Does Anyone On Here Forget That They Have celiac disease Most Of The Time?

[em2005]

Hello...

Haven't posted in...um....almost forever, but thought I would pop my head in again!

I've been reading a lot of posts that talk about how people are frustrated an consumed with celiac disease, etc... but does anyone on here hardly *remember* that they have this condition? Don't get me wrong, I am always very vigilant about food I eat, etc, but I always find myself being reminded (usually by other people) that I actually do have this condition. Say, if I am filling out a medical report for a new doctor/practitioner, it will frequently skip my mind that I have something that I should be putting down. Or, if I'm filling out a health related questionaire, I may not think of it until the last minute... Or if I'm with a group of people (usually in a work setting), and someone asks about food allergies, it will take me awhile to clue in (while other people that I know are starting at me, waiting for me to answer! ha ha) that OH YEAH, I do!

Anyone else get this?? Or is it just me... ?

-em

[Lisa]

Well, yes, I do...

When you start to feel "normal" again and you're not running to the bathroom, Yes.

I can handle the D issue, because that is a defined clue, but it's the brain fog and fatigue and malaize that I just can't handle. And that is what keeps me diligent. But most importantly, it is my friends here on this site that keep me safe from myself. Those that have lifted me up, when they can't can't lift themselves up. How many of them sit in wheelchairs, have diabetes, have MS and various other inflictions.

Yes, you gotta keep on truckin.

Lisa

[beaglemania]

no, I always realize I have it.

[Sarah8793]

Hi,

No, I'm definitely not there yet. But then again I have only been gluten free since May. Sounds like you have healed well and are doing great.

Sarah

[CarlaB]

I look forward to getting to that point. Unfortunately, I haven't really gone more than a few days or a week where I have felt good. When I first went gluten-free, I felt so much better immediately for a few weeks, but haven't had that again yet. First it's one thing, then another. I think I finally got to the bottom of my intolerances and allergies, but within a couple days came down with a virus, so I'm sick yet again. I hope when this virus clears up I will feel that way.

I can see how it can get like that. For me right now, I'm afraid to eat out, and I used to eat out frequently, so my whole life is still in the process of changing. Once I get settled in and feeling better, I imagine I will feel like you do. It won't be so much in the forefront.

[Nashville]

I rarely forget that I have it — just because I am always around food. Whether it's walking by a vending machine at work or driving past a restaurant, I'm always reminded of stuff I can't have. I'm not complaining — it's a fact that we have to deal with!

[lindalee]

Have been going gluten-free since Feb. and have so much to learn. I think about it all the time, have all kinds of books I'm reading now and this fantastic group here that helps me understand alot. I'm like Carla, used to go out all the time to eat and now I really am afraid too. Went out today for lunch and even called ahead to the place a bunch of us were going - figured out what I could probably eat - got there and chickened out and ordered a baked potato and green beans and I'm not doing nightshades and beans now---Oh, Well

[ebrbetty]

no I never forget it, there are so many things I can't eat besides gluten.

I'd kill for a sub or real pizza and everytime I think this is for life I get very sad, it scares me to think about getting very old, not able to cook or drive to the store for organic foods..what will I do? starve, its not like I can nuke just anything or call and order in!

[Lisa]

It is just a mind game. You eat poorly you get sick you eat safely, you don't......it's just too simple.

I just can't handle something messing with my mind. Which it has, by the way, and I will tollerate any more.

For all the newbies out there...this is so way beyond bread and pizza....it is about saving your life giving organs, your BRAIN and so many, many others.

The risks are so dangerous, buit the saving grace is that it is sooooo simple.

Live gluten free, and kick up and just live.

end of lecture.

Lisa

[elonwy]

I don't know that I "forget" but I'm much more chill about it. Its no longer "I have Celiac DISEASE" its more like, this is just how I am. I eat funny, I scrutinize everything, it takes me longer than other people to order, etc, etc.

Its a comfortable routine that is occasionally upset by a supposedly gluten-free product, or someones hap hazard crumb slinging in a kitchen. Then I feel crappy for a couple days or a week, then I feel better and its back to normal. My focus is now about reclaiming my life rather than totally devoted to figuring out how to live this way.

I've been gluten free a year last month, and thankfully, its all just habit now.

Elonwy

[em2005]

excellent replies!

It is interesting to hear all of your stories. I have also been there, in your boat...always thinking about it and what I can't eat. I guess on some level it is always with me, but as one poster pointed out, my actions and thought processes are so much a part of me...it is just so ingrained in me, that I don't even think twice about doing the things I do (reading ingredients automatically, asking the server about ingredients, manipulating recipes, etc)... I just think of it as normal and it's not until it's pointed out to me or the situation arises that I actually remember WHY I am doing all of this. Oh yeah, right... I have celiac disease..duh, i thought everyone was like that. It's funny, one time I was in the grocery store and looking on the labels of everything that I picked up (this is when I was in uni.) and a girl I knew from school was there and she must have been watching me for a bit, and then came up to me (knowing that I had "food allergies") and said "Man, must be a bummer to have to look at ingredients all of the time." And honestly, it took me a bit to actually clue into what I was actually doing. Another time I went to a holistic doctor and during the 1.5 hour long question and answer period, we had gone through some background and health complaints, and it was only far down the list when I actually remembered "oh yeah, and I have celiac disease, too...if that helps."

Anyway, good luck to you all out there. I know it is a tough battle at times and oh-so-frustrating. I have my moments, too... but mostly...it's usually all OK.

cheers!

[tarnalberry]

sorta. in the same way that I 'forget' that I have asthma. I don't think about celiac when I'm at home or planning what I'm going to cook - it's a matter of what I cook with and what I don't (I don't cook for lard, for instance), so I sort of 'forget' about it there. but I am hypervigilent in restaurants and other people's houses.

[frenchiemama]

When I'm at home, or just eating my packed lunch at work. I almost never think about it at home.

But when it's time for me to go somewhere, or when everyone is talking about some great new restaurant, I'm very aware.

[schuyler]

I wish I could forget, but I'm not at that point yet.

Right now, my brain fog is so bad that I can barely think straight, let alone type a coherent sentence. It makes it hard to forget.

I'm looking forward to the day that I don't have to think about it during all my waking hours

[2kids4me]

For our family it was very difficult to not think about it initially, so much to learn, read labels on everything, learn how to bake with different ingredients, educating family.....walking into stores was daunting at first - it felt like walking into a foreign country.

We have diabetes to work around too - we had to figure out carb counts of gluten-free foods and see how they affected blood glucose levels.....I felt like I landed in another country and no one told me I was going there.

Fast forward 2 years - just like the diabetes - it has become the way we eat and the way we live our days. Its something we just do - like putting on your shoes in the morning - my son and I take our insulin - its just what needs to be done. If the focus of our day was the needles and the gluten-free food - then I think we would be letting the disease rule our world - it limits you if you let it.

We have pizza - its just gluten-free, we eat cake and cookies and ice cream - but in measured amounts and gluten-free. We eat pasta (love brown rice noodles), and rice and found that we love quinoa - never would have known about it had we not been celiac. We appreciate the fruit and veges section of stores cause we dont have to read labels! We can still have chips and cheesies (gotta love Hawkins ) Both kids and myself appreciate how well we feel and lucky to have found out why the kids felt so crappy, and that there is insulin for my son and I. Without it I would have been dead before they were ever conceived....or my son would have been dead before we ever knew he was celiac.

We could resent the needles every day and feel sorry for ourselves about gluten-free, but then we would never be happy. You can enjoy the foods you prepare and savour the taste or you can look over at someone else and wish you could have what they are having. Maybe they are looking at you and wishing they had curly hair or straight hair.

It is hard and it is normal to have days of self pity but dont let it rule your week.

HAPPINESS IS NOT HAVING WHAT YOU WANT......BUT WANTING WHAT YOU HAVE.

[mythreesuns]

I am SOOOOO not there yet! LOL

I'm less than a month into this so I'm sort of still obessed with it. I have eaten out twice (which is a great reminder) but neither time did it turn out well.

I'm finding it quite possible that I could become OCD about gluten contamination.

[ravenwoodglass]

I don't dwell on it, but there is no way I can not think about it. When I look at my hands it reminds me, when I stumble or have to catch myself because I got a trace amount somewhere, when I look at my family and all the damage celiac did to our bodies and relationships I am reminded. When I pick up my blood sugar test kit I am reminded. When everyone around me goes to dinner or to visit my DD in college I am reminded. When I think about my ability to work outside the home, or the struggles I went through just to be able to be comfortable going to a store I am reminded. I am not bitter, but I am at times sad. Celiac took an awful lot away from us, trips to the beach, movies, walks by the lake, it kept me from graduations for my children, kept me from allowing my childrens freinds over to play. I don't blame celiac and I don't resent celiac but I am still, 4 years after being finally diagnosed very angry with the doctors that insisted everything was 'in my head'. If they had only listened things would have been very different for us in many ways. Do I ever forget it, maybe if I had been diagnosed when I first got sick I could but it took the doctors 45 YEARS - 15 of those so sick I could not function before doctors even thought to look for it. But hey it has made me a celiac nag both on the computer and off it. That nagging has gotten others diagnosed so all those years of pain at least do some good.

[Luvs to Scrap]

I am so encouraged by those of you who are at the point you forget sometimes. I myself don't have celiac but my DH and DS have it. Since June when we discovered DS has it I feel like all I do is live and breathe celiac and gluten free. I am reading books, trying new recipes and trying to figure out how to send him to Sunday School, preschool and other things kids do. I am hoping we catch on soon so that it can just be part of life and not such a huge time commitment and burden. It is thrilling to find a recipe that tastes "normal" and find gluten-free meals that DS will eat. Hopefully after the first year we will know what is going on. DH has been on the diet since Oct but I keep learning more things we should be doing or not doing. I so much appreciate this board. I have learned so much since finding it. Like my DH said yesterday--it is so encouraging to know we aren't the only ones out there. You are all great Kendra

[schuyler]

We could resent the needles every day and feel sorry for ourselves about gluten-free, but then we would never be happy. You can enjoy the foods you prepare and savour the taste or you can look over at someone else and wish you could have what they are having. Maybe they are looking at you and wishing they had curly hair or straight hair.

It is hard and it is normal to have days of self pity but dont let it rule your week.

HAPPINESS IS NOT HAVING WHAT YOU WANT......BUT WANTING WHAT YOU HAVE.

Excellent point.

[jkmunchkin]

Yes and no. I never forget I have it, but at the same time I pretty much know what I can and can't eat and it's not until I want to try something I've never had before that I'm reminded that I have celiac and have to read the label before I can eat it. So I guess like some of the others have said, I don't dwell on it but I'm always aware of it.

[carriecraig]

Yeah, I do sometimes forget that I have it. I have been gluten-free for over a year, and have started to feel really good the last couple of months, and don't think about being sick because I'm not running to the bathroom all of the time.

Too all of you newbies out there, there is light at the end of the tunnel!!!

[floridanative]

I don't know that I really forget it, I'm just not thinking about it that much anymore. I know what I have to do to eat at home and out safely and I do it. It's much easier now than when I started. I'm still not used to how others seem to think that not eating wheat items is the end of the world....guess I never knew how many people were out there with serious food issues. But I feel great that my anemia is gone and I have found more great foods to eat than I would have ever known without Celiac. I have pretty much settled into my new *normal* and it feels pretty good. And I think DH is relieved that after 17 years of me rarely cooking I'm quickly becoming the family chef.

[PJKR]

Hi I'm PJ. I'm a newbie to this Celiac forum but not to being gluten-free. My youngest son and I stopped eating gluten about 4yrs ago in the summer. If I'm eating at home I don't think about it. We rarely eat anywhere else so it's not a common worry for me. I've already gone through "let's find every restaurant that serves gluten-free food and try it!" Stage.

Restaurant food is generally too rich and I can't tolerate too much even if it is gluten-free. It's ok to even eat at my dad's house. After a couple times of me being sick(breaking his heart) he's as careful as I am now. My DH,my dad and friends are all so supportive. It means so much to be around people that don't discount me as a "flake with a food issue". Making it easy to feel normal and follow the diet without getting defensive or feeling like an outcast. PJ

[taz sharratt]

Hello...

Haven't posted in...um....almost forever, but thought I would pop my head in again!

I've been reading a lot of posts that talk about how people are frustrated an consumed with celiac disease, etc... but does anyone on here hardly *remember* that they have this condition? Don't get me wrong, I am always very vigilant about food I eat, etc, but I always find myself being reminded (usually by other people) that I actually do have this condition. Say, if I am filling out a medical report for a new doctor/practitioner, it will frequently skip my mind that I have something that I should be putting down. Or, if I'm filling out a health related questionaire, I may not think of it until the last minute... Or if I'm with a group of people (usually in a work setting), and someone asks about food allergies, it will take me awhile to clue in (while other people that I know are starting at me, waiting for me to answer! ha ha) that OH YEAH, I do!

Anyone else get this?? Or is it just me... ?

-em

yes untill i have toeat

[cmom]

No, I never forget. There are things everywhere to remind me. However, it was exhilarating once I healed enough to enjoy myself and forget about bathrooms for awhile!