My Rant

[Acersma]

I agree with everyone on this Forum that having Celiac's Disease SUCKS. It is something that will never go away. It is a disease that affects everything I do in my life. I hate it. But I also appreciate that it has given me power. The power to finally say no to the plate of donuts, power not to sit at my desk at work and eat cookies and brownies. Being diagnosed gave me my life back. Finally I could understand the depression, the rage, the fatigue, sinus allergies that plagued me all year long. The arthritis eased, the muscle and joint pain. The restlessness. I have been given back the energy to enjoy life! That is why I get so upset when I see MANY posts of Celiacs complaining that family, co-workers, food industry people are treating us unfair. I see it everyday as well. BUT. We need to remember we are in control of what goes into our mouths and bodies. If we are unhappy w/ co-workers having a treat in front of us then walk away. If you go to a restraunt and they won't accomodate you, walk out and find one that will. If you go to a family members house and they are contaminating you take your own food or start having the gatherings at your home where you are in control. We all agree that people should be more sensitve and accomodating. That is in a perfect world though and we don't live in one. My boyfriend, who lives w/ me and my daughter are doing their best, but they forget to wipe crumbs, or they offer me a bite...thinking they are polite or becasue they simply forgot. I am okay w/this and I remind them. Everyday they get better! It takes time. But we can't expect people who are uneducated about what being a Celiac is about to simply "get it" or understand. My daughter has had asthma since she was 2 weeks old...people still don't get second hand smoke or burning a candle or cold weather can put her in the hospital! But I educate people about it and they are getting it. This isn't a bash on anyone it is a reminder that it is up to us to educate others and not alienate them or ourselves! I do get down and upset w/ people as well. Daily. But they don't have the power to take my life anymore than Gluten does anymore.

Jody

Gluten Free since July 01, 2007

[Centa]

Good post, Jody. I definitely think along the same way you do. It's for us to take back our life, and to take the daily actions that we need for our own health.

And since we're the ones who have the disease, it's up to us to teach others about it, and do the speaking up and if need be acting up to do things like getting labels changed or getting from a physician delivering insufficient care to one able to grasp what's going on in our life and give appropriate treatment.

However, there's a plus I get from reading some of the rants. If the complaining post includes details of symptoms, of what works and what doesn't work, or even contributes to me being alert in talking with a doctor about something one way, and not another, I learn more about the disease. And many of rants do..

I'm glad we've got a spot to blow off steam

But OFF site, I definitely agree with you.

And it IS a question of claiming power (that is there in us in the first place) and using it on our own behalf. I don't think that's too big a word, at all.

Stay warm up there in Wisconsin...

[Gemini]

I agree with everyone on this Forum that having Celiac's Disease SUCKS. It is something that will never go away. It is a disease that affects everything I do in my life. I hate it. But I also appreciate that it has given me power. The power to finally say no to the plate of donuts, power not to sit at my desk at work and eat cookies and brownies. Being diagnosed gave me my life back. Finally I could understand the depression, the rage, the fatigue, sinus allergies that plagued me all year long. The arthritis eased, the muscle and joint pain. The restlessness. I have been given back the energy to enjoy life! That is why I get so upset when I see MANY posts of Celiacs complaining that family, co-workers, food industry people are treating us unfair. I see it everyday as well. BUT. We need to remember we are in control of what goes into our mouths and bodies. If we are unhappy w/ co-workers having a treat in front of us then walk away. If you go to a restraunt and they won't accomodate you, walk out and find one that will. If you go to a family members house and they are contaminating you take your own food or start having the gatherings at your home where you are in control. We all agree that people should be more sensitve and accomodating. That is in a perfect world though and we don't live in one. My boyfriend, who lives w/ me and my daughter are doing their best, but they forget to wipe crumbs, or they offer me a bite...thinking they are polite or becasue they simply forgot. I am okay w/this and I remind them. Everyday they get better! It takes time. But we can't expect people who are uneducated about what being a Celiac is about to simply "get it" or understand. My daughter has had asthma since she was 2 weeks old...people still don't get second hand smoke or burning a candle or cold weather can put her in the hospital! But I educate people about it and they are getting it. This isn't a bash on anyone it is a reminder that it is up to us to educate others and not alienate them or ourselves! I do get down and upset w/ people as well. Daily. But they don't have the power to take my life anymore than Gluten does anymore.

Jody

Gluten Free since July 01, 2007

You do have some awesome and well spoken points, Jody, but I have to slightly disagree with you about the whole idea that having celiac disease sucks. I know many people have this mindset but I don't view it that way at all. I eat better than all the people in my orbit, still have found many restaurants where I can dine without fear of being glutened, although living in a city like Boston helps a lot as it's so Celiac friendly and have found there is very little that it has prevented me from being a part of. For me, the only down moments come with all the associated illnesses that can happen as a result of Celiac. I have 2 on top of of the celiac disease and, although I manage them well, there is always the fear something else will develop that I won't be able to manage well.

You are impressive to take charge of things like you have and I couldn't agree with you more on that aspect. I have taken total charge of my eating situation and those that roll their eyes at me or say stupid things, I just give them a pitying look and try to educate.....doesn't always work though. We are the most misunderstood lot on the planet and I really believe it's becasue it's a food related issue. Food is so primal and many people just put blinders on when it comes to what they put in their mouths.

I wanted to make one comment about your daughter's asthma....keep an eye on her for celiac disease because asthma is a symptom. My nephew has severe asthma (he's 25) and began to notice that everytime he took a swig of beer, his chest tightened up and he had breathing difficulties. He is starting to listen to me about my guess that he also has celiac disease. He also has many gastric issues to boot. His mother, my sister, also reacts with food but she's in denial!

[Acersma]

You do have some awesome and well spoken points, Jody, but I have to slightly disagree with you about the whole idea that having celiac disease sucks. I know many people have this mindset but I don't view it that way at all. I eat better than all the people in my orbit, still have found many restaurants where I can dine without fear of being glutened, although living in a city like Boston helps a lot as it's so Celiac friendly and have found there is very little that it has prevented me from being a part of. For me, the only down moments come with all the associated illnesses that can happen as a result of Celiac. I have 2 on top of of the celiac disease and, although I manage them well, there is always the fear something else will develop that I won't be able to manage well.

You are impressive to take charge of things like you have and I couldn't agree with you more on that aspect. I have taken total charge of my eating situation and those that roll their eyes at me or say stupid things, I just give them a pitying look and try to educate.....doesn't always work though. We are the most misunderstood lot on the planet and I really believe it's becasue it's a food related issue. Food is so primal and many people just put blinders on when it comes to what they put in their mouths.

I wanted to make one comment about your daughter's asthma....keep an eye on her for celiac disease because asthma is a symptom. My nephew has severe asthma (he's 25) and began to notice that everytime he took a swig of beer, his chest tightened up and he had breathing difficulties. He is starting to listen to me about my guess that he also has celiac disease. He also has many gastric issues to boot. His mother, my sister, also reacts with food but she's in denial!

I have been keeping an eye on my daughter...keeping notes on when asthma symptoms strike, what she ate, and even how she feels and how her belly looks and bathroom habits after eating. I will not be letting her go through what I have. It isn't often that I feel Celiac Disease as "sucking". On Saturday I did when Travis brought home donuts for breakfast...but ate my ricecake, yogart and went for a walk. My day went great! I feel this is a great place to come and vent and share and laugh and cry! Dont get me wrong. I just want people to feel that they really do have the control!

[FootballFanatic]

I think the reason for so many rants is because of the time it takes for the mindset to change from "this sucks/this is horrible" to "okay, it's got it's positives" and we have new members everyday, people at all different emotional levels. I agree with your post, but I don't think the "Celiac sucks" posts will ever go away because more and more people will be diagnosed, come to the forum, and express how they are feeling.

Those with the negative outlook will post, then those with positive thoughts can write back and point out that things will get better. Then those people who had a negative outlook will grow to be the ones giving the positive thoughts. I think it will cycle like this until there is a breakthrough that makes Celiac Disease no big thing...

[VioletBlue]

I think you have to allow people to feel what they feel. Most days I'm okay with this thing, but there are days when I'm not. I will be gluten free a year in December. Things happen to change how you feel. Incidents happen, new allergies show up, people are rude to you, a restaurant server gives you a blank look and an exasperated sigh when you talk about gluten. Your outlook may change from day to day.

Every person who comes here is going to feel differently, have a different take on it and be at different places. There isn't one path or one way through this. You can't know exactly what another person is feeling or going through. I've seen enough grief to understand that much. All you can do is support them, you can't make them feel or believe anything. People change when they're ready to change and not because someone else thinks it's a good idea.

Violet

[jenngolightly]

I agree with everyone on this Forum that having Celiac's Disease SUCKS. It is something that will never go away. It is a disease that affects everything I do in my life. I hate it. But I also appreciate that it has given me power. The power to finally say no to the plate of donuts, power not to sit at my desk at work and eat cookies and brownies. Being diagnosed gave me my life back. Finally I could understand the depression, the rage, the fatigue, sinus allergies that plagued me all year long. The arthritis eased, the muscle and joint pain. The restlessness. I have been given back the energy to enjoy life! That is why I get so upset when I see MANY posts of Celiacs complaining that family, co-workers, food industry people are treating us unfair. I see it everyday as well. BUT. We need to remember we are in control of what goes into our mouths and bodies. If we are unhappy w/ co-workers having a treat in front of us then walk away. If you go to a restraunt and they won't accomodate you, walk out and find one that will. If you go to a family members house and they are contaminating you take your own food or start having the gatherings at your home where you are in control. We all agree that people should be more sensitve and accomodating. That is in a perfect world though and we don't live in one. My boyfriend, who lives w/ me and my daughter are doing their best, but they forget to wipe crumbs, or they offer me a bite...thinking they are polite or becasue they simply forgot. I am okay w/this and I remind them. Everyday they get better! It takes time. But we can't expect people who are uneducated about what being a Celiac is about to simply "get it" or understand. My daughter has had asthma since she was 2 weeks old...people still don't get second hand smoke or burning a candle or cold weather can put her in the hospital! But I educate people about it and they are getting it. This isn't a bash on anyone it is a reminder that it is up to us to educate others and not alienate them or ourselves! I do get down and upset w/ people as well. Daily. But they don't have the power to take my life anymore than Gluten does anymore.

Jody

Gluten Free since July 01, 2007

I'm one of those newbies that is going through the grief stages of celiac. I'd never heard of celiac until 5 1/2 weeks ago, went gluten-free 4 weeks ago, and got the official diagnosis yesterday.

Grief has stages, and anger and sadness are two powerful emotions that are *necessary* for us to explore before we learn to accept the disease. I can step back and be objective about how good the diet will be for me - no more snacking at my desk and my overall health will improve, but right now I'm mad. I'm mad that my husband can still eat Oreos. I'm mad that my kids can have peanut-butter sandwiches on Wonder bread. And I'm sad. I'm sad that we can't jump in the car and go out to eat. The two times we've tried, I've been glutened - even though I've tried to be really careful. I'm sad that I'm spending so much time in the kitchen cooking when I used to throw together meals in half the time it now takes - that takes away time I used to spend with my kids. I'm sad that I have to think about food all the time. What am I going to have for breakfast? What am I going to take for lunch (instead of going out with the girls)? What am I fixing for dinner? Do we have all the ingredients, or am I going to be standing in front of the fridge with tears running down my face?

Grief takes its time, and it's different for each person. And we tend to spiral, so just when we thought we were done, we circle back and go through another phase.

I hope I get to your level of thinking soon. But be patient with those of us who are new to the disease and need some TLC.

[Centa]

I'm glad you brought up grief, jenn.

Some grieving needs people with you who really can get it when you say what's on your heart.

[Gemini]

I'm one of those newbies that is going through the grief stages of celiac. I'd never heard of celiac until 5 1/2 weeks ago, went gluten-free 4 weeks ago, and got the official diagnosis yesterday.

Grief has stages, and anger and sadness are two powerful emotions that are *necessary* for us to explore before we learn to accept the disease. I can step back and be objective about how good the diet will be for me - no more snacking at my desk and my overall health will improve, but right now I'm mad. I'm mad that my husband can still eat Oreos. I'm mad that my kids can have peanut-butter sandwiches on Wonder bread. And I'm sad. I'm sad that we can't jump in the car and go out to eat. The two times we've tried, I've been glutened - even though I've tried to be really careful. I'm sad that I'm spending so much time in the kitchen cooking when I used to throw together meals in half the time it now takes - that takes away time I used to spend with my kids. I'm sad that I have to think about food all the time. What am I going to have for breakfast? What am I going to take for lunch (instead of going out with the girls)? What am I fixing for dinner? Do we have all the ingredients, or am I going to be standing in front of the fridge with tears running down my face?

Grief takes its time, and it's different for each person. And we tend to spiral, so just when we thought we were done, we circle back and go through another phase.

I hope I get to your level of thinking soon. But be patient with those of us who are new to the disease and need some TLC.

I am in no way intending to sound as if people don't have a right to grieve. If that's what a person has to experience to get to the other side of Celiac and not have any issues with it, that's totally OK with me. However, I have also seen people get stuck in the grieving process way too long or never seem to be able to detach themselves from the food issue and that's just not healthy. They adopt the "why me" attitude as their mantra and are stuck in misery and it doesn't have to be.

I guess I am lucky but I have never had any issues with food....cigarettes, yes, but not food. I have never yearned for anything from the pre-celiac disease days because I had hit end stage of celiac disease and NEVER want to be that sick again. I have found great replacements for my favorite foods, dine out successfully from time to time and love spending time cooking and converting and inventing gluten-free recipes. I realize that not everyone likes to cook but when you have celiac disease, you HAVE TO cook more for yourself so should at least try not to resent it so much. It is what it is. Maybe you could utilize that time in the kitchen with your kids and teach them to cook? Many parents don't even do that today and their kids hit college and can barely boil water. I loved the time spent cooking with my grandmother in my youth.

I know this will not sit too well with some but if the grieving process is prolonged or you feel stuck with no way out, a counselor might be a good road to head down to find out why there are such strong issues with food. People go through the same thing with alcohol and cigarettes when they have to stop using them and it's an emotional issue most times.

I work with a woman who also has celiac disease/GS and she is as stuck as a person can be. She keeps cheating and is always sick. She avoids me now because she got all upset that I don't cheat....found it hard to believe. I have never lectured her on sticking to the diet and tried to offer support but I have found many people who resent those that seem to have an easier time with it all. Too bad because she's a nice lady but she's going to have serious medical issues if she keeps on this way.

Recently at work they have started recognizing people's birthdays every month. They serve a big, gluteny cake and there are 2 Celiacs in my group. Instead of feeling sorry or angry about it, I asked the secretary to let me know what day each month they would be serving cake so I could bake and bring in something for the 2 of us that can't have their cake. It is now my mission to make the best gluten-free dessert they ever tasted so they will all know Celiacs are not doomed to eat sawdust, because that's what some of them think.

I am sorry you are having a hard time with this and hope your healing is complete and you can get past some of the anger over your new lifestyle. I'm sure it will happen and then you'll wonder what all the fuss was about!

[VioletBlue]

From my perspective grief is different for each person, and each person's path through life is different. What works for one person does not necessary work for another. I have no right to judge where someone should or shouldn't be in the grief process because it's an individual process. People have things in their past, in their upbringing, in their present lives, in their very physical make up that determine how well they cope. What may seem like "too long" to one person is simply how much time someone else needs to process what has happened to them.

Do people sometimes get stuck in the process? Probably. But that's not my call, that's theirs. It's their grief, not mine. Have I gotten stuck along the way? Probably. But I'm doing the best I can, which is all anyone here is doing. No one should feel the need to stick to someone else's time table or bow to others expectations for them.

Grief, and I do believe that's what we're talking about, is a very personal experience. I would rather honor right now what people say they are feeling as their reality than tell them they should be feeling something else. Sometimes the most life affirming thing anyone can do is to commiserate with another. Say I understand how you might be feeling, I'm sorry you're having a tough time.

I am in no way intending to sound as if people don't have a right to grieve. If that's what a person has to experience to get to the other side of Celiac and not have any issues with it, that's totally OK with me. However, I have also seen people get stuck in the grieving process way too long or never seem to be able to detach themselves from the food issue and that's just not healthy. They adopt the "why me" attitude as their mantra and are stuck in misery and it doesn't have to be.

I guess I am lucky but I have never had any issues with food....cigarettes, yes, but not food. I have never yearned for anything from the pre-celiac disease days because I had hit end stage of celiac disease and NEVER want to be that sick again. I have found great replacements for my favorite foods, dine out successfully from time to time and love spending time cooking and converting and inventing gluten-free recipes. I realize that not everyone likes to cook but when you have celiac disease, you HAVE TO cook more for yourself so should at least try not to resent it so much. It is what it is. Maybe you could utilize that time in the kitchen with your kids and teach them to cook? Many parents don't even do that today and their kids hit college and can barely boil water. I loved the time spent cooking with my grandmother in my youth.

I know this will not sit too well with some but if the grieving process is prolonged or you feel stuck with no way out, a counselor might be a good road to head down to find out why there are such strong issues with food. People go through the same thing with alcohol and cigarettes when they have to stop using them and it's an emotional issue most times.

I work with a woman who also has celiac disease/GS and she is as stuck as a person can be. She keeps cheating and is always sick. She avoids me now because she got all upset that I don't cheat....found it hard to believe. I have never lectured her on sticking to the diet and tried to offer support but I have found many people who resent those that seem to have an easier time with it all. Too bad because she's a nice lady but she's going to have serious medical issues if she keeps on this way.

Recently at work they have started recognizing people's birthdays every month. They serve a big, gluteny cake and there are 2 Celiacs in my group. Instead of feeling sorry or angry about it, I asked the secretary to let me know what day each month they would be serving cake so I could bake and bring in something for the 2 of us that can't have their cake. It is now my mission to make the best gluten-free dessert they ever tasted so they will all know Celiacs are not doomed to eat sawdust, because that's what some of them think.

I am sorry you are having a hard time with this and hope your healing is complete and you can get past some of the anger over your new lifestyle. I'm sure it will happen and then you'll wonder what all the fuss was about!

[Gemini]

From my perspective grief is different for each person, and each person's path through life is different. What works for one person does not necessary work for another. I have no right to judge where someone should or shouldn't be in the grief process because it's an individual process. People have things in their past, in their upbringing, in their present lives, in their very physical make up that determine how well they cope. What may seem like "too long" to one person is simply how much time someone else needs to process what has happened to them.

Do people sometimes get stuck in the process? Probably. But that's not my call, that's theirs. It's their grief, not mine. Have I gotten stuck along the way? Probably. But I'm doing the best I can, which is all anyone here is doing. No one should feel the need to stick to someone else's time table or bow to others expectations for them.

Grief, and I do believe that's what we're talking about, is a very personal experience. I would rather honor right now what people say they are feeling as their reality than tell them they should be feeling something else. Sometimes the most life affirming thing anyone can do is to commiserate with another. Say I understand how you might be feeling, I'm sorry you're having a tough time.

That's all well and good but regardless of what anyone says, you don't want to get stuck in a pity party. Many people get stuck and should not feel guilty about it...they should take action. Or if they find it too difficult, ask for help because it sure will make for a long and miserable life if a person has trouble letting go of foods they can no longer have and aspects of their lifestyle they have to change a bit.

My brother, who is in denial about having celiac disease, has Type 1 diabetes and was diagnosed 28 years ago with that. He still carries a giant chip around about it and as a result, his mental state and overall health is not good. Is it tough to have these diseases? It sure is. But there are many worse conditions to have that will impact your life far, far worse and I am very thankful to have one that I have total control over my recovery on with no surgery or meds to deal with. I guess I view my glass as half full and not half empty.

[debmidge]

I think the the length of grieving or whether or not your "bout" with this grief is over or not is also dependent upon what other medical conditions you have as a result of the celiac ravaging your body. For example, if you were mis-diagnosed for years you may have a host of other conditions which has a greater impact on your every day living than just celiac alone would. This person would probably come to the conclusion that yes, celiac sucks on a daily basis; as if it were not for the celiac, they wouldn't be so sickly and have other food sensitivities.

The best thing about venting on this forum is that it's with other celiacs and they "get" it. Where else can you go to get this? Let us be compassionate, caring and slow to criticize as we really *don't* know what the other person is going through - we only have their testimony of what they are experiencing. Let them get it off their chest (mayhaps for the 100th time) but that's what we are here for. When I read a vent or rant from someone who is struggling with this, I try to comfort them. Anything else is counterproductive and will make that person stay away from these message boards as they can get that type of response from the rest of the non-celiac world - from us they need a touch of comfort, kind words, and hope for a better tomorrow.

[Centa]

I think the the length of grieving or whether or not your "bout" with this grief is over or not is also dependent upon what other medical conditions you have as a result of the celiac ravaging your body. For example, if you were mis-diagnosed for years you may have a host of other conditions which has a greater impact on your every day living than just celiac alone would. This person would probably come to the conclusion that yes, celiac sucks on a daily basis; as if it were not for the celiac, they wouldn't be so sickly and have other food sensitivities.

Very good point. Plus it's always easier to be upbeat if a person feels well. I was just reading an article in the New York Times on the effect of short sleep on depression, which has pretty well been documented. Well in my worst years (so far...) I had major sleep problems as one of my symptoms, lots of daily body pain, and grinding fatigue. I could barely stand up. And there was no end in sight, because I couldn't get it across to my doc that I was VERY sick, and it wouldn't go away, so I had no idea what was wrong or what to do to make it better. There are lots of stories like these on the boards, and worse ones.

In those years it felt much more like survival than anything, certainly not "taking power" and having a positive proactive attitude. I was depressed; an intimate partner dumped me for another woman because I wasn't delivering and he got tired of me being sick; work sucked; I had no social life because everything took 3 times longer to do because of the fatigue. It took me 3 days to mow the lawn, which gave me a day off and then I had to start mowing again. Getting showered and dressed for work took me 2 hours because I had to lie down for an hour after that shower; I was in major fatigue. And you can just imagine what all that extra time needed to just crawl through the day did to my time free for conversation, getting out for some fresh air, going to movies, the things that give us a break from nose to the grindstone or preoccupation with The Sickness. Like I say, I've read stories of much more lengthy and deep body distress than I went through for those couple years.

I guess I'm suggesting that the quality of the suffering itself that someone is carrying has a direct effect on mood, sense of empowerment, and the energy disposable to be proactive on one's behalf.

Nevertheless, in my own case, I'll come back to Acersma's original point. I got out of that pit by God's help (I have a thing about that) and because in that grinding crawl to survive I didn't give up and sit in the sickness...

But that's offline

I'll tell you what I grieved, and without this site to bring my sorrow to, or to vent about it, and I'll bet somebody would have given me an online hug; and it was the loss of that relationship with that man. I grieved that one for 2 years solid. Bigtime. I had wanted that relationship. I loved him. We had been together for 6 years before my symptoms hit. It was a real smack in the face when I was sickest that his response to my illness was to go find another woman. It took 2 years before I did the looking it in the face and releasing that relationship. Those were the 2 years of my recuperation, too.

I agree with debmidge: each grief has its own length of time. I've seen that in my own life.

As I read this thread, I hear several different topics going. And that's good.

[Gemini]

I think the the length of grieving or whether or not your "bout" with this grief is over or not is also dependent upon what other medical conditions you have as a result of the celiac ravaging your body. For example, if you were mis-diagnosed for years you may have a host of other conditions which has a greater impact on your every day living than just celiac alone would. This person would probably come to the conclusion that yes, celiac sucks on a daily basis; as if it were not for the celiac, they wouldn't be so sickly and have other food sensitivities.

Yes, that would be me. I went 20 years with active symptoms, almost every one listed for celiac and then some, before it was all figured out. In the course of those 20 years of eating poison, I acquired 2 other autoimmune diseases that give me grief from time to time. So I am one of the more severe cases and could be crying in my gluten-free beer but am not. I had a figurative dope slap the day of diagnosis that changed my attitude and made it impossible for me to feel any grief.

A friend happened to call me in tears after I got back from the doctor's office, with the realization I couldn't have wheat, barley or rye ever again. Her brother had literally dropped dead in front of his wife and kids, after suffering a blood clot when he returned from a business trip. He had flown and developed a blood clot and didn't know it. She was so upset and in disbelief that I kind of forgot my troubles for a half hour while we talked. When she hung up, I felt almost embarrassed that I had been upset about something as small as not being able to eat certain foods again. I was alive, I didn't need surgery or lifelong meds to fix the problem and I just felt so grateful to God that I was going to be better with nothing more than a diet change and an adjustment on certain things in my lifestyle. I then became determined to make the best of things and it turned out better than expected. I want for nothing in my life, I am healthier now than I was 20 years ago, and there is very little that I do now that I didn't do before diagnosis. That is in no way a criticism of those who are having a harder time than I did with this but a different mindset to get you into a better place mentally. It's a lot easier than many think. The original poster was 100% correct....people have more control than they think they do and are not powerless over the whole thing.

[debmidge]

This forum is a "safe haven" to allow those who need to vent to do so without being unduly criticized.

We are dealing with so many personalities who have differing stress thresholds - and who knows whatever else might be going on in their lives - my opinion is to "pass" from giving them the "you gotta be stronger, etc." response or comparing their lives to mine. Every situation is different.

[Gemini]

This forum is a "safe haven" to allow those who need to vent to do so without being unduly criticized.

We are dealing with so many personalities who have differing stress thresholds - and who knows whatever else might be going on in their lives - my opinion is to "pass" from giving them the "you gotta be stronger, etc." response or comparing their lives to mine. Every situation is different.

No one is unduly criticizing anyone and you should have enough sense to see that. I can honestly see why so many people get stuck and have a really hard time with this lifestyle, from the reaction of some here. I am not comparing my life to theirs either....everyone on this forum comes forth with their story but it would seem only certain ones are popular.....those that focus on the bad.

Read what I am saying.....everyone has a right to feel bad over this and go through their time of healing and renewal. But when you post on a forum consistently with negativity regarding this disease state and get stuck in your path to healing, even a doctor will urge you to seek counseling or help of some kind to assist you to overcome whatever it is that has you there. I suppose you would take that as criticism?

My story was to show some that there is a bright lining to everything and things could truly be worse, not to criticize their bouts of anger and depression on feeling deprived. There is another concern here also....many of the posters have children, which means those children could end up developing celiac disease also. How a parent reacts and behaves to their own diagnosis will directly impact how your child perceives a possible diagnosis for themselves. Food for thought but I am sure there will be those that think I'm being mean for stating the obvious.

[VioletBlue]

The flip side to this are people who consistently post nothing but roses and sunshine about this disease.

Let's be reasonable about it. It's not abject misery, but it is not a walk in the park either. No one appreciates having either side of the coin held up to them as the gold standard for how they should get through their life. I would frankly worry about anyone who consistently walked either side of the line.

No one is unduly criticizing anyone and you should have enough sense to see that. I can honestly see why so many people get stuck and have a really hard time with this lifestyle, from the reaction of some here. I am not comparing my life to theirs either....everyone on this forum comes forth with their story but it would seem only certain ones are popular.....those that focus on the bad.

Read what I am saying.....everyone has a right to feel bad over this and go through their time of healing and renewal. But when you post on a forum consistently with negativity regarding this disease state and get stuck in your path to healing, even a doctor will urge you to seek counseling or help of some kind to assist you to overcome whatever it is that has you there. I suppose you would take that as criticism?

My story was to show some that there is a bright lining to everything and things could truly be worse, not to criticize their bouts of anger and depression on feeling deprived. There is another concern here also....many of the posters have children, which means those children could end up developing celiac disease also. How a parent reacts and behaves to their own diagnosis will directly impact how your child perceives a possible diagnosis for themselves. Food for thought but I am sure there will be those that think I'm being mean for stating the obvious.

[JNBunnie1]

The flip side to this are people who consistently post nothing but roses and sunshine about this disease.

Let's be reasonable about it. It's not abject misery, but it is not a walk in the park either. No one appreciates having either side of the coin held up to them as the gold standard for how they should get through their life. I would frankly worry about anyone who consistently walked either side of the line.

You know, I kinda get what you're saying. The chipper, cheery, cheerleady people do kinda freak me out. But for some people though, like me, it's just not that hard. I'm not EXCITED about having this disease, but, I'm also not gonna whine about missing out on Burger King. Knowing what I've learned about nutrition, I'm glad I stopped eating all that stuff. This coming from the girl who used to be on the Toaster Strudel diet. That's not good for ANYONE. And my life isn't really too affected by Celiac. I just get pissy when I glutened, cuz it lasts for a MONTH. My boyfriend lets me whine.

[Matilda]

...

[Gemini]

The flip side to this are people who consistently post nothing but roses and sunshine about this disease.

Let's be reasonable about it. It's not abject misery, but it is not a walk in the park either. No one appreciates having either side of the coin held up to them as the gold standard for how they should get through their life. I would frankly worry about anyone who consistently walked either side of the line.

Wow....talk about blowing a post way out of proportion! I'm thinking there's a chip somwhere on your shoulder because you seem to have a problem with people who adapt well to difficult situations. I've gotten that before and it generally comes from those who wallow in self pity.

Yup, I do look on the bright side of things and will not apologize for that. I have just seen too much illness in friends over the past 2 years that were far, far worse than not being able to eat at fast food restaurants. They had no control over their illnesses and Celiacs do, for the most part unless you have refractory sprue. Sure there are days when you'd rather not have celiac disease but that's about 2 days per year for me. Life is way too short to dwell on the loss of crappy food you shouldn't eat anyway. And again, because apparantly you still are not reading what I am writing, no one is holding up their way of life as a gold standard for anyone. It's just totally bizarre to resent those who have made the best of a serious disease and are picking up and moving on with it.

[debmidge]

This is being said with as much forethought and compassion and in no way to say anything more than what it says....

I guess I am talking about a low percentage of celiacs (who have additional celiac-related health issues) . I'm not talking about celiac people who are miserable just because they can't go to fast food places any longer. I am talking about celiac people who despite following diet have other very serious health issues that they would not have had if they did not have celiac or if they were diagnosed early on. These people too have no control over health issues which have destroyed their bodies.

I would suppose that the majority of those with celiac disease do not have it so severely as these others do and perhaps that's where there's a difference in perception. But if their rant is about not being able to do something normal like go to fast food let them rant. They should feel safe to do it here and when I read those posts, I don't interject and tell them they shouldn't feel that way; I shake my head in understanding and move on to the next thread sometimes leaving a post that reads: I hear ya! or I don't post at all ...I think that's all the person is looking for: someone to say "There, there...yes it's a pain in neck and the inconvenience of the diet exists..." Maybe they are just having a bad week/month or whatever. Why is it so hard for people to just read the thread and keep from making the venter feel worse?

It is not true that it's only in cases of refractory sprue where there's severe problems.

The facts are that there are people who besides gluten intolerant, have developed allergies to egg, corn, soy, potatoes, milk, rice, sorghum, flax, yeast, beef, nuts, spices etc. They have irrreversible neurological damage, irrreversible muscle damage (wasting of muscle tissue) , small intestine ulcerations from celiac, quick to fatigue. This isn't about a little thing like 'not being able to eat crappy food.' I don't think the average celiac is seriously complaining about not being able to eat fast food.

These people's situations are being cavalierly dismissed when someone refuses to honestly validate the situation they got stuck with. It's then an added stress for them if on this board in so many words they are being told not to feel this way as "it's not so bad." (As an aside, it is a disease that has a severe limitation and if you don't see it that way, then think about those people who during Hurricane Katrina had to stay in the Superdome: I don't think there was any gluten-free food there. Celiac has real-life limitations, if this were not true, then the US military would not discharge known celiacs.)

No one is resenting anyone who has an upbeat position...on the contrary the upbeat person is exactly the type of person who is needed to help lift the other person.

An upbeat response should not use comparitive examples like pointing out to the venter those who have other horrible diseases. By doing this, the venter's experiences and feelings are being discounted. . Those are the type of responses the celiac person can get from the non-celiac world, they shouldn't be used here.

I don't think those who rant or vent are always 100% of the time looking at the downside to celiac. I think that they are unable pick up and move on because everytime they try to, they get a physical reminder that it's not possible.

My husband is very ill from misdiagnosed (30 years ago) celiac: to the point where I am not sure if he will be on this earth for the full measure of his years. Along with other celiac related problems which I will not go into at this time, his neurological damage is bad, but not as bad as Lynne (if you know which board member she is)...however he is on meds for the neurological damage and cannot take antidepressants. There might be a point soon where he will be unable to drive a car due to this neurological stuff. If he were to post instead of me, almost all his posts would be negative rants/vents. He cannot take anti-depressants as his neurological damage consists of bodily shaking and mini seizures -- the anti-depressants make this shaking constant all day and night.

He does not have refractory sprue, but still has food absorption issues (from damage) and cannot eat fruits and vegetables due to the roughage ---- and he is only 130 lbs. at 5' 10" tall from a lifetime high of 180 medium build (his picture is in my posts to show how healthy he USED to be).

How do I tell him to pick himself up and move on when he's been unable to work for the last 30 years? When his youth and vitality were taken from him? When any foray out of our house is a major undertaking? Fast food? He's in heaven when he goes to Outback Steakhouse. But there's not one day that goes by that he doesn't forget he has additional health issues from an immune disorder called Celiac Sprue which sets him apart from even the mainstream celiacs.

[debmidge]

No one is unduly criticizing anyone and you should have enough sense to see that.

i give up..

[babygirl1234]

yeah celiac disease does suck because the food we can have is so damn exp

[confusedks]

I totally agree nobody is complaining about not being able to eat fast food. I used to eat healthfully before I was diagnosed. I am still suffering from serious health problems because of my undiagnosed Celiac. I am 17 years old and have a 67 degree spinal curve, 6 disc bulges and many other physical problems. It is very easy to have a negative attitude about Celiac. I agree it isn't the worst diagnosis, but I am suffering from serious health problems (no need to go into details) because my doctors never ever bothered to test me for Celiac. I had been to 14 doctors before I was diagnosed. And we are now on my 18th doctor, and a few more to come. This is all at the ripe age of 17!

There are days when I am happy I have the diagnosis and I DO feel empowered, but there are days when I get upset because I can't even eat the gluten free foods because of other intolerances. Everybody needs to have their good AND bad days. To not feel bad about Celiac at some point is unrealistic and unemotional. That is not normal. Also, there are some people who have food addictions, it is not easy for them to let go of food.

Finally, we MUST remember the reason this board exists. I can come here at the end of a day where I couldn't eat anything that my friends were eating and I can read about people who are going through the same thing. This board is a amazing...but we must not discredit how anybody is feeling.

Kassandra

[JNBunnie1]

I totally agree nobody is complaining about not being able to eat fast food. I used to eat healthfully before I was diagnosed. I am still suffering from serious health problems because of my undiagnosed Celiac. I am 17 years old and have a 67 degree spinal curve, 6 disc bulges and many other physical problems. It is very easy to have a negative attitude about Celiac. I agree it isn't the worst diagnosis, but I am suffering from serious health problems (no need to go into details) because my doctors never ever bothered to test me for Celiac. I had been to 14 doctors before I was diagnosed. And we are now on my 18th doctor, and a few more to come. This is all at the ripe age of 17!

There are days when I am happy I have the diagnosis and I DO feel empowered, but there are days when I get upset because I can't even eat the gluten free foods because of other intolerances. Everybody needs to have their good AND bad days. To not feel bad about Celiac at some point is unrealistic and unemotional. That is not normal. Also, there are some people who have food addictions, it is not easy for them to let go of food.

Finally, we MUST remember the reason this board exists. I can come here at the end of a day where I couldn't eat anything that my friends were eating and I can read about people who are going through the same thing. This board is a amazing...but we must not discredit how anybody is feeling.

Kassandra

You know Kassandra, I agree with you. I also think that a lot of the people responding to this thread are taking the things said here entirely too personally. It seems like everyone read the original post and thought, "Wow, that was meant directly for me, and I must be the one they're talking about, and I need to get up in arms about it." I think the person who started this thread was really just trying to preach a little moderation, and maybe encourage people to at least TRY to look on the bright side a little more often than 2 % of the time. I mean, there's literature out there that was encouraging my father who had leukemia to try to be cheerful and upbeat, because it HELPS YOU GET BETTER. There is some science to this.