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Living Normally While Battling Celiac Is Like:

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I tried to live normally, for 30 years even though my body fought a horrendous war on gluten. I had been told to ignore my symptoms and live like they are not there. I had been told that my problems were all in my head. The Md lightlysaid to give up gluten, as if it were as easy as giving up excercise for lent.

I am thinking that Living normally while battling celiac is like: (Well perhaps I haven't tried all of these)

Drowning in a stormy ocean while ignoring the waves.

Picking up 100 lb weight and running a marathon.

Racing the 100 yard dash on an uncasted-broken leg.

Plugging in your computer in the belly of a fish. (I don't think Jonah did.)

.

If my mind is a little muddled, or the imagination a little too sharp what do you think you can blame?

Note, I have edited this to make it clear. Regretfully, the replies that helped me to know how to change it, may be confusing to future readers. I will take full credit for this, so please do receive them gracefully.

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Wow! That sounds pretty hopeless!

Perhaps if you feel this despondent you should seek some counseling? There is no shame in taking antidepressants temporarily if you need them. It can be a long hard road to get well, but it isn't impossible.

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Wow! That sounds pretty hopeless!

Perhaps if you feel this despondent you should seek some counseling? There is no shame in taking antidepressants temporarily if you need them. It can be a long hard road to get well, but it isn't impossible.

I see that you need some clarification, Karen. I have been frustrated with being told I am obsessed and am trying to help those who haven't experienced it to understand the experience. I actually am quite well and chuckling somewhat over some of my ideas. I admit plugging one's computer into a fish is really doubtful. I just can't understand how people can say just ignore it? When my friends are sick, I want to send flowers and cards. I don't expect them to live normal.

But I very much am still in the battle. Even though my 100lb load is mostly off!

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So...you are trying to say that a person with Celiac can not live a "normal" life? I don't find that very encouraging to newly diagnosed people.

For the newly diagnosed:

It can be an uphill hike for a while, but I feel I live a " normal" life. I make dinner, I walk my dog, I avoid cleaning my house as long as possible.... The only things I don't do the same as everyone is not eat a small part of the food they eat ( gluten). It limits me a little when eating out or traveling, but I have figured out how to handle it and have shared my techniques on this forum. I hope that is more helpful and encouraging to the newly diagnosed.

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So...you are trying to say that a person with Celiac can not live a "normal" life? I don't find that very encouraging to newly diagnosed people. Kareng

No I wasn't sying that at all.

I was trying to describe what it is like to have undiagnosed celiac. I am hoping that unsympathetic family members could gain some insight into what it is like. I also was hoping that others with celiac might read it with understanding. Yeah, that is what it is like! I also took it with some sense of humor as one must in order to survive.

I am talking about mostly what it is like when one is in the heat of battle. Before diagnosis and when first attempting gluten free. I am not talking about life after that. I don't know it yet, since I am still battling hard. I think you are beyond battling and into the new normal for you.

I hope that helps to clarify.

I am saying that gluten has caused much trouble, and while I was eating it, I was trying to go on as if nothing was wrong. Even after I learned of it, others be little the problem. I am looking at cascading waves and they say, "Just ignore it!" Right?!

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You wrote this in the "coping section" so, I guess I also interpreted it as you are finding this so difficult that it requires a herculean effort (it does sometimes, yes) and you are not doing well with it at all. It's not very clear, to be honest. I would not have guessed you were directing your thoughts to the family members of a celiac as you originally stated in your second post--until you explained it further.

The overall tone sounds very grim. :( Hope you view it differently now.

I've had to battle back from the near dead and I've been in physical therapy 2X a week for 2 years yet I do not think I am not living normally nor do I find this post to be very encouraging for the the newly diagnosed.

I do not find it encouraging for the "long diagnosed" me either.

Sorry, just not seeing that at all.

If you want to address friends and loved ones of celiacs, maybe you could write something more specific and put it in that section?

NOTE: I need to state here that Karen and I responded to the ORIGINAL post and posts # 2 and #3 that you made .

In all fairness, you have edited them so much now (after we asked you what you meant), so our responses look somewhat critical and disjointed. This is not the case at all.

Edited by IrishHeart

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I actually like living this way better...food-wise. I know I a, eating healthy now...never did that before.

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I actually like living this way better...food-wise. I know I a, eating healthy now...never did that before.

Great attitude!! :)

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.

Living normally while battling celiac is like: (Well perhaps I haven't tried all of these)

Drowning in a stormy ocean while ignoring the waves.

Picking up 100 lb weight and running a marathon.

Racing the 100 yard dash on an uncasted-broken leg.

Plugging in your computer in the belly of a fish. (I don't think Jonah did.)

That is what I think after 30 years. If my mind is a little muddled, or the imagination a little too sharp what do you think you can blame?

I mean in the battle. Hopefully, healing comes after the battle. My battle was mostly when I was undiagnosed.

I'm getting dizzy! This post is mostly the same but the other ones keep changing! ( editing)

This still sounds like you are saying Celiac is impossible but I give up. I can't follow it. I'm not sure what we are talking about now.

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Hmmm... I never saw the original post, so only responding to what's there now...

I at first thought this post was meant to be lightly humorous, in a dark humor kind of way, about the challenges many of us face. Like those "You know you're gluten intolerant WHEN...." threads.

Am I the only one who saw it that way? (scratches head)

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.

I'm getting dizzy! This post is mostly the same but the other ones keep changing! ( editing)

This still sounds like you are saying Celiac is impossible but I give up. I can't follow it. I'm not sure what we are talking about now.

That makes 2 of us! :lol: something got lost in translation and some major editing...... I think I'll just say good night.

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Hmmm... I never saw the original post, so only responding to what's there now...

I at first thought this post was meant to be lightly humorous, in a dark humor kind of way, about the challenges many of us face. Like those "You know you're gluten intolerant WHEN...." threads.

Am I the only one who saw it that way? (scratches head)

Thanks, but it sounds like you got it!! Thanks so much.

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Hmmm... I never saw the original post, so only responding to what's there now...

I at first thought this post was meant to be lightly humorous, in a dark humor kind of way, about the challenges many of us face. Like those "You know you're gluten intolerant WHEN...." threads.

Am I the only one who saw it that way? (scratches head)

The original post was unedited until 9 pm central, so actually you did see it. When I edited the post moments ago, I left the orignal intact, but for I added to the beginning and end.

Whew!

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I actually like living this way better...food-wise. I know I a, eating healthy now...never did that before.

Me too, when you put it that way.

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You wrote this in the "coping section" so, I guess I also interpreted it as you are finding this so difficult that it requires a herculean effort and you are not doing well with it at all. It's not very clear, to be honest.

I would not have guessed you were directing your thoughts to the family members of a celiac--until you explained it further.

The overall tone sounds very grim. :(

I've had to battle back from the near dead and I've been in physical therapy 2X a week for 2 years yet I do not think I am not living normally nor do I find this post to be very encouraging for the the newly diagnosed.

I do not find it encouraging for the "long diagnosed" me either.

Sorry, just not seeing that at all.

If you want to address friends and loved ones of celiacs, maybe you could write something more specific and put it in that section?

NOTE: I need to state here that Karen and I responded to the ORIGINAL post and posts # 2 and #3 that you made .

In all fairness, you have edited them so much now (after we asked you what you meant), so our responses look somewhat critical and disjointed.

I agreed that I could have been more clear about what I talked about. I saw that people would be brainwashed away from what I intended by the replies. I am sorry to make your responses look odd. I hope you will understand now what I meant to do and it might be a help to some. Now, I edited the first post also. If I hadn't, the real intent of the writing might have been lost. Then again Gatita found it.

This was inspired by a debate in another post. I avoided mentioning it to "Protect the innocent." Had I been willing to address it specifically it may well have been clearer, but less protective.

Thanks for helping me polish it up.

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It was like swimming through molasses.

THEN I changed my diet.

But I still had really slow dial- up internet access for a while, slower than whale warp drive :lol: , until I changed carriers.

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For me, it would be like trying to forget I didn't have any clothes on, on a nudist beach :P

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I worked as a dispatcher at a car auction, so I was in charge of the truck drivers who

went out and picked up the vehicles. Some days, things went great. Some days, it

rained or snowed or hailed or tornadoed or rained frogs or every SINGLE truck broke

down or eight people called out sick or...... So before I went gluten free, it was all those

days. Now, I only have raining-frog days every few months. Yay!

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Hmmm... I never saw the original post, so only responding to what's there now...

I at first thought this post was meant to be lightly humorous, in a dark humor kind of way, about the challenges many of us face. Like those "You know you're gluten intolerant WHEN...." threads.

Am I the only one who saw it that way? (scratches head)

This is also how I took the original post but I have a very dark sense of humor

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Swimming through mollasses, HO HO HO!

On a nudist beach, oh yeah!

Foggy and froggy days, tehetehetehe.

That is the sort of things I was thinking of.

Thanks

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I agreed that I could have been more clear about what I talked about. I saw that people would be brainwashed away from what I intended by the replies. I am sorry to make your responses look odd. I hope you will understand now what I meant to do and it might be a help to some. Now, I edited the first post also. If I hadn't, the real intent of the writing might have been lost. Then again Gatita found it.

This was inspired by a debate in another post. I avoided mentioning it to "Protect the innocent." Had I been willing to address it specifically it may well have been clearer, but less protective.

Thanks for helping me polish it up.

OKAY, NOW I get it .... Thanks for clarifying. :)And I have a dark sense of humor, too, believe me. I guess I was just confused by the original wording. and what you said was your intent (originally)........

Okay, then...

If you are trying to paint to someone that when first starting out on the road to recovery that it is like climbing uphill with weights strapped on your legs while rolling a giant boulder as a big buzzard pecks at your head, only to have it fall back down the hill every night and you start all over again the next day... heck, yeah, I get that part!!!!.

( and I hope you can see why I misinterpeted your original 3 posts as not being humorous, but rather as being a negative depiction of being a celiac in general-- because until you added things, it really did sound that way.)

Now, to me--it's just "the new normal". As sucky as it can be sometimes still, I'm good with it.

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Editing confuzzles me. Before celiac, after celiac, during the any crisis, it's still living day to day. Try not to forget that living part.

Colleen

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I have described pre diagnosis and recovery as like the week that you have all your final papers or dissertation to to get in on time, so you stay up late, have too much caffeine and chocolate, maybe smell a bit, can hardly string a sentence together. Only it has been going on for weeks.

(I hope I have the gist of the thing here :))

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Editing confuzzles me. Before celiac, after celiac, during the any crisis, it's still living day to day. Try not to forget that living part.

Colleen

Amen, sister! One joyous gift of a day after another.

(Not to derail the train here, but how's Florida? shoot me a PM when you can!! ).

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I just want to say that people should be able to come on this forum and express how they are feeling and get support not abused. I think perhaps some of those who dont have more complex issues or who are much farther in recovery have forgotten what it felt like in the beginning. If anything, newbies should know it will be a struggle at first. If everyone else on here acted like it was easy they may feel estranged and may be further plunged into hopelessness. It can make us feel we want to give up in the begi ning at times but on the other hand things will change as we learn more and give our bodies time to heal and become balanced.

Without research and people on here, I would not beging to know how to live gluten free and also would not have discovered other problems I have. It guided me through discovering a corn sensitivity, discovering I reacted to anything mold contaminated or fermented and even the period of time I had developed a salicylate sensitivity. I am very thankful and I hope we can remember what this forum is for.

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    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
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