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Celiac Cost Me Everything


ravenwoodglass

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Hawthorn Rookie

Raven (((hugs)))

I too have a strained relationship with my family, my older two children included thanks to illness. I can only imagine the pain of losing a beloved pet. I have a dog and she's been a lifesaver. Totally non judgemental, ever loving, and always pleased to see you, even when you are crying.

Be kind to yourself <3

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YoloGx Rookie

Hi Ravenwood,

You are not alone. Many here love you, and you are loved by all of Nature around you. Losing a dog you feel so close to has to be tough. When I lost my cat Omar I thought I was going to die. Its hard when family is not a real family. I know what its like to feel that perhaps someday they will come around, but cannot in any way shape or form count on it. Instead there is just bitterness and animosity on their part.

When you are up to it, I suggest you find some interest and pursue it -- make new friends, create a new life--and eventually your friends may become your new family, as many are here. I don't know how old you are, but it doesn't matter. One can always begin again, even if you are 90. I am 62 and didn't figure out that I needed to be off all trace glutens until a little over 3 1/2 years ago. I was apparently originally diagnosed when I was 4 or 5 months old, but was never told until after I figured it all out.

There is much to be bitter about. All the diseases, the missed opportunities etc. I am no longer young. However life goes on and I am learning there is much I still can do. Like write about my experiences for one thing. And reach out to new people. Perhaps create a local gluten intolerant support group. I like the idea the man from Louisiana told us all about of an emotional release support group for celiacs. Many hugs dear. You are a real trouper!

Bea

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Yup Apprentice

Raven you are a pathfinder for those who feel lost. True friends don't abandon each other....being diagnosed has opened doors to different types of friendships and we thank you for your much needed guidance. So sorry about your pal.

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ravenwoodglass Mentor

Thank you everyone. I have lost dogs before but for some reason it didn't hit me as bad as losing this one. Perhaps because my kids were still young and at home and needing me. Perhaps because it was so sudden. He stopped wanting to eat Friday night and his breathing was very labored. I thank God for my vet clinic as I was able to call yesterday when he got real weak and he didn't have to suffer until today. He was bleeding internally and very old. His passing was easy and the vet was kind.

It has been a hard month or so, as they say bad luck comes in threes and Pooh passing was number 3 so perhaps things will turn around.

Your replies have been overwhelming in their kindness and it helps a great deal to know that people care. I emailed my DD this morning and told her what happened as I only left messages to call me back yesterday. She works long hours and I know she will call when she can. Families just don't seem to be like they used to be. Everyone moves so far away and gets so busy with their lives that it is easy to forget the folks you left behind. I am mid-fifties so I am old enough to remember families that all lived close and getting together at Grandmas or Aunties was something done every Sunday. I miss those days and it seems many others here do also.

Thank you all so much for being here when I needed you.

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AMom2010 Explorer

I too am so very sorry for your loss! There is nothing worse than having your constant, very best buddy leave your side. I hope you begin to feel better soon! It will get better!

I too thank thank you for all your knowledge and support on this forum, I frequently think of your words during the day and I have begun this new gluten free lifestyle.

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Jestgar Rising Star

There was a piece on NPR about a local politician who was born to a native american woman, but adopted by a white family. She went through some very difficult times, and somehow ended up in front of the tribal council after her dad died (mom was already gone). She apologized for coming to them and said something about not having a family. The tribal elder said "you don't need a family, you have a tribe".

That's kinda what I feel like this group is. A group of people you were born into, some better, some worse, but all connected. So don't worry when you feel alone, or your family isn't supportive, or you need to grieve with people who will grieve with you. You don't need a family, you have us, you have your tribe.

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oceangirl Collaborator

Raven,

I really like what Jestgar said about "tribe"; I do feel here on the Earth Plane or the "Pain Plane' as I sometimes refer to it, we all have family and "chosen" family- those who we just feel more comfortable with and at home with. I come from a huge French and Greek family and there is a ton of love but with SOME, not always true understanding and compassion. My own kids (21 and 18) I know love me to pieces but can at times sound "hard" with me or act selfishly but I do realize that's where they're at right now. I think what you are experiencing with older kids seems much more difficult and painful and I wonder what unsolved issues they have that most likely have absolutely nothing to do with you yet you still bear the brunt of their long hurts or frustrations or missed opportunities... not fair, but common.

It's nice to read so many caring people's comments to you though I know it won't bring your beloved dog back. I just have to say, having buried so many of my beloved companions, I really didn't think I would get another cat after Sam died in February. (I had 7 at the time...plus 3 dogs and a rabbit) But, through a ridiculous chain of events that if one were to put in a novel (unless it was written by Gabriel Garcia Marquez...) no one would even believe, we met "Marvin", a foolish one-year old male tiger cat who has been slowly and entertainingly healing our household. I am sure Sam sent him.

Absolutely every one of my over 30 animals, with the exception of one little tiger cat back in the day, came from the shelter. They are the animals to get, I think. Or a few just found their way to our house, like some sort of 101 Dalmation circuitous calling chain... I don't know.....

Anyway, sorry, this is way too long; I just think opening your heart to the eventual possibility of another dog would be a good idea. And see what the universe then brings.

With kindness,

lisa

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SarahJimMarcy Apprentice

I would love to see a picture of Pooh, if possible. We are all sending the best to you and him. I've been thinking about you all day and hope tomorrow is better. So sad for you!

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Jenny (AZ via TX) Enthusiast

Ravenwood, I'm so sorry about the loss of your beloved Pooh. It is so hard to lose a good friend. As many people have already stated, there are all different kinds of friends. You have so many on this board alone. And, you have been a great friend to more people than you can imagine. It's not just the posters, but the lurkers too that have benefited from your advice. You are always kind and gentle in your responses and so many people appreciate you.

I will say some prayers for you and send some positive thoughts your way.

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zus888 Contributor

Hi Raven,

I am so sad and heartbroken to hear of your recent trials and feeling like you are all alone. I know how difficult it must be to lose a furry companion - one who saw you through thick and thin. Some day you will be able to be happy to have had him in your life, instead of sad that he had to leave. But...it will take time. I know it took me a long time to open my heart again, knowing that I would likely be left behind again and having to say goodbye. In the end, however, having them in your life is worth the pain you must face when they leave it. I'm so glad that you both had each other because I am certain that he was just as grateful to have had you as your were to have had him. Hugs, dear!

As to your family, I'm so sorry that your children are being so self-centered. Unfortunately, that seems to be the way things are nowadays. I don't know how old they are, but I know in my 20s, I was very self-absorbed and now, with kids, it hasn't gotten much better. :(

Last, I read a saying much like the one that you just posted. When I read it, it spoke to me in a way that changed my attitude. I'll give you a tiny bit of background: I was diagnosed with an incurable liver disease about 4 years ago. The statistics aren't good and the only real "treatment" is a liver transplant, but you have to be on your deathbed in order to get one. And there is a likelihood of the disease attacking the new liver as well. Even with the transplant, the statistics aren't comforting. So, on the PSC board, someone wrote, "I'd rather die living my life than live my life waiting to die." I had been going through a lot of emotions after my diagnosis and that was exactly what I needed to read at that time. And, I've chosen to live my life with that one statement in mind. I don't always succeed, but mostly I'm doing a pretty good job. That isn't to say that I don't get down or scared or defeated, because I do, but eventually, I pull up my bootstraps and decide to ignore the statistics and work my way on being an outlier. I hope you can find the strength to do the same. We only get ONE CHANCE at this life. You've been given a new life with a gluten-free diet. You CAN focus on the fact that so much time was wasted, OR you can focus on the fact that you've been given a new lease on life. You can choose to take it and run with it. What is done, is done. There is nothing you can do to change your past, but you CAN change your future and how you live it!! YOU have done just that for so many others here on this board, and I hope it's a gift that you can give yourself. You deserve it. And Only You can make the choice to do it.

I want to thank you for being such an inspiration to me and always offering support here. Yes, so many of us DO care about you. But what you should also be seeing is not only do we care, but YOU MATTER. YOU MAKE A DIFFERENCE IN THE LIVES OF OTHERS FOR THE BETTER!!! That's all many of us ever want. Is to know that it MATTERED that we ever lived. That we made the world or someone's life just a little bit better. And you can see a testament to the difference you've made right here in this thread!

Much love and hugs!

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kwylee Apprentice

So sad to hear about your little friend's passing.

You remind me that I spent years as a younger person glossing over my mom's "mystery" symptoms, I guess since the doctor couldn't find anything wrong with her I just didn't take it as seriously as it was. I'm sure we weren't there for her when it really mattered. How wrong we all were, and I feel badly that I didn't get a chance to tell her that I understand.

So I'm telling you. I understand all of it, and I'm so sorry.

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ravenwoodglass Mentor

You remind me that I spent years as a younger person glossing over my mom's "mystery" symptoms, I guess since the doctor couldn't find anything wrong with her I just didn't take it as seriously as it was. I'm sure we weren't there for her when it really mattered. How wrong we all were, and I feel badly that I didn't get a chance to tell her that I understand.

Me too. For years I pushed my Mom to go back to working as a secretary instead of doing housekeeping and taking in ironing. It wasn't until I was unable to do anything without a bathroom close by and lived in constant pain that I understood. I know my kids love me. They just don't understand how much I need to hear from them and likely won't until I am gone and they have children of their own.

I'm feeling a bit better today but still have to go through the cabinet and pull out his unused food to take to a shelter or my local food bank. I have a gift certificate for a picture framing and I am taking my favorite picture of him and a lock of his hair in this morning to be framed. It is the picture I posted. Still can't move his pillow from beside my bed though....

While I wish I could have found a job sooner in a way I am glad I haven't as I don't think I could deal with it right now. I have my volunteer work later this week though to keep me busy and by then I should be able to face the world without crying. Taking my little guy for walks at the lake gave me the strength to leave the house and fight the agoraphobia and I am going to fight like hell not to backslide. He was my comfort and my best friend in a way that I think only dog lovers can understand. And to say my kids are not dog lovers is an understatement.

Thank you everyone for your support. It does help more than you know. I know he will be waiting for me to join him and many other of my past loves someday. He will be the one running the fastest across the Rainbow Bridge.

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SarahJimMarcy Apprentice

Just wanted to check in on you today and still sending positive energy your way.

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cahill Collaborator

Raven,

Thank you for posting the picture of pooh :) Oh My Goodness, what a SWEET baby :wub:

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YoloGx Rookie

I agree-a beautiful dog Pooh was! He'll always be there in your heart. He's still with you in ways that count.

He just might also encourage you to find room in your heart for a new companion later on down the road. You will know when the time is right. For now its appropriate to mourn and be glad his big spirit shared his time with you.

Bea

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cahill Collaborator

While I understand and respect the suggestion of (after a period of grieving ) adopting another dog I also feel that in my case that will not happen.

My BEST buddy Gabe is 11 and has health issues. MY heart breaks just thinking about the day I will lose him.I have decided that once he is gone I will not have another dog.I have kittys and while not the same they will help.

I am 54 years old and have health issues. I do not feel that with my life issues (housing,work,health ect..)it would be fair to bring another dog into my life .

I will treasure every moment I have with Gabe but he is the last dog I will have. That saddens me to say that because He has brought so much joy and love to my life but I feel that is the responsible thing for me to do at this point of my life .

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bonnie blue Explorer

Ravenwood, I just got on and saw your post about your beloved friend Pooh, I am sending you out a big hug, and I will be thinking about you. I agree with the other posts that said you are always there for others here sending out wonderful advice and words of encouragement, I know I am very thankful for all you give to myself and others. My sympathies go out to you, I also have two little dogs who have always been there for me, on my good days they dance and play with me and on my bad days they snuggle and care for me. Thinking about you and sending out good thoughts, take care my friend.

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GFinDC Veteran

Sorry to hear about your loss Ravenwood. Dogs are great companions, they have such fun doing simple things. Chewing your shoes, biting the mailman, chasing cars, barking at the moon! Woofing at the neighbors and anyone who dares to knock on the door. Helping the cats eat their dinner, cleaning up spills and dropped food bits, running in circles, shedding fur, laying in your lap, eating furniture, fetching sticks (the smarter ones), and licking your hand. What's not to like? :) Kids aren't good for many of those things. I hope you feel better thinking about the fun things your pup liked to do. Sounds to me like he had a good life and a loving mom to take care of him.

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catsmeow Contributor

I'm your friend. I remember some long emails that went back and forth between us when I was a newbie. You helped me so much. You are an amazing and intelligent women. Thank you for helping me back then, I'm here for you. You know, my sis remembers you from several years ago. You helped her as a newbie as well. (((((((hugs)))). You are important and valued to us on this forum. Sending love your way. :wub:

P.S. So sorry about your little doggie.

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AVR1962 Collaborator

I so do understand. My real hard symptoms didn't appear until 2 years ago and I still didn't know my problem but I would say I have had it for years and I think the one thing I can reflect on is how exhausted, overwhelmed, and while trying to be the patient caring one I was fighting a terrible irritability inside myself trying to raise 5 kids with little input from my husband. There were days I just would lose it and I would feel so bad. 4 of my adult children are adults now and trying to find themselves in their own adult world. I realize the 20's are a tough learning time as I was once in their shoes but I hope I was never as disrespectful to my parents have my children have been towards us, me especially. It does break my heart so I know what you mean when you say you call and there is no answer. I don't get a reply to my emails nor do I get thank yous for gifts I send.

My problems with gluten took a real ugly stand in my life this past Feb....I was lready stressed and had been stressed for quite some time, my grandfather had died which brought out some real weird issues with my family. I got so so sick I was hardly functioning. I was making it thru the days and trying not to burden my family but I really felt I was sinking. I felt I was driving my husband nuts and my mom told me if I wouldn't obsess I would be fine. My friends couldn't understand because they had not even heard of celiac before and could not relate to what I was delaing with. I felt very alone, and like you I felt all I had was my career (I work with kids and being in their innocense some days was the only joyful part of my day) and my animals who were always happy to see me.

I ended up seeking a counselor to help me thru. There was alot going on but I really needed someone to talk about my health with, someone I felt would listen and understand. Whether my counselor was really interested in what I was going htru or not she did listen and she has helped me alot.

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ravenwoodglass Mentor

I ended up seeking a counselor to help me thru.

I may have to go back to mine. I am finding it hard to eat without my little guy to share my food with. Pulling back into my driveway is torture as he was always looking for me sitting on the back of my couch at the window. I took his food to a no kill shelther yesterday and spent a couple hours there petting the dogs and the cats and talking to the kind woman who was leading me through their facility about him. I can't think of taking another dog buddy home right now as none will ever be as good a dog as Pooh was. He never chewed furniture or shoes or did any of those annoying things most dogs do. He was such a big part of my life for so long. I know this pain will dull someday and I am taking one day at a time right now. It hasn't even been a week yet and it is so hard to not cry constantly when I am home alone. I hope we are busy in the food bank tommorrow but I know that when the day is done that little face won't be waiting for me. He always knew when I was coming home and if I was late I could see his little head sleeping through the window as he would fall asleep waiting for my car to pull in drive.

Since traveling will be easier I thought maybe planning a trip to see my kids would give me something to take my mind off things but my kids haven't called although my DD sent an email saying 'sorry about THE DOG' and said she would try to call this weekend. I don't know how they can be so cruel. It does help a bit to hear that others are dealing with the same sort of thing with their adult children but I still long for those phone calls that rarely come.

Thank you all for your kind words. This board gives me a purpose for being here on earth. It helps knowing that I have been able to help others in some small way as it makes me feel less worthless.

I will survive but I just feel so empty right now. It is at a point where the pain is not just mental but physical. I just hurt all over. I don't know what I would do without my kitties and you guys. Thanks for being there for me when noone else is.

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luvs2eat Collaborator

I completely understand your physical pain as well as emotional pain over losing Pooh. I had to put my big boy boxer Boozer down and everyone said, "Get another dog right away." I just couldn't do it. It took me two whole years to consider another dog and I got a pretty boxer girl, Peaches. As we were driving her home and she was crying in the little crate... I was bawling w/ her thinking, "What have I just done?? I've brought this little girl into my life and I will surely outlive her!" She is the best dog I've ever had and NOW I know that I will never be w/o a dog again. I peek around on Craigslist and places for boxer girls cause I feel certain I'll have to get another long before Peaches gets old.

I also get the adult kid thing too. Your travel plans sound like a great idea.

(((((hugs))))

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GlutenFreeManna Rising Star

I may have to go back to mine. I am finding it hard to eat without my little guy to share my food with. Pulling back into my driveway is torture as he was always looking for me sitting on the back of my couch at the window. I took his food to a no kill shelther yesterday and spent a couple hours there petting the dogs and the cats and talking to the kind woman who was leading me through their facility about him. I can't think of taking another dog buddy home right now as none will ever be as good a dog as Pooh was. He never chewed furniture or shoes or did any of those annoying things most dogs do. He was such a big part of my life for so long. I know this pain will dull someday and I am taking one day at a time right now. It hasn't even been a week yet and it is so hard to not cry constantly when I am home alone. I hope we are busy in the food bank tommorrow but I know that when the day is done that little face won't be waiting for me. He always knew when I was coming home and if I was late I could see his little head sleeping through the window as he would fall asleep waiting for my car to pull in drive.

Since traveling will be easier I thought maybe planning a trip to see my kids would give me something to take my mind off things but my kids haven't called although my DD sent an email saying 'sorry about THE DOG' and said she would try to call this weekend. I don't know how they can be so cruel. It does help a bit to hear that others are dealing with the same sort of thing with their adult children but I still long for those phone calls that rarely come.

Thank you all for your kind words. This board gives me a purpose for being here on earth. It helps knowing that I have been able to help others in some small way as it makes me feel less worthless.

I will survive but I just feel so empty right now. It is at a point where the pain is not just mental but physical. I just hurt all over. I don't know what I would do without my kitties and you guys. Thanks for being there for me when noone else is.

Raven,

I am so sorry for your loss.

Forgive me if I am completely wrong in sharing this but I feel I have to give you another perspective on your relationship with your kids. I'm one of those adult children that moved far away from home at the age of 18 for college and never went back. You're about the same age as my mom and I feel like you are a board mom here--always helping everyone even if the question has been asked a hundred times before. My relationship with my parents was never really bad but it was never good either. My mom had a lot of emotional breakdowns and physical weaknesses that at the time I thought was just a part of getting older or a part of her personality. I now am certain most of her issues are due to undiagnosed celiac. Anyway, when I went off to college at first I called my parents every week (or they called me if I didn't call) but as the years wore on, I got busy and my memory got really, really bad from this illness. I couldn't remember if I had called them recently or I thought I had talked to them but I hadn't called in months. My memory for that type of thing was bad and I was always tired, always needing to sleep when I wasn't working or eating. Now I'm better and I know when I haven't called them but I've also realized that in my really bad years when I was too sick to remember to call them they also didn't call me. They never asked how I was doing or thought to keep trying to call me when I stopped calling them. My mom even got mad at me for not sending out Christmas and Birthday cards when I was so sick I didn't know what day it was. It really hurt me for a long time that they had no clue what was going on in my life. For a while I didn't care about calling them and didn't care if they called me. I can see myself screening my calls just like you think you daughter does. I am still in the process of "forgiving" them for all I went through in my childhood. Because I was completely emotionally scarred from my mom not having a fully functioning mind and body all though my childhood--whether it was her fault or not I have to forgive them to have a relationship with them that's not strained. I don't know the context of how your daughter said she "forgives" you for being sick all those years. I don't know how she meant it. To me "forgiving" means I am going to overlook the pain that was caused (no matter if it was intentional or not) and I want to move forward with a relationship. Bottom line may be that your daughter wants a relationship with you even if she is not showing it by calling you. Relationships are two way things and they take a lot of work. I know you are hurting right now and you wish your kids would reach out and comfort you. But it may be that your kids need you to reach out to them just as much. I think you should keep calling and try to visit them if you can. Get in their lives and see how they are really doing. I seem to remember something about your daughter being diagnosed but not taking the diet seriously? Sorry if I have you confused with another poster. But if that's the case maybe she's dealing with symptoms that she thinks is just stress or memory issues of her own? Whatever the case, she likely needs you just as much as you need her.

Again, sorry if I'm completely wrong and projecting too much. But I just saw so much of similar realtionship with my own parents that has been strained due to health issues that I had to comment. Don't give up on a relationship with them!

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SarahJimMarcy Apprentice

Ravenwood - I changed my Avatar to my guy, Fetch, in honor of yours. I hope it brings you a little smile.

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ravenwoodglass Mentor

Raven,

I am so sorry for your loss.

Forgive me if I am completely wrong in sharing this but I feel I have to give you another perspective on your relationship with your kids. I'm one of those adult children that moved far away from home at the age of 18 for college and never went back. You're about the same age as my mom and I feel like you are a board mom here--always helping everyone even if the question has been asked a hundred times before. My relationship with my parents was never really bad but it was never good either. My mom had a lot of emotional breakdowns and physical weaknesses that at the time I thought was just a part of getting older or a part of her personality. I now am certain most of her issues are due to undiagnosed celiac. Anyway, when I went off to college at first I called my parents every week (or they called me if I didn't call) but as the years wore on, I got busy and my memory got really, really bad from this illness. I couldn't remember if I had called them recently or I thought I had talked to them but I hadn't called in months. My memory for that type of thing was bad and I was always tired, always needing to sleep when I wasn't working or eating. Now I'm better and I know when I haven't called them but I've also realized that in my really bad years when I was too sick to remember to call them they also didn't call me. They never asked how I was doing or thought to keep trying to call me when I stopped calling them. My mom even got mad at me for not sending out Christmas and Birthday cards when I was so sick I didn't know what day it was. It really hurt me for a long time that they had no clue what was going on in my life. For a while I didn't care about calling them and didn't care if they called me. I can see myself screening my calls just like you think you daughter does. I am still in the process of "forgiving" them for all I went through in my childhood. Because I was completely emotionally scarred from my mom not having a fully functioning mind and body all though my childhood--whether it was her fault or not I have to forgive them to have a relationship with them that's not strained. I don't know the context of how your daughter said she "forgives" you for being sick all those years. I don't know how she meant it. To me "forgiving" means I am going to overlook the pain that was caused (no matter if it was intentional or not) and I want to move forward with a relationship. Bottom line may be that your daughter wants a relationship with you even if she is not showing it by calling you. Relationships are two way things and they take a lot of work. I know you are hurting right now and you wish your kids would reach out and comfort you. But it may be that your kids need you to reach out to them just as much. I think you should keep calling and try to visit them if you can. Get in their lives and see how they are really doing. I seem to remember something about your daughter being diagnosed but not taking the diet seriously? Sorry if I have you confused with another poster. But if that's the case maybe she's dealing with symptoms that she thinks is just stress or memory issues of her own? Whatever the case, she likely needs you just as much as you need her.

Again, sorry if I'm completely wrong and projecting too much. But I just saw so much of similar realtionship with my own parents that has been strained due to health issues that I had to comment. Don't give up on a relationship with them!

I will never stop reaching out to my kids. I try not to call more than once a month because I know they are busy and they do eventually call me back.

I think it is hard because we were so close when they were younger. It doesn't help that they both ignore their diagnosis but I don't mention anything about it anymore. It is a very taboo subject and is just not brought up. I pray it won't take them becoming as sick as I was before they realize they really do need the diet. It is hard when I was always there for them when they were growing up and it doesn't help any that I have no other family to reach out to. They will always be a very important part of my life as they were my reason to keep living for years. My being ill was very hard on both of them but especially my DD as she lived full time with me while her brother went to live with his Dad as a teen although we saw each other daily he never knew how sick I really was. My DD knew about the hours spent nightly and daily in the bathroom in agony and I think it is what contributed to her having an occupation in health care. She was even the one who wanted me to get Pooh when I had complications after surgery but I don't think either of them understand the deep love one can have for a pet or the pain that comes when losing one who has been with you and been your best friend for years. I hope someday we will have a closer relationship although I know it will never be as close as it was when they were little. I am not angry with them although it may come across like that but I am hurt. I do understand but I don't think they know how much I need to just talk to them about nothing, if you know what I mean.

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      Lots of tests

    3. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    4. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    5. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight



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    • plumbago
      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
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