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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

People With Clinical Depression And Anxiety
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47 posts in this topic

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!

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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

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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.

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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

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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! ;)

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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 :blink:

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 :unsure:

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! :o )..I don't think there are any easy answers.

As Darlindeb says he 'needs rewiring' and he just can''t correct it himself.

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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!

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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 :unsure:

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! :o )..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.

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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.)

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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.

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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.

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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.

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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

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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. :blink:

Keeping it real ;) ... marcia

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

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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.

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

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 :unsure:

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! :o )..I don't think there are any easy answers.

As Darlindeb says he 'needs rewiring' and he just can''t correct it himself.

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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.

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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. :(

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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. :(

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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.

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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.

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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.

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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

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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

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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 :blink::P

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    • There is currently not any enzymes you take that will get rid of gluten, they are working on a promising one to reduce symptoms but all others out there right now are a bust and will not help you much if it all with gluten exposure, Celiac is a auto immune disease, your reacting to the proteins of gluten and it is attacking them and your own body.  I do suggest a digestive enzyme if you have food issues in general to help break them down. But this will not fix gluten exposure, reduce damage from gluten, or make gluten eating safe by any means. These current ones on the market are FAD ones target at healthy people and helping them with general digesting of gluten proteins but will not help you if you have celiacs to eliminate gluten reaction symptoms.
    •   Could try causally asking your family to get the blood test done next time they are at the doctors. They could have it and only have minor or no symtoms to it. There is a form of it called silent celiacs with no outward symptoms but it is still destroying your villi and causing your body to slowly degrade. Doing so could shed some light on other issues, make family more understanding to your issues, and help them out in the long run.    I was adopted at only a few weeks old, so my issues run a bit deeper with both leaning about this disease and getting anyone in the family to understand it. Does not help my birth mother still to this day refuses to release updated medical records or accept any kind of contact.    >.> I give advice all the time, I like to feel useful to others, and can be oblivious to others feelings and reactions due to a form of autism called Aspergers.  Bit of a pain, but the feeling of being of use to others is very rewarding even if sometimes confused with being helpful over being a ass or someone overly intrusive.    I just wish others had helped me out earlier with this disease.   PS Anonymous, you keep posting on older threads, ALOT recently. Not a bad thing, just something I picked up on and piqued my interest/concern with how out of date some information might be.
    • Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come.  If you've not already seen it there's advice and further info here:    It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there  Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...
    • Hello again   Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside.  What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive  and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example.  You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest.  If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms. Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember: 
    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
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