Mtndog
Jan 1 2007, 07:19 PM
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
Jan 1 2007, 08:21 PM
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
Jan 1 2007, 08:46 PM
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
Jan 1 2007, 10:09 PM
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
Jan 2 2007, 02:37 AM
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
Jan 2 2007, 04:01 AM
QUOTE(Mtndog @ Jan 1 2007, 07:19 PM)

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
Jan 2 2007, 06:07 AM
QUOTE(darlindeb25 @ Jan 1 2007, 11:46 PM)

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
Jan 2 2007, 06:19 AM
QUOTE(nikki-uk @ Jan 2 2007, 07:01 AM)

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.
QUOTE(nikki-uk @ Jan 2 2007, 07:01 AM)

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.
QUOTE(nikki-uk @ Jan 2 2007, 07:01 AM)

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.
QUOTE(nikki-uk @ Jan 2 2007, 07:01 AM)

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
Jan 2 2007, 08:31 AM
QUOTE(Mtndog @ Jan 2 2007, 06:19 AM)

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
Jan 2 2007, 08:38 AM
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
Jan 2 2007, 08:51 AM
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
Jan 2 2007, 08:52 AM
QUOTE(Jestgar @ Jan 2 2007, 11:31 AM)

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
Jan 2 2007, 10:12 AM
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
Jan 2 2007, 10:45 AM
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
Jan 2 2007, 01:38 PM
QUOTE(darlindeb25 @ Jan 2 2007, 02:37 AM)

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.
Dukie
Jan 5 2007, 01:04 PM
QUOTE(nikki-uk @ Jan 2 2007, 07:01 AM)

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.
Dukie
Jan 5 2007, 01:31 PM
Hi there,
I read the story about your husband and saw some commonality with my daughter who is now 9 years old. I wanted to tell you that her rages, depression and anxiety were a result of more than one dietary issue. Gluten was indeed the worst offender, but the same behaviors can be induced by other foods. Has your husband tried eliminating or testing for any other food intolerances? The fact that your husband improved on the GFD and then relapsed sounds typical of this problem. I don't think it is recognized medically. I went through alot trying to convince some doctors...they simply do not recognize food as a causative factor. Her psychologist witnessed the dramatic changes in mood and while he referred us to a psychiatrist who prescribed prozac, in the end he became a believer and happily discharged us as she no longer required counseling (we never accepted the prozac route...we eventually proved that we could eliminate her mood swings with food eliminations). It has been 1 and 1/2 years since we started the diet and she has no sign of a mood disorder (unless we make a food mistake, which has not happened in quite some time).
I will tell you that the 2nd biggest offender was dairy...and No, she is not lactose intolerant according to the medical test. However, she was positive for IgA to casein as found through enterolab in a stool test. Casein is a protein in milk that has a very similar molecular structure to gliadin (one of the proteins in gluten). She was also positive for IgG to casein and whey and other specific dairy products she was tested for (cow's milk, etc.). As you may be aware, there are many reports that autistic children significantly improve in mood and behavior on a gluten free/ casein free diet. I don't believe this is a cooincidence.
My daughter's problems were so severe before we started the diet that she had hallucinations, paranoia, anxiety, fits of rage, suicidal thoughts and would smash her head on walls and furniture. Of course there were also numerous physical symptoms, but all the doctors told me that they were all unrelated. She was negative for IgA to Tissue transglutaminase and therefore celiac disease was not considered. I thank God that we were able to figure this all out...otherwise we would be living a very different life. I feel sad about all those out there that are suffering needlessly...please take this into consideration. I am happy to share more info about the other food offenders if you are interested via email or more posts.
Mtndog
Jan 5 2007, 01:51 PM
dukie- My God, what a scary and sad story about your daughter. I am SO glad you figured out what is going on and were able to change it with diet.
My sister (we are not blood-related, both adopted) has a 3 year old that is having horrific rage attacks that keep getting longer and longer and longer. She was tested for celiac as a baby, but it came back negative. Despite my urging, she hasn't tried having her go gluten-free but is now considering it as her rage attacks are getting longer and even her pre-school teacher, whose son has asperberger's, says she has never seen anything like it.
It breaks my heart.
Dukie
Jan 6 2007, 10:20 AM
QUOTE(Mtndog @ Jan 5 2007, 04:51 PM)

dukie- My God, what a scary and sad story about your daughter. I am SO glad you figured out what is going on and were able to change it with diet.
My sister (we are not blood-related, both adopted) has a 3 year old that is having horrific rage attacks that keep getting longer and longer and longer. She was tested for celiac as a baby, but it came back negative. Despite my urging, she hasn't tried having her go gluten-free but is now considering it as her rage attacks are getting longer and even her pre-school teacher, whose son has asperberger's, says she has never seen anything like it.
It breaks my heart.

Dukie
Jan 6 2007, 10:44 AM
Thank you for your kind thoughts. My heart goes out to your sister and her daughter. From all that I have read, I learned that there is a high rate of false negatives in young children. Perhaps she should have her retested now? I belong to an informal group of local gluten free people and one girl's daughter tested negative on 2 occasions before she finally tested positive...I believe her daughter was 2 when the test was positive. The doctor (who is right here in Boston) was persistent in retesting her because she had some classic features of Celiac Disease...one of which he said was long eye lashes (I found that quite interesting!). The last time she was tested I think he submitted blood work either 2 or 3 times a month apart and it went from negative to highly positive in that short of a time span...that just shows that the testing is not as reliable as they claim.
With that being said, my daughter actually tested negative for IgA TTG and IgA EMA. It was Enterolab testing (a positive IgA for anti-gliadin and 2 celiac genes) that helped me figure it out. Even before receiving the test kit, I put my daughter on the gluten-free diet and it only took 6 days to see a huge improvement. When we received the results, we found out that she also was dairy intolerant. Eliminating dairy as well made an even bigger improvement. By the time we got to see the specialist in Boston, over 3 weeks had passed. At the suggestion of eating gluten again for 4-6 weeks so that she could be biopsied, she cried. There was NO WAY she could eat gluten again. The bottom line is that she is healthy and happy again...I will take that over a confirmed diagnosis any day! I sure hope your sister will look into the gluten free diet again.
plantime
Jan 6 2007, 01:28 PM
I was initially diagnosed with anxiety, but a psychiatrist said it sounded more like mild depression. I was taking 10 mgs. of Lexapro daily for it, and the medicine was working. During the summer, the dosage was cut back to 5 mgs. After having days where I didn't care about anything, even my schoolwork and grandson, I went back to the doctor. Now I am on 20 mgs of Lexapro every day. I have had suicidal depression, sad depression, and just recently that deep depressed funk. I don't ever want to go back to that again, so I will keep taking my Lexapro. The only panic attacks I have now are related to how much Lexapro I have left, and when will I have the money to refill.
My doc did tests to determine the cause of my depression. She said it is the hormone swings of perimenopause and SAD. I refuse to take hormone treatments, and I cannot stop winter from happening, so I use medicine. I also think that perhaps the years of undiagnosed/untreated celiac disease may cause permanent damage to the emotional structure of the body, which would allow for chronic depression. I don't know how to rewire my body, so if I need a drug to breach the damage, then so be it.
allison
Jan 8 2007, 01:14 PM
I'm curious if anyone has taken St. John's Wort for depression?
I used to take Lexapro and tolerated it well, stopped, and when i went back couldn't take it.
Marlene
Jan 11 2007, 11:12 AM
I tried taking St. John's Wort but it did not seem to be strong enough for me. I tried Effexor as prescribed by my family doctor. I took 1/2 dose and embarked on the worst night of my life -- horrific side affects (every single one of the side affects where it says CALL YOUR DOCTOR IMMEDIATELY IF YOU EXPERIENCE THE FOLLOWING ......) So I got on the net a few days later and researched herbal remedies. I found something called Anxius. It really helped me with no side affects. I wrote the company and they said it's gluten free although I think they are a bit leary about putting it on the bottle because they might have other gluten containing products at their facility. You might want to check them out -- just google "Anxius".
Marlene
allison
Jan 14 2007, 05:01 PM
Hey
Just wanted to double back and report that I have been trying the St. John's wort and it has been helping. I'm not sure if it will be enough in the long run but right now I'm taking only 600 mg. a day and my doc wants me to go up to much more than that. (To 900 in 3 doses and eventually to 1800 in three doses). This coming from an psychiatrist (MD and head of a major hospital psychiatry dept in NYC).
I'll let you all know how it goes. I'm hoping that some of the symptoms that I am feeling are caused by depression/anxiety b/c nobody seems able to find a medical explanation for them.
ARGH.
Also, I feel like this thread should be in "coping.."
Allison
Mtndog
Jan 14 2007, 05:17 PM
Actually, I'm trying to figure out if there's a relationship between mood swings/irritability and constipation. I get horifically irritable if I don't go.....I started a thread and am finding that others have this experience too. You might want to check it out:
http://www.glutenfreeforum.com/index.php?s...c=29130&hl=I put this is in the behavior section because this is where neuro stuff gets poosted and I look at it as a neuro problem and I know it affects my behavior
Aizlynn
Jan 14 2007, 05:55 PM
Has anyone seen the movie "What the Bleep Do we Know"? It is a part documentary part storyline. Below is a synopsis copied from the website
http://www.whatthebleep.com/synopsis/I was at first skeptical of watching because it deals with quantum physics, but the message delivered is inspiring and makes one think. The main character, a deaf actress which most of you may recoginize is addicted to her addiction (anxiety). I do not put this out here to say this is all in our heads, because I know have battled major depressive disorder since I was young. I put it out there to empower others to search for answers that our doctors can't seem to provide. It even interestingly discusses the peptides and the wiring in our brains, as was mentioned in earlier threads. enjoy.
"The protagonist, Amanda, played by Marlee Matlin, finds herself in a fantastic Alice in Wonderland experience when her daily, uninspired life literally begins to unravel, revealing the uncertain world of the quantum field hidden behind what we consider to be our normal, waking reality. She is literally plunged into a swirl of chaotic occurrences, while the characters she encounters on this odyssey reveal the deeper, hidden knowledge she doesn’t even realize she has asked for. Like every hero, Amanda is thrown into crisis, questioning the fundamental premises of her life – that the reality she has believed in about how men are, how relationships with others should be, and how her emotions are affecting her work isn’t reality at all! As Amanda learns to relax into the experience, she conquers her fears, gains wisdom, and wins the keys to the great secrets of the ages, all in the most entertaining way.
She is then no longer the victim of circumstances, but she is on the way to being the creative force in her life. Her life will never be the same."
Mtndog
Jan 14 2007, 06:10 PM
That's pretty interesting. Actually, I used to have horrible panic attacks and I had my first one driving over a bridge. After that I was bridge-phobic and couldn't drive over any bridge without having a full-blown anxiety attack. I had no choice but to conquer it (I would even have them while on medication) when I moved to San Francisco and had to drive over the huge Bay Bridge (I think it's about 5 miles long) to go to work. Now I don't even think twice when I drive over one.
I definitely think that anxiety and depression can be a vicious cycle. You get afraid you'll get anxious or depressed and it can be a self-fulfilling thing. My therapist and I "joke" that after my first episode I was so traumatized that I had a kind of PTSD about depression. Everytime I was in a bad mood, I would flip out that I was going to plunge back into the depths of my first depression (which was the scariest experience of my life).
jesscarmel
Jan 28 2007, 02:03 PM
deleted
fajitas
Jan 29 2007, 09:21 AM
Hi all,
My 2 cents again, for what it's worth.
First of all, RE: The documetary "What the Bleep". Saw it, then bought it, and have watched it a zillion times since then. It's all about the possibilities. It also mentions peptides, cell receptors, proteins, and a million other things. I wanted to mention something about the documentary's comments on religion in the event that anyone rents the movie and gets a bad taste in their mouth about what they're saying and let you know: This movie doesn't deny the existence of God. It simply puts another spin on things and opens your mind up to the possibilities of life and existence, so don't let that close your mind off to it. It's a wonderful movie.
I suffered from depression and anxiety for at least 20 years. I was suicidal, I lost my mind because I couldn't sleep. I took every medication under the sun. Some worked for a while, some didn't. I got a pretty good grip on things a few years ago, but then, in Dec. of 2006 went gluten-free and MSG free. Don't discount the negative effects of MSG (and any "hydrolyzed protein" - back on my high horse about it). If you look into what it does to the neurotransmitter system, you'll realize that it will cause an excitement and anxiety quickly (for a lot of people - maybe not all). I always had this one problem in regards to anxiety. I bit my nails - until December of this year (I'm 39 years old). Since eliminating wheat, dairy, MSG, and a myriad of other things that I suspect may be problematic, I've lost the urge to bite my nails. For the first time in my life, they look great. It's so nice to free of that uncontrollable compulsion. I suspect a direct correlation between proteins that our body doesn't like and depression/anxiety.
Thanks for listening
TinkerbellSwt
Jan 29 2007, 10:34 AM
Hello
I also suffer from extreme depression, anxiety, agoraphobia, general mood swings, etc. I cannot live without my medications. My psychiatrist will never agree to take me off them. Even when we try to lower any doses, things get really bad. I dont think its related to my celiac. My family has a history of depression and major anxiety. While I was in rehab, the doctor there finally figured it out, that I am bipolar. If the meds werent going to work, ECT was the next step. When I had to go off all my meds when I got pregnant (was a surprise pregnancy), I had 20 weeks of complete hell. I never slept, I barely ate, I paced so much I swear I burned holes in the carpet. I kept Gary up all nite, every nite. and he always had to work the next day. The only sleep I would get was out of exhaustion. It was horrible. I never want to go back there again.
Now I am on a few different meds... I take Lamcital now (a bit safer than Depakote, if a pregnancy should occur), nortriptolyene, seroquel, and valium. I cant go without any of them. We tried to wean me off a bit, sent me right into a tail spin. About nothing. nothing in my life is wrong, per se, just couldnt handle showering everyday. So I can relate to all those types of feelings. It is hard to make the right decision for yourself. Every person is different. I can only recommmend that you talk to a doctor before stopping any script meds. Make sure its safe for you.
Mtndog
Jan 29 2007, 10:55 AM
Thanks for sharing TinkerbellSwt! That's a lot. I'm not planning on going off my meds. I'm the same as you (but unipolar) and I know that this is a chemical imbalance.
I just wonder sometimes if all this would have occured without gluten in my life.
TinkerbellSwt
Jan 30 2007, 09:14 AM
I do too. I wonder if they knew about my problem when I was 2 and my mom knew that something wasnt right and all kinds of docs told her she was crazy. endocrinogists and all, told her she was nuts there was nothing wrong with me. Even though I had a distended stomach and at the age of 2 I lost interest in all things. I wouldnt play anymore, I wouldnt go to the beach, I wouldnt go in the tree house, all the things kids should be doing when they are growing up. I wonder had they known back then, would my imbalance be as it is now? I know there is no way to figure it out, but sometimes I wonder!
JerryK
Jan 30 2007, 10:03 AM
Just thought I'd throw my 2 cents in here. I've been on Lexapro for several years now. I also have Xanax, which I take at night as needed, to sleep.
I've noticed a VERY PROFOUND depressive/lethargic/anxious effect when I eat gluten. By 2.5 to 3 hours, I can always feel it. Abstaining from gluten has the effect of making me feel UP or good. Interestingly these are the exact symptoms that got me on an AD to begin with. I'm sure this isn't true for everyone, but I bet there are others like me. I strongly suspect that a good portion of my symptoms are actually caused or exacerbated by the consumption of gluten.
Does that mean I can stop my AD? Ask me this question again in six months.
Megz
Jan 30 2007, 12:02 PM
The more I read and study about what symptoms I've had and have had to live with the more upset I get. I've suffered from depression for four years and due to some 'strange phenomenon' I couldn't take anti-depressants because I've got a sensitivity to most over-the-counter meds.
I havn't been doing this long but wow do I sink into my depression/anxiety when i get glutened

it's almost my cue, when my mood swings, I know it's going downhill.
I'm not saying I'm glad you're all suffering from this too, but I am thankful you're all sharing so that us newbies can see we're not all alone- thanks!
Mtndog
Jan 30 2007, 03:18 PM
I'm so glad people feel comfortable talking about this. Depression is one of the clinical symptoms of celiac. Someone on another thread (I wish I could remember which one) said that gastroenterologists are starting to acknowledge the stomach as a 2nd brain

which I think makes COMPLETE sense! It would be intersting to see as people heal if they can reduce their dosages etc. I know one former board member who was on over 20 prescriptions (not all psych meds) and is off ALL of them now.
I think that going gluten-free is the answer for some people, but not all.
darlindeb25
Jan 30 2007, 04:01 PM
I agree Jerry, I know that my panic/anxiety was caused by gluten. The sicker I became, the more panic I encountered. I worried about everything, and the biggest thing I worried about was disappointing everyone else. A vicious cycle, the more I panicked, the more I worried, the more I worried, the more I panicked. I was taking 40mgs of Paxil and still panicking. There was a time when I was on Xanax, but I could not cope on it, still, if I take it, I get very jumpy and out of control the next day. I know my anxiety is caused by my celiac disease and other intolerance's.
missy'smom
Feb 9 2007, 11:17 AM
QUOTE(JerryK @ Jan 2 2007, 04:38 PM)

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.
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 so true and well said. If only those in the medical profession got this.
Carriefaith
Feb 9 2007, 04:11 PM
QUOTE
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!
Gluten does mess with my brain for sure. When I am glutened I can get depressed, nervous, anxious, irritable, moody, anti-social, and paranoid... Let's just say that I'm not much fun to be around.
Hardyo
Aug 12 2007, 03:29 PM
Hi
In the past i was on anti-depressants for clinical depression and anxiety, i was on and of them for about 3/4 years maybe longer, but last november i was diagnosed as a celiac and after about 3 months i started to wean myself of the a/d's and since then i have struggled but according to my gp it can take up to a year for the stomach to heal properly and i hope that its the celiac symptons i'm suffering from not another bout of depression.
especially since i've accidently glutened myself a couple of times and firstly i suffered the anger and rage then i was so depressed, these symptons lasted about two weeks the first time, maybe 4/5 days the second time, and all the time i was going through it i didn't think it would ever end and i did consider going back on the a/d's but i found this site and found that other celiacs suffer emotionally the same as i and that helped me realise that it is just the gluten.
My doctor doesn't believe that there are mental health problems linked to celiacs, but its to much of a co-incident if you ask me, my mum is a celiac but years before she was diagnosed with that she was treated for schizophrenia and depression and my son and my nephew have autism.
It makes me wonder if we'd been diagnosed earlier would things have been different.
goodluck
binky1246
Aug 12 2007, 03:54 PM
I have been fighting with depression for a while. When I realized I had celiac(with no help from doctors) I thought that would fix it. It did some. Then I had a ELISA blood test done for 128 food allergies. The problem I had was that after I went gluten-free, I was still eating foods that were dangerous to me. The hard part is that it is healthy foods that I can't eat. Lettuce, Tomatoes, Cucumber, beef, And several others. Since I have gotten off of the other foods, I feel much better. The doctor that helped me do the blood test said that celiacs have far more the just gluten allergies and in my case he was right. My suggestion is to find out all the food allergies that one has and then make the decision from there. For me personally, I have had bad experiences with the medication, but that doesn't mean that it won't work for others. Just make sure to either do the research yourself, or if you are lucky enough like me, have someone help you. Just remember one thing there is no shame in the decision that you make for yourself. I have been three years actively searching my solutions, and I am still not sure if I have found them all. Good luck to all who need it.
juliem
Aug 13 2007, 04:10 PM
Great topic Bev!
It breaks my heart to read everyone's personal stories, so much suffering.
I was diagnosed with depression when I was 14 or 15, I know I had it much earlier than that though. I remember feeling so supressed, trapped in a darkness, and didn't have much of a zest for life at a really really young age, which I don't think is typical for a child.
When I was diagnosed I did a lot of "talking" with different therapist which really didn't help me. I felt like my depression wasn't really situational but rather something was going on physically with my body. I had a lot of physical symptoms that were ignored by all the medical professionals I saw and therapy with psychiatrists, psychologists, and psychotherapists and medications were really pushed as the solution.
I was put on prozac when I was 18-19 and it just made me so much worse, my behavior was unrecognizable. This went on for a 2-3 years on and off prozac, at a higher dose, and then I tried effexor for a short time. I just couldn't take the drugs, they made me so much worse and I had a lot of side effects.
It wasn't until I dabbled in the alternative medicine world that the clouds parted for me. I learned about food allergies and intolerances, balancing my hormones, vitamin and mineral deficiencies, adrenal stress, heavy metal toxicity, bacterial/viral/fungal/yeast/parasite infections, and etc.. As my body became more balanced my moods and state of mind drastically improved. I know it isn't for everyone but it saved my life and now when I look back on my life it's hard to believe where I came from because I am in such a better even steady place.
Now I notice that everything I eat directly contributes to my depression. The longer I am off gluten the more noticeable my mood swings are when I accidentally ingest gluten. A couple months ago I unknowingly had some gluten and it wasn't too long after maybe a few hours I flew into a rage, it was not pretty. Sugar and dairy also tend to have the same effect on me, but to a much lesser degree.
Sweetfudge
Aug 13 2007, 06:00 PM
QUOTE(juliem @ Aug 13 2007, 06:10 PM)

Great topic Bev!
It breaks my heart to read everyone's personal stories, so much suffering.
I was diagnosed with depression when I was 14 or 15, I know I had it much earlier than that though. I remember feeling so supressed, trapped in a darkness, and didn't have much of a zest for life at a really really young age, which I don't think is typical for a child.
When I was diagnosed I did a lot of "talking" with different therapist which really didn't help me. I felt like my depression wasn't really situational but rather something was going on physically with my body. I had a lot of physical symptoms that were ignored by all the medical professionals I saw and therapy with psychiatrists, psychologists, and psychotherapists and medications were really pushed as the solution.
I was put on prozac when I was 18-19 and it just made me so much worse, my behavior was unrecognizable. This went on for a 2-3 years on and off prozac, at a higher dose, and then I tried effexor for a short time. I just couldn't take the drugs, they made me so much worse and I had a lot of side effects.
It wasn't until I dabbled in the alternative medicine world that the clouds parted for me. I learned about food allergies and intolerances, balancing my hormones, vitamin and mineral deficiencies, adrenal stress, heavy metal toxicity, bacterial/viral/fungal/yeast/parasite infections, and etc.. As my body became more balanced my moods and state of mind drastically improved. I know it isn't for everyone but it saved my life and now when I look back on my life it's hard to believe where I came from because I am in such a better even steady place.
Now I notice that everything I eat directly contributes to my depression. The longer I am off gluten the more noticeable my mood swings are when I accidentally ingest gluten. A couple months ago I unknowingly had some gluten and it wasn't too long after maybe a few hours I flew into a rage, it was not pretty. Sugar and dairy also tend to have the same effect on me, but to a much lesser degree.
i also was diagnosed in my teens. my parents thought i was just experiencing "normal" teen-moodswings.
i don't think a gluten intolerance caused my depression but i know both feed off each other. i get so emotional when i'm glutened, and when i get depressed, i succomb to eating gluten more easily.
i want to know how to get more into alternative medicines. one of the things i've been noticing lately is that i'm not very in tune w/ my body. i'm going to the dr tomorrow to have some more allergy tests done, cuz i've been off gluten for a year, but still get really sick sometimes. do you recommend any sites?
juliem
Aug 14 2007, 12:23 PM
QUOTE(Sweetfudge @ Aug 13 2007, 08:00 PM)

i want to know how to get more into alternative medicines. one of the things i've been noticing lately is that i'm not very in tune w/ my body. i'm going to the dr tomorrow to have some more allergy tests done, cuz i've been off gluten for a year, but still get really sick sometimes. do you recommend any sites?
Hi Sweetfudge,
I don't personally know of any websites that I can vouch for all of the contents. As with anything, you have to be careful what kind of information is being put out there.
Everything I learned was through my experiences when I was under the care of naturopaths, osteopaths, acupuncturists, nutritionists, and the ocasional MD who swayed to the alternative side.
I think wanting to get more in tune with your body is a great idea! Many on this board have many issues due to additional food intolerances and allergies. Check out the category "Other Food Intolerance and Leaky Gut Issues". Lotsof good info.
Good luck to you!
maybe I have celiac
Aug 14 2007, 06:08 PM
Yes, all my life I have had depression for unexplained reasons. I always thought that it was just the way that I was predisosed genetically. I grew up in a normal family, never been through anything too tramatic. Tried everything, dietary changes, vitamins, meds, doctors' visits, counseling.
I have had very positive dietary results. I cheated a couple of days ago to see what would happen and I noticed mild depression a couple hours after. Also I got a cystic acne breakout , loss of motivation, headaches, rashes and razor burns on my face when I shaved among other the symptoms that I may or may not be aware of.
This Celiac is still a new concept to me after two months plus, so I hope that I keep on keeping on. I guess I am a member of this board not only to help myself, but to possibly help someone out there who has had similar experiences as me.
tom
Aug 16 2007, 10:04 PM
Similar to many I'm sure, I had nearly lifelong problems w/ depression and anxiety. Kinda figured that was just how it was, and self-medicated w/ just about anything & everything.
Spent a few yrs on a variety of anti-depressants, some of which seemed to work for 2-4 wks, then not at all.
BUT, for ~9 wks now, I've been truly happy, every day and all day.

The key was eliminating the FINAL food intolerance - in my case soy.
I've felt better, ALL 60-some days in a row, than I'd felt since a child in the early 70s.
I say skip the pills - find the rest of the diet issues. OK, so maybe everyone can't get as lucky as I feel. If the pills work, who am I to dismiss them?
I've come to believe that everyone has the capability to feel fantastic tho. And I NEVER could have believed that over the prev 30+ years.
Best Wishes to all . . ..
gfp
Aug 20 2007, 11:48 PM
QUOTE(Mtndog @ Jan 2 2007, 06:51 PM)

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.
Just one of my 'alternative' scientific head views on this....
Drugs certainly work ... and I think a lot faster than a proper psychiatric treatment ...
Just my 2c but because their are SOME doctors who will just prescribe drugs this offers a quick fix... and because of the nature of the problem and almost catch-22 nature of being able to do anything positive in life when people are severely depressed then many patients who are either scared of the psychiatric sessions and/or do not have the will and energy to go through them this introduces a large leaning towards the generalist and anti-depression drug treatments.
In other words the statistics are biased in terms of what the question is (well stats always are)
In this case drug treatment offers an escape from dealing with a situation of getting longer term help and this is the choice most people with severe and chronic depression are going to find easiest...
Just my 2c ...
Canadian Karen
Aug 21 2007, 04:05 AM
QUOTE(gfp @ Aug 21 2007, 03:48 AM)

Just one of my 'alternative' scientific head views on this....
Drugs certainly work ... and I think a lot faster than a proper psychiatric treatment ...
Just my 2c but because their are SOME doctors who will just prescribe drugs this offers a quick fix... and because of the nature of the problem and almost catch-22 nature of being able to do anything positive in life when people are severely depressed then many patients who are either scared of the psychiatric sessions and/or do not have the will and energy to go through them this introduces a large leaning towards the generalist and anti-depression drug treatments.
In other words the statistics are biased in terms of what the question is (well stats always are)
In this case drug treatment offers an escape from dealing with a situation of getting longer term help and this is the choice most people with severe and chronic depression are going to find easiest...
Just my 2c ...
Hey Steve!
You know around here your 2c are worth their weight in gold!!!!
Hugs
Karen