Living Normally While Battling Celiac Is Like:

[cavernio]

I'm not 'normal' if I can't eat anything but food I prepare. I don't know what plane of existence all you other people are on. It is becoming my normal, but that's not exactly the same thing.

[gatita]

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!

Raining frog days... LMAO!!!!! Not going to forget that image...

[Takala]

It's a trade off. If I live just like a person in the 1800's, only with a kitchen out of the 1970's, I can have a life that can pass for somewhat normal circa 2013, other than... right now the lifestyle online magazines are taking cues from various lobbyists that they should portray my peer group as having a form of obsessive compulsive disorder regarding food prep. THIS from the same people eating crap junk for all their meals, while I am eating healthier whole foods, displaying great self- control, and have performed thousands of repetitions of physical therapy and other exercise so I don't have to whack them with a cane or run them over with a some sort of mobility scooter. Hence when Psychology Today has writers critiquing the upcoming American Psychiatric Association Diagnostic Standards revision, which includes how 'shrinks are going to look at unresolved "IBS" as a possible psychosomatic illness, (aka "it's all in your head") y'all had better start paying attention.

They aren't going to stop. They feel threatened by people who can, somewhat, control their physical destiny, without massive doses of a regulated substance dispensed in little pills.

[Celiac Mindwarp]

I would say my life isn't normal at the moment.

I am optimistic by nature. But I have been thoroughly tested by this illness.

I keep smiling, and it helps to see those further along who are recovering. I am tremendously grateful for that.

I would agree we need to be able to share the hard stuff too.

Humor helps enormously, dark and otherwise.

I don't feel very articulate. I kinda understand the different points of view. But I hope people still feel able to share whatever is going on, good or bad. It seems the most important thing.

Please don't shout at me for saying so

[IrishHeart]

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.

The majority of us answering here have not had an easy recovery at all.

I lived in hell for 5 years. 3 prior and 2 after DX. I'm still working on it.

And it is because of that --that we remain here, helping on a daily basis, writing threads for the newbies, etc.

Some of us just do not think that being a celiac makes us "abnormal".

It just makes it "the new normal".

No one forgets.

If we forgot, we would not still be here helping.

The ones who have an easier time of it, heal and are long gone from the Forum, hon.

I think you are misinterpreting what transpired here and Diana has clarified things and she understands how her original posts (3 of them--most of which no one can see because they are gone--they were edited out by her) may have sounded very negative and confusing to readers. She sees it and is okay with it and so, we have moved on.

It's all good.

No need to feel anyone is being abused. This is a loving community.

[kareng]

Before she added/ edited, it sounded like she was saying it is impossible to live with Celiac at all. Just as it isn't possible to plug your computer into a whale. By asking everyone for analogies of how impossible it is to be a Celiac, I felt that was very negative and perhaps a sign of depression. She has tried to explain that that is not the case, so ....great.

How we live " normally" is different for everyone. I felt it would be discouraging for every newly diagnosed Celiac to read a bunch of us posting that it is not possible to live a good life or to ever feel good. The majority of Celiacs, living their lives , hopefully happily and " normally", aren't on a help forum.

[jordan shulak]

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.

I like your post! CeliacAwareness! Posted to my FB page and told all my family/friends to read if they wanted to know what living with Celiac feels like. You have no idea until you are directly affected! Thank you!

[love2travel]

Initially my diagnosis shocked and stunned me. I was really thrown for a loop as I was not expecting it. In time, however, it became my new normal which is pretty normal to me. I'm a fabulous cook and have no trouble with that end of things. I am eating better than ever before and have chosen to learn from this. I've learned about tons of kinds of flours I had not baked with before which is fun. Same with interesting grains, etc. The thing that bothers me on a daily basis is this crazy back/body pain that just does not ever give up. Much of it is from an accident five years ago (herniated discs, blah blah blah) but I'm guessing part of it is due to celiac. Am working on it! It is normal for me to lie down on the floor when we have company, it is normal for me to lie down in the vehicle when traveling (obviously not driving! ), it is normal for me to take my lumbar support to church, eating at restaurants (which I rarely do)... It is very hard to take but I make the most of my days. When I must lie down all day, I turn to my stacks of books and my fun game apps. The days I can get around I cook like mad. Distractions and doing things I love help tremendously.

So, "normal" is highly individual. I do not see myself as abnormal at all. Well, except personality wise, but that is different.

I am thankful I have legs to walk. I am thankful I have eyes to see. I am thankful I have a husband who adores me. I could go on and on. Counting my blessings really helps put things into perspective. My friend's best friend recently lost her husband and ALL her children in a car accident. Gone in an instant. Suddenly she is childless and a widow and in her late 30's. Now that is horrific.

We all have our good days and our not so good days. Attitude goes a very long way in determining how we see our days. I did not used to believe that but now I am speaking from a lot of experience and have found it to be true. In the midst of pain there is always a teeny weeny ray of sunshine in there somewhere we can cling to. We may have to dig for it like crazy but that little ray of hope is always there.

[Gemini]

I'm not 'normal' if I can't eat anything but food I prepare. I don't know what plane of existence all you other people are on. It is becoming my normal, but that's not exactly the same thing.

WOW! You sound so angry. Why is it not normal to just eat what you prepare? You think the pioneers crossing the US in covered wagons ponied on up to the Taco Bell drive thru? Not only did they prepare ALL of their own food, they had to kill it or grow it first.

I am in a very normal plane of existence. I nearly died from this disease 8 years ago but once I found out why that nearly happened, it was all "up" for me. I was elated to have a diagnosis and I guess I am the only Celiac on this planet to really not mind this one bit. I am healthier now than most people in my age group and I don't go around complaining all the time about joint pain and thinking it's all because of age. I have no joint pain, no muscle pain or any other pain. I have been amazed at learning how much food influences this and feel very sorry for those who believe what the AMA tells them......"You have arthritis and it's because you are 55 and getting old. Accept it and take these pills."

It wasn't easy for me either and took 3 years to heal but I am so good now, it's scary. I run rings around people half my age. If I can do this, anyone can. I have a hard time believing anyone would miss the crap that everyone else eats! This is why so many are sick today.....why would anyone want to go back to that? I also have 3 other serious AI issues but do not give them much thought. They have improved by huge leaps and bounds after being gluten-free for awhile so I am eternally grateful that I have been given a second chance.

My co-worker has ITP and has to do infusions every once in a while when his platelets get too low and he has my same attitude. The infusions are done at the cancer center and he sits right next to people getting chemo. Spend 1 hour there, says he, and you will be grateful all you have is an AI disease. It's all about perspective.

To the newbies......it may be hard for awhile but recovering from an illness is hard. It's temporary for the vast majority of Celiacs out there. Do not give in or up! It also helps to be focused on work or a hobby or something else so you don't become overly focused on what you can't eat or the changes that are taking place that will become normal after some time. You won't always have a positive day but neither does anyone else in life.

[1desperateladysaved]

I am still trying to unbrainwash you. These situations occur before gluten free days! Before diagnosis, and perhaps at the beginning of gluten free life. I am not dooming you to a horrible life after you are healing.

In this post, I was looking back at 30 years of symptoms and how it was to live through them. See my newest post for what it is like when you finally begin to heal!

I agree with much of what is being said, but I still want to talk about what I meant. Could we just start over from my now edited 1st post in this thread?

[bartfull]

Living normally while first battling celiac is like learning to ride a bicycle. You fall off a lot, steer into obsticles, and sometimes feel like you'll never "get it". Then one day you go for a long smooth ride and realize that you finally DID get it, and from then on, life is better than ever.

[Celiac Mindwarp]

IH and Karen, thanks for the explanations

I think I will chalk this one up to (somewhat confusing) experience

[cahill]

Some times those of us that have "been around the block" a few times can get caught in a dilemma as to how much or little to say. Say too much I may terrify a newbie , say too little I may not share information/an experience that may be helpful. Most of time I tend to error on the side of caution and say little. most times .

Living with celiac disease and its complications is Pure Hell. I live and deal with it because there is no other option. I am a survivor. I will be D#&@#D if celiac disease is going to prevent me from having the life I deserve and want . I live with it and deal with it and relish every healthy moment that I painstakingly earn .

[IrishHeart]

Chill, I agree entirely with your thoughts.

[Pegleg84]

There's really no such thing as "normal" in my mind, but there's feeling good and in control, and that was definitely not the situation when I first went gluten-free.

Before going on the diet, it was like drowning in a really stagnant pond, occasionally getting to come up for air. After going gluten-free, it was like I could swim again. It;s still tough, takes concentration, new obstacles pop up (dairy, then soy, then...) but you get used to it and grateful that you feel better! Things aren't perfect, and you might not be considered "normal", but it's 10 times better than before, and that's all we can ask.

[Vinturi]

I am newly diagnosed and completely disagree. I felt really defeated those first few weeks but now I feel great! I refuse to let the things I cannot eat run my life. Hang in there, OP.

[designerstubble]

Hmmmm. I guess it's all down to perception when we read other people's experiences on here? I think it's hard to post sometimes. I think things get lost in translation often, it's so much easier to see someone's face when chatting! We'd all be great if we were having 'coffee' morning at someone's house!

As for battling celiac, I currently have so many issues with other food that being just gluten free would be 'easy' for me! ( I am not being dismissive of how hard gluten free is, just that since I have had so many other complications with other foods also). I'd be 'shaking my booty' in joy if it was just gluten I had to avoid!!

However...

I may look bad (seemed to have put on lots of weight from eating nothing??) but I feel good!

And every time someone around me tucks into a yummy delicious gluteny something, I whimper sadly for a second... Then think, 'hell, I don't want to put that crap into my body now anyway?'...

Uphill struggle? All the way. Dark days? Lots. Biggest lesson learnt? Positivity will get you further.

Hugs to all from a still struggling 'trying to get it right' Celiac...

[cahill]

Hmmmm. I guess it's all down to perception when we read other people's experiences on here? I think it's hard to post sometimes. I think things get lost in translation often, it's so much easier to see someone's face when chatting! We'd all be great if we were having 'coffee' morning at someone's house!

As for battling celiac, I currently have so many issues with other food that being just gluten free would be 'easy' for me! ( I am not being dismissive of how hard gluten free is, just that since I have had so many other complications with other foods also). I'd be 'shaking my booty' in joy if it was just gluten I had to avoid!!

However...

I may look bad (seemed to have put on lots of weight from eating nothing??) but I feel good!

And every time someone around me tucks into a yummy delicious gluteny something, I whimper sadly for a second... Then think, 'hell, I don't want to put that crap into my body now anyway?'...

Uphill struggle? All the way. Dark days? Lots. Biggest lesson learnt? Positivity will get you further.

Hugs to all from a still struggling 'trying to get it right' Celiac...

 

 

Yeap those complications of celiacs will get ya.

 

As you said ( no disrespect to those who are just gluten free) for some of us being just  gluten free would ( at this point in my journey )  be a 'walk in the park'

[Luv2teach]

I don't feel like I am living a normal life! I am newly diagnosed (one month) but completely agree with those analogies. It's not "normal" that I can't go out to eat with my friends and family anywhere they want, it's not "normal" that I have to scrutinize everything I put in my body for deaf of getting sick, it's not "normal" that I have to cook three meals for my family because I am the only celiac and dont want to make them suffer this s$#&ty food just because I had to and I have a baby that HAS to be exposed to gluten, and on that note, it's not normal that I can't kiss my baby"s hand he reaches out to me because it has cheerio dust covering it and he doesn't understand why.... I used to give his hands kisses while he was eating. No, I'm sorry, but I don't feel normal at all!!!

[designerstubble]

Living normally while first battling celiac is like learning to ride a bicycle. You fall off a lot, steer into obsticles, and sometimes feel like you'll never "get it". Then one day you go for a long smooth ride and realize that you finally DID get it, and from then on, life is better than ever.

Hehehe that sounds a lot like me. I'm still falling off all the time. Haven't even gone far enough to bump into obstacles I reckon let alone a nice smooth ride. Looking forward to that one... nice lovely smooth ride and a sunny day. Awesome.

[bartfull]

Luv2teach, I'm sorry you are feeling this way but be assured, it is perfectly normal to go through a grieving stage. I think all of us did. Meltdowns at the grocery store, feeling left out when our friends go out to eat, and having a new baby must make it that much worse.

 

But the food doesn't have to be crappy. Most of what you used to eat is still available - meat, potatoes, vegetables, nuts, chips, and if you miss bread, Udi's whole grain or even better yet, Canyon Bakehouse Seven Grain San Juan bread is WONDERFUL. And for sweets, try Udi's double chocolate muffins. And of course most ice creams are gluten-free.

 

Maybe you could try your baby on a gluten-free diet. He won't miss bread at his age, and you can give him gluten-free chex instead of cheerios. I say this because celiac runs in families and you might find he does better on a gluten-free diet. The gluten-free diet is SO much healthier for a person anyway.

 

When I find myself getting down about it (which is VERY rare now), I remind myself that so many people have it so much worse. I don't need medications with their side effects, I don't need surgery, and if I stick to my diet I CAN live a normal life. I can do anything I used to do and do it harder and longer and better because I FEEL better than I used to.

 

That is WELL worth the slight inconvenience of a gluten-free diet.

 

It'll get better. I promise.

[designerstubble]

I don't feel like I am living a normal life! I am newly diagnosed (one month) but completely agree with those analogies. It's not "normal" that I can't go out to eat with my friends and family anywhere they want, it's not "normal" that I have to scrutinize everything I put in my body for deaf of getting sick, it's not "normal" that I have to cook three meals for my family because I am the only celiac and dont want to make them suffer this s$#&ty food just because I had to and I have a baby that HAS to be exposed to gluten, and on that note, it's not normal that I can't kiss my baby"s hand he reaches out to me because it has cheerio dust covering it and he doesn't understand why.... I used to give his hands kisses while he was eating. No, I'm sorry, but I don't feel normal at all!!!

I'm with you there... I'm only 5 months in. It wasn't normal for me either and I'm still struggling. But I think by definition the word 'normal' just means commonplace, usual, everyday. So until we get used to this way of life, we will feel alien to it. My gorgeous little boy has learnt to wash his hands after something gluteny and even says to me now, 'mum font kiss me, I've had gluten'... Broke my heart the first time. I understand you completely.

So it's not normal to begin with. For sure.

These guys on this forum kept telling me to hang on in there. I did... Just about! They said it would get easier. I believed them because the alternative is too depressing, but they were right. It IS easier.( And I think I may be a 'complicated' case with many food issues going on)

I'm just hoping that another 5 months will make even easier!! Stay strong.

[love2travel]

Luv2teach, I'm sorry you are feeling this way but be assured, it is perfectly normal to go through a grieving stage. I think all of us did. Meltdowns at the grocery store, feeling left out when our friends go out to eat, and having a new baby must make it that much worse.

 

But the food doesn't have to be crappy. Most of what you used to eat is still available - meat, potatoes, vegetables, nuts, chips, and if you miss bread, Udi's whole grain or even better yet, Canyon Bakehouse Seven Grain San Juan bread is WONDERFUL. And for sweets, try Udi's double chocolate muffins. And of course most ice creams are gluten-free.

 

Maybe you could try your baby on a gluten-free diet. He won't miss bread at his age, and you can give him gluten-free chex instead of cheerios. I say this because celiac runs in families and you might find he does better on a gluten-free diet. The gluten-free diet is SO much healthier for a person anyway.

 

When I find myself getting down about it (which is VERY rare now), I remind myself that so many people have it so much worse. I don't need medications with their side effects, I don't need surgery, and if I stick to my diet I CAN live a normal life. I can do anything I used to do and do it harder and longer and better because I FEEL better than I used to.

 

That is WELL worth the slight inconvenience of a gluten-free diet.

 

It'll get better. I promise.

This is SO true!  Luv2teach, there is no way you need to put up with crappy food.  Heck - about 80% of what I cook is naturally gluten free and is spectacular.  See the What's for Dinner thread for great meal ideas, most of which are intrinsically gluten free.  If I had to live on processed commercial gluten-free food I think I would crawl in a hole and never come out.  We eat very few store-bought gluten-free "foods".  Much of it is just so yucky and processed to the hilt. 

 

When I was first diagnosed I was in major denial.  Food is my passion, testing recipes and teaching cooking classes.  But now I just do things differently.  Some things had to be adapted but it got easier with time.  It took me probably at least six months to come to terms with the whole thing and to realize there are worse things out there than having celiac.  You have more food intolerances than I do (only gluten and lactose at this point) so I can only imagine it would be that much trickier.  The worst thing for me was coming to terms with my miscarriages and no children.     

 

Keep hanging on.  You just need to get over that hump and then things start falling into place.  Honest.  We are not just saying this.  We are living examples. 

[mommida]

Everyone has a story that has lead them here.  You have a story that is still being written.  Later, maybe, they will publish the memoirs.

 

I'll turn mine into some what of a small movie clip.  (Imagine me as some glorious hot chick.)

 

Roll footage...  Plugged into The Matrix.  My imaginary life track is ... glitched.    I'm stuck in the bathroom.  If I'm not in the bathroom, I'm looking for the next bathroom.  I have decided this is not right and unplugged from the Matrix. "Psst!"  To the body next to me,  "Mine's broken."  No response....   So off I go in a strange land. I have to feed myself not relying on SAD (standard american diet)

 

I have turned into some what of a Super hero.  A secret identity  (here on the forum), an arch enemy  (gluten), doing good deeds  , and other super human feats  disquised as a normal mom.  (Insert theme song.)  Wonder Women has nothing on me!  Except maybe that magic lasso of truth!!?  Note to self~ get some James Bond gadgets.  Those could come in handy.

[1desperateladysaved]

Everyone has a story that has lead them here.  You have a story that is still being written.  Later, maybe, they will publish the memoirs.

 

I'll turn mine into some what of a small movie clip.  (Imagine me as some glorious hot chick.)

 

Roll footage...  Plugged into The Matrix.  My imaginary life track is ... glitched.    I'm stuck in the bathroom.  If I'm not in the bathroom, I'm looking for the next bathroom.  I have decided this is not right and unplugged from the Matrix. "Psst!"  To the body next to me,  "Mine's broken."  No response....   So off I go in a strange land. I have to feed myself not relying on SAD (standard american diet)

 

I have turned into some what of a Super hero.  A secret identity  (here on the forum), an arch enemy  (gluten), doing good deeds  , and other super human feats  disquised as a normal mom.  (Insert theme song.)  Wonder Women has nothing on me!  Except maybe that magic lasso of truth!!?  Note to self~ get some James Bond gadgets.  Those could come in handy.

Okay, I will be at the theatre!  JUst let us know when it airs.