wasn't using it, I had to quit because my mind would race and I couldn't stop. Not so much paranoid, just panicky and always nerved up. I thought I was loosing my mind because I had no control over my emotions. Never had that before in my life. I would sob uncontrollably, think I was dying and it was because of poor decisions I had made in life and literally lay in bed all night with my eyes wide open. I had Lorazepam 0.5mg, and that would help, but I did not want to get "hooked" on that so I would keep it on my nightstand with water as kind of a security blanket. There were times that I would find myself in the backyard at 2 AM for no reason. Needless to say, my wife was very concerned and had our son come stay with me at those times. Like I said in my other post, it was thee hardest thing I have ever had to deal with, hands down. 

It sounds like you have a great support in your parents. That is huge. I searched for support groups, just so I could talk to someone who knew what Celiac was. Never found one in our area, but they are out there. This site has been my go-to since day one. In the 10 months since diagnosis, I have meet 3 people with celiac. And in talking to them, none of them had the same symptoms as me. They were all different. Crazy disease.

Hang in there, and do not give up. Do not let it beat you. You got this!

DH

[knitty kitty]

I forgot to ask earlier...have you tried tryptophan to help with insomnia? It helped me sleep. It's part of the B complex of vitamins.  With impaired absorption, some Celiacs find taking supplemental vitamins the only way to regain their health.  In some cases, it is impossible to eat enough to make up the vitamin deficits.  For example, some have to receive vitamin B12 shots, or take vitamin D supplements.  

I agree you should be careful with herbal supplements as they might interact or have undesired side effects.  However, passion flower has been proven to be as effective as prescribed MAOIs.  And chamomile has shown to be helpful with cold sores.  

Cycling Lady's advice for exercise is great, too, even if all you can muster is some simple yoga stretches.  She amazes me running marathons!  You go, girl! 

Keep learning about celiac disease and tapering what you learn to you.  Everybody has a different conglomeration of symptoms and reacts differently to things, but we're all here to help and support each other. 

[GFinDC]

Hi TS,

Anxiety, depression, insomnia and anger are fairly frequent issues for people.  Did you know that celiac can directly affect the brain?  There is a condition called gluten ataxia associated with celiac disease that can cause difficulty walking and other symptoms.  It can cause UBOs (unidentified bright objects) that show up on an MRI scan.

You are definitely not alone in having mental symptoms.  Time is a great help to overcoming those kind of symptoms.  Time and a clean diet of mostly whole foods can do a great deal to heal our bodies.  It may not feel like you are healing day by day, but as your body shifts from self destructing to healing and recovery things should start to improve.  The immune system  is very powerful and it takes time for it to stop attacking.  Building replacement tissue in the gut takes energy and vitamins.  The less stress we put on our bodies the more energy there is to heal.   I don't know if you are a caffeine addict but it might be worth slowing down on coffee etc for awhile.  Also check your vitamins to see of they have selenium in them.  Selenium is a trace mineral we need for good health.  You can get selenium naturally from Brazil nuts.

There is an herb called Rhodiola Rosea that may help some symptoms.  I get the Vitacost brand, but there are others that sell it too.  It could be something to try.

Open Original Shared Link

[cristiana]

On 2/20/2017 at 6:13 PM, This sucks. said:

Edit - ( okay anxiety and a little depression is one thing but my main worry now is NOT SLEEPING.  Eveynight that I can fall asleep I don't feel like I'm sleeping at all, no rem sleep at all and only for max 4 hours a night and I wake up totally energized and unrested.  Those hours I am supposeably sleeping I hear and feel my dog move on my bed and I'm never in a deep sleep.  So I even question mysef if I am actually asleep for those hour. Is this gluten withdrawal real and even at 5 weeks gluten free?  I need to get a real nights sleep so I can feel rested. It's been 3 weeks without any "real" sleep. ) 

Hi again TS

I've been thinking a lot about your posts.

I remember hoping that when I went gluten free  I would soon be super healthy, full of energy, a barely recogniseable, rejuvenated version of my former self!  But going gluten free was not the silver bullet I'd hoped for.  I think I'd set myself up for a bit of disappointment.  I do know, however, that many of my symptoms have gone and some are still improving, it has just taken some time to undo the damage of eating gluten for nearly 45 years when I shouldn't have gone anywhere near it! 

So reading your posts I do sympathise. It is SO disappointing when we want these things to resolve quickly and they don't.  

I remember reading once that if we break a leg, we would not expect to be able to run a marathon the following day.  It could take months to heal. It would be annoying, but we would accept it.  You've gone through such a lot but just like a broken leg, it might help just to accept that it is probably going to take a bit more time as your body readjusts.

In the meantime, do try to remember with regards to sleep that the human body is incredibly resilient.  There are people out there who for a multitude of reasons haven't slept well for years.   My youngest child didn't sleep much for about two years  when he was a baby so I hardly got any sleep for two years either.   I remember my sister, who also had a child like that, sharing with me that you'd almost be prepared turn to crime if it meant being able to get a good night's sleep!  

I am now very good sleeping (probably still recovering) but occasionally I do wake up and my mind starts dwelling on stuff.  At times like that I do find that rather than lying in bed it's good to get up and write my journal, or read a book.  Lying in bed thinking about stuff never helps me.   You might have tried that, but if not, I'd recommend giving it a go.  (From what I've read, best to avoid TV, computer screens, phone screens, etc, because of blue light)

Open Original Shared Link

Dr Llardi's book that I mentioned before explains the role that proper daylight has on our general health, I found it very helpful. 

 

 

[knitty kitty]

Open Original Shared Link

Here's an article that explains how the B vitamins, including niacin, contribute to getting better sleep.  

 

[This sucks.]

On 21/02/2017 at 8:02 PM, cyclinglady said:

I just want to add -- exercise.  It can help you not only physically, but mentally too.  It has helped me with insomnia.  

 Yes I exercise daily.  I lift weights and walk my dogs everyday.  No amount of exercise has helped lately.   I did not have ANY insomnia ever in my life until about 3 or 4 weeks ago( about 2 weeks into my gluten free diet.  I have to eat so much everyday and was eating 6 or 7 meals a day filled with gluten and then beers almost daily so I could defiantly be having the biggest gluten withdrawal anyone has ever seen.  But my anxiety is the cause of my insomnia and it it not letting up. I had really bad anxiety that I was going to go back on meds before going gluten free, and now haveing been gluten free it exonerated it to the point I can't sleep, relax and find myself pacing all the time.  I have way more physical symptom of my anxiety not too( energy feeling tingles in my body, claims hands, full body tremors, constant worrying and much more.  I've even built u this fear to go to bed knowing I will struggle sleeping which in turn makes my anxiety go crazy then I don't sleep.  

[This sucks.]

On 22/02/2017 at 6:35 PM, knitty kitty said:

Open Original Shared Link

Here's an article that explains how the B vitamins, including niacin, contribute to getting better sleep.  

 

Yes I was also turned to this very interesting and study/article by my ND on niancinamide for anxiety being very similar to benzodiapines at higher doses. I recommend anyone here with anxiety give it a read.  Google " Jonathan Prousky niancinamide for anxiety " there with be a pdf.   It am hopeful this could help me.  But again not getting my hopes up as nothing has worked. 

[This sucks.]

On 22/02/2017 at 8:49 AM, GFinDC said:

Hi TS,

Anxiety, depression, insomnia and anger are fairly frequent issues for people.  Did you know that celiac can directly affect the brain?  There is a condition called gluten ataxia associated with celiac disease that can cause difficulty walking and other symptoms.  It can cause UBOs (unidentified bright objects) that show up on an MRI scan.

You are definitely not alone in having mental symptoms.  Time is a great help to overcoming those kind of symptoms.  Time and a clean diet of mostly whole foods can do a great deal to heal our bodies.  It may not feel like you are healing day by day, but as your body shifts from self destructing to healing and recovery things should start to improve.  The immune system  is very powerful and it takes time for it to stop attacking.  Building replacement tissue in the gut takes energy and vitamins.  The less stress we put on our bodies the more energy there is to heal.   I don't know if you are a caffeine addict but it might be worth slowing down on coffee etc for awhile.  Also check your vitamins to see of they have selenium in them.  Selenium is a trace mineral we need for good health.  You can get selenium naturally from Brazil nuts.

There is an herb called Rhodiola Rosea that may help some symptoms.  I get the Vitacost brand, but there are others that sell it too.  It could be something to try.

Open Original Shared Link

Thanks I will check out that link.  I use to abuse caffeine for years but I have touched any caffeine for 2 years now or more.  I don't like coffee so I would drink energy drinks or pop but have touched them for years because any caffeine increases my anxiety.  

[This sucks.]

On 21/02/2017 at 7:59 PM, squirmingitch said:

This sucks.,

You may be going through gluten withdrawal. It does exist and many (most) of us went through it for varying lengths of time & to varying degrees of severity. Just use the Google search box for this site & you will come up with hundreds of threads on the subject. Personally, I went through it for about 2 months. Lots of people only go through it for one or two weeks.

Are you sure all those supplements you're taking are gluten free? Supplements like what you're taking are not regulated you know.

Please read the Newbie 101 pinned to the top of the Coping forum and your mom might want to read it too so you guys can protect yourselves from cross contamination.

Personally, and you can disagree with my opinion, I would not be taking allllllllllllllllllllllllllllllll the stuff you listed. That's a LONG list! I believe one needs to be cautious & very careful taking a whole bunch of supplements (even if they are "natural"). One supplement reacts with another supplement & yadda, yadda, yadda...... IMO simple is best and getting the vitamins & minerals from foods is the best way to go. Otherwise you can get so tangled up in your shoelaces that you can't figure out what is causing this, what is making you feel that, and so on & so forth.

Yes all the supplements are gluten free and because everything seems to give me anxiety I do not take those supplements at the same time.   Only take 1 or two in the same day.  I also take lowest doses.   I understand the more things you take at once can make it very hard to determine which one is either helping or hindering.   

And I hope it's gluten withdrawal but at this moment I feel was better off eating gluten and sleeping fine with less anxiety. What is worse for my health? Going back to gluten and sleeping fine with less mental disorders or living with debilitating mental health to the point of hating my life.   But Right now I don't know.  Both will kill me young.  

[CindyH]

The change that knocked out my anxiety and insomnia was giving up caesin, the protein in dairy products. Also it is added to various products, so label reading is essential. Good luck.

[Jmg]

On 2/21/2017 at 2:22 PM, This sucks. said:

But the main thing that is driving me insane is the INSOMNIA , my mother has too said her sleep quality has decline since going gluten free as well.

I thought going gluten free would be good for a celiacs body right ? why would it cause such side effects. ?

I have a theory but it's completely unresearched and probably nonsense. When I was eating gluten I used to get very tired at the end of a big meal. I'd tend to eat quite late in any case and after I'd eaten I was pretty much done for the night. I think the gluten messed with my ability to regulate blood sugar, caused a huge load on my system and that made me sleepy and became part of the sleep cycle. 

After I removed gluten I found lots of weird things happening, or not happening and began to realise just how connected they all were. One of them was the tiredness going after eating. I can and still do often eat like a horse but I don't get the post meal slump any more. I don't feel tired in the slightest. I also often find myself occasionally unable to sleep till 3 or 4. Not so often that it's a major problem, but it does happen.

Anyway, it may help you to read some others who have experienced the same thing, it does for me:

 

 

[This sucks.]

13 hours ago, CindyH said:

The change that knocked out my anxiety and insomnia was giving up caesin, the protein in dairy products. Also it is added to various products, so label reading is essential. Good luck.

Did the insomnia start after going gluten free??  Because I was always able to sleep before going gluten free and drank milk and had casein protein all the time.    It's been 4 days now with 2 hours of sleep each night and I really don't know if I am asleep because it's so light and I wake up at like 4 wide awake,  no tired eyes and ready to go like I slept for 9 hours.   I think most of it is anxiety based but still my mind will not shut off.  

[GFinDC]

The US Army experimented with using casein to keep soldiers alert.  So it may have that affect.  The thing to remember is that your gut is damaged by celiac disease.  So foods that should be digested fully may not be broken down completely.  So with the leaky gut effect, it is possible some casein protein fragments might get through the gut / blood barrier.

I think this is what happened to me once after going gluten-free when I ate some dairy.  I was wide awake for 3 and a half days before being able to get a couple hours sleep.  Then was able to sleep more each following day.  That never happened again but I also gave up eating dairy.

What I  am suggesting is that things that might affect you now while you are healing may not be a problem alter after your gut is in better shape.  So giving up dairy for a few months may help your insomnia now but when healed dairy may not affect it.  We are all different so YMMV as they say.

[cyclinglady]

I was diagnosed when I went for a routine colonoscopy (yep, I was over 50 years old).  During my GI consult he suggested celiac testing because I was anemic.  I have always been anemic due to Thalassemia (genetic anemia) but my hemoglobin levels really took a dive.  I was also going through menopause and my thyroid was swinging wildly from hypo to hyper.  I was a wreak!   Menopause and a hyper thyroid go hand-in-hand with insomnia.  

Like so many others, my GI sent me off with a list of gluten-free restaurants and told to go gluten free.  Luckily, my hubby had been gluten-free for 12 years, so my learning curve for the diet was already short or mastered.  What I did do was to stop all supplements.  I only took my thyroid replacment (based on lab results) and iron (it was either that or transfusions).  I focused on Whole Foods.  Fed the processed gluten-free  to my well-healed hubby. 

A good gluten-free diet and patience is required to heal from celiac disease.  I think you are trying way too many things.  Focus on just the gluten-free diet for even a few weeks.  Add supplements based on lab testing.  Finally, consider going to a group like MA or NA (Marijuana Anonymous).  They might be able to help you with coping skills.  I have a family member who attends meetings and always finds them helpful.   Talk to your doctor.  Medication for the short term might help you deal with your anxiety.  

Hang in there.  It does get better!