Emotional Scars From Celiac

[sandsurfgirl]

I have emotional scars from the days when I was so sick. I've been gluten free almost 2 years. For about a year or more before diagnosis I had trouble breathing nearly every day. I had to focus on breathing. All the medications weren't fixing it. Of course that also led to anxiety and a vicious cycle.

For about 6 years before diagnosis I had constant sinus infections, bronchitis and respiratory problems. I was on antibiotics every couple of months.

Now when I get stressed I will feel like I can't breathe from anxiety and it takes me right back to those days.

I'm also facing Cushings disease and endocrine problems now, and because of being so sick for so long with celiac I just feel raw and unable to cope.

If you've been gluten free for awhile, do you still have emotional issues over the days before diagnosis? If you got over them, how did you do it? How long was it before you really felt emotionally healed from the damage of celiac?

[Di2011]

I have pretty much been hiding from the rest of the world for years. I resigned from a very well paid career. Haven't been in touch with even close friends, most of my extended family etc. I use to put it down to single parenthood, too tired (always!) etc and got on with trying to raise a happy healthy son on minimal energy and minimal funds.

Yesterday I got so mad with myself. I really want to get back to making a decent wage ((never want to wash dishes again;)) now that I am on the mend and feel good. I knew a lot of people who I'd worked with for years who would be more than glad to give me a glowing reference. But three years later I wasn't even in contact with the close friends I'd made through work & work contacts.

So last night I got on face.book for the first time in a long long time. I sent a few messages, upload a couple of recent photos etc and reconnected with about five of my favourites. It was so lovely. I can't afford to socialise/babysitters/phone bills etc so it was nice to have a means to chat. Great to catch up with people that I really do care about even if I haven't been much of a friend for so long..

I really miss swimming. My scars are only in the early stages of healing and I dress from head to wrist to toe. I'm terrified of the salts used in pools in our area. Today I spoke to a manager who is going to let me see the labeling of the salts used. Just that conversation was reassuring and another step in the right direction for me. ((But who thought "label reading" would be pool side:*#$&#*$ ))

I've started turning on the radio and playing my CDs (((how old and out of touch am I))) again !

What do you like to do or miss doing? Surf? Walk on the beach ((I wish I lived on the coast)) ? Going to the library? Music? Coffee with friends?

Have you been to the doc's to make sure there aren't any other issues/complications that need investigating?

[sandsurfgirl]

What do you like to do or miss doing? Surf? Walk on the beach ((I wish I lived on the coast)) ? Going to the library? Music? Coffee with friends?

Have you been to the doc's to make sure there aren't any other issues/complications that need investigating?

I'm in the process of being diagnosed with Cushings now. They found a tumor on my adrenal gland and my cortisol is high. So after being really sick with celiac and then getting better and getting my life back, I'm once again having lots of symptoms and in bed a lot.

I miss doing everything pretty much. I do live on the coast but I can't walk on the beach right now. Not strong enough.

I feel like celiac took so much out of me. All the trouble getting diagnosed. All the years of knowing something was wrong and not knowing what it was. All the doctors who shrugged their shoulders in confusion. Being sick for 6 months after I went gluten free because there was so much damage.

It's like I was in a war and now I just have nothing left. I don't have anything left to fight Cushings now. Celiac took it all out of me.

[Di2011]

It's like I was in a war and now I just have nothing left. I don't have anything left to fight Cushings now. Celiac took it all out of me.

I know a lot people who suffer from post-traumatic stress (PTSD). One of them I see at one my local shopping districts and he is always so incredibly intoxicated (to others they don't appear drunk & disorderly.. a strange occurence in intoxicated PTS sufferers in my opinion ((but note: I am not a professional in the medical/psych area)). He doesn't even recognise me .. I believe due to the PTS rather than the alcohol. He is about my age (38) and I find it distressingly and incredibly sad.

My decades of miseries I attribute to gluten and my alcohol intake has been rather excessive - never drink enough to where I wobble or slur or even near ot it etc but it still bothers me(functional alcoholic perhaps?). No blame to lay but my family and military background contributed to both my undiagnosed-medical and my alcohol issues.

I've described myself many times as feeling "battered" and with a propensity to addiction (luckily I never felt the need for illicit or prescription drugs)

Quote:

PTSD can occur at any age. It can follow a natural disaster such as a flood or fire, or events such as:

[sandsurfgirl]

I do think I have PTSD. I've been saying that. I don't have any addictions. I hate being sick so much, I can't stand to put things in my body that would make me hung over. I do enjoy my wine here and there but that's about it.

I've had a bunch of other stuff this past few years. My best friend went off the deep end and started seeing a minor who was a student of hers. The police were called and for some reason nothing happened to her. So I lost her as a friend. She cut everyone out of her life and literally changed overnight. Then my next best friend dumped me when I got diagnosed celiac. She couldn't deal with me being so sick and she turned on me. Another close friend of mine dumped me about a year ago because she was dating an emotionally abusive man and I tried to be supportive and encourage her to get out of the relationship. It made her mad so she quit being my friend.

On top of that my marriage almost ended. Fortunately we got a miracle answer to prayer and it turned around completely, but it was a hellish time for quite awhile.

I was hospitalized beginning of October for 10 days due to my endocrine problems. It was taking forever for hormone labs to come back so they decided to try things because my kidneys weren't functioning properly and it was dangerous. They tried one medicine that made me so sick I thought I was dying. For 2 days all I could do was lay there and try to breathe. My head was spinning every time I tried to get up. I didn't eat for 2 days. I know what it was like when my grandmother lay dying in the hospital. I felt that and it has scarred me. I am still terrified of going back to the hospital and I will have to in order to get surgery.

Add in celiac and now Cushings. And then on Wednesday another close friend died suddenly and unexpectedly of a heart attack. I was too sick to attend the funeral. Just too much.

How do you get treated for PTSD? I can't take meds for it. I've tried a few recently and all of them gave me horrific reactions.

[CR5442]

Sandsurfgirl, I totally identify with your breathing issues. I had what the docs said was asthma though it wasn't true asthma. I would wake in the night with a neuropathic shake because my lungs weren't cleaning properly and there was inadequate Co2 exchange with o2. Really scarey at times as I had it with both of my pregnancies too. Even now, with no coffee or gluten I sometimes get it... say if I have a bad tummy.

I also noticed you talked about your marriage nearly failing and that your prayers were miraculously answered. That gives me such hope you have no idea! My husband left us a year and five months ago and we are further from each other than ever. I still live in hope that he will get over his own issues and come back to us. My recovery with two tiny children has been in a word completely exhausting. We have spent more time at the doctors and hospital than anywhere else! However, there is light at the end of the tunnel. I'm really sorry to hear about the Cushings and Thyroid issues. I hope that you manage to find a treatment protocol that fits well with you. You sound really sad about everything. Just know that your message touched me and probably many others here and that you are in my thoughts! God bless you!

[sandsurfgirl]

Sandsurfgirl, I totally identify with your breathing issues. I had what the docs said was asthma though it wasn't true asthma. I would wake in the night with a neuropathic shake because my lungs weren't cleaning properly and there was inadequate Co2 exchange with o2. Really scarey at times as I had it with both of my pregnancies too. Even now, with no coffee or gluten I sometimes get it... say if I have a bad tummy.

I also noticed you talked about your marriage nearly failing and that your prayers were miraculously answered. That gives me such hope you have no idea! My husband left us a year and five months ago and we are further from each other than ever. I still live in hope that he will get over his own issues and come back to us. My recovery with two tiny children has been in a word completely exhausting. We have spent more time at the doctors and hospital than anywhere else! However, there is light at the end of the tunnel. I'm really sorry to hear about the Cushings and Thyroid issues. I hope that you manage to find a treatment protocol that fits well with you. You sound really sad about everything. Just know that your message touched me and probably many others here and that you are in my thoughts! God bless you!

Oh Caroline I am so sorry. Here I am complaining and you're doing this as a single mom! I tell you we did have a miracle. I committed to praying twice a day no matter what over all my circumstances and very much over my marriage. I thought there was no hope. We were living in separate rooms for a very long time, like nearly 2 years. We were married but lived like we were separated.

Then one day it just turned around. My husband's heart just softened to me and I realized I still loved him afterall. It was literally overnight and it surprised both of us.

I have been praying so much over my health and maybe this thread is an answer to prayer. I really do think I have PTSD. I have just been through too much and it's overwhelming. Just 2 months ago I was an active homeschool mom, taking my kids on field trips and to the beach, etc. Involved in all sorts of things. Now I'm scared to leave my house. I literally fight anxiety attacks just to run up the street to go for a short errand. I barely made it through a grocery store trip. I have my husband do the shopping.

My kidneys weren't functioning properly due to my endocrine issues. I was excreting all my salt and fluids. I was literally peeing to death, just losing liters and liters more fluid than I was taking in. I went to the ER 4 times and they weren't sure what was wrong with me. I got sicker and sicker, and was having these attacks where I would get short of breath, collapse from weakness, and be dizzy, etc. I got pressure in my head and episodes of blurry vision where I couldn't see. My new doctor was an ass and he just told me I was having anxiety and treated me like a hypochondriac. I changed doctors and the new one had me admitted to the hospital. My blood pressure dropped to 66/48 at one point. When I went to the hospital I was walking toward the nurse to get in the wheelchair and my legs buckled under me. I fell and the nurse had to catch me. My sodium and potassium were at deadly low levels.

My iron is low. My Vitamin D is low. My thyroid is fluctuating. I'm on supplements and medicines to combat those things, but it's just so hard right now. I'm on medication to replace the missing hormones that were causing the kidneys to malfunction, but I still am being tested for Cushings which I likely have due to an adrenal tumor.

I am spent. I am traumatized. I can't deal with anymore stuff. When I was diagnosed celiac I was so sick. It took 6 months to recover and for the first couple of months I spent whole weekends in bed. And now this. When will I be normal??????

[Di2011]

How do you get treated for PTSD? I can't take meds for it. I've tried a few recently and all of them gave me horrific reactions.

I AM NOT A PROFESSIONAL OR TRAINED IN MEDICINE/PSYCH.

I think you need to talk about it. I'm not a fan of psychologists ((that is a long long story and I really believe there are probably very good ones in the community)) but if you know one or find a good one I seriously recommend you talk, talk some more, talk a bit more and then listen to what they and others have to say.

Talking is a really really hard thing for some of us. There is an additional problem with GI problems. I have NEVER EVER told anyone about my gastro issues. I thought I was normal (whats normal?), I thought I should take better care of myself (what I call the "guilt/blame self" - drink less alcohol, drink more water, eat more fruit/veg, don't go to McDonalds etc etc etc etc), I thought it was the alcohol (am I really an alcoholic and surely a couple of glasses of wine a few times a weeks will cause some gastro/skin etc symptoms so give it up or put up with it), I thought it was stress/emotional (I'm a natural ((what I call)) "absorber" - care and sometimes over-care/distress for others more than self). My problems aren't nearly as bad as others so I have no excuse for feeling like crap.

I'm a single mum and I find a hug from my 9 y/o son can do me the world of good. He is amazingly understanding. Checks labels for me:)

I am really honest with him about how I am. Tonight (I'm in Australia) I am itchy as crazy (- used a shampoo that aggravated the DH) and I told him straight out. No homework tonight just chill, I need a hug, just eat your veg. He knows now that when my DH etc is flaring then it is easier to give Mum a hug and eat his veg. But it has taken some "training".

Tell your hubby (husband) how frustrating it is to feel so sick helpless and how incredibly mind-blowingly mad it makes you feel to be so "complaining" "whinging" "sick" etc. If he knows that it annoys the ^(%(*(*$ out of you to be a sickly whinger then he will know that he is in your thoughts despite the seeming selfishness.

[Di2011]

If I were you I would ask your hubby about what / how he came to stay with you. It will open a line of communication ("talking") that you might not have done otherwise.

Why did he stay? What made him, continue to, stick with you? ((It could be so good for your self-worth)) Did your church/spiritual advisors help him out? ((someone there might have the real internal-psych insight to help you also)) You'll learn something about him that you need to hear out loud.

I'm not "religous" etc but I believe spirituality is really important for a persons well-being. For me a walk on the beach and a swim at a beautiful beach is as enlightening and healthy as church and preacher/priest. I believe, for me alone, that health and well-being is in the water. Just me and I don't do crazy preaching stuff. Just being honest to you about what is in my internal well-being knowledge bank.

When I go to the coast I feel like my whole world could be well.

[Di2011]

I also don't think you need or should add psych "disorders" to your list of problems. If you identify with PTSD then let it open you to a world without it. Identify what and how you are feeling about the world (reality) and then seek out what you really want in it(your future.. all yours the way you want it).

If you are a Christian then you know that Jesus does not want suffering. Jesus did not live and die miserably so that you would live miserably. Think about it. Do what you need to be well and let your hubby help you along the way.

[ravenwoodglass]

I have PTSD from all the years of illness and being unable to leave the house becuase of my celiac symptoms combined with other life experiences. It actually got worse after diagnosis because I don't like taking pills and no longer needed the handful that I would have to take prediagnosis just to go to the store. But the fear of getting sick in public didn't go away. Nor has my extreme distrust of doctors. I have been fighting it with therapy and an antianxiety drug with some success. It has helped enough for me to be able to at least do volunteer work but my body still does not have the stamina it used to and I have a very hard time with the idea of eating and then leaving the house. That makes trying to do a paying job very difficult. I also lost all freinds over the years and just can't bring myself to accept any evening invitations that I might get.

I don't think doctors for the most part understand how severely this disease impacts folks that went for years being told there was nothing wrong with us and that we just wanted to be sick or it was just 'nerves'. The emotional scars can be worse than the physical ones we have to deal with. Finding a good therapist can be hard but it has been at least a bit helpful for me and the minimal amount of medication that I take does at least keep me from having a panic attack but I doubt I will ever again lead what most would consider a 'normal' life.

While I wouldn't wish this disease and it's aftereffects on anyone it is nice to know I am not alone and others also struggle with same difficulties.

[Di2011]

Against all my anti social will I REALLY WOULD love to you over for soup.

[Di2011]

Australia is probably a bit too far though?

[sandsurfgirl]

I have PTSD from all the years of illness and being unable to leave the house becuase of my celiac symptoms combined with other life experiences. It actually got worse after diagnosis because I don't like taking pills and no longer needed the handful that I would have to take prediagnosis just to go to the store. But the fear of getting sick in public didn't go away. Nor has my extreme distrust of doctors. I have been fighting it with therapy and an antianxiety drug with some success. It has helped enough for me to be able to at least do volunteer work but my body still does not have the stamina it used to and I have a very hard time with the idea of eating and then leaving the house. That makes trying to do a paying job very difficult. I also lost all freinds over the years and just can't bring myself to accept any evening invitations that I might get.

I don't think doctors for the most part understand how severely this disease impacts folks that went for years being told there was nothing wrong with us and that we just wanted to be sick or it was just 'nerves'. The emotional scars can be worse than the physical ones we have to deal with. Finding a good therapist can be hard but it has been at least a bit helpful for me and the minimal amount of medication that I take does at least keep me from having a panic attack but I doubt I will ever again lead what most would consider a 'normal' life.

While I wouldn't wish this disease and it's aftereffects on anyone it is nice to know I am not alone and others also struggle with same difficulties.

I had no idea you suffered with this. Being so sick and having doctors look at you like you're crazy does take its toll on your mental state. I hope that you can find a way to get out and do things again.

Some friends don't understand why you can't do things with them. Its' hard to explain too. I had colitis around Memorial Day. Ended up in the hospital for it. Before I knew what was happening to me I thought I had been glutened. I was getting ready to drive an hour to my sister's grad party from nursing school when I was hit with explosive D and I had to stay home.

[sandsurfgirl]

I was realizing today that I need to have forgiveness for this. I have to forgive the doctors who misdiagnosed me for years. I have to forgive the GI docs who actually talked me out of testing for celiac 8 years ago and told me there was no was it was celiac. I also have to forgive the friend who dumped me when I got so sick.

I realized how much anger I'm carrying around and holding onto and it's not healthy.

[ravenwoodglass]

I had no idea you suffered with this. Being so sick and having doctors look at you like you're crazy does take its toll on your mental state. I hope that you can find a way to get out and do things again.

I do get out now for the last 2 years or so. I just do stuff during the early day. I did have to get to the point where I had hardly left my house in years before I got the strength to fight though. As they say when life gives you lemons you make lemonade. Sometimes it just takes some time to find the squeezer.

In your other post you refer to needing to forgive the doctors and others. Sometimes I think we also have to forgive ourselves, especially if we are parents. Since celiac so impacts what we can do prediagnosis a lot of guilt can build up about missed plays, ballgames etc for those of us who it took a long time to diagnose. All we can do is go forward as much as we can. As they say we can't change the past but we can shape the future. Sometimes that shape may be different than we wanted it to be but that's okay.

[gabby]

I just wanted to tell you that I'm touched by your situation, and feel terrible for everything you are going through. I wish there was something I could say or do that would take the awfulness away. I do understand where you are coming from and understand the fear, loneliness and absolute exhaustion that can overpower the body and soul.

I highly recommend getting some sort of counseling from someone who specializes in dealing with people who have chronic illnesses. Even group therapy could work wonders. Chronic illnesses don't go away and thus require a new lifestyle that can accommodate the unpredictable nature of the problems. You don't cure chronic illnesses, you learn to manage them successfully.

If counseling isn't appealing to you, then hit the bookstores and see if you can find any self-help material for dealing with chronic illnesses. Maybe put a shout-out on this board to see if anyone can recommend anything.

I can recommend anything by Harriet Lerner...her books got me through an extreme rough patch a few years ago. Open Original Shared Link

I hope that helps. And I hope everything turns out the absolute best way that it can for you.

[TTNOGluten]

I have read all these posts and can sympathize with nearly every story. Up until recently I was a single father with split custody 50/50, doing well I thought, met a beautiful person and she I and recently got married. She is eveything I could dream of in a wife and suuport person. Recently after our wedding things began spiral downhill with my health, with feeling sick everyday, nausea, abdominal pain etc. and our life that we had built started to fall apart piece by piece. Gone are the times of going out to dinner, spending weekends visiting with friends and drinking an occaional beer and just having fun. Our time now is consumed with shopping, preparing meals and trying to work around this lifestyle. My kids are fantastic but when they are with us are confused by all of the diet changes, and are lost with not having their dad take them to do the things that I used to. Meanwhile I continue to feel lousy, with adbominal pain daily despite being gluten free for 2 1/2 months. I have anxiety attacks severely when I am think I going to die and think there is something else wrong with me that is slowly killing me. My wife(god bless her) stays by me and tries to comfort me, but here I am a grown man who can barely get through a day now. I cry nearly everyday, I hide myself from family and friends so they don't see me like this. I feel like my entire life has been taken from me and that I am a victim who is hopeless. What a sucky way to live I think, and frequently I get and mad and then sad and then cry some more.

I pray I will get my life back on track ,as before all of this I was on top of the world, now I feel like I am under it. I know I am depressed, with tremendous anxiety, even being alone frightens the crap out of me, and I was never like that before. I am reluctant to take any meds for fear that I will just have other issues to contend with then. Who knows, day by day I guess.

I feel for everyone typing on this blog, we each come from different places and stories yet they all lead us here. Maybe this is a place to find strength and hope, I am sure banking on it. Best wishes to all

[CR5442]

This is such a great thread, from the perspective of accepting that we have an immensely powerful spiritual side to us as human beings. What a great gift we have in realising that we are not alone in these times of strife, healing, pain and emotional turmoil. Those of us who have partners and spouses who have stuck by us in our sickness are blessed, though I can also see how being so continually poorly and in need of support makes us worry that those around us will be spent at some point in the future. Like you sandsurfgirl, when I realised that something was really wrong with my health, I went through an awful down spiral. I know for sure that it has had a detrimental affect on my husband and my children. When my daughter who is three and a half says 'oh Mummy does your tummy hurt again' it just makes me feel awful, as my general demeanour when I feel ill is ratty beyond belief! It feels like so many years have been lost! I pray also daily that we will all find some sort of bearable equilibrium, healing and light. It is so nice to find someone else on here who does turn to God, and also that you have had such a great result in your relationship with your husband from faith.

I do think though that you are going through an awful lot physically. I am forty and have so far been very lucky to avoid thyroid issues and other things related to autoimmune disorders. I have a little adrenal fatigue and some issues with my monthly cycles hormonally speaking, but nothing on a par with what you are dealing with by the sounds of it. Everyone has their own tolerance levels too. I think if someone said here I'll take the children for a week I would spend the entire time sleeping and then probably wonder how on earth I managed to look after them for so long! They are my life though. Totally little buttons of energy, beauty and a true gift from God.

I don't know much about Cushings or your kidney issues. If you find anything out, or find somethings that help let me know! I started herbal medicine as a degree just recently but sadly know nowhere near enough to give any advise on that score... only what i have suffered and treated my self for. The body is such a complex machine and I suppose all I can say is that treating the whole is better than fixing one issue with one drug then dealing with side effects etc etc. Have you thought of seeing an acupuncturist? Mine has dealt with a slight postpartum thyroid issue for me very successfully with no need for repeat treatment. She also diagnosed severe gluten intolerance and dealt with some of my adrenal fatigue. Just a thought. :-)

[Gemini]

I do think I have PTSD. I've been saying that. I don't have any addictions. I hate being sick so much, I can't stand to put things in my body that would make me hung over. I do enjoy my wine here and there but that's about it.

I've had a bunch of other stuff this past few years. My best friend went off the deep end and started seeing a minor who was a student of hers. The police were called and for some reason nothing happened to her. So I lost her as a friend. She cut everyone out of her life and literally changed overnight. Then my next best friend dumped me when I got diagnosed celiac. She couldn't deal with me being so sick and she turned on me. Another close friend of mine dumped me about a year ago because she was dating an emotionally abusive man and I tried to be supportive and encourage her to get out of the relationship. It made her mad so she quit being my friend.

On top of that my marriage almost ended. Fortunately we got a miracle answer to prayer and it turned around completely, but it was a hellish time for quite awhile.

I was hospitalized beginning of October for 10 days due to my endocrine problems. It was taking forever for hormone labs to come back so they decided to try things because my kidneys weren't functioning properly and it was dangerous. They tried one medicine that made me so sick I thought I was dying. For 2 days all I could do was lay there and try to breathe. My head was spinning every time I tried to get up. I didn't eat for 2 days. I know what it was like when my grandmother lay dying in the hospital. I felt that and it has scarred me. I am still terrified of going back to the hospital and I will have to in order to get surgery.

Add in celiac and now Cushings. And then on Wednesday another close friend died suddenly and unexpectedly of a heart attack. I was too sick to attend the funeral. Just too much.

How do you get treated for PTSD? I can't take meds for it. I've tried a few recently and all of them gave me horrific reactions.

I hope you don't take this the wrong way but I am not a big supporter of all these emotional disorders people fall into.

They are labels when all that is really happening is you are still in recovery from Celiac and are dealing with additional issues caused by Celiac. I know where you are because I have 4 autoimmune diseases from undiagnosed Celiac and have bad days also but in spite of it all, I am a fighter and never give in. I always take the view that things will be better and no, this disease will not get the better of me. I do not allow myself to fall into the thought process that I have additional emotional issues that will not allow me to recover.

One thing that stood out and you should know is that Cushings and endocrine problems will create depression and anxiety in a person and make you feel like you want to end it all. I have had those feelings and when they come, I question whether my thyroid is getting the correct dose of supplement. Being off on these can create all the feelings you are suffering from. It's frustrating that it can take so long to recover from Celiac and all the associated problems but recovery can happen so never forget that. I had the expectation I would recover and never let any other thought creep in to tell me I couldn't. But be aware that having Cushings will mess up your thought process so once they get that under control, things should be much, much better. The reason you are having so much trouble dealing with all these life hits is because your endocrine system is malfunctioning...believe me, that can really mess you up. Been there, done that.

If you can see a therapist to talk about stuff, that's great but don't ever let them medicate you. Just venting to a professional can be so healing. It will take a lot of time so relax and take whatever time to heal you need but keep in mind you will recover. Tell your brain and body there is no other option. I wish you all the best with the surgery. You will be fine and once the surgery is over and they supplement you with the correct amount of cortisol, life will get a whole lot better. Really..it will!

[sandsurfgirl]

I have read all these posts and can sympathize with nearly every story. Up until recently I was a single father with split custody 50/50, doing well I thought, met a beautiful person and she I and recently got married. She is eveything I could dream of in a wife and suuport person. Recently after our wedding things began spiral downhill with my health, with feeling sick everyday, nausea, abdominal pain etc. and our life that we had built started to fall apart piece by piece. Gone are the times of going out to dinner, spending weekends visiting with friends and drinking an occaional beer and just having fun. Our time now is consumed with shopping, preparing meals and trying to work around this lifestyle. My kids are fantastic but when they are with us are confused by all of the diet changes, and are lost with not having their dad take them to do the things that I used to. Meanwhile I continue to feel lousy, with adbominal pain daily despite being gluten free for 2 1/2 months. I have anxiety attacks severely when I am think I going to die and think there is something else wrong with me that is slowly killing me. My wife(god bless her) stays by me and tries to comfort me, but here I am a grown man who can barely get through a day now. I cry nearly everyday, I hide myself from family and friends so they don't see me like this. I feel like my entire life has been taken from me and that I am a victim who is hopeless. What a sucky way to live I think, and frequently I get and mad and then sad and then cry some more.

I pray I will get my life back on track ,as before all of this I was on top of the world, now I feel like I am under it. I know I am depressed, with tremendous anxiety, even being alone frightens the crap out of me, and I was never like that before. I am reluctant to take any meds for fear that I will just have other issues to contend with then. Who knows, day by day I guess.

I feel for everyone typing on this blog, we each come from different places and stories yet they all lead us here. Maybe this is a place to find strength and hope, I am sure banking on it. Best wishes to all

There is light at the end of the tunnel for you! It took me 6 months but I was actually feeling great after 6 months gluten free. I started dancing again. A zillion things were better with my health. The anxiety is gluten induced and you are going through withdrawals.

For me, unfortunately I had this other thing underlying that they didn't find. You will get better!!! Hang in there. Nurture yourself and let yourself heal.

[sandsurfgirl]

Gemini you are totally right and I get what you are saying about not taking on an emotional diagnosis. I have been reading this little book about how what we say affects our bodies and our health. They talk about studies of 3000 people over age 65 where their opinion of how good their health was predicted who would die in the next 4 years. People's assessments of whether they had good or poor health didn't necessarily line up with what showed up on exams and tests. The people who rated themselves in poor health, even if they looked pretty good on exams and labs, etc. were far more likely to die in the next 4 years than people who rated themselves good or excellent, even if they actually had health problems. That really impacted me.

I have realized this past couple of months how much illness I have claimed for myself by getting caught up being sick, thinking and talking about my symptoms all the time, worrying about other diseases I may or may not have due to celiac and going on a negative spiral of fear about my health. I've been doing an emotional and mental cleansing while I am stuck at home so much.

Gemini you know a lot about Cushings and you're right on that point too. The cortisol and wacky hormones cause depression and anxiety. Then my thyroid actually started functioning better (thank God!) but then my thyroid has been and the meds had to be lowered twice in the past 3 weeks. Too much thyroid medicine also causes anxiety and emotional stuff.

Caroline, today my little girl was playing with her doll house. She had the bed smack in the middle of the doll house living room. The mommy was all covered up and cozy in bed. She told me the mommy was sick. That made me so sad at first, but then I figured she is processing it. I asked her if the baby knew the mommy was going to get better and she said yes.

[ravenwoodglass]

today my little girl was playing with her doll house. She had the bed smack in the middle of the doll house living room. The mommy was all covered up and cozy in bed. She told me the mommy was sick. That made me so sad at first, but then I figured she is processing it. I asked her if the baby knew the mommy was going to get better and she said yes.

And you will too. I hope things get better for you soon.

[Gemini]

Gemini you are totally right and I get what you are saying about not taking on an emotional diagnosis. I have been reading this little book about how what we say affects our bodies and our health. They talk about studies of 3000 people over age 65 where their opinion of how good their health was predicted who would die in the next 4 years. People's assessments of whether they had good or poor health didn't necessarily line up with what showed up on exams and tests. The people who rated themselves in poor health, even if they looked pretty good on exams and labs, etc. were far more likely to die in the next 4 years than people who rated themselves good or excellent, even if they actually had health problems. That really impacted me.

I have realized this past couple of months how much illness I have claimed for myself by getting caught up being sick, thinking and talking about my symptoms all the time, worrying about other diseases I may or may not have due to celiac and going on a negative spiral of fear about my health. I've been doing an emotional and mental cleansing while I am stuck at home so much.

Gemini you know a lot about Cushings and you're right on that point too. The cortisol and wacky hormones cause depression and anxiety. Then my thyroid actually started functioning better (thank God!) but then my thyroid has been and the meds had to be lowered twice in the past 3 weeks. Too much thyroid medicine also causes anxiety and emotional stuff.

Caroline, today my little girl was playing with her doll house. She had the bed smack in the middle of the doll house living room. The mommy was all covered up and cozy in bed. She told me the mommy was sick. That made me so sad at first, but then I figured she is processing it. I asked her if the baby knew the mommy was going to get better and she said yes.

I like your attitude! Yes, we all have our bad days but so do many others without Celiac. I was pretty damn sick at diagnosis and actually thought I might not make it. Then I snapped out of that and would not let this disease get me. I had the expectation I would recover and I also kept the medical people at a distance so they wouldn't try and medicate me and convince me I was deathly ill. I am a firm believer that if you go to a doctor too much, it can be detrimental to your health.

Symptom treating is no way to make people better.

I have Hashi's thyroid disease and I know very well the depression and anxiety that can go along with that when the thyroid goes wonky. In fact, when I do feel that way, I question whether my dose is correct. But no way in hell will I ever take anti-depressants. It's such a slippery slope.

After my recovery I found a new PCP and she wanted to do all kinds of testing on me because it had been so long since I had gone to a doctor. I had no symptoms of anything and felt pretty good at the time. I asked her why she felt she needed to do all this when I was recovering really well and she said that because I was a Celiac, I was in more danger of becoming ill. Talk about a downer of an attitude. If someone isn't feeling well and having trouble with their recovery, test away but for those who are doing well, stop the gloom and doom stuff, will ya! I am not one of those people who go around thinking I am about to pop with a killer disease. I take this diet very seriously and, honestly, I am healthier than most people I know without Celiac.

You will get there, I have no doubt. I learned all about patience with the Celiac diagnosis. Do not give in but if you do have a bad day, pamper yourself and surround yourself with friends. That's good medicine!

[Carson]

This is my first post, one month ago I received my Celiac diagnosis. The damage was bad enough my doctor told me not to expect to notice many results from my gluten free diet for 9 months. I feel horrible for the years I feel I lost with my kids, how the brain fog, sickness and just simply a lack of memory has stole precious time and memories from our early years together. My Doctor feels that my first pregnancy 9 years ago triggered my symptoms of the disesase. I don't miss my gallbladder, my ambition or the respect from coworkers and employers, I do miss my kids knowing me as a happy and productive mother.

This have completely changed my personality. I blamed myself for just being lazy when I had zero energy or ambition. I forced myself to do every single thing with my kids, especially in the last year or two, because I knew they needed a mother. I went from a caring and patient mom to a short tempered and angry person, even towards my family. They really only remember me as a sick person and it just completely breaks my heart.

I look forward to the day when I become a healthy person. As much support as I have for my health, this is the part that people don't understand and it seems to be the most debilitating part.