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celiac disease And Mind Problems


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6 replies to this topic

#1 tennisman

 
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Posted 12 March 2012 - 06:22 AM

I have been gluten free since I was diagnosed in 2003 . But lately I have been really struggling with the diet the last year and half or so I keep thinking of the foods I miss I get really angry it's driving me mad :( I don't get why 7 years the diet never bothered me but now I hate it .

For ages I have also had depression , anxiety , anger problems , i'm very very paranoid and have very strange sleep problems , I have been going to Counselling and they said my sleep problems could be sleep hallucinations it really scares me when it happens and I always feel very tired the next day . I find Counselling helps but it never stops the problems .

I know celiac disease is linked to depression , anxiety , fatigue etc and whenever I think about celiac disease , the problems become worse , I also get so angry when some non celiac's talk to me about celiac disease like not believing a little bit of gluten can make us ill , recently a non celiac said a few things when I was eating in a restaurant and I got so angry and broke some of the restaurant cutlery .

It sucks feeling low and hating celiac disease and the gluten-free diet so much I don't know how to cope celiac disease , after 9 years with it I find it keeps getting worse , when I should be used to it by now :(
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#2 BabsV

 
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Posted 12 March 2012 - 08:26 AM

I'm so sorry you're having a tough time. I wish I could offer words of wisdom but I am a newbie (diagnosed only about 7 months ago.) I honestly think that for me being gluten-free is going to be an ongoing mourning period where I am ok most of the time but every once in a while it smacks me in the face and I feel frustration, regret, anger, whatever. I also struggle with anxiety and sleep issues...I am hoping they will improve but try to take it one day at a time. If I get too wrapped up in it I end up increasing my stress and feeling worse and worse and worse. Then I have to snap myself out of it which is easier said than done some times. I try to make time for myself every day (whether it is reading or being on the computer or whatever I feel like that day), make sure to get as much exercise as I can, take time to be involved with family and friends, eat as healthily as possible, etc. I also try to ignore people who have no clue about the gluten-free lifestyle when they start in on it -- if I can use it as a teaching experience I will do so and luckily the people around me have been very patient about my lectures and comments about being truly gluten-free. I'm sure others will have more and better words of wisdom. You've come to the right place for support!
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#3 Skylark

 
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Posted 12 March 2012 - 09:25 AM

I'm sorry you're having a hard time.

Going gluten-free was not enough to reverse the mental problems gluten gave me. I had bipolar illness, anxiety attacks, and serious sleep problems. I had to go on probiotics to improve my absorption of nutrients, and I take some pretty serious supplements to maintain my mental health. I take a complete multivitamin/mineral/trace supplement called EmpowerPlus from Truehope, and a very concentrated fish oil supplement. Even with all that I was still vitamin D deficient so now I take extra D as well.

I don't know why I seem to need so much nutritional support compared to other people, but it makes an amazing difference in my mental health. If you're deficient on the vitamins and trace elements your brain needs to make neurotransmitters, or in the minerals that form nerve impulses, mental illness results. I really wonder if the link between celiac and mental health is because our intestines just don't work as well even on the gluten-free diet.
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#4 tennisman

 
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Posted 12 March 2012 - 10:07 AM

I'm so sorry you're having a tough time. I wish I could offer words of wisdom but I am a newbie (diagnosed only about 7 months ago.) I honestly think that for me being gluten-free is going to be an ongoing mourning period where I am ok most of the time but every once in a while it smacks me in the face and I feel frustration, regret, anger, whatever. I also struggle with anxiety and sleep issues...I am hoping they will improve but try to take it one day at a time. If I get too wrapped up in it I end up increasing my stress and feeling worse and worse and worse. Then I have to snap myself out of it which is easier said than done some times. I try to make time for myself every day (whether it is reading or being on the computer or whatever I feel like that day), make sure to get as much exercise as I can, take time to be involved with family and friends, eat as healthily as possible, etc. I also try to ignore people who have no clue about the gluten-free lifestyle when they start in on it -- if I can use it as a teaching experience I will do so and luckily the people around me have been very patient about my lectures and comments about being truly gluten-free. I'm sure others will have more and better words of wisdom. You've come to the right place for support!


Thanks for the reply . It does really suck when we get them feelings . It's hard not to get wrapped up in it sometimes :( I try not too get annoyed talking about celiac disease but I feel celiac disease so angry talking about it even if people are just asking friendly questions or suggestions , i'm also a bit stupid lol , so sometimes I think they are saying something negative and I get angry and than realise I misunderstood them and sometimes they are saying negative things , I think most people's attitude is your on your gluten-free diet so stop complaining for no reason . I like to go to gym or play tennis but have some stomach and back problems are stopping that at the moment , I will have to try reading again :)
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#5 tennisman

 
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Posted 12 March 2012 - 10:46 AM

I'm sorry you're having a hard time.

Going gluten-free was not enough to reverse the mental problems gluten gave me. I had bipolar illness, anxiety attacks, and serious sleep problems. I had to go on probiotics to improve my absorption of nutrients, and I take some pretty serious supplements to maintain my mental health. I take a complete multivitamin/mineral/trace supplement called EmpowerPlus from Truehope, and a very concentrated fish oil supplement. Even with all that I was still vitamin D deficient so now I take extra D as well.

I don't know why I seem to need so much nutritional support compared to other people, but it makes an amazing difference in my mental health. If you're deficient on the vitamins and trace elements your brain needs to make neurotransmitters, or in the minerals that form nerve impulses, mental illness results. I really wonder if the link between celiac and mental health is because our intestines just don't work as well even on the gluten-free diet.


Thanks for the reply . Sorry to hear about the mental problems gluten gave you . I'm glad the vitamins /minerals help :) I have had problems with Vitamin D I took supplements for 3 months my level doubled I took it for another 12 months my level only went up by 3 , I am not allowed to take Vitamin D at the moment because of kidney stones :( I find if it don't take Vitamin D I get colds and viruses a lot , when I took Vitamin D for a 12 months I had 0 colds a few weeks after I came off them I got a cold and tonsilitis so Vitamin D helps me a lot I think . I was diagnosed in 03 with celiac disease and my Vitamin D wasn't tested until 09 and that was only because my GP went to a medical lecture or something and was told about Vitamin D deficiency linked to celiac disease . My doctor who diagnosed me has a website saying he can help celiac disease and vitamin deficiencys yet he never tested my Vitamin D it's very frustrating . I'm hoping to get all my medical records as I doubt most of my vitamins and minerals have been checked . Luckily I have a great stomach doctor now and he is checking my vitamin D every time . I agree about intestines not working as well even on the diet . I'm just annoyed all the mental problems have gotten worse the longer i'm on the diet , I don't remember having them before I was diagnosed .
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#6 Skylark

 
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Posted 12 March 2012 - 12:08 PM

I don't think the evidence of vitamin D causing kidney stones is strong enough to remain deficient and ill. Here's a couple articles to help you decide. It looks like maybe you could take the vitamin D if you eat lots of fruits and veggies.
http://www.livestron...-kidney-stones/
http://www.vitamindc...-kidney-stones/

It sounds like you are not eating the right foods for your body, maybe? Did your diet change a lot when you went gluten-free? Gluten-free bread isn't enriched like regular bread and there are also board members who have been deficient in odd things like molybdenum. Also have you tried going off dairy and soy? A lot of us react to those and you won't feel good emotionally if you are eating a food to which you are intolerant. I don't do well with dairy at all.

B12 is another big issue for us and B12 deficiency can really mess with your mind. It is pretty safe to pick up a methyl-B12 supplement at the drugstore and take 500-1000 mcg/day to see if it helps. Get methylcobalamin which is a form your body can directly use, not cyanocobalamin. Some people like sublingual B12 but I'm not convinced you don't just swallow it.
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#7 tennisman

 
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Posted 12 March 2012 - 01:57 PM

I don't think the evidence of vitamin D causing kidney stones is strong enough to remain deficient and ill. Here's a couple articles to help you decide. It looks like maybe you could take the vitamin D if you eat lots of fruits and veggies.
http://www.livestron...-kidney-stones/
http://www.vitamindc...-kidney-stones/

It sounds like you are not eating the right foods for your body, maybe? Did your diet change a lot when you went gluten-free? Gluten-free bread isn't enriched like regular bread and there are also board members who have been deficient in odd things like molybdenum. Also have you tried going off dairy and soy? A lot of us react to those and you won't feel good emotionally if you are eating a food to which you are intolerant. I don't do well with dairy at all.

B12 is another big issue for us and B12 deficiency can really mess with your mind. It is pretty safe to pick up a methyl-B12 supplement at the drugstore and take 500-1000 mcg/day to see if it helps. Get methylcobalamin which is a form your body can directly use, not cyanocobalamin. Some people like sublingual B12 but I'm not convinced you don't just swallow it.


Thanks for the articles :) My doctor just said stop Vitamin D supplements for now , the kidney stones started in 08 and I went on Vitamin D in 09 so the Vitamin D didn't start the stones , I have to do some tests to see what has caused them my doctor said it could be a Vitamin D deficiency . I eat plenty of veg don't really eat much fruit as apples , pears , peaches etc give me a sore throat and make my lip swell , think I may have a latex allergy.

As I was diagnosed 9 years ago I can't really remember how much my diet changed when I started gluten-free diet . I remember I was only 15 when diagnosed, at school I just ate gluten free rolls ( the rolls were very big and probably had good nutrition but unfortunately the company stopped making them ) and the rest of my lunch was gluten-free . When I left school I stopped eating bread and ate lots of rice . A lot of the gluten-free products I eat on prescription changed in 08 the bread and pasta were very different . Nowdays I eat bread once in a blue moon , I don't really like bread . I stopped eating dairy last october I don't think it affects my stomach as after about 3 months I tried dairy a few times and had no reaction , I think maybe milk may give me headaches and makes me tired possibly makes my sleep problems worse . I don't really eat soy . I have done a few elimination diets and food diaries my dietican doesn't think I have any intolerances.

I will try and get B12 testes my old stomach doctor apparently checked all my Vitamins in 09 but he didn't test Vitamin D so it wouldn't surprise me if other Vitamins were not checked , I will try and get the results so I can check my levels myself . My counsellors say the mind problems could also be non Celiac related but I think vitamin deficiencies could also be a lot to do with them . Also I have had some strange tests results with Ankalosing Spondylitis and Lupus , for AS I had positive blood tests and x-ray was told I had AS this was in 06 than a week later apparently the x-ray was mis read and the doctors said I didn't have AS . Than in 08 I again tested positive for AS and Lupus but doctor said it's possible to test positive and not have the diseases even though I had the symptoms and one osteopath thought I had AS . But than I did another test for AS last year and it came back negative , it's strange I tested positive twice and than negative once so most probably I don't have AS .
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