How Long Did It Take You To Stop Hating Celiac?

[corinne]

I've never felt anger. I was scared before I had things under control. I had D up to 15 times a day and sometimes for 2 hours straight, cramps and sometimes vomiting. I was afraid that I would lose my job and someday not be able to leave the house. It was such a relief to have my life back. I am so glad I am no longer on prednisone and to know that I will be able to do the things I enjoy.

Having strong symptoms probably makes it much easier to accept.

[Emily Elizabeth]

I was very happy to find out what was wrong with me, but it only took a few hours for me to realize what all of this meant. I was very angry at first as I continued to realize more things that were going to have to change in my life. Now, I just get angry (and depressed) when I'm glutened. When my body is healthy I feel fine. I still forget sometimes that I have celiac though. It's like I'm in denial. I think the hardest part is when I realize that I can't ever have something again. Now I am doing that less and less though so it's getting better.

[JNBunnie1]

I think it was rather different for me because I never got an official diagnoses. When I was 19, I got VERY sick all of a sudden in the summer and it totally ruined my life for a while. My boyfriend had to bring me to the doctor's and the hospital once at one in the morning, I kept missing work, I'd pass out in the shower. For six months the docs did everything from CRP tests to a colonoscopy/endoscopy, absolutely no results anywhere. Then around Christmas I read something in a book that mentioned people who had a sensitivity to wheat. It had never occurred to me that what I ate could actually affect me in any way. So I tried it and it worked. I learned about celiac disease and the fact that I couldn't have rye barley and oats later. I was so unbearably relieved to have my life back that I couldn't have cared less what I had to give up. And the learning curve IS huge, I had rice pasta with meat sauce for two meals a day for over four months because I was still too tired and stupid to figure anything else out. I guess that after being so sick, I just don't care what I have to give up, I'm not willing to give up my life again and risk cancer and god knows what else for FOOD. I honestly feel kinda like I dodged a bullet.

[VioletBlue]

I'm still working on letting go of the anger. It's been a bumpy ride, being fine for awhile and then something happens to remind me of what I can't have or can't easily do and the anger comes back. It comes back with less and less force each time, but it's still very much there.

Yes, I was relieved to have an answer, but that relief doesn't make my life any easier.

Violet

[tom]

I'm also surprised at the number of positive posts. Maybe the angry ones are too pissed off to post.

I saw this thread when it was new and the first thing I thought was "we're supposed to stop hating the disease?".

I wasn't ready to even read the thread yet.

And I'm surprised at how often hating the diet is mentioned. I don't hate the diet at all. It's the only reason I'm alive.

But the disease cost me far too much. Even beyond the miserable years, the hellish years, and the year+ that I can't even bear to think about, my entire life would've been much different w/out celiac. I was diag as a toddler but since the understanding of the disease was so limited back then, gluten was re-introduced when I turned 5.

And I wasn't noticeably ill or doing damage. But damage was being done.

It doesn't matter whether anyone believes me, but I can say w/ 100% certainty that every single year for ~35 yrs would've been very different w/out celiac. (Or just w/out gluten re-introduced)

I've only just become "well" ~3 months ago and it's astounding to have a baseline mood of happiness that I never could've imagined was in my future. My brain works better than ever and I'm feeling better physically every week.

There's no reason to doubt that 99% of the days in the last 35yrs could've been happy instead of always trying to DO something that'd "make me happy".

I believe I'll get over the regret of "what might have been", but I don't know why I shouldn't hate a disease that took so much from me.

A few days ago I cried at the thought that neither of my brothers (we lost them both, the 2nd a yr ago) ever got to know the me that celiac kept locked away for 35+ years. Didn't see them enough during the braindead & joyless yrs and now that we'd enjoy each others' company SO much, it'll never happen.

I didn't always enjoy their company, or anyone else's for that matter but now I enjoy talking to anyone and everyone, all day long.

Like Dingo, it sometimes takes a reminder that there are many things that can be worse, even if such thoughts only push aside the lingering anger and regret temporarily.

Don't get me wrong - I don't walk around angry and it doesn't come to mind every day or even every week. I'm mostly focused on the good. But I sure wouldn't bet that, when it's really thought about, that I won't still hate celiac in 10 yrs.

Is it that different from expecting to still hate war and that children are starving somewhere in the world?

<shifting gears back to happy>

ahhhhhhh

[nikki-uk]

Gosh Tom! What a poignant post

I'm sure alot here can identify with the anger of the 'lost years' (my hubby included)

[ptkds]

I have to say that I will ALWAYS hate Celiac disease. I hate it because it makes my kids feel like social rejects. I hate it because it makes my 6 yr old cry, and my toddlers don't understand why I have to tell them no when they want some food that another child is eating.

I am grateful that I know how to treat all of mine and my kids problems, but I will never be happy with this horrible disease. ANd I hate that it is not more commonly understand by ppl around us.

Although, if it made me skinny, I might not hate it so much !! (j/k!!)

ptkds

[buffettbride]

I have to say that I will ALWAYS hate Celiac disease. I hate it because it makes my kids feel like social rejects. I hate it because it makes my 6 yr old cry, and my toddlers don't understand why I have to tell them no when they want some food that another child is eating.

I am grateful that I know how to treat all of mine and my kids problems, but I will never be happy with this horrible disease. ANd I hate that it is not more commonly understand by ppl around us.

Although, if it made me skinny, I might not hate it so much !! (j/k!!)

ptkds

I can't really add anything to that but I feel the same way. I don't have it but my DD does and I'd give anything to take it from her.

[EBsMom]

You know, even a week ago, I wouldn't have responded to this post. I've been so intent on keeping a positive spin on the gluten-free (and cf/sf for my dd) diet that I didn't let the anger surface at all. A friend of mine gave me some advice (very good, I think.) She told me that I would be the model for how to handle the dietary restrictions....that if I was positive, it would be more easy for my dd (and ds, but that came later) to be positive. So I WAS overwhelmingly positive in front of my dd. Since then (nearly 4 months ago) we've figured out that my ds and myself are gluten intolerant, so the diet is now a family way of life for us. And all through that, I've continued to be positive and "can do" about the whole thing. A couple of days ago, though....I was just having a stressful day, for other reasons.....this flash of anger welled up in me and really took me by surprise. I found myself considering all the things that had changed, and how this disease/diet would continue to make things more difficult (travel, specifically) and how it's stressed our relationships with certain extended family members....and I felt really angry and very sorry for myself. As someone else posted, though, I'm generally an accepting kind of person - I've dealt with hardships much worse than this in my lifetime - and so it was not that hard, after indulging in a personal anger/pity party, to find my way back to more positive ground. It definitely helps, in dealing with all this, to be a naturally glass-half-full kind of person.

Ali, I totally understand why this is so hard for you! If I were at the stage of life that you're at, I KNOW I would not find it easy to deal with this diagnosis and diet. I'm in my mid-40's, settled fairly well into a routine which gives me a lot of control over what goes on around me. My kids are still young enough (pre-teen) to be able to take this in stride, too....after all, they have me fending for them and making the diet easy for them. I think I would be so much more angry and unaccepting of this if I was where you are right now. You have every right to be pissed off! Anger is difficult to sustain over long periods of time, so I'm sure that eventually you'll settle into a more comfortable mental space. In the meantime, post here and draw on the support of all these people who are dealing with similar issues. I think to myself, on a daily basis, "Thank goodness for the internet"....all this wonderful community and advice/support at touch of a keyboard!!!

Rho

[imsohungry]

Personally, I still have days where I hate having celiac, and I have been diagnosed for years. I would be telling a lie if I said I was comfortable with it all the time. With every loaf of bread I make that deflates or crumbles or turns to a brick, I do feel frustrated. But I keep trying...and enjoy trying to cook and bake.

I am SO thankful for a diagnosis and SO thankful that with each day that passes, this diet becomes more and more "natural" for me. I don't think of Celiac as a disease; it's more like a way of life.

As everyone else has said, I am so glad to know that this is something I can take control over (without medication) and finally feel better! I'll keep baking crappy tasting bread as long as it takes to get it right!

Blessings. Julie

[tarnalberry]

here's what I don't get - celiac disease doesn't do most of these things. it doesn't make it hard to eat out, it doesn't make our kids feel ostracized, it doesn't make our family bug us about holiday dinners, it doesn't make us feel like social outcasts. we do these things, our families do these things, our society does these things, and our culture does these things - not this disease.

angry that your kids are ostracized? blame the kids teasing them, the parents who don't teach them it's not ok, and the culture that says that only wheat is normal. angry that you can't eat out? blame the busy chefs who don't care, the owners who care only about profit, and your own situation for not yet having identified a restaurant that you can work with. angry that you feel ostracized? literally, stop feeling that way and start including yourself again; you don't have to eat a bagel to belong.

I don't mean this to sound like a rant, the above paragraph is supposed to have a positive, 'can-do', let's make good changes, happy-attitude sort of tone to it (though I'm sure it won't come across right, because I lack that skill ). but that's why I don't understand anger at celiac disease. a gene isn't doing this, even a particular set of foods you eat/don't eat isn't doing this - it's the external surroundings and our and other people's choices in how to treat one another.

[Glutenfreefamily]

here's what I don't get - celiac disease doesn't do most of these things. it doesn't make it hard to eat out, it doesn't make our kids feel ostracized, it doesn't make our family bug us about holiday dinners, it doesn't make us feel like social outcasts. we do these things, our families do these things, our society does these things, and our culture does these things - not this disease.

angry that your kids are ostracized? blame the kids teasing them, the parents who don't teach them it's not ok, and the culture that says that only wheat is normal. angry that you can't eat out? blame the busy chefs who don't care, the owners who care only about profit, and your own situation for not yet having identified a restaurant that you can work with. angry that you feel ostracized? literally, stop feeling that way and start including yourself again; you don't have to eat a bagel to belong.

I don't mean this to sound like a rant, the above paragraph is supposed to have a positive, 'can-do', let's make good changes, happy-attitude sort of tone to it (though I'm sure it won't come across right, because I lack that skill ). but that's why I don't understand anger at celiac disease. a gene isn't doing this, even a particular set of foods you eat/don't eat isn't doing this - it's the external surroundings and our and other people's choices in how to treat one another.

As an adult I agree but as a kid or a teenager I dont feel its the same thing at all. As a parent you want your kids to enjoy life and to feel normal because being a "normal" teenager is still very hard to not feel different. Hormones are running amok and teenagers are very emotional. Fitting in and self esteem are big issues.

Yes your mad at the other kids because they teased your child but darn Im mad that my daughter is going to have to deal with it too. Being a teenager is hard enough without dealing with this. As a parent you always want (or at least should want) the best for your child, you dont want them to have to suffer through things you did and you certainly wouldn't be happy about something so sensitive as celiac especially when it comes to cross contamination. I always make the same exact foods others make at get togethers and thankfully at 3 1/2 it doesnt bother her but I know one day it will.

[MrsG]

Okay, there is so many people on this board who have the positive outlook on Celiac, I'm sorry, but I am still more bitter than I ever have been in my life. I'm stuck in the anger part of mourning. Just curious how long it took until you started to get that happiness back, and be able to be proud to talk about it.

Sorry if this is confusing, and if your time is not on the poll answers you can add a reply.

[DingoGirl]

At the time of my diagnosis, I was incredibly sick, impossibly anemic.....my ferritin (stored iron) level was 2 (should be at LEAST 75 for a woman of my stature and age), my hair incessantly was falling out by the handful.....I was in a permanent fog, sleeping about 16 hours a day minimum.....I could hardly walk my dogs, had to DRIVE them to the orchard 1/4 mile away, and sit against the fence as they ran. I was suicidally depressed, and cried nonstop (it didn't help that my almost-fiance broke up with me at the same time as dx).....I was bleeding internally (occult blood, probably from the polyp removed in colonoscopy), and....the night before the endo/colonoscopy, I lay sobbing in my bed, begging God to let me have cancer, so I could die. Seriously - - all I really wanted was to just go away....and I was praying for cancer as I did not plan on treating it. I had no strength for anything.

I was absolutely furious at the Celiac diagnosis.....becuase that meant lots of hard work and diligence on my part.....and not just fading away, as I had wanted.

I'm still mad at the inconvenience of the disease....but, my life has turned around in staggering and unfathomable ways. So....while I am not happy with HAVING the disease....I am blessed, as I think we all are, to KNOW I have it.

Now, onto an area in which I/we can maybe offer a little help - - -

With every loaf of bread I make that deflates or crumbles or turns to a brick, I do feel frustrated. But I keep trying...and enjoy trying to cook and bake.

Julie You have GOT to try this recipe!! I have made it three times (and I HATE to bake and cook), and it seems pretty much foolproof:

Open Original Shared Link

Let us know how it turns out. For me, it was at least one area that made me less angry....having decent, soft bread!

[JNBunnie1]

There's also the fact that learning the kind of self-control a child needs to learn with this disease will be VERY valuable to them later in life, and since when was ANY kid EVER able to have a 'normal' childhood? I mean really, did any single person on this board grow up without being made fun of once, or getting picked on, or not being able to join in something for whatever reason? The only thing that really bothers me in concern to kids with this disease is that they're actually in danger somewhat, from people who don't pay attention or listen to what the kid is telling them. You never know when a teacher who had a bagel for lunch is going to pour everyone a drink and touch the rim of the cup, you know? That's a danger for all of us, but much harder for a kid to be aware of, and so more dangerous. I just don't think kids need to eat 'normal' food to fit in, and it may be a good side benefit for their health NOT to be able to have Oreo's, however heartrending for the kid to give up his goodies. I mean, we didn't even have all this stuff a hundred years ago, it's probably good that they can't have it. I had a friend in high school who was really sick for a while and found out she had celiac and NOBODY CARED...............

[imsohungry]

Now, onto an area in which I/we can maybe offer a little help - - -

Julie You have GOT to try this recipe!! I have made it three times (and I HATE to bake and cook), and it seems pretty much foolproof:

Open Original Shared Link

Let us know how it turns out. For me, it was at least one area that made me less angry....having decent, soft bread!

Hey Susie,

Thank you...I definitely need "foolproof" recipes in the kitchen. I am getting quite good at making muffins, but I still crave that loaf of bread.

Blessings. Julie

[bknutson]

I was really relieved to know what I had so I could do something to make it better and gain some strength back. It was hard a couple of times when we would have a big get together at olive garden or something but for them most part I have just been gratefull it wasnt something worse. I work in a elementary school lunchroom. And I see Down syndrom children And ms chileren and several others and these are little children. I count my blessings. I have lived my life and if all I have to do is not eat something well so be it. Sometimes I do get something I shouldnt and I pay the price and I am sick. And ya know at least I know it isnt a death sentance like cancer. So we need to cheer up and help each other cheer up and work together to work on this miserable illness. I dont like it. But I dont like the common cold either. Take care every one.

Barb

[loco-ladi]

Not long ago I read an article about a teenage girl who passed away from an allergy attack after kissing her boyfriend.... That story helps me keep in focus how easy I have it with living gluten-free...

If I kiss my hubby and get a cc issue, I wont die from it, sure its not going to be fun for a while but no death will occur from it, he doesnt have to live in fear every second of every day that a simple touch will end my life...

Yes living gluten-free is inconvient as *ell not to mention expensive and everything else that goes with it, but think about the brighter sides of things...... if you kiss your "significant other" you most likely will be alive the next day.