46 replies to this topic

[Dukie]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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.glutenfre...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]

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]

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]

deleted

[UR Groovy]

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]

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.