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danikali

Are We Never Going To Be 'normal' Again?

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Well, I've been reading a lot of posts right now because it's a pretty slow day at work. And my new question is, when we get diagnosed with Celiac Disease, does that mean that we will always ALWAYS have those little weird things going on with our bodies?

Okay, I know, eventually, our gut heals, and we can feel 'NORMAL' longer, but should I just accept a future with down times and up times with Celiac Disease?

I guess what I'm trying to say is, I know that if you have Celiac Disease, you are not normal because you can never have gluten again and that also comes with a HUGE list of 'never anymores' but will my body ever work like a normal person if let's say I want to overindulge on hot chocolate or processed foods one day.

Am I confusing you?

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No you're not confusing me, lol. All I can say is I HOPE we can be somewhat normal again.

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I am new too, so I can't answer your question. I can say, I doubt I will ever feel like a normal person. I mean, my family looks at me like I am a freak when I speak of cross contamination issues and such at restaurants. They simply don't understand that it isn't just a BREAD issue!

That being said. I love the pic of your wedding cake. How are you getting it done gluten free?

Monica

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Good! I'm glad you both understand what I'm talking about. So I take it that you, Monica, have just accepted the fact that you won't be 'normal' ever again. Because that's what I'm starting to think too. And you know, the scary part is, sometimes I wonder if I really am a freak because I am SOOOOOOOOOOOOOO OBSESSED with CC and wondering if I am getting all of the 'possible gluten' on my hands when I wash them, drinking out of cups in the coffee room that are in the middle of the stack and double checking to see if there is any residue from anywhere, etc.!! But it's like, how careful can we really be without literally turning into a person with OCD on top of Celiac!

I'm also turning into a really jealous person. Jealous of everyone around me who doesn't have to constatnly think about this and wonder why their knees are hurting again all of a sudden and stressing over possible CC, etc. Ugh.....

But regarding my cake, thanks!! I don't know how I'm going to do it yet! hahaha, but I do know how WONDERFUL all of the gluten free cake that I've had is, so I'm thinking, no one will know the difference!!!! hahaha.......I'm hoping!

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I am new too, so I can't answer your question. I can say, I doubt I will ever feel like a normal person. I mean, my family looks at me like I am a freak when I speak of cross contamination issues and such at restaurants. They simply don't understand that it isn't just a BREAD issue!

That being said. I love the pic of your wedding cake. How are you getting it done gluten free?

Monica

Monica,

I sure can relate to the part about your family thinking your a freak! ;) I was trying to talk to mom about all this, and she said I just was looking for more to worry about....she also said she would never go out to eat with me again, "It's just too weird." :(

But on the lighter side, my husband is more then supportive!!!! :D

I love the cake too! I haven't tried any of the gluten-free cakes yet! Do you have one that you would recomend?

-Lollie

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Actually, I'm answering myself. NO. If any of you out there disagree, please explain.

I just have to accept this......I guess I never did before.

(I'm growing guys! :P )

Oh, and about my cake, thanks so much! I know, I fell in love with it when I saw it because I LOVE LOVE LOVE bows, and pink! (even though my theme isn't pink because it's too cliche) Anyway, I forgot the last one that I had, but I made it over Christmas time. It was a vanilla cake mix and was free of everything! GLuten, soy, yeast, etc. etc. etc. all of the things someone could have a problem with. Anyway, it came in a brown bag and I was in Chicago at the time, so I got it at a Jewl in their gluten free section. Everyone loved it and ate my gluten-free cake over the regular ones!!! Very moist and spongie, perfect!

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I am a normal person. I just happen to have an autoimmune response when I eat gluten. Celiac has never stopped me from doing anything (except for once going to Mexico :( )

-Jackie

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I completely understand as well! I am so obsessed with CC and always washing my hands, "re-cleaning" silverware/plates that come out of the dishwasher, etc. I cringe at the sight of gluten crumbs my boyfriend leaves around the apartment...won't eat anything that is not made by myself or prepackaged from a store (obviously products that I know are gluten-free). Those closest to me (sister, boyfriend) understand why I am this way because they have witnessed first-hand how sick I get (5-7 days of misery!) when I get even the slightest amt of gluten...

But in front of others I feel like a freak. My friends are wonderful and they always try to make gluten-free things for me. However, even though the ingredients are gluten-free, I never know how careful they are preparing the food (like, did they use the same silver-ware to mix something that had gluten and then use it in making my food??)...so I always have to beg them not to do anything special for me. I don't want to seem ungrateful...and I so appreciate everything they do...

But I am soooooo scared of getting sick. Sometimes I get so sick that I am doubled over in pain for 24 hours...the worst pain I have ever felt! No food is worth that!

I am petrified of eating out, to the point where there is no joy in it...so I hardly go out anymore.

I make myself feel better by saying that I am 32, diagnosed with celiac when I was 29...and only had symptoms for about a year before that....so for about 28 years I ate whatever I wanted and lived it up! (won't think about the damage I was doing to my body without having symptoms)

I am perfectly content making meals at home and still enjoy all the food we can have, but my life will definitely never be "normal" again! SOrry for the wild ranting! :)

Megan, MA

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I am a normal person. I just happen to have an autoimmune response when I eat gluten. Celiac has never stopped me from doing anything (except for once going to Mexico :( )

-Jackie

Haha, yeah, of course we are still ourselves, but I mean, feel normal ALL OF THE TIME. I think for some, it's possible and for others, maybe not?

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sometimes I wonder if I really am a freak because I am SOOOOOOOOOOOOOO OBSESSED with CC

I feel the EXACT same way! I only have had symptoms since about 2003, that I know of. But toward the end of last year, they were AWFUL! I don't want to feel that way again! I had pancakes over Memorial Day at my MOM's, I ended up in the ER! :ph34r:

I think NORMAL is a general term. Who really is normal? Who eats normal? That kind of thing. For me, I think I will always feel odd for this. Eating out is too much work, so I typically don't bother! My parents are here so yesterday I went out to lunch with them. Jason's Deli. I did the salad bar, I won't do that again. I am sure either something I had had gluten in it or there was CC. Yesterday I had horrible Gas and today the big D! So today, MOM was like, we can just go out for dinner tonight. I was like NO THANK YOU! I want my stomach to settle down before I try that again! LOL :P She doesn't understand and my husband thinks sometimes I go a little overboard.

For me, the bloodtests showed elevated levels (whatever that means) and the endoscopy came back clean. So to my husband, at best, he feels I am intolerant. (which I believe if abused will show damage eventually) So he thinks a little here an there, no biggie. I try to hide my discomfort because I just seem like I have stomach issues all the time. Prior to the Celiac stuff showing up, I was sick 1 year before they discovered my gall bladder was shot and I had a major Hiatal hernia. So see, I can see why someone looking at me would think...GOOD LORD you are constantly having tummy issues. LOL

Monica

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I know I'll never completely be the same person I was before. Not to be too dramatic, here, but this thing is kind of a NEW reality for me. There are positives and negatives that come with it. The negatives are the obvious ones --the pain in the ass stuff that we all have to deal with now on a daily basis. Comply--or get sick, it never stops. But on the positive side, I have become better at putting myself in other's shoes and realizing that a person may be acting a certain way because of an illness or other problem..I'm less judgemental and definately working on living in the moment. As far as feeling physically normal, I hope someday I won't react to so many things, and will only need to be careful of gluten. I could live with that.

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Dani, will you have a full blow reception? If so, what GLUTEN FREE food will you have???

I love talking about food! ;)

Monica

As far as feeling physically normal, I hope someday I won't react to so many things, and will only need to be careful of gluten. I could live with that.

Can I ask what you mean by that? If you were diagnosed with Celiac, how will you only need to be careful of gluten. Is it because you are intolerant of many different things?

Monica

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Monica--yes, I have become sensitive to several things since going gluten-free. Soy, eggs, tapioca, dairy, coconut, legumes, almonds, rice (any more than once a week or so) and corn. I tend to eat the same things over and over because I know they won't make me sick.. I am afraid that I will become sensitive to some of the things I eat daily because I know it's better to rotate foods. I am considering having food intolerance blood testing to try and determine which foods I can safely add. At least for a starting off point.

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I was strange before so, this hasn't changed anything in that respect. Just I will be a gluten-free person forever. Let us not think of ourselves as abnormal but that we are more normal than those eating gluten. How many of them are having problems and not knowing why? I prefer to think we are special, the chosen ones of the gods.

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I think what you're asking is are you going to continue to live with these on and off pains regardless of how careful you are with your diet. Some people do have to live with problems due to many years of undiagnosed Celiac. For some the problems will stay with them....others will feel completely normal (physically) as long as they avoid gluten. It pretty much depends on the toll the disease has taken on your body, how fast of a healer you are and whether or not there are other undiagnosed problems. Everyone is different so healing time and complications due to Celiac will vary with each person. Personally I believe I'll be back to normal (pain-free). For me I think gluten is just one big piece of a puzzle but I'm still missing a couple pieces so not getting the whole picture yet.

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For me I think gluten is just one big piece of a puzzle but I'm still missing a couple pieces so not getting the whole picture yet.

Yes! That's how I feel too!

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Guest nini
I was strange before so, this hasn't changed anything in that respect. Just I will be a gluten-free person forever. Let us not think of ourselves as abnormal but that we are more normal than those eating gluten. How many of them are having problems and not knowing why? I prefer to think we are special, the chosen ones of the gods.

LOL! A woman after my own heart!!! I was strange before too, I've been "the freak" all my life... it's only since I got dx'ed and started getting well that I feel "normal" for whatever that is worth! I definitely think we must be the chosen ones of the gods! Our systems have to be more pure or somthing!!! LOL

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Guest BERNESES

I know what you're saying. And I do think that yes, you WILL feel physically normal some day. I think about how much better I feel one year into the diet that I can't help but believe that it will get better.

As far as "normal" in the other sense, I think of it this way. Everyone, and I mean everyone, has their challenges. You may not see it on the outside, but they do. I always like to think of myself as having Celiac's, not a Celiac. It doesn't define who you are, it's just a part of you. And it does take time to accept.

Your cake will be gorgeous and tasty! I think the yummy cake you were referring to at Christmas was Namaste. I made their brownies at Christmas and everyone ate mine over the regular ones too! Psyched!

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But it's like, how careful can we really be without literally turning into a person with OCD on top of Celiac!

Hi,

This is my first post here for many months, following a very frustrating time getting an officaial diagnosis of celiac disease, which was then follwed almost immedaitely by a masive OCD relapse. Yes, I have BOTH.

No, the celiac disease diagnosis wasn't the cause of my OCD relapse - but I know that last summer following my 'unofficial' dx I WAS obsessive about the gluten-free diet - so succesfully that when I had first biopsy only six weeks in it came back -ve. So back to eating gluten, followed by another biopsy in Sept/Oct, which came back+ve! Consultant actually said that I must have stuck rigidly to gluten-free diet for my biopsy to come back totally -ve in only six weeks.

However, what I WAS trying to say is - yes, please be careful - but please do not let yourself get so worried about cross-contamination etc that it frightens the life out of you. That's what it literally feels like when you have OCD - as though you are being frightened 'out of your skin'. It's something I wouldn't wish on my worst enemy (if I had any). It makes you feel 'crazy' (although I hasten to emphasis that is NOT actually true) and it's very hard to be happy and fulfilled when you feel constantly scared stiff.

I don't underestimate the problems we face following a gluten-free diet, but I know that most of us can still have a very good quality of llife with it., without needing meds and/or therapy, which is not the situation for many sufferers of OCD.

I must admit I was devastated when I got my final +ve dx, beacuse I remembered how hard the original 6-week only gluten-free diet had been. Yes, even now I get upset at not being able to eat those things I used to and eating out is a nightmare. But I know I can live a happy and fulfilled life with this - it's that that makes us 'normal':)

Any way, that's my little 're-introduction' over - didn't mean to be so serious:)

So to sum 'me' up - I'm a 'normal' person who has celiac disease who occasionally feels 'crazy' (but isn't) because i also have OCD.

THanks for reading, and take care (but not TOO much)

Ruth

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I think you've got an impossibly high standard for 'normal'. By what I'm reading from you, asthmatics can't be normal. Diabetics can't be normal. Those with flat feet can't even be normal. Or those who have to wear corrective lenses can't ever be normal. Never mind the other myriad of conditions/diseases/differences among people. The world is too varied for 'normal' or 'average' to have any real meaning in a single person's life, so I don't think about it. If you're worried that other people are going to look at you funny, that's different - it's not really an issue of being normal/not normal.

None of that is to say that it's easy to adapt after learning that you have to go gluten free. It's not a piece of cake; it's not trivial. It's a hard habit for anyone who lives where wheat is ubiquitous. And you may be different from other people in that one way, but they're all different from everyone else in other ways as well.

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Guest BERNESES

And if you think about average in terms of a bell curve, half of the people fall above and the other half below :D

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I am trying to come to terms with the fact that what used to be normal for me no longer is. The physical part is starting to go back to normal. I have further to go in the emotional arena. For me I am trying to redefine what my normal is. I let you know if it works :P

Hez

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I think this question is very interesting, b/c i dont really understand... For me, i never really felt "normal" in terms of my digestion problems b/c i was sick ALLLLL the time. I mean, everything i ate made me sick and i knew that could not be normal. Did i worry about what i ate? no, everything made me sick so why bother. But i find myself MUCH more normal now that i can eat and not get sick after every meal! In fact, i never knew what normal was until i went gluten free. So yes, its frustrating to have to explain it to friends, waiters, chefs, etc. But I finally feel normal b/c i know the right thing to do to fix my body and i am on the road to recovery- after 24 years of damaging myself with food. Dani, i know u are not there yet, and i agree w/ Rachel that not everyone is 100% cured on the gluten-free diet- it probably depends how much damage u have to mend, but did u really feel normal when u were ingesting gluten?

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