[ann72601]

I've only known for a few weeks that I have celiac, which has explained a lot about my problems. I am very worried that my sanity is gone though. I don't know how many of you struggle with this, but it really scares me. Does celiac damage the brain for good? I used to just get the fog, but now when I eat or touch gluten or some other food I've become sensitive to, it affects my thinking, my sleeping and I just want to stay away from people until I feel good again. I'm so afraid of going crazy. Is there hope of being normal or will I have to learn to accept myself, crazy, sick and all?

[ravenwoodglass]

Your not alone. The only thing you can really do is be as strict as you possibly can. For some of us gluten is a neurotoxin. Whether you will recover fully depends on a lot of different factors. Some of us recover fully and are 'normal' off of gluten and for a few the damage to the brain is too great for a complete recovery. If you go back to being stable after the glutening is over, and for some that can take as long as 3 weeks, then if you stay away completely you should heal. If you continue to have problems you may want to consider seeing psychologist who will be able to help you cope.

[blancasagro]

It took me like a month to be normal again, you need to be very strict and you will see results. When I visited the psychologist she helped me very much. Just two days ago I ate something wrong and I'm in the fog again, but at least I know that it will go away, and I learnd that I cant eat that again. I used to take many showers a day with hot water, that worked for me and prayed a lot.

[mushroom]

ann72601, on Jul 29 2009, 08:49 AM, said:

I've only known for a few weeks that I have celiac, which has explained a lot about my problems. I am very worried that my sanity is gone though. I don't know how many of you struggle with this, but it really scares me. Does celiac damage the brain for good? I used to just get the fog, but now when I eat or touch gluten or some other food I've become sensitive to, it affects my thinking, my sleeping and I just want to stay away from people until I feel good again. I'm so afraid of going crazy. Is there hope of being normal or will I have to learn to accept myself, crazy, sick and all?

Your autoimmune system is in a heightened state of response right now, it's trigger-happy. Once you start successfully avoiding your trigger foods and you start healing, this trigger-happiness should recede to a great extent. You just have to be really careful to cut out all your trigger foods and give yourself a chance to recover.

[ann72601]

Thank you so much for the positive feedback. I think I've been more upset about my mind going, than my body. I have heard, but don't know, that the liver and other organs can get better, but the brain can't. Does anyone know if this is true?

[Mrs.Doyle]

ann72601, on Jul 31 2009, 10:13 AM, said:

Thank you so much for the positive feedback. I think I've been more upset about my mind going, than my body. I have heard, but don't know, that the liver and other organs can get better, but the brain can't. Does anyone know if this is true?

I have read in many places (not related to celiac) that *they* used to think that the brain never regenerated or grew new cells... now they know this to be a false assumption and that in some cases the brain does regenerate and new cells form. How this relates to any possible damage from gluten, I'm unsure, but it is hopeful to know that it is at least possible for the brain to regenerate in some cases.

Before I figured out the gluten issue, I was taking large doses of Niacin and that really helped with my mental issues... the easiest way I could explain the sensation is it was like putting on lotion or chap stick on dry skin and lips... just very soothing. If you decide to try it, here is what I did: I started with 500mg, this caused a *niacin flush* totally normal reaction that will turn you bright red, maybe a bit itchy, and feeling of sunburn for about an hour (alcohol or hot bath/shower will make this worse)... I know it doesn't sound pleasant, but it oddly was. I stuck to 500 mg for a few days, then increased to 500 mg 2 times a day, and slowly worked my way up to 4 times a day.

There is a lot of talk about vitamin deficiency from malabsorption issues, perhaps having your Dr. run a panel to see what you are short of might help. Also, orthomolecular medicine seems to really have a lot to say about vitamin supplementation and mental health. You can do some research on the topic here: Journal of Orthomolecular Medicine

[ann72601]

Mrs.Doyle, on Aug 2 2009, 06:24 PM, said:

I have read in many places (not related to celiac) that *they* used to think that the brain never regenerated or grew new cells... now they know this to be a false assumption and that in some cases the brain does regenerate and new cells form. How this relates to any possible damage from gluten, I'm unsure, but it is hopeful to know that it is at least possible for the brain to regenerate in some cases.

Before I figured out the gluten issue, I was taking large doses of Niacin and that really helped with my mental issues... the easiest way I could explain the sensation is it was like putting on lotion or chap stick on dry skin and lips... just very soothing. If you decide to try it, here is what I did: I started with 500mg, this caused a *niacin flush* totally normal reaction that will turn you bright red, maybe a bit itchy, and feeling of sunburn for about an hour (alcohol or hot bath/shower will make this worse)... I know it doesn't sound pleasant, but it oddly was. I stuck to 500 mg for a few days, then increased to 500 mg 2 times a day, and slowly worked my way up to 4 times a day.

There is a lot of talk about vitamin deficiency from malabsorption issues, perhaps having your Dr. run a panel to see what you are short of might help. Also, orthomolecular medicine seems to really have a lot to say about vitamin supplementation and mental health. You can do some research on the topic here: Journal of Orthomolecular Medicine

I appreciate the information. It's comforting to know that there is hope. I will try the niacin and again, thank you for the info. Knowing what to expect is such a help. It's so hard to know what is normal and abnormal anymore. I just took Miralax, which is suppose to be gluten-free, but I'm having the worst reaction I've ever had to anything...ever.

[merry0709]

ann72601, on Jul 28 2009, 12:49 PM, said:

I've only known for a few weeks that I have celiac, which has explained a lot about my problems. I am very worried that my sanity is gone though. I don't know how many of you struggle with this, but it really scares me. Does celiac damage the brain for good? I used to just get the fog, but now when I eat or touch gluten or some other food I've become sensitive to, it affects my thinking, my sleeping and I just want to stay away from people until I feel good again. I'm so afraid of going crazy. Is there hope of being normal or will I have to learn to accept myself, crazy, sick and all?

I noticed that when I first went off the gluten, I was very agitated and felt like I was going to lose it all of the time, almost as if my body was going through withdrawal from the gluten, very cranky, and hungry. This slowly subsided as my body got used to the new diet. Still, the celiacs has left me with other food sensitivities, not quite sure what they all are, but I know my body does not like processed foods or things with a high percentage of sulphites ( red wine, vinegar, processed meats, cheese, yogurt, pickled things) Those really whacked me out too, as bad as the gluten. Try to eat a really clean diet. Fruits , veggies, and meats that are fresh not processed. Just go to a market with gluten-free and fresh stuff and avoid anything that comes in a box or with additives.
This has really helped me. therre are so many things you might be reacting to, but often the adrenal gland sends out adrenaline because of histamine reactions, that is making you fritzy. Eat really clean while you are detoxing from the gluten. Sorry to say, you will have to remain dilligent with this. If you slip up or go off, your mind will go off. It is a new lifestyle, but one you will become very used to . I don`t even buy or miss processed foods, pastries, etc. any more, and don`t even buy the expensive substitutes all that much. I just eat a whole lot healthier and I don`t miss the gluten a bit. Be patient. Your mind will clear.

I eat a ton of stir fries, rice products (great pasta) and do the bulk of food preparing. Cook everything from scratch, no processed food period. When with my family, I offer to cook, that way it is gluten-free and just don`t bring it up. I`m a heck of a gluten-free cook and everyone loves it. So when with me, they get gluten-free too and don`t even know it.

[Korwyn]

ann72601, on Jul 28 2009, 12:49 PM, said:

I've only known for a few weeks that I have celiac, which has explained a lot about my problems. I am very worried that my sanity is gone though. I don't know how many of you struggle with this, but it really scares me. Does celiac damage the brain for good? I used to just get the fog, but now when I eat or touch gluten or some other food I've become sensitive to, it affects my thinking, my sleeping and I just want to stay away from people until I feel good again. I'm so afraid of going crazy. Is there hope of being normal or will I have to learn to accept myself, crazy, sick and all?

Yes it does. It can take a lot of time though. Much of my presentation is neurological, CNS, and psychological as well. Anxiety, panic attacks, extreme irritability, peripheral neuropathy, insomnia, depression, brain fog that interferes with my reasoning and analytical ability. However one thing I'm learning is that a number of people who present symptoms this way are also reacting to other things as well. For me a soy intolerance developed which triggers some of the same symptoms as gluten, but even severely.

One of the big problems I have is that when I get glutened or soyed the depression hits and anxiety, and I'm convinced that it is hopeless, I'm losing my mind, and why bother. It's almost like someone who has severe bi-polar who goes off their medication then thinks they don't need them (I have a relative who does this).

There is some research that may show that the neurological and psychological presentations of celiac disease may actually be even more prevalent than the GI issues. Check out the DVD by Dr. Thomas O'Bryan Unlocking the Mystery of Wheat and Gluten Intolerance. This put me onto a whole new track of research after I watched this and read some of the research articles myself.

But back to your question - IT DOES GET BETTER. But it does take time. Even at 100% gluten-free you will have up and downs days/weeks. But the up times become more frequent and longer, and the bad days fewer. Hang in there!

[Nadia2009]

ann72601, on Jul 28 2009, 11:49 AM, said:

I've only known for a few weeks that I have celiac, which has explained a lot about my problems. I am very worried that my sanity is gone though. I don't know how many of you struggle with this, but it really scares me. Does celiac damage the brain for good? I used to just get the fog, but now when I eat or touch gluten or some other food I've become sensitive to, it affects my thinking, my sleeping and I just want to stay away from people until I feel good again. I'm so afraid of going crazy. Is there hope of being normal or will I have to learn to accept myself, crazy, sick and all?

I deal with some craziness too and I wonder if I am not suffering of a mild depression specially with less daylight. In past winters, I used to go to carbs for comfort which was probably making my symptoms worst. I remember calling in sick on some winter days and feeling guilty but not well at the same time.
Now, I can say for sure that I have some brain issues. I was a quick thinker and I smart cookie but not so much. I deal with brain fog, lack of concentration and forgetfulness. I have seen a doctor 3 years ago and complained to him I was having some ADD symptoms, he ruled out ADD because of the way I described my childhood with excellent focus and skills which I was as a child. In the latest years, I struggled with these symptoms and it made me less confident in myself. Occasionally, I also had some slight numbness around my lips and it was scary as I have had a facial paralysis in the past. Anyway, I had nowhere near my current symptoms there even with that bad condition. I actually took university exams while having my facial paralysis at the time. I have no doubt that gluten really changed my thinking and behaviour.
Now since I am off the gluten, I wonder if I am not having some other weird symptoms like more phobias and paranoia. Maybe I should take fish oils? It is difficult for me to go through this as I don't have anyone to support me with it. I don't have close family members here and my friends don't really understand what is gluten intolerance they think I am a health nut.

[joey1011]

My main problem with undiagnosed celiac disease was that I felt in a fog or spaced out nearly all the time starting when I was 23. I went to lots of doctors with that being my complaint and they never discovered anything, and didn't even look for celiac or any gastrointestinal disorders. I was finally diagnosed with celiac disease when I was 32. I spent 23 to 26 feeling spaced out 24/7. When I was 26 and 27, I discovered that certain foods made it worse and began to eliminate them. Wheat and gluten were not among them however. Onions and garlic were the worst for me. Cooked onions would make me spaced out for around 24 hours. Raw onions would last for around 3 days with the first day feeling like I was on the moon. After cutting back on those foods, I felt much clearer but never completely, and at times I would have unexplained cloudiness. During that time I started and completed law school and passed the bar exam. Only one year ago, did a doctor even think to test me for celiac, and when she did, my antibodies were off the charts, beyond the scale of the tests. So I cut out gluten and its been a year. My head is clear all the time unless I don't sleep enough, which is normal. After a few months, cooked onions and garlic didn't really bother me at all. I still haven't tested raw onions out of fear, but I don't think they would bother me now either. I accidentally ate some gluten in London last summer, and it gave me flu-like symptoms, nothing of the mental symptoms I had pre-diagnosis when I ate gluten with every meal.

If I had to guess, I would say that gluten destroyed my ability to digest anything properly. I think some foods, onions in particular, were passing into my bloodstream nearly undigested and causing my symptoms.

Long story short, hang in there. I had nearly 10 years of mental symptoms, and am pretty much fine now after sticking to the diet. Panic only makes the symptoms worse. Relax, know you're on the right track, and tell yourself that it will soon pass, and it probably will.

[CarbQueen]

ann72601, on 28 July 2009 - 11:49 AM, said:

I've only known for a few weeks that I have celiac, which has explained a lot about my problems. I am very worried that my sanity is gone though. I don't know how many of you struggle with this, but it really scares me. Does celiac damage the brain for good? I used to just get the fog, but now when I eat or touch gluten or some other food I've become sensitive to, it affects my thinking, my sleeping and I just want to stay away from people until I feel good again. I'm so afraid of going crazy. Is there hope of being normal or will I have to learn to accept myself, crazy, sick and all?

I've had gluten intolerance all of my life. Whenever I started consuming too much carbs I would get the crazies/ADHD. The digestive tract converts it into an opiate/morphine type substance. This worsened as I go older.

2009 was milestone for me because I decided to kick the carb addiction. I wondered if I should check myself into the psych ward. Besides who goes ballistic when they can't have a piece of bread.

It took about 3 months to break the habit. I've quit smoking, and drugs with no problem. Never dreamed I would go through horendous w/d from a baguette.

Hang in there. 2010 is looking promising for me. For the first time in my life I feel normal.

[mysecretcurse]

I spent my teen years completely drugged up on anti depressants and anti psychotics because the doctors simply said I had "depression". Then I got away from all that stuff and got on the natural path,but still spent years in the chains of depression and horrible anxiety, always needing something like st johns wort or other "remedies" just to feel sort of normal, even tho they didn't make me normal either. Within one month gluten free, it was like these dark clouds that had always been there vanished. Literally vanished. Just like that: normal mind. I remember thinking... my GOD... is THIS how NORMAL people have been feeling this whole time?!!! I hope that gives you some hope.

But just to be clear, the tiniest injestion of any food my body isnt comfortable with and I'm right back to the pits of depression and craziness... in fact one of the first clues to my being glutened is suicidal feelings or the desire to cut or burn myself... I DONT want to do those things now so when I start getting strange urges or thoughts that don't seem like me, I can just say oh waiiiiit. Gluten! It's still hard because even though I know its gluten or whatever else (Im intolerant to a lot of things) that did it, I still FEEL that way. But it helps knowing that it will soon pass (takes about a week for my mental and digestive system issues to start getting better after an accident, for me).

[Ahorsesoul]

ann72601, on 28 July 2009 - 11:49 AM, said:

I've only known for a few weeks that I have celiac, I used to just get the fog, but now when I eat or touch gluten or some other food I've become sensitive to, it affects my thinking, my sleeping and I just want to stay away from people until I feel good again.

Examine why you are eating or handling foods you know you should not. You will feel horrible any time you eat/get contaminated with these foods. Stay away from the foods that bother you, enjoy your friends. You can do this.

[tennyl]

Ahorsesoul, on 09 January 2010 - 12:31 PM, said:

Examine why you are eating or handling foods you know you should not. You will feel horrible any time you eat/get contaminated with these foods. Stay away from the foods that bother you, enjoy your friends. You can do this.

I was in such a fog before going gluten free that I was pulled over by the police while driving I was running to the bank for work and drove right past work ... I didn't even realize... they said I was driving recklessely.. They asked why I was slurring I told them I was at work and running an errand. They gave me a subriority test ..which I passed . But I now know that Iwasnot only a danger to myself but to others . since going gluten free I am not depressed anxious and not living in a fog anymore!!