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Ennis_TX

Mental Trauma

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I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it.

One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect.

Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others.

In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets.

But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds. 

I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.

 

 

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Bravo for being strong enough to bring this topic up.  Depression, anxiety, and other mental or neurological issues are common in celiacs and those with NCGI.  Science is finally catching up to what many of us have already known to be true.  

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/

I have suffered from anxiety and still have some neuropathies.  At first I blamed menopause (that alone can make you crazy), but my symptoms tend kick in after a Gluten exposure and improve as I heal.  

You are not crazy!  Gluten can cause so many problems.  What other disease requires that the patient be in charge of "medicating" and caring for themselves?  Most of us after a diagnosis get a "Well, just avoid gluten.  Lucky you that there are so many restaurants that offer a gluten free menu!", speech from our doctors.  We never get time off from thinking about food, our next meal and will it be safe?  Our relationship with food changes dramatically and it can be exhausting.  

We do need more resources and support from medical, but for now, at least this forum is helpful!  

 

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Ennis_TX - Your post rings true with me. I was only diagnosed in May, but from May through.... basically two weeks ago, I was out of my mind. I completely understand when you describe it. I had zero self control. I retired from the Army after 21 years and had always had pride in myself that I could handle just about anything thrown my way. That was until this disease. I found myself sobbing uncontrollably, not getting out of bed till late afternoon, hiding in the bedroom from my own family, missing work, not being able to make simple decisions, I was getting at most, 3 hours of sleep a night. I would sit up in bed and literally scream out loud in frustration. I asked my wife several times to bring me to the VA Psyc. ward (which she talked me out of). I had no pleasure or happiness in my life even though I have a very supportive wife of 32 years, and two ideal kids with three grandkids. I had NO reason to feel the way I did, but yet, there I was. And like you mentioned, I too had a "Bucket List" per say.  To top it all off, I had this horrible muscle pain in my legs and arms. Joints a little, but the muscles were in constant pain. One month ago they diagnosed me with Fibromyalgia. At this point I am not willing to accept that diagnosis.  They started me on Gabapentin and these last two weeks I have actually started feeling less pain in the muscles and my mind is bouncing back too. Although the muscle pain came back a bit Sunday, and has me a little concerned. I keep telling myself it has only been 4 months gluten-free, and that it will take time. But I have to admit, I do not have much patience and I want to start feeling better now.  

I ran into an old Army friend a few weeks back, and he had been diagnosed in 2009. He told me everything he went through and other than diarrhea and an inflamed throat, his biggest symptoms were depression/anxiety and brain fog. He said his wife was so worried she sold all of his guns. He would sometimes find himself in the backyard just curled up in the grass wondering when it would end for him. Absolute craziness. When I shared the issues I was having he could relate 100%. He said he hasn't met anyone else that went through the same things as him and it was therapeutic for us both. He told me of some places that were Celiac friendly, and we agreed to let each other know when something new hits the market, or any other good news via text.

Back in May I searched for a celiac support group near by, but no luck. I stumbled on this forum and it has helped me tremendously. Stories like yours helped to insure me I was not losing my mind. Which, I might add, I told many VA & civilian Psychiatrists that indeed I was.

Thanks for your post, and I hope nothing but the best for you, here forward.

Dharwood

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Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts. 

My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.


 It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety.

When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly.

It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful. 

I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor. 

I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first.

https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf

A lot of people with celiac disease have vitamin deficiencies. 

Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
1 activated vitamin b12 daily
1 activated vitamin b6 every once in a while.

1 regular vitamin b multivitamin
1 magnesium pill every day.
St Johns Wort daily.
1 zinc vitamin daily
I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
I think each of these helps lower my anxiety level. 

I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice.

http://www.livestrong.com/article/454179-what-is-methyl-b12/

I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided. 

I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain. 

My current diet is working so I am going to stick with it for now.

I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover. 

Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
 

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9 hours ago, ch88 said:

Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts. 

My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.


 It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety.

When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly.

It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful. 

I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor. 

I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first.

https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf

A lot of people with celiac disease have vitamin deficiencies. 

Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
1 activated vitamin b12 daily
1 activated vitamin b6 every once in a while.

1 regular vitamin b multivitamin
1 magnesium pill every day.
St Johns Wort daily.
1 zinc vitamin daily
I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
I think each of these helps lower my anxiety level. 

I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice.

http://www.livestrong.com/article/454179-what-is-methyl-b12/

I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided. 

I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain. 

My current diet is working so I am going to stick with it for now.

I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover. 

Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
 

The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy.

As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back.

This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.

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