Celiac Literally Shifted My Entire Life

[jensey]

So I WAS a bakery manager. I had been in the bakery for 22 years, then POOF celiac disease reared it's annoying antibodies. I have been aware that I had celiac for about 16 months now but until about 3 months ago I never considered how much it REALLY threw me off my life plan and I have moments of intense anger about it that I don't know if anyone can understand.

I am going to go ahead and RANT/WHINE FREELY here so read on if you want and if not I TOTALLY UNDERSTAND.

Initially going into the grocery industry I planned to go to college and move onward and upward, but that didn't happen as I found it hard to afford living and paying for school and I wasn't driven enough to look into grants and loans. So I stayed in grocery. It's a solid job with security for sure. Turned out I fell into the bakery department...one of (if not THE) toughest departments in a grocery store. I did well at it. I enjoyed the fast paced environment and the interaction with people. I became a cake decorator and and eventually a bakery manager. It allowed me the opportunity to move to from Las Vegas (with Smith's Grocery) to Eugene, Oregon and succeed as a manager in a different yet great grocery store. I loved the busyness of the department. It enthralled me and constantly challenged me. I was able to buy a house and adopt a wonderful dog.

In the time frame of moving my life forward I was getting sicker and sicker from celiac. I discovered I had celiac not long after I placed the bid on my new home I got blood test results that conclusively said I had celiac disease. My company worked with me and in a timely manner put me in a different position.

BUT my life's plan was shattered! My hopes of moving up in the bakery industry in grocery was set aside because I can no longer do what I have done for 22 years. I know, I know ..."go create a gluten free bakery". I am not THAT person. I am happy that the company I work for has given me another opportunity to grow with them, but I feel such a loss of self given the fact that I have to maintain a certain level of income and that I no longer have the ability to freely go wherever I want to with my knowledge and experience.

I am currently dealing with accepting this aspect of loss that celiac has put me in and it has been hard to acknowledge the magnitude of that loss. It is tremendous and I just needed to state that in a forum where people who might be able to relate or at least GRASP would hear it.

I am NOT in dire straits nor am I HOPELESS, but the sense of loss is something I need to acknowledge. Celiac literally shifted every aspect of my life, not just my diet. It affected my livelihood and I get stressed and angry, and sad about it. Not many people can relate. I just needed to state this in a place where I might feel heard and understood.

I wont even bring up the colitis and other food intolerance's that I am still trying to figure out GRRRRR. It is what it is and I am glad I no longer have knives in my stomach every day!

Thanks for reading.

I'll be ok...I believe/know this!

Jen

[Emilushka]

First of all, you deserve MAJOR HUGS (((((((HUGS)))))))

I am so sorry. But honestly, the way that you're talking, you sound like a really strong person and in a way, this couldn't have happened to a better person. Even through your ranting you stayed positive overall. You never lost focus on the fact that this part is awful, yes, but later will be better. Many people wouldn't have been able to manage that positivity.

So the second thing I really wanted to say is that I think you're a kick-ass person and you'll get through this. I know you know that already, but it's sometimes good to hear that other people acknowledge it in you also.

You've suffered a huge loss. As you put it, a huge sense of self is tied up in that part of your life that you can't have anymore. No wonder you are ranting. I would be, too.

(((((((HUGS)))))))

You're right: it is what it is.

[Kay DH]

Celiac is a grieving process, with all the anger, depression, and other stages. Your career has been blindsided, people's social lives are hit hard (not invited because friends didn't have gluten-free foods), some restaurant staff and most people barely understand what wheat is-- let alone gluten, even doctors know little about celiac and tend to dismiss it. My gluten intolerance started a year ago, after getting the flu. My symptoms were bad enough that I was considering retiring early, and my work is a large part of my life. After going gluten-free the symptoms quickly to gradually went away, but the grieving takes longer. I love to cook, and just shifting to gluten-free has been hard, but interesting and sometimes amusing. Celiac is a shift in life, lifestyle, diet, friendships, health, and more. Sometimes it is good to have a pillow to scream into. This forum has been great as a sounding board and to find understanding. Once the grieving process subsides and life changes become habit, life is better.

[Noni]

So I WAS a bakery manager. I had been in the bakery for 22 years, then POOF celiac disease reared it's annoying antibodies. I have been aware that I had celiac for about 16 months now but until about 3 months ago I never considered how much it REALLY threw me off my life plan and I have moments of intense anger about it that I don't know if anyone can understand.

I am going to go ahead and RANT/WHINE FREELY here so read on if you want and if not I TOTALLY UNDERSTAND.

Initially going into the grocery industry I planned to go to college and move onward and upward, but that didn't happen as I found it hard to afford living and paying for school and I wasn't driven enough to look into grants and loans. So I stayed in grocery. It's a solid job with security for sure. Turned out I fell into the bakery department...one of (if not THE) toughest departments in a grocery store. I did well at it. I enjoyed the fast paced environment and the interaction with people. I became a cake decorator and and eventually a bakery manager. It allowed me the opportunity to move to from Las Vegas (with Smith's Grocery) to Eugene, Oregon and succeed as a manager in a different yet great grocery store. I loved the busyness of the department. It enthralled me and constantly challenged me. I was able to buy a house and adopt a wonderful dog.

In the time frame of moving my life forward I was getting sicker and sicker from celiac. I discovered I had celiac not long after I placed the bid on my new home I got blood test results that conclusively said I had celiac disease. My company worked with me and in a timely manner put me in a different position.

BUT my life's plan was shattered! My hopes of moving up in the bakery industry in grocery was set aside because I can no longer do what I have done for 22 years. I know, I know ..."go create a gluten free bakery". I am not THAT person. I am happy that the company I work for has given me another opportunity to grow with them, but I feel such a loss of self given the fact that I have to maintain a certain level of income and that I no longer have the ability to freely go wherever I want to with my knowledge and experience.

I am currently dealing with accepting this aspect of loss that celiac has put me in and it has been hard to acknowledge the magnitude of that loss. It is tremendous and I just needed to state that in a forum where people who might be able to relate or at least GRASP would hear it.

I am NOT in dire straits nor am I HOPELESS, but the sense of loss is something I need to acknowledge. Celiac literally shifted every aspect of my life, not just my diet. It affected my livelihood and I get stressed and angry, and sad about it. Not many people can relate. I just needed to state this in a place where I might feel heard and understood.

I wont even bring up the colitis and other food intolerance's that I am still trying to figure out GRRRRR. It is what it is and I am glad I no longer have knives in my stomach every day!

Thanks for reading.

I'll be ok...I believe/know this!

Jen

Jen,

My heart is with you!!!! You are expressing my feelings completely . When I read the posts that reply to you, all I

could say was: "awesome". It's comforting to me that someone else feels the same frustration, sense of

loss that I feel. I'm so tired of being told "it's easy", or "there's really no change in your life", it makes me

want to slap them! People have no clue what their talking about when they say that. Those comments

came from the dietician I was sent to. Can you imagine???? I felt like my world was falling apart. All the

things I had cooked, ate, enjoyed my whole life, suddenly became off limits.

Thank you so much for expressing your feelings and helping me realize I'm not the only person who feels

this way. Keep up the good work and positive attitude. God Bless You! Noni.

[rdunbar]

Hi, I'm in the same boat, I feel like celiac has turned my whole life upside down, and nobody really gets it. i've given up trying to explain it to my family, I really wonder if anybody can realize how big an impact this can have on your life without going through it yourself. I've gotten really mad and worked up about it many times,so I can understand what its like. I was working for a catering company, and have worked as a chef for @ 20 years, and had to give it up when I realized how much i was reacting to being exposed to gluten at work; I'm very sensitive to gluten, even in the air; I have dermatitas herpetiformis, and celiacs with DH tend to be very sensitive, and react easily.

I really feel like i'm in a twightlight zone episode, or in some kind of limbo. It's good to be getting better, and i can sense that i'm slowly healing, and i try to focus on that, and having my life railroaded doesnt seem to weigh on me as much as it used to, I'm just happy when i can function at all on any level.

It sounds like you have a good grasp on things, and have things in perspective, but still, I know it's super frustrating, and it's very real. It helps to have a reality check sometimes, because nobody gets it, you begin doubting yourself what is going on. like the other day i saw someone i hadnt seen in a few years and he commented on how much weight i had lost ( my normal weight is 155lb), and i told him i had actually gained 10 lb back over the last 6 months and he was blown away,( I was down to 130!).

[Skylark]

Celiac can really mess with your life, no doubt about it. I'm really sorry to hear you had to give up your bakery management job that you really loved. My anger is about lost years. I would have had a very different life had my celiac been diagnosed young, when it was first suspected. Instead I spent much of my young adulthood chronically fatigued and coping with mental illness.

We have no choice but to pick up the pieces and move forward but I sure understand your anger.

[cap6]

I don't think that anyone except for another Celiac can really understand what a hug life change this is. Friends say they understand but it's easy to that say they understand while they are munching on a treat we can't have! hmmmm That sounds a little bitter but......... ok, let me explain. This is month 6 for me and my partner & I are on a week long road trip with friends staying in a hotel room with a kitchenette. I thought I had my bases all covered. Spent the entire day before we left organizing, cooking and packing food for a week. Well, I have a lot to learn!! The food I carried in the ice chest either got soggy or defrosted (ok, I'm not a cook) then the little refrig in the room malfunctioned and froze all the veggies & fruit. My new loaf of bread crumbled into a zillion pieces and... I am left with some cans of tuna (no mayo as that froze), crackers, peanut butter and a few bananas. No gluten-free food around for miles as we are not new any good sized towns. Can't wait to get home and have a meal.

I just reread what I wrote and now have to laugh. Everything that can go wrong with food seems to have gone wrong and wow - talk about lessons learned. lol Oh well. next time will be better. All I can say is thank goodness for this site and all of the compassionate people out there!

[jensey]

[

Thank you so much for your acknowledgment and recognition, it means a lot to me! Not many can grasp the disease itself let alone all the changes it begets.

I am a strong person, thank you for noticing, but sometimes it is hard for me to accept that FEELING the anger/hurt/disappointment/fear/loss that grieving begets is completely different than making a choice to LIVE in it, or allow it to supersede my main focus which is thriving regardless.

I truly appreciate your supportive words and empathy!

(((((((((HUGS BACK AT YOU))))))))))))

Jen

[jensey]

I totally understand that it is in fact TRUE no one CAN understand until they have gone through it themselves because as a bakery manager I had people ask me about gluten free items and while I explained the logistics I never really understood how much just a LITTLE exposure to gluten could affect someone.Certainly I was compassionate and aware but it's not the same when you have lived with the results of being exposed.I couldn't understand, completely, until I recognized that I had it. The shift of understanding was so significant I cannot describe it.

I don't have celiac DH and I doubt I would be able to work in my industry if I did. When flour comes through my line I literally hold it as far away from me as possible...and why is it that so many flour bags are slightly open? GRRR I know I get headaches from that. It is amazing how sick I was and how I was still able to function, the body is an amazing thing. Getting better is great and while we enjoy feeling better I think it is important to acknowledge that grief plays a significant role with this disease.

With the colitis I cannot tolerate any dairy and currently most veggies cause me significant problems. It is so hard to explain to people that I can't eat a salad. Greens are supposed to be good for you and yet they make me miserable.

Anyway, thanks for the reply and your understanding. It is nice to hear back from those who are living with celiac and can really grasp how different life has become.

I wish you well!

((((((((HUGS)))))))))

Jen

[jensey]

Jen,

My heart is with you!!!! You are expressing my feelings completely . When I read the posts that reply to you, all I

could say was: "awesome". It's comforting to me that someone else feels the same frustration, sense of

loss that I feel. I'm so tired of being told "it's easy", or "there's really no change in your life", it makes me

want to slap them! People have no clue what their talking about when they say that. Those comments

came from the dietician I was sent to. Can you imagine???? I felt like my world was falling apart. All the

things I had cooked, ate, enjoyed my whole life, suddenly became off limits.

Thank you so much for expressing your feelings and helping me realize I'm not the only person who feels

this way. Keep up the good work and positive attitude. God Bless You! Noni.

Noni,

Thanks! I know, RIGHT! GRRRRRR SOMETIMES! It isn't easy, I haven't heard that from people yet, but when you try to explain to people that you can't have WHATEVER it becomes annoying. I have tried to take my Dads' approach which is to say "no thank you" if anyone offers you anything to eat. He also definitively states that he will take care of your his own food needs in any social situation.

I cannot imagine a dietitian not having empathy or understanding of what a significant change this disease makes in a persons life, I am dumbfounded. Although I do know from experience that until someone is faced with the restrictions of and dealing with the repercussions of exposure to gluten it is very difficult to truly grasp. Until a person has to give up, FOREVER, a significant amount of their daily diet it is impossible for them to grasp.

Hell I have been dealing with this for 18 months now and just recently anger and pity pot self just came into the mix. Don't get me wrong, I know what's right for me and what I need to do but I frikking want a slice of pizza and I don't want to pay for it for 3 months! The dietitian would likely have to do some more sit ups and eat more salads for a few days to have that slice of pizza.

As a checker in a great grocery chain that has many gluten free options I can say that I see a lot of people on a day to day basis who are going through what we are. I think we all agree that a lack of understanding from many folks and a general sense of loss is normal. And you know what...sometimes we just need to rant, like I did.

Thanks for reading and responding!

Jen

[jensey]

Still learning how to respond on here. I am not sure if it is best to keep original response about the post and reply. I deleted the body of one and now my response doesn't really fit. Do people see that I replied to their response?

Just wondering.

[jensey]

I don't think that anyone except for another Celiac can really understand what a hug life change this is. Friends say they understand but it's easy to that say they understand while they are munching on a treat we can't have! hmmmm That sounds a little bitter but......... ok, let me explain. This is month 6 for me and my partner & I are on a week long road trip with friends staying in a hotel room with a kitchenette. I thought I had my bases all covered. Spent the entire day before we left organizing, cooking and packing food for a week. Well, I have a lot to learn!! The food I carried in the ice chest either got soggy or defrosted (ok, I'm not a cook) then the little refrig in the room malfunctioned and froze all the veggies & fruit. My new loaf of bread crumbled into a zillion pieces and... I am left with some cans of tuna (no mayo as that froze), crackers, peanut butter and a few bananas. No gluten-free food around for miles as we are not new any good sized towns. Can't wait to get home and have a meal.

I just reread what I wrote and now have to laugh. Everything that can go wrong with food seems to have gone wrong and wow - talk about lessons learned. lol Oh well. next time will be better. All I can say is thank goodness for this site and all of the compassionate people out there!

This site is fantastic!

It's rough having to think about every meal, snack, possible thing you will ingest especially when planning for trips. OH...NUTS are a great easy snack! I am not sure how long you have been diagnosed, but it does get easier. You will find snacks that work, they may not seem yummy (or even appetizing) but they will fill the hunger void. That is a really hard thing to learn to accept. "Sure I can have an egg or tune because it is gluten free but darn it all it is not what I WANT TO EAT!". Also learning to say "no thank you" instead of trying to explain why you can't eat what someone is offering is a whole other scenario. First you say "no thanks" then they offer something else then you say "oh no I have something (in my bag, my car, whatever)" then they offer something else and finally you have to explain the whole thing which is what you were trying to avoid in the first place aargh!

I am not sure what I wrote makes any sense, but I am going to leave it as is. I feel for ya!

Best wishes!

[ravenwoodglass]

Still learning how to respond on here. I am not sure if it is best to keep original response about the post and reply. I deleted the body of one and now my response doesn't really fit. Do people see that I replied to their response?

Just wondering.

If you want to reply to a specific post hit the reply button and when the original post comes into the box start your response a couple lines after the last "quote" bracket. That will put the original post into a box rather than fitting it in with your reply.

As to your original post, yes this disease can effect so much in our lives. It is a hard adjustment especially when we have built careers around gluten containing things like your being a baker. Hopefully soon you will find something else that you enjoy just as much. I wish you the best and I think quite a few of us can really identify with your frustration and anger.

[jensey]

If you want to reply to a specific post hit the reply button and when the original post comes into the box start your response a couple lines after the last "quote" bracket. That will put the original post into a box rather than fitting it in with your reply.

As to your original post, yes this disease can effect so much in our lives. It is a hard adjustment especially when we have built careers around gluten containing things like your being a baker. Hopefully soon you will find something else that you enjoy just as much. I wish you the best and I think quite a few of us can really identify with your frustration and anger.

Thanks Raven.

Oh do the responders get notified of your reply?

The anger comes and goes. The frustration is more about the other food intolerance's I have than the gluten...adding milk proteins and most raw veggies to the mix limits the choices tremendously. I have never wanted a salad so badly in my LIFE...I just don't want to play the price. Alas! It is what it is. At least the knives in my gut are gone today!

Thanks for your help!

[weluvgators]

I can appreciate how life altering learning about celiac disease is. I learned about it because of my nursing daughter. It has been an interesting few years as we try to unravel and understand what is going on with our health and gluten intolerance!

It would be so wonderful to have more awareness in the grocery industry! I love stores that have the bakery in the opposite corner as the produce section. I despise stores that have the bakery next to the produce section. I love the grocery in the next town over that offers to make up fruit and veggie platters for me in the deli and lets me pick them up there (normally they may be made in the bakery area unless gluten-free is requested). I would love to have a knowledgeable deli person at the store!! That would be a dream come true for me!!

I understand how the ripple effects seem to go on and on with this celiac understanding. My husband and I both have careers that center on our mobility - being able to move cross country as needed. Well, with three young kids that all have gluten super sensitivity . . . that is just intimidating to me! I have to redo all of my work with the schools . . . find new food sources . . . I just try not to think about it because it will be challenging. Our last move was challenging; and fortunately, we picked an assignment that was longer than most. But I dread moving again already! And I am ignoring the whole finding knowledgeable healthcare all over again . . . I am still trying to find that where we currently live!!

Good luck. There are so many adjustments to make in this journey.

[jensey]

I can appreciate how life altering learning about celiac disease is. I learned about it because of my nursing daughter. It has been an interesting few years as we try to unravel and understand what is going on with our health and gluten intolerance!

It would be so wonderful to have more awareness in the grocery industry! I love stores that have the bakery in the opposite corner as the produce section. I despise stores that have the bakery next to the produce section. I love the grocery in the next town over that offers to make up fruit and veggie platters for me in the deli and lets me pick them up there (normally they may be made in the bakery area unless gluten-free is requested). I would love to have a knowledgeable deli person at the store!! That would be a dream come true for me!!

I understand how the ripple effects seem to go on and on with this celiac understanding. My husband and I both have careers that center on our mobility - being able to move cross country as needed. Well, with three young kids that all have gluten super sensitivity . . . that is just intimidating to me! I have to redo all of my work with the schools . . . find new food sources . . . I just try not to think about it because it will be challenging. Our last move was challenging; and fortunately, we picked an assignment that was longer than most. But I dread moving again already! And I am ignoring the whole finding knowledgeable healthcare all over again . . . I am still trying to find that where we currently live!!

Good luck. There are so many adjustments to make in this journey.

Thanks for your understanding and response. I hope all goes well with you. I am grateful and aware that the awareness of celiac and or gluten intolerance has increased tremendously in the past few years. Most grocery chains are doing their best to make gluten free choices available to consumers. If it turns out that the stores where you move have limited choices be sure to voice your needs to the company. Every voice counts and makes a difference in supporting gluten free alternatives.

I hope all your transitions are smooth and think Eugene, Oregon...we are pretty gluten free friendly!

[cap6]

Back home tonight after our week long road trip and it felt so good to get home and to finally have a Real meal! Hope I don't see another cracker, tuna or peanut butter for ahile!!!