46 replies to this topic

[Mtndog]

I am so glad this forum started up as many of us have not had a specific place to talk about the neuro affects of gluten.

When I was 21 I went through a very severe depression and have been on medication ever since. I tried going off several times but always relapsed. I tried again after going gluten-free but wasn't able. I had hoped that after i went gluten-free I would be able to get off celexa, but it wasn't to be. at least emotionally I have WAY more good days than bad now though.

I often wonder (I guess this is one of those chicken or the egg questions)if I had been diagnosed, would I have been spared that first depression and the subsequent relapses. My doctor told me that if you have one clinical episode, you have a 33% chance of having another one if you stop medication, 2 episodes=66% off medication and 3 episodes=99% chance. I've had three so this is a life-long problem for me.

I'm just wondering what other people think about gluten and their brains. It amazes me that one small protein can wreak such havoc on a body!

[marciab]

Mtndog,

Love the name ...

I hate it when doctors relay this kind of statistics to people.

I had some episodes of clinical depression starting when I was 19. All and all, I've had more than 3 in my lifetime, but I am no longer depressed ... And have not been since nuerontin caused it back in 1998. That was when I realized that drugs could cause more harm than good.

Just a couple of weeks ago, I suddenly felt depressed again. It was the weirdest feeling. It came over me like a cloud and left the same way for several days in a row.

I had been up all nite around that same time, so I knew that I had been glutenned. I will bet this is what I was feeling back when I was 19 and had no idea what gluten was.

Anyways, I am telling you my story in hopes that you can relate ... not that you should ditch your doctor, but keep in mind that gluten can cause this ...

I'm still new at all of this, so maybe others can chime in here too ...

Marcia

[darlindeb25]

I am sure that gluten can cause this in some people, yet others can have it happen without being glutened too.

I was diagnosed with anticipatory anxiety, panic attacks, and agorophobia when I was 27 years old, I was put on xanax at that time--4 times a day and I could not get out of bed. Xanax is not the proper drug to put a person on for this, xanax is fine for an immediate help, but not all the time. I couldn't take it in this dose, so the doc told me to take it "as needed", which wasn't the correct answer either. Later on, I was given paxil @ 10mg daily, which over the years was increased to 40 mg daily and somedays, I still couldn't cope. Then I went gluten free, after 4 months, I weaned myself off of paxil, that was 5 years ago this month, at the age of 46. As I look back now, I can see where things started going wrong, yet I just kept telling myself, "This too shall pass." Well, it all came to a head the 2nd week in December just 2 days before I was to leave for vacation. I totally fell apart, I actually thought I had an ulcer, the stomach pains were so bad at times. No rhyme or reason as to when the pains hit--this starting before Thanksgiving. Then a major panic attack in which I decided I could not take the pain anymore. The doctor ran blood tests and I guess you could say, interviewed me and diagnosed depression/anxiety and put me on Celexa. The stomach pains lessened and I could feel the medicine calming me within 10 days--getting better all the time. The doc I work for told me that I will probably need to take this for the rest of my life, his wife has been on it for 4 years now.

So, yes, I do believe your doctor is probably correct Mtndog. I would prefer to take this med and not feel the way I did. I do not want to ever go back to that feeling. I was sick for over 30 years before going gluten-free and I think I may be one of those celiacs who may never absorb things properly without help. Celexa is rewiring my system and I thank God for a med that can do that. There is no shame in admitting you can't handle things on your own, especially when your body is causing the problem.

[JerryK]

Part of the problem with depression and anxiety is this: Fear of depression and anxiety actually causes depression and anxiety. It is a strange paradox where fear of the symptoms actually causes them. Now I don't know if my symptoms were triggered by Gluten Intolerance or not, but what I do know is learning not to fear the emotional symptoms helped huge.
Learn to accept what you are feeling and the feelings will become less important...when the feelings become less important, you may realize you never really had a problem...only thought you did.

That's my 2 cents worth on this subject and yes I've suffered my share of Depression and Anxiety.
I got better, so will you. Don't believe the doctor's statistics. They were created by major pharmaceutical companies who want you to take their drug...for life. J

[darlindeb25]

Jerry, I have always had great respect for someone like you who can talk themselves out of a panic--I used to beable to do it too. This time, I didn't see it coming and I didn't even realize what was happening. Anticipatory anxiety can hit so fast that you do not even have time to panic--the 2 are not the same thing. I am very stressed by my kids and that's my fault, I know. I know that I shouldn't let things get to me. My sweetie tells me I hold too much inside, which I do, yet, I am 51 and it is so hard to teach an old dog new tricks. I've always held everything inside. This time, I was hit with something so stressful to me, that my sweetie said he watched me crumble before his eyes. And, because of my celiacs and my touchy tummy, everything that happens to me effects my tummy and that is something I will have to live with forever. Anyways, after this stress hit me and I thought I had an ulcer going on, that's when the panic hit me, just as you said. I was anticipating tummy problems, so I panicked. Yet, it's more than one problem. I also am smart enough to understand that I do not cause this to happen, I know there is something wrong in my system that needs help correcting and that sometimes talking to myself doesn't work. There is no shame in taking something that helps. My system needs rewiring done and I just can't fix that alone.

My 2 cents worth!

[nikki-uk]

I often wonder (I guess this is one of those chicken or the egg questions)if I had been diagnosed, would I have been spared that first depression and the subsequent relapses. My doctor told me that if you have one clinical episode, you have a 33% chance of having another one if you stop medication, 2 episodes=66% off medication and 3 episodes=99% chance. I've had three so this is a life-long problem for me.

I'm just wondering what other people think about gluten and their brains. It amazes me that one small protein can wreak such havoc on a body!

Good question Bev!..and one I'm not sure the answer to regarding my hubby

I've known my hubby 20 yrs - and for all of that time (bar 2 yrs since his dx of celiac disease) I've always thought..correction..known he somehow wasn't stable emotionally.
I used to think his wild mood swings, such out of place paranoia and ..well..unpredictable rages and mania were an effect of his very disfunctional upbringing/family - and maybe that did play a role as well.
Over the years- when his behaviour would get to the point where I was threatening to leave him off we would trot to the G.P. He'd get a prescription for Prozac...pick up a bit...then stop taking them when he felt better.
This seemed to occur in 6 month/1 yr cycles.
Every New Year I'd think to myself 'I wonder if we can get through the year without some sort of incident'.

My hubby is one of 5 siblings and he was alway's the 'odd one out'.
I think they learned to stay away from him because you really didn't know how he'd react to the most innocuous comment.

When hubby was dx with celiac disease 2 yrs ago (after being very seriously ill for a long time)- and I learnt more and more about the lesser known effects of this insidious disease, depression kept coming up.
At this point I thought (hoped) that maybe his undiagnosed celiac disease was (inpart) the cause of all the wild,crazy emotional rollercoaster rides we had endured over the years.
I noticed a while after he went gluten-free that 'the rages' seemed to have left him.

However, after being gluten-free for 1 yr his emotional wellbeing took a massive downhill slide.
Scarily so. I didn't recognise him.
Paranoia like you wouldn't believe, panic attacks if I left the house, panic attacks if he left the house.Wild,wild accusations.
Staying awake for 4 days at a time,pacing sweating,crying,...just unbelievable

I was gutted,- I thought now that he was gluten-free we'd finally cracked it!
I knew this episode was completely out of the realm of our GP - so I took him to the ER and told them I thought he'd had some sort of breakdown.
A psychiatrist was called and he was put on a scheme here in the UK called 'the home treatment team'

This involved a team of psychiatric nurses coming round every day to see how he was doing and how he was getting on with the drug the doc prescribed.
At first he was just put on an anti- depressant (but as we all know they take 6 weeks to kick in)

Things got worse before they got better - culminating in hubby feeling sooo bad that he tried to commit suicide by taking an overdose of sleeping tabs with alcohol.
At this point he had to be admitted to a psychiatric hosp - he was a danger to himself.
Dark days indeed.

Docs now decided he needed to be on much higher anti-depressants and an anti- psychotic (he was now hearing voices, convinced the world and his wife were talking about him)

When I spoke to the psychiatrist at the hospital he said he sees alot of coeliacs that are so depressed they need to be admitted.
WHY?- clearly there's alot more to it than 'I'm so depressed I can't eat bread/pizza anymore'
..but even more puzzling is that although my hubby is strict with being gluten-free , the damage is done it would seem.

Hubby is doing alot better now - moods have evened out but the drugs do tend to zombie him out.
Yes,..the wild changes in emotions have stopped and the anti-psychotics stopped the mania in it's tracks..but at a cost I think
I would say the drugs haved blunted his personality, dulled him somewhat.

Hubby has an appointment later this month with the psych.
He is terrified of stopping the drugs as he undestandibly doesn't ever want to feel like that again - I think they will want to try and tail them down a bit.
One of the docs has said he may never come off them.

We have to way up that whilst he is emotionally flat on the drugs is that preferable to the wild, crazy thoughts that can control him and all quality of family life???


Sooo (sorry, that was too long! )..I don't think there are any easy answers.
As Darlindeb says he 'needs rewiring' and he just can''t correct it himself.

[Mtndog]

So, yes, I do believe your doctor is probably correct Mtndog. I would prefer to take this med and not feel the way I did. I do not want to ever go back to that feeling. I was sick for over 30 years before going gluten-free and I think I may be one of those celiacs who may never absorb things properly without help. Celexa is rewiring my system and I thank God for a med that can do that. There is no shame in admitting you can't handle things on your own, especially when your body is causing the problem.

This is exactly how I feel!

[Mtndog]

At this point I thought (hoped) that maybe his undiagnosed celiac disease was (inpart) the cause of all the wild,crazy emotional rollercoaster rides we had endured over the years.
I noticed a while after he went gluten-free that 'the rages' seemed to have left him.

However, after being gluten-free for 1 yr his emotional wellbeing took a massive downhill slide.
Scarily so. I didn't recognise him.
Paranoia like you wouldn't believe, panic attacks if I left the house, panic attacks if he left the house.Wild,wild accusations.
Staying awake for 4 days at a time,pacing sweating,crying,...just unbelievable

I was gutted,- I thought now that he was gluten-free we'd finally cracked it!
I knew this episode was completely out of the realm of our GP - so I took him to the ER and told them I thought he'd had some sort of breakdown.
A psychiatrist was called and he was put on a scheme here in the UK called 'the home treatment team'

This involved a team of psychiatric nurses coming round every day to see how he was doing and how he was getting on with the drug the doc prescribed.
At first he was just put on an anti- depressant (but as we all know they take 6 weeks to kick in)

Things got worse before they got better - culminating in hubby feeling sooo bad that he tried to commit suicide by taking an overdose of sleeping tabs with alcohol.
At this point he had to be admitted to a psychiatric hosp - he was a danger to himself.
Dark days indeed.

I remember some of this from your posts but I didn't know it got that bad. I'm so sorry sweetie, that must have been HELL.

Docs now decided he needed to be on much higher anti-depressants and an anti- psychotic (he was now hearing voices, convinced the world and his wife were talking about him)

When I spoke to the psychiatrist at the hospital he said he sees alot of coeliacs that are so depressed they need to be admitted.
WHY?- clearly there's alot more to it than 'I'm so depressed I can't eat bread/pizza anymore'
..but even more puzzling is that although my hubby is strict with being gluten-free , the damage is done it would seem.

Exactly- it's not the same kind of depression. There's two kinds: The "Oh, I'm sad because.....(insert problem)" which is really more of a grief type depression that passes. The other kind, try as you might you cannot "pull yourself up by your bootstraps" and get out of it. It's clearly chemical. It's a neuro problem.

Hubby is doing alot better now - moods have evened out but the drugs do tend to zombie him out.
Yes,..the wild changes in emotions have stopped and the anti-psychotics stopped the mania in it's tracks..but at a cost I think
I would say the drugs haved blunted his personality, dulled him somewhat.

Hubby has an appointment later this month with the psych.
He is terrified of stopping the drugs as he undestandibly doesn't ever want to feel like that again - I think they will want to try and tail them down a bit.
One of the docs has said he may never come off them.

Yeah- the drugs can definitely dull you a bit but maybe they can be tweaked a bit.

We have to way up that whilst he is emotionally flat on the drugs is that preferable to the wild, crazy thoughts that can control him and all quality of family life???
Sooo (sorry, that was too long! )..I don't think there are any easy answers.
As Darlindeb says he 'needs rewiring' and he just can''t correct it himself.

I agree, I think that at some point, for whatever reason, the damage is done and you can't rewire it.

[Jestgar]

I agree, I think that at some point, for whatever reason, the damage is done and you can't rewire it.

Maybe not. After all, if some people can suddenly become depressed, doesn't it stand to reason that some people can become suddenly not depressed? (I don't mean "suddenly" as in, one day wake up different, I mean as we age and the overall chemistry in our bodies changes.)

[happygirl]

This is a great topic, and I appreciate those who have and are sharing their stories.

I do want to add that there is a large number of PhD, MD, MS, MFT, LCSW, etc. out there who have spent their lives doing research at universities and other institutions, that perform solid research on depression, without being funded or influenced by pharmacy companies. I think it is a disservice to those who make this their profession and are wonderfully skilled at it, to undermine their years of research by stating that certain statistics are related solely to $. The statistics vary, but yes, once you have one episode of "major depression," your chances increase of having multiple episodes. (there is technically not "clinical depression" but that is how we refer to it when it has been diagnosed. but in the dsm-iv, it is referred to as 'major depression.") It doesn't mean that any individual themselves will have, but statistically, there is a higher risk for the population for those who have had one, or two, or three, etc. I don't think that these statistics are meant to instill fear in anyone, but to provide education and awareness. If I had any disease (say, cancer), I would want to know if there was a risk of a reoccurence, so that I can be mindful, aware, take reasonable precautions, and know the early warning signs. I know I would be pretty upset if I "got" something again and my doctor never took the time to help me become an educated patient.

There are many, many, many doctors, therapists, and researchers whose clinical and research focus is not medicine related, and favor other approaches.

In my opinion, for some of the population, gluten can be (and is, and that is proof by us on this board!) a problem. It is not the sole factor though. Just like fear and anxiety are only a part of the problem, and for many, are not even a problem (just like for some, gluten is not a problem).

I don't mean to change the topic of this thread, Bev, so I am sorry. But I just had to offer this because as a researcher and someone who was in a graduate program in human development/psychology, I know that there are researchers out there who are not part of the big conspiracy theories of big pharmaceutical companies. I am amazed at what research and for some, medicine, has provided to so many of us - our lives back.

[Mtndog]

laura- You didn't hijack the thread at all. I TOTALLY agree with you. It's NOT all about money. In fact, my doctor prefers to prescribe as little as possible. He told me the statistics after my second episode, not as a way to scare me, but to educate me. I know he was not trying to instill fear in me at all and yes, medication DID give me my life back.

Statistics are just that- statistics. Within a general population there is a 95% chance that something will occur, but individual anomalies are always present and this doesn't take into account other factors that may affect a predisposition towards depression or any other disease.

[Mtndog]

Maybe not. After all, if some people can suddenly become depressed, doesn't it stand to reason that some people can become suddenly not depressed? (I don't mean "suddenly" as in, one day wake up different, I mean as we age and the overall chemistry in our bodies changes.)

This is a good point too as my doc told me that for many women, after pregnancy, things like panic attacks and migraines often go away.

[covsooze]

I have suffered minor depression on and off throughout my life. It got much worse after having DS, and that was the time my coeliac symptoms got really bad. After trying a lot of different drugs (I get bad side effects with most drugs), I found that cipralex (the UK brand of lexapro) really helped. I think my recovery has had four things contributing to it - going gluten free, having prayer counselling, talking to my psych nurse and the cipralex.

I tried to come off the cipralex in the summer last year, but I wasn't ready. However, since then, I've discovered that choclate causes depression for me (it never used to), so I wonder if other food intolerances are an issue for others here? I have now successfully come off the cipralex again. I have started an elimination diet today and it will be interesting to see if anything else causes depression for me.

There have been lots of factors contributing to my depression and that's part of the problem with recovery - trying to solve them all. And yes, I agree that fear of depression/ anxiety is a big factor. I am really scared that as and when we have another child, I'll get depressed again. That's a big thing for me and something I need to work through otherwise DS will never have a sibling!

As for statistics, I can't let myself think about something like that as I'll just worry myself into fulfilling them

Susie x

[marciab]

My distaste for a psychiatrist telling a patient that he/she will more than likely be depressed, etc. is that in many cases this becomes a self fullfilling prophecy.

I've seen far too much of this out of the private psychiatric community. Afterall, this is income for them, so you need to be wary. I've only met two counselors in my life that helped me. Both were realists who had very concrete ideas on how to cope ...

Just wanted to add too, that I actually had a good friend tell me last year that I should be on AD's for life since I have had episodes of depression. She quoted the stats above like they were a fact I should live with.

Keeping it real ... marcia

ps. I wanted to add that hypoglycemcia can also cause anxiety and mood swings.

[JerryK]

Jerry, I have always had great respect for someone like you who can talk themselves out of a panic--

Hi, I meant much more than talking yourself out of anxiety, which typically doesn't work anyway.
The main problem with anxiety is, it is such a horrible feeling, we fear it. Fearing it causes us to actively fight the anxiety. Fighting the anxious feelings is the ONE thing I did that makes it worse.
If you wake up in the morning, wondering if you're going to feel anxious today, you already have your answer. I found a lot of value in allowing myself to BE anxious, to SEEK being anxious, until anxiety no longer became something I feared. When you allow yourself to pass thru the anxiety...to get to the other side of it....something weird happens...it goes away. This is not a quick and easy fix, but it helped me a lot.

I fought the beast with all my might and he grew stronger. When I stopped fighting the beast lost interest...

Having said that, there is certainly not anything wrong in taking medication.