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Obsessing Over Celiac

rdunbar

By rdunbar
in Coping with Celiac Disease

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rdunbar Explorer
rdunbar
Posted

I'm just wondering if anyone else here feels like they are totally obsessing about celiac. in a way, I think it's a good thing, because you need to always be on your toes, and be on guard all the time. I spent a lot of time being careless about gluten, so i know how bad this can be.

dealing with celiac disease is like walking a tightrope or something, you can't afford to have one lapse, so being obsessed seems like a good thing, but i'm wondering if this could be unhealthy at a point?

It seems like it's all I'm interested in talking about with people, and I'm glad i'm trying to make others aware of celiac, but it gets old for a lot of people. my family has made comments, like i'm being too extreme, and get annoyed if i even mention it anymore.

i spend a lot of time thinking about it everyday. does this end?

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T.H. Community Regular
T.H.
Posted

I'm unfortunately right there with you. :unsure:

I kind of wonder if some of that doesn't go along with having a lot of trouble with it. My father and brother don't have much of a reaction, and they are both more laid back about it. Myself and my daughter get very sick and have had to research and struggle quite a bit to try and get healthy, and we think about it quite a bit more.

I think...well, hope...that it will not be quite as much in the forefront of my thoughts, once I've been doing this for a while. But I know I will always be thinking about it during the day, because I honestly can't NOT think about it.

The talking about it - I've been trying to blog some, so I can get a lot of my talking about it 'out of me' and maybe pick different topics with my family and friends, LOL. That helps. A bit. ;)

I'm just wondering if anyone else here feels like they are totally obsessing about celiac. in a way, I think it's a good thing, because you need to always be on your toes, and be on guard all the time. I spent a lot of time being careless about gluten, so i know how bad this can be.

dealing with celiac disease is like walking a tightrope or something, you can't afford to have one lapse, so being obsessed seems like a good thing, but i'm wondering if this could be unhealthy at a point?

It seems like it's all I'm interested in talking about with people, and I'm glad i'm trying to make others aware of celiac, but it gets old for a lot of people. my family has made comments, like i'm being too extreme, and get annoyed if i even mention it anymore.

i spend a lot of time thinking about it everyday. does this end?

Emilushka Contributor
Emilushka
Posted

It seems like it's all I'm interested in talking about with people, and I'm glad i'm trying to make others aware of celiac, but it gets old for a lot of people. my family has made comments, like i'm being too extreme, and get annoyed if i even mention it anymore.

i spend a lot of time thinking about it everyday. does this end?

If it's dominating your life, then that would be the point when it's too much. Maybe it would be better if you could organize your food more in advance so that it isn't such a constant thought. It's totally understandable that you would think a LOT about something this hard to control and this debilitating. However, you need to have a life that isn't dominated by Celiac Disease. Your life is yours, not Celiac's.

Make sure you're actively keeping some balance in your life. If you need a non-food hobby, maybe that's a way to start so that you have something to talk about that's not related to Celiac.

I kind of wonder if some of that doesn't go along with having a lot of trouble with it. My father and brother don't have much of a reaction, and they are both more laid back about it. Myself and my daughter get very sick and have had to research and struggle quite a bit to try and get healthy, and we think about it quite a bit more.

...

The talking about it - I've been trying to blog some, so I can get a lot of my talking about it 'out of me' and maybe pick different topics with my family and friends, LOL. That helps. A bit. ;)

I think these are really great points. The blog or using this forum as an outlet is a great way to keep your Celiac talk more focused. And it's a lot harder to not obsess over a puzzle you haven't solved yet, so if your Celiac is like a puzzle that can make you feel awful, you'd be pretty motivated to figure out how to solve that sucker! I could totally see how that would take up a lot more of your mental energy.

adab8ca Enthusiast
adab8ca
Posted

If it's dominating your life, then that would be the point when it's too much. Maybe it would be better if you could organize your food more in advance so that it isn't such a constant thought. It's totally understandable that you would think a LOT about something this hard to control and this debilitating. However, you need to have a life that isn't dominated by Celiac Disease. Your life is yours, not Celiac's.

Make sure you're actively keeping some balance in your life. If you need a non-food hobby, maybe that's a way to start so that you have something to talk about that's not related to Celiac.

I think these are really great points. The blog or using this forum as an outlet is a great way to keep your Celiac talk more focused. And it's a lot harder to not obsess over a puzzle you haven't solved yet, so if your Celiac is like a puzzle that can make you feel awful, you'd be pretty motivated to figure out how to solve that sucker! I could totally see how that would take up a lot more of your mental energy.

I thought I was totally good with all of this and would have no problems and I have screwed up at least 3 times in the last 3 weeks, so I am with you in the obsessing thing. I need to get organized with my food better, that is great advice that I knew intuitively but needed a reminder!

Still, this sucks sometimes.

Emilushka Contributor
Emilushka
Posted

I thought I was totally good with all of this and would have no problems and I have screwed up at least 3 times in the last 3 weeks, so I am with you in the obsessing thing. I need to get organized with my food better, that is great advice that I knew intuitively but needed a reminder!

Still, this sucks sometimes.

Honestly? It totally sucks all the time. But what I remind myself is that I'm lucky. Lots of people are stuck with diseases that require medications (and every medication has side effects and problems). I got stuck with a stupid autoimmune disease that can make me miserable ... but only if I eat the wrong foods. Honestly? I'll take it. You're right - IT SUCKS. It's not fair. There are tons of people who smoke and do drugs and are healthy. It makes me a little angry to think of those folks. But in the grand scheme of life, I really got lucky. My disease is treated by eating healthy foods. No meds required.

We can do this. This is why the forum is so helpful - when I need a reminder of how much it sucks but how well people are able to do with the diet, this is where I come. This is a place for grounding yourself.

You're not alone. Planning ahead and having foods available that you know you can eat helps a LOT. You can do this. We are all doing this together on this forum. Stick with it. It gets better.

adab8ca Enthusiast
adab8ca
Posted

[ But in the grand scheme of life, I really got lucky. My disease is treated by eating healthy foods. No meds required.

We can do this. This is why the forum is so helpful - when I need a reminder of how much it sucks but how well people are able to do with the diet, this is where I come. This is a place for grounding yourself.

You're not alone. Planning ahead and having foods available that you know you can eat helps a LOT. You can do this. We are all doing this together on this forum. Stick with it. It gets better.

burdee Enthusiast
burdee
Posted

I'm just wondering if anyone else here feels like they are totally obsessing about celiac. in a way, I think it's a good thing, because you need to always be on your toes, and be on guard all the time. I spent a lot of time being careless about gluten, so i know how bad this can be.

dealing with celiac disease is like walking a tightrope or something, you can't afford to have one lapse, so being obsessed seems like a good thing, but i'm wondering if this could be unhealthy at a point?

It seems like it's all I'm interested in talking about with people, and I'm glad i'm trying to make others aware of celiac, but it gets old for a lot of people. my family has made comments, like i'm being too extreme, and get annoyed if i even mention it anymore.

i spend a lot of time thinking about it everyday. does this end?

I think 'obsessing' about celiac disease is a natural part of developing a new perspective and learning skills we need to choose and prepare safe foods and negotiate safe choices in restaurants. Remember when you learned to drive a car? At first you obsessed about everything you needed to remember to get the car started, to back out of the garage without hitting anything, to enter a street safely, etc., etc. Soooo much to learn and remember. Navigating life with a disease which is controlled by diet is like learning to drive.

When I was first diagnosed with celiac disease, I read books, talked to friends with celiac disease, posted on this board, attended support group meetings and eventually led the group when the leader resigned. Then I was diagnosed with more food allergies. Instead of worrying about celiac disease, I learned the code words for my allergens, bought new allergy free cookbooks and experimented with recipes incorporating 7 food allergies.

Meanwhile I developed a series of gastro infections (bacteria, parasites and candida). Everytime I got a new gut bug, I obsessed about that bug and possible treatments, whether the treatment was free of my allergens, and eventionally began to wonder why I kept getting gut bugs.

Recently I found a doctor who solved my gut bug mystery by giving my blood tests which revealed why I was so vulnerable to infections. One reason was low thyroid function. So now I obsess over hypothyroidism, reading books and articles about the condition, post on a support group board and plan to attend a local support group meeting.

Maybe I'm an obsessive person. LOL However, I prefer to consider obsesssing a normal part of learning new skills and attitudes.

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I'm just wondering if anyone else here feels like they are totally obsessing about celiac. in a way, I think it's a good thing, because you need to always be on your toes, and be on guard all the time. I spent a lot of time being careless about gluten, so i know how bad this can be.

dealing with celiac disease is like walking a tightrope or something, you can't afford to have one lapse, so being obsessed seems like a good thing, but i'm wondering if this could be unhealthy at a point?

It seems like it's all I'm interested in talking about with people, and I'm glad i'm trying to make others aware of celiac, but it gets old for a lot of people. my family has made comments, like i'm being too extreme, and get annoyed if i even mention it anymore.

i spend a lot of time thinking about it everyday. does this end?

Yes, I am obsesed for sure. However I don't think it's a bad thing at all. I have always loved food and I have always loved cooking. Having to eat gluten free, soy free and mostly dairy free completely changed my relationship with food. In some ways it's like I broke up with a long time lover, but in other ways it's like I have discovered a bunch of new friends. I have tried foods I never thought I would like and I think I am actually finding more enjoyment in food than ever before. When I was at my sickest point I couldn't eat anything without feeling sick. I started hating food and hating to eat. Now that I have figured out some foods that I can eat safely it's like I'm falling in love with food all over again. But I also have a new respect for how ppowerful food is and I have new insight of how food is not just for pleasure but is fuel for our bodies. I'm obsessed with finding the perfect balance of health and taste. Today my simple food pleasure was a spinach salad with dried cherries, almonds and cooked chopped chicken with a french vinegrette dressing. Everyone else around me was eating sub sandwiches and I felt like I had a gourmet salad. I didn't feel deprived of that sub at all.

Now, I think if you are annoying your family by always talking about it, maybe you should cut back to only mentioning things when they are required precautions for you to stay safe-- like asking them to cover a grill with foil for you or something. You might also consider if there is anyway that you can take more responsibility to prevent cross contamination without asking them for accomodations. Can you prepare your own food more often when eating with the family? Or just show up with your own plate of food for an event without explanation. Today I went to a lunch where I didn't even mention my food issues or ask for accomodation beforehand. I did explain to the hostess once there why I had brought my own food but I just said I have multiple food allergies and left it at that. Now I'm all about spreading the word that people should get checked for celiac, but I've sort of learned that (at least in person) you can't do much to make someone get tested unless they are interested. I've also learned to stop talking and change the topic when I notice their eyes start to glaze over.

rdunbar Explorer
rdunbar
Posted
  • Author

Thanks for all your input, I'm really fine with obsessing about living gluten free, abd researching celiac, and celiac related things. It's just kind of wierd when you think about it all he time, like when you first wake up in he morning everyday, you begin to wonder

I just hope I'll get more used to it like burdee was suggesting. It just seems like there are endless ways you can screw up, and get exposed to gluten, you can't really afford to put it in the back of your mind

luckily, I was a chef ( and baker, arggg) for a long time, so don't struggle with the cooking and food prep part. I could find ways to prepare more meals at one time I imagine, which would save more time?

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

The thing is you need to always be thinking about it in order to plan ahead and take precautions. The only thing that might be unhealthy is if you find yourself stressed out while thinking about it. If you are always worried and having nightmares constantly then that's not good. I had some gluten nightmares when I first went gluten free and I find I sometimes have them when I'm stressed abotu something else. But for the most part I don't dream about it anymore (after 10 months gluten free). It is something that fills most of my daily thoughts, but it's not a thought process that makes me uncomfortable or overly-worried. I gues syou need to decide for yourself if it is a good kind of obsession or if it's interferring with your daily life. If the obsession helps you cope then it's okay to be obsessed, IMO. :)

revenant Enthusiast
revenant
Posted

I have been doing this a lot for the last few months! :o! It's just been such a struggle and overall life changing experience. It has also altered many of my perspectives and beliefs. When something comes seemingly as a miracle, I think we have every right to dwell on it. We're just trying to find a spot for it in our minds where it makes sense with our other perspectives and beliefs about ourselves and the world. A lot of those perspectives have to be re arranged, adjusted, for everything to click, it takes time, and.. well... can change one's life!

I have learned the importance of environment on many illnesses and health problems, I'm able to see that a large chunk of excruciating pain is unknowingly caused by something very simple. I feel like I am also physically waking up for the first time, re-discovering life, if you will. I think it is just a period of adjusting to such an eye-opener, and that it is completely reasonable.

SaraKat Contributor
SaraKat
Posted

I try to make it a point not to talk to my family and friends too much about it. I think about it on my own and discuss it with my husband- he is a health food freak anyway (even before I was dx'd) so he can relate. I just try to put myself in their positions, would I want to hear about their medical condition non stop? NO, so I try not to do it to them.

I've only just got dx'd 2 months ago, at first I talked about it a lot, but I know what I need to do and I try my best to do it.

realmaverick Apprentice
realmaverick
Posted

I think its good to be Vigilant. But I don't believe there are any benefits to being obsessive over it. Its not healthy to obsess over anything. When it's time to eat, ensure you're not eating gluten and for the rest of the time, forget you have Celiacs.

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