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Nantzie

My Psychologist Is Interested In Celiac Connection

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I told her I'm going to get her some information on celiac when I see her again on Friday, but I also thought it might be good for her to hear some personal experiences as well.

So any experiences, minor or major, would be helpful.

Nancy

Hi Nancy!

I realize it's past Friday but this thread really hits at the heart so thought I would post anyway. The link below is something perhaps your doctor would find interesting.

http://www.thenutritionreporter.com/Nutrition_and_Crime.html

I've read all the posts in this thread and so much of it matches my own experience. When I first went gluten-free (3.5 years ago) so much changed for me that I had to know why and have been searching for answers ever since. It's something of an obsession for me. My companion went gluten-free 7 months after I did, and we went casein free 3 months ago. For him, the casein made about as much of a change as the gluten did. A brief list of some of the "mental" changes --

Brain fog: Improved for both of us. Magnesium seems to help (taking 250 mg/day)

Depression/Rage: Improved for both of us. This is like 2 sides of the same coin. This really kept us back in life and certainly affected our social interactions. Vitamin B6 (50 mg/day) helps control this when accidental glutening happens. Before going CF, my companion was prone to making socially inappropriate statements, loudly, in public. After going CF he's gone back to the gentle, kind person that I fell for 20 years ago. As posters above have noted, the kind of stress this places on a relationship is really awful. Casein gives me a mean streek too; certainly brings out my worst side. Vitamin B6 doesn't help with accidental casein ingestion but doubling up on our regular B vitamin does. Wish I was a scientist and could study this.

Migraines/Headaches: Stopped for me on going gluten-free, stopped for him on going CF.

Epilepsy/Neurological problems: Stopped for me on going gluten-free. Meds never really helped so I tried to deal with it by withdrawing from social activities because I found them stressful. It's discouraging sometimes that now that I feel good and want to be social it's harder to be social because of the difficulty with sharing food with others.

Sexual Problems: Stopped for him on going CF. Let's just say that I'm now a much more frequently loved woman, and very much happier for it! Makes me wonder how much less Viagra would be sold if more men knew about this.

We both also had physical problems. It was the joint pain (arthritis) that drove me to find a dietary solution. We also both had rashes, especially in the winter, that we didn't relate to diet until they quit. I had the big D starting later in life than most of my other issues, he had constipation.

Hope your doctor is able to use this material!

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Put my husband on list for pre-celiac disease depression that lifted considerably after going 100% gluten free.

Now the depression is only situational and not as intense as before.

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Thanks for the continuing posts. My appt isn't until this Friday, so keep them coming. And any time more are added, I'll keep bringing them to her. She is the head of her counseling business and has two or three other counselors working for her. She also goes to my church, and you know how fast information travels in a church. Now that I think of it, she is actually running a program at church right now for people with depression and anxiety. I'm expecting that us giving her this information and opening up a whole new world to her will help hundreds of people.

I agree that everyone should be screened for not only celiac, but other food intolerances. Isn't it Italy who screens kids for celiac before they even start school?

Nancy

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Yes, Italy screens all schoolchildren prior to beginning school by age 5 or 6, I believe. They know it is important because of how untreated celiac can lead to inattention and learning difficulties. Their celiac "rate" is considered high at 1 in 100 or so, but that may well be just because they screen everyone and are more likely to find out about it. Of course you can always develop it later on, but having that level of awareness in the general population would also probably help.

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My mother believes that I have had Celiac Disease all of my life (but diagnosed at 26 years old). Four times I tried to commit suicide, once when I was in the sixth grade, twice at 20, once at 22. I was seeing a psychologist for 6 years - under every medication under the sun! Was diagnosed with depression, bipolar disorder, had severe panic attacks - lastly put on Lithium when I was 25.

On a side note, I had stomach issues from tenth grade on - I had every possible test done (upper GI, lower GI, ultrasound, colonoscopy, etc...each doctor told me that there was nothing obviously wrong with me. My stomach pains were so bad that I would lay on the floor in a ball, my husband (then boyfriend) would pick me up, put me in his truck, take me to the hospital and they would give me pain medication. This happened way too often. I was extremely underweight (100 lbs at 5' 6"), but I would eat like a hog.

I would often feel that I was on top of the world and that I was going to become famous (for some odd reason). I was a perfectionist to the extreme and would be too hard on myself. I would go five days without sleeping at all, to sleeping for 18 hours straight. My perception of reality was often way off. On all the medication I became foggy. I wasn't excited about anything - even my wedding. :(

When I found out that I had Celiac Disease, I went straight to the psychologist and told them I was not going to take Lithium anymore. I was certain that I would be fine now that I knew what my real problem was. I went cold turkey, and I feel absolutely wonderful!! I don't have one suicidal or depressive thought, my stomach pains have gone away, everything just turned normal. I never knew how that felt.

The last session with my psychologist entailed me describing Celiac Disease to her - I give her credit for wanting to understand the disease so she might help other people. She should have paid me $120.00 / hour for that one!

I find it incredibly sad that so many people suffer with depression and suicidal thoughts when it really is as simple as Celiac Disease that is causing it. I often wonder how many people accomplish suicide that only had to go on a gluten-free diet to feel fine. I think that it is pathetic that doctors in general do not have the knowledge or capacity to send someone to get a simple blood test. Even after that, a simple biopsy. America should be ashamed at where we stand right now with this disease in comparison with other countries. We can send a man to the moon but we can't diagnose Celiac Disease within a reasonable amount of time (11 years!!!!) It's obviously very frustrating to me. I lost so many years of my life - I can't get those years back. If only I had been diagnosed when I was young....who knows where I would be right now.

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My mother believes that I have had Celiac Disease all of my life (but diagnosed at 26 years old). Four times I tried to commit suicide, once when I was in the sixth grade, twice at 20, once at 22. I was seeing a psychologist for 6 years - under every medication under the sun! Was diagnosed with depression, bipolar disorder, had severe panic attacks - lastly put on Lithium when I was 25.

On a side note, I had stomach issues from tenth grade on - I had every possible test done (upper GI, lower GI, ultrasound, colonoscopy, etc...each doctor told me that there was nothing obviously wrong with me. My stomach pains were so bad that I would lay on the floor in a ball, my husband (then boyfriend) would pick me up, put me in his truck, take me to the hospital and they would give me pain medication. This happened way too often. I was extremely underweight (100 lbs at 5' 6"), but I would eat like a hog.

I would often feel that I was on top of the world and that I was going to become famous (for some odd reason). I was a perfectionist to the extreme and would be too hard on myself. I would go five days without sleeping at all, to sleeping for 18 hours straight. My perception of reality was often way off. On all the medication I became foggy. I wasn't excited about anything - even my wedding. :(

When I found out that I had Celiac Disease, I went straight to the psychologist and told them I was not going to take Lithium anymore. I was certain that I would be fine now that I knew what my real problem was. I went cold turkey, and I feel absolutely wonderful!! I don't have one suicidal or depressive thought, my stomach pains have gone away, everything just turned normal. I never knew how that felt.

The last session with my psychologist entailed me describing Celiac Disease to her - I give her credit for wanting to understand the disease so she might help other people. She should have paid me $120.00 / hour for that one!

I find it incredibly sad that so many people suffer with depression and suicidal thoughts when it really is as simple as Celiac Disease that is causing it. I often wonder how many people accomplish suicide that only had to go on a gluten-free diet to feel fine. I think that it is pathetic that doctors in general do not have the knowledge or capacity to send someone to get a simple blood test. Even after that, a simple biopsy. America should be ashamed at where we stand right now with this disease in comparison with other countries. We can send a man to the moon but we can't diagnose Celiac Disease within a reasonable amount of time (11 years!!!!) It's obviously very frustrating to me. I lost so many years of my life - I can't get those years back. If only I had been diagnosed when I was young....who knows where I would be right now.

I have felt odd all my life. As an infant I was weaned from the breast at 6 days old and threw up every single bottle feeding thereafter. No one investigated it in those days. They just fed me more. As an adolescent I was a model student, super nice, a perfectionist, anxious, on guard and worried all the time. Bewildered would be another good word. No one suspected any of my emotional pain. Even I didn't know what it was. It was just me. I also had indigestion every single day for my entire childhood and teen years. Believe it or not, I didn't want to be a bother so I never told anyone. I just became an expert at enduring it. I then had some years of bearing children with multiple miscarraiges interdispersed between and trying to hide all my innate anxiety in a cloud of youthful overachievement. And although I had obesity issues and bouts of severe fatigue on occasion, nobody ever guessed there was anything like this wrong. Just in the last 8 years as a postmenopausal woman, I now have daily severe panic disorder, constant anxiety, insomnia, heart flutters, agoraphobia, depression and obesity. I just got diagnosed with celiac this very week. All this time I thought I was just different. I guess I sure was. I am eager to see what the "real me" is like when I get fully unglutenized. I've never met her.

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I am eager to see what the "real me" is like when I get fully unglutenized. I've never met her.

I sure you will like her. I just feel sad that it takes so long for most of us.

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Nantzie, your counselor would be interested in the research of M Hadjivassiliou, M.D. He's published a lot on the neurological manifestations of celiac. He wrote an interesting editorial in the Journal of Neurology Neurosurgery and Psychiatry in which he says, "Gluten sensitivity can be primarily and at times exclusively a neurological disease." You can find it at http://jnnp.bmjjournals.com/cgi/reprint/72/5/560.

Carol

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I have Asperger Syndrome and Tourette Syndrome. Being gluten-free hasn't changed that. But what has changed is, that I don't get rage attacks any more! My husband still drives me up the wall with his need to wanting to control my every move. But I don't totally lose it any more to the point of hurting myself in my utter frustration. Also, for the most part, my Tourette tics have decreased.

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Melzo.....

You've said it so well I don't even know what to add. My life, I belive, would have turned out QUITE differently had I removed gluten so much sooner. It's been nothing but pain and frustration for nearly 40 years....I have been sad, literally, and felt empty, scared, and in deep psychic pain since early childhood. Medidcated since my early twenties (I'm 44 now) and cycling up and down so rapidly and deeply.....wasn't put on lithium until I was 37. that did help some....but NOTHING has helped like the complete removal of gluten from my diet. I, too, have been FIVE ENTIRE days without sleep.....I would rather have died.....and then a solid month on the couch, my body feeling as though it weighed a thousand pounds and could not move.

Nancy - I'm glad you've posted this thread and that your psycholigist is taking an interest in this.....I find I don't even NEED to go to a counselor since going gluten-free. Brain seems so much clearer and I am able to make sane decisions - esp. since also permanently removing 1) the boyfriend/fiance/then "friend" who had me stirred up and unstable for 16 months, and 2) alcohol - two weeks ago. Life is improving by leaps and bounds all the time and mainly progress is able to be made since removing gluten! It astonishes me and all friends/family who see the difference that a protein found in grains can do SO much damage to the emotions and brain.....

Celiactsue - - you did not post too much.....please don't let yourself feel that way. this is a place where we can talk about this stuff and others know the pain all too well.

ravenwoodglass - - what an amazing post. Glad you - and all of us - are still here.

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I have had severe problems with anxiety and depression. i was diagnosed with obsessive compulsive disorder, generalized anxiety disorder, and depression. i was put on zoloft which helped a bit, but i seemed to have bi-weekly cycles of anxiety attacks even on meds. it got so bad that i thought i was going to absolutly lose my mind and almost broke up with my boyfriend who i love dearly (acctually, i broke up with him for a day; i did lose my mind!!) we got back together and we tried to get through it despite my continuous anxiety attacks. when i went gluten free, all of my attacks went away. im still on meds, but i dont have cycles of anxiety anymore. im so glad i found out because being gluten-free saved our relationship. i am so glad because i couldnt imagine us being apart because of a disease that can be treated. i feel so much better now and i cant wait to tell my therapist!!! she will be amazed im sure.

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I am eager to see what the "real me" is like when I get fully unglutenized. I've never met her.

Wow! That really resonated with me! I feel the same way! It's pretty neato, isn't it?

I have struggled with depression since I hit puberty, been suicidal several times in my life, but could never quite bring myself to follow thru. I never had kids because I never felt like I had the energy to look after them. At 38, I have no career to speak of because I haven't been able to hold a job for more than a few years. I'd quit or the job ended and I'd be too exhausted to look for another, wary of promising my services knowing how unreliable my energy levels were.

And yes, I had frequent indigestion and just thought it was normal, not knowing any other condition. Same for my fatigue. Doctor after doctor said it was just stress. I began to think that my lower level of functionality just meant I was lazy.... I wanted to do things, clean my house, cook dinner, but I was just so tired. Because I didn't realize I had a condition that set me apart from other people, I beat myself up for not being able to work as hard as they did. But when my body began to block me from doing what I loved doing-- making art and writing about music -- knew something was wrong. Back in February, I felt so crappy all the time -- not sleeping at night, inert on the couch during the day, increasingly spacy and disengaged mentally -- that I decided that if this was what life had in store for me, I was done living.

Seeing the doctor who put me on the gluten free diet was a last ditch effort. Had I know then that she'd put me on this diet, I don't know I would have kept the appointment, but I had heard so many stories of how much she has helped others that I hung on. I've cut out gluten since the first week of April, and I feel so much better, saner, more mentally engaged, and some days even energetic. Having always struggled with my weight, I am looking forward to this new vitality so I can work it off! Even tho I turn 40 next year, I feel like I am about to become the person I have always wanted to be. As exciting as that is, I choke up when I think about the years wasted. Makes me all that much more dedicated to putting the future to good use.

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This thread really resonates with me.

I tried to commit suicide at 11 and then again at 19. At 16 they had put me on anti-depressants but I never took them. I fought depression for much of my 20's. I'm 51 now and when I think of the hours I have spent enraged at nothing, just for the sake of rage, it saddens me that I didn't understand the relationship to gluten/dairy and misery.

I've only been gluten free for a short time and already I see a difference. I am steadier, calmer and happier and I look forward to continuing to heal.

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WOW Wiping eyes. Taking a deep breath.. You all are blowing me away with these personal stories. It is simply incredible the degree of psychological effects of gluten on some people. I would venture to say that it probably effects everyone's psyche at least somewhat - maybe a little sadness or moodiness that would be thought of as mostly normal. I tend to be one that sees the glass half empty and am seldom really happy. Perhaps this little grey cloud will blow away after I'm gluten free for a while. :)

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I can't tell you how many times in the past few years I have written in my journal "so exhausted" & had no idea why I seemed completely unable to pursue my ideas... the intense frustration of a mind still producing ideas that I simply couldn't bring myself to execute... (I'm talking mainly my artwork here, but other things too.) I have questioned whether I was clinically depressed, as I probably was in my teens (never diagnosed but a lot of cutting & other self-hating behaviour)-- but what I mainly felt lately is sheer physical & mental exhaustion. The thing is, it wasn't just being anemic, I don't think (though I'm sure it didn't help)--I could still exercise, so I had some physical strength & stamina... I would just feel this huge wave of exhaustion come over me at the thought of executing any project... I couldn't "feel" my work anymore.

I would get in self-hating moods just because I would make resolutions to DO all those projects in my sketchbooks... & then once my paying work (illustration) was over, I'd feel absolutely dead, & just couldn't go back to the studio. Now & then I would have a little spurt of energy & think "Oh-- this is how I'm supposed to feel!" ...& then it would vanish.

Those brief respites always remind me of what it is like to come out of a dank cave & get a breath of fresh air. When I'm in that stuffy place, no amount of "perfume" in the way of positive experiences-- physical pleasure, amusement, mental stimulation or whatever-- can take away the sensation of constant oppressive dankness. It's as if only part of my brain is functioning, & I'm sort of going through the motions of living.

I think now that a great deal of this was simply gluten. I wish I had been keeping track of my diet before my diagnosis. I really wonder whether the good spells came when I was eating less gluten. I've had more of the "breaths" since going gluten-free, though they remain evanescent. I'm really looking forward to a steady state of breathing!

Leah

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I've been gluten-free for nine months now and I just realized a few weeks ago how incredibly happy I am. I'm happier now than I can ever remember. If I think back, my celiac symptoms started about 8-10 years ago, and the last five years have been a rollercoaster of depression. I am not taking any meds for depression anymore and I am dealing with life just fine.

When I was younger (age 4-6ish), I was extremely hyper. I'm lucky that my mother was willing to make the effort to put me on an elimination diet. She cut dairy and sugar from my diet. If she hadn't cut these out, I'm sure I would have been a Ritalin-child.

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I, too, have been FIVE ENTIRE days without sleep.....I would rather have died.....and then a solid month on the couch, my body feeling as though it weighed a thousand pounds and could not move.

This describes me really well. Thousands and thousands of pounds, like I was going to fall through the ground and keep going until I hit the center of the Earth. So freakin' horrible.

I have not felt that way in 2+ years now. Wow. It's amazing what we live with.

Congratulations to us all for beginning to heal.

Stephanie

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I am just posting a little tail end here. I think everyone else has said it better. Kudos to acoustic mom for the neurological research link. I've been very interestest in that work. My family seems to be primarily neurologically gluten intolerant. When I get gluten exposure, I get anxiety and coordination problems first. I'm atypical bipolar (runs on mom's side) and also ADHD. My mood symptoms and general concentration issues have been incredibly better without gluten. And I'm less medicated now than I was before diagnosis.

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Just want to say that this is a fascinating thread. I'm having a CAT scan on July 25 b/c my doc suspects a pituitary tumour. I have high levels of prolactin, which incidentally has also been found to be correlated with celiac disease. I wonder what else will be found on the CAT.

The most fascinating thing about Celiac for me is the systemic nature of the disease. For instance, lack of menstrual periods or depression and how they are linked to celiac disease.

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You guys . . . wow . . . your strength is amazing. Ravenwoodglass -- you amaze me. What strength of character you have. I had no idea that you had struggled the way in which you had. Isn't it AWFUL what gluten can do to you???

With regard to the neurological manifestations: Those are the only ones that I have. I don't have the big D, in fact, I have the opposite. I had trouble with IBS my entire life until the neurological condition kicked in, but I'm HLA DQ1 and DQ2 negative, negative antiendomysial and negative antitransglutaminase. Also, I have really healthy intestinal villi. Gluten just destroys the Perkinje cells in my brain.

The doctor in the United Kingdom was considered a "quack" and a "weirdo" five years ago . . . my, how times change, huh? He is also doing MRS -- Magnetic Resonance Spectroscopy -- and is finding that there are actual areas in the cerebellum that have no areas of neurotransmitter activity. And we wonder why we have brain fog? The cerebellum controls much more than just balance and motor skills. Every function of your body, essentially, filters through the cerebellum at one point or another. It's kind of the "regulator" of your nervous system, in a sense.

I grew up with ADHD, still have it -- my Reticular Activating System in my brain never kicked in. The latest research indicates that if children are given Ritalin at an early age (I know I said the "R" word!), that it actually "jump starts" the RAS and they won't need medications as they grow older. I will say that my medication is MUCH more effective since being gluten-free -- and that's WITH all the other brain problems.

I also have had depression and anxiety throughout my life . . . I can remember going to the family doctor at age 12 because I was exhausted and crying all the time . . . they didn't diagnose kids with depression then, though.

Also, with regard to the elevated Prolactin levels . . . they can also be due to hypothyroidism . . . and that runs rampant with Celiac, particularly with a predominance to developing Hashimoto's thyroiditis . . . something you might want to check if your CT is negative. That happened to me several years ago, and a doctor who will go unnamed chose to ignore it . . . . . hmmmmmm.......

It amazes me the strength that people possess. Everyone has gone through trials and tribulations that we may not even know about . . . and yet, here they are, helping each other. Speaks a lot for the human race, and the compassion that each of us is capable of posssessing. Wow.

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Just want to say that this is a fascinating thread. I'm having a CAT scan on July 25 b/c my doc suspects a pituitary tumour. I have high levels of prolactin, which incidentally has also been found to be correlated with celiac disease. I wonder what else will be found on the CAT.

The most fascinating thing about Celiac for me is the systemic nature of the disease. For instance, lack of menstrual periods or depression and how they are linked to celiac disease.

wow Phila, let's pray it's not a tumour.

As far as lack of menstruation - that can be due to severe malnutrition, a result of untreated Celiac. And depression, of course - same thing. It's all connected. The ffect of long-standing malnutrition on the brain is pretty amazing and definitely not good....

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Even tho I turn 40 next year, I feel like I am about to become the person I have always wanted to be. As exciting as that is, I choke up when I think about the years wasted. Makes me all that much more dedicated to putting the future to good use.

I feel the same way. Brainfog and fatigue set in when my first child was born, and I wish I could go back and celebrate all those wonderful moments when the kids were little. Instead, I worked very hard to simply endure and get from one day to the next. I forgot what it felt like to be really happy, but tried to make the best of it.

Once the kids were all in school, my plans to contract part time (tech writing/indexing) never got off the ground because I felt like I couldn't focus well enough (and stay awake long enough) do a good job--but I made other excuses. I think admitting how compromised I was, and having no solution in sight, would be utterly depressing. Especially having been a high achiever in the past.

I think of myself as someone who loves people and cares deeply about others, but all this time I was too tired to really care, much less offer help when someone was having a rough time. Too tired to engage in conversation--it was all I could do to listen; I had no 2 cents to offer on anything. Exercise? Only if I had to, and then I'd wish I was taking a nap instead. My formerly neat handwriting was sloppy and hard to control.

Even simple tasks like grocery shopping were the mental equivalent of wading through hip-deep oatmeal.

Since going gluten-free about 6 months ago, I usually bounce out of bed in the morning feeling not just rested but giddy and ready to take on the day. I remember what joy feels like! I still have setbacks as I learn what foods make me tired, but most days I feel like the person I was in high school, back when anything was possible.

Thanks to all of you contributing on this thread. Your stories make me cry, and your perseverence inspires me. I wish I had "met" you all a dozen years ago. Even more, I wish this kind of stuff could make it into the mainstream, so more gluten-sensitive people who suffer mentally could get better. Nancy, I'm glad your counelor is seeing the connections, and I hope she/he can help more people with gluten-induced problems.

Carol

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Reading all your stories really move me. I guess I have to consider myself lucky that i was DX at an early age or the early stages of celiac disease.

I suspect that my symptoms started around the time i had my gall bladder removed, i was just never the same after that. (about 5 yrs ago)

But about 2 years ago is when my big spiral down started. I started losing a lot of weight, becoming very anxious, which was very very unlike my outgoing social personality. I had a few anxiety attacks, once where i actually blacked out. Went to the ER several times, there was a point where i was not eating. I was very scared for myself. I was like a nervous nelly. (and i was never the type to worry or be scared of anything)

then i started seeing a therapist, went on klonopins, have been on them for the past year and a half. Im on a very low dose now thanks to my DX. Following my diet and about a month or so after, i started to feel better. Im now seeing my therapist less and less and she is reducing my doses hoping soon i will totally be off of it. For the first time last month (8 months after my DX), i yelled out that i finally feel like my old self again! All of the anxiety and craziness has been dissappearing.

I look back and look at that person and I ask myself who was that, it sure wasnt me!!!

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From what I've initially read, the neuro/psych improvements take longer, but I'm more than willing to go the distance!

As I said, I don't know yet if gluten will prove to be the culprit behind my life history, but at this point I truly pray it is.

From what you've written and how your intestinal issues are improving, I'd say there's a strong chance the removal of gluten will greatly improve your life! And yes, the psych improvements do take a while. my mental health gets better and better all the time, and without gluten clouding my brain, I've had the strength to make some significant changes, very much for the better. I am down to a low dose of Effexor (75 mg.) about every third or fourth day, and 100 mg. of Seroquel (used to be 300 a couple of years ago). I am truly astonished and thank God every day.

the elimination of gluten certainly isn't easy at first, but worth every minute of inconvenience (and now it's second nature) to alleviate our issues. Laurie, I'd stay on the meds a while longer, even a year or two if necessary. And if you need a maintenance dose forever, don't worry - - you want to be the best YOU you can be, and it that means some medicaton, then so be it.

Blessings and good health -

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