The New Celiac Drug Is Out There

[nvsmom]

It's so funny how different we all are. After almost 9 months off from all dairy and gluten, the only thing that enters my dreams, the only thing I get physical cravings for - bread.

I can't imagine that I'll never enjoy bread again. It fills me with a really profound sadness. Pizza. Okay I can live. Bagels. I miss them but its okay. Donuts, all right.

But, a piece of white Mrs. Baird's bread? I miss the texture and the flavor and the flexibility of that so much. Every gluten-free sobstitute (sob...) I've tried has been just a crushing disappointment. The aftertaste. Oh god. I get a little nauseous even thinking about it. If incompletely burn a gluten-free piece if bread and slather it with some honey, I can pretend life is going on normally. Otherwise, I'm just tolerating things.

I hate that it is so for me, but this is what I've found to be the most depressing about my new diet.

 

I'm lucky, I don't miss bread at all. I had braces for a couple of years during my teens, and as a self conscious girl, I could NOT stand getting bread stuck in my train tracks. Ick. LOL I switched away from most breads at that point... I guess my dentist did me a favour, eh?  

[cahill]

It's so funny how different we all are. After almost 9 months off from all dairy and gluten, the only thing that enters my dreams, the only thing I get physical cravings for - bread.

I can't imagine that I'll never enjoy bread again. It fills me with a really profound sadness. Pizza. Okay I can live. Bagels. I miss them but its okay. Donuts, all right.

But, a piece of white Mrs. Baird's bread? I miss the texture and the flavor and the flexibility of that so much. Every gluten-free sobstitute (sob...) I've tried has been just a crushing disappointment. The aftertaste. Oh god. I get a little nauseous even thinking about it. If incompletely burn a gluten-free piece if bread and slather it with some honey, I can pretend life is going on normally. Otherwise, I'm just tolerating things.

I hate that it is so for me, but this is what I've found to be the most depressing about my new diet.

the difference may be that I have been gluten free for almost 4 years .

At 9 months gluten free I was still grieving the loss of gluten and was ( like you) searching for a gluten free bread that was the same ( taste ,texture ) as gluten filled bread .

 

Now, after almost 4 years gluten free  there is absolutely no temptation or desire for gluten in any shape or form .

[ABQ-Celiac]

When I was first diagnosed, I found such a great amount of comfort on this forum.

 

Lately, I've noticed - not just in this thread - this self-satisfied notion among "long time" celiacs and a real condescension to anyone who hasn't been at it as long.

 

It's turned me right off. Minimizing the experience of "newer" celiacs will drive them away. Like me.

 

 

the difference may be that I have been gluten free for almost 4 years .

At 9 months gluten free I was still grieving the loss of gluten and was ( like you) searching for a gluten free bread that was the same ( taste ,texture ) as gluten filled bread .

 

Now, after almost 4 years gluten free  there is absolutely no temptation or desire for gluten in any shape or form .

[julissa]

I also would not want to take a drug that "fixes" me, but I would be very interested if it would minimize cc. I seem to be very sensitive and really have problems eating anything I didn't make myself, so for this reason, if it would allow me to eat out off a gluten free menu feeling more at ease,  that would be worth it.

 

over the weekend we went to celebrate our anniversary at a very upscale steak and seafood house. the waitress was over the top in awareness and helpfulness. told me what I would be safe with, and assured me of measures they take in the kitchen. it was a lovely meal but as soon as I got home headed right for the bathroom, got a terrible headache and still have the headache. shades of what I used to feel on gluten.

 

It is sad that I cannot enjoy a night out without bringing my own food, which I wouldn't do at this place, but I do at some other places. maybe I am throwing myself a little pity party, but if a drug like that allowed me to go out and have a nice celebration, I would do it.

[julissa]

ABQ, I never see posts as condescension, I see them as giving hope once you are in it longer and longer.

[kareng]

When I was first diagnosed, I found such a great amount of comfort on this forum.

 

Lately, I've noticed - not just in this thread - this self-satisfied notion among "long time" celiacs and a real condescension to anyone who hasn't been at it as long.

 

It's turned me right off. Minimizing the experience of "newer" celiacs will drive them away. Like me.

 

 

I didn't see that as condescending.  I thought she was trying to give you some hope and explain what it has been like for her.  Most newbies want some help from people who have gone thru it and have tips, advice and can let them know that you will survive and maybe even be happy again. 

[Gemini]

When I was first diagnosed, I found such a great amount of comfort on this forum.

 

Lately, I've noticed - not just in this thread - this self-satisfied notion among "long time" celiacs and a real condescension to anyone who hasn't been at it as long.

 

It's turned me right off. Minimizing the experience of "newer" celiacs will drive them away. Like me.

I think your outlook has something to do with anger. You are seeing things that aren't there because there may be resentment and anger at being diagnosed a Celiac. I find that the younger ones have a different attitude about things than the older ones, like me.  Not all, but some. I don't know your age...just sayin'.

 

For me, I am not emotional about food. I love good food and can make just about anything because I love to cook so going gluten-free wasn't a big deal. It was a challenge but I rise to challenges and converted my recipes instead of feeling sorry for myself.  I also nearly died from this...came very close and if that isn't enough to change your out look on things, I don't know what will. It all depends on the situation at time of diagnosis and a person's ability to accept change.

I have also found fantastic bread and my husband makes homemade bread that rocks, so life is good.  But, most importantly, many times I opt for a salad with protein and forgo the bread and I am fine with that also. Bread is not the staff of life...people just think it is.

 

I am not putting anyone down at all here but when I see someone like Angelina Jolie come out and tell the world she just removed her breasts surgically and will have to remove her ovaries and uterus so she can live long enough to see her grand kids and avoid cancer that will kill her, I thank God in Heaven that all I have is Celiac Disease.  For me, it just puts everything into perspective.  I hope you can get there also and accept that this is nothing more than an exercise in patience and a little hard work. I am not being smug...I have 4 autoimmune diseases in total and have my bad days too but I'm too stubborn to give in.  It's gonna take a lot more than this gluten problem to change my outlook.

[IrishHeart]

ABQ, I never see posts as condescension, I see them as giving hope once you are in it longer and longer.

 

yup and that is the intention of chill's post above and any others that come from people I know and respect on this board.

 

I didn't see that as condescending.  I thought she was trying to give you some hope and explain what it has been like for her.  Most newbies want some help from people who have gone thru it and have tips, advice and can let them know that you will survive and maybe even be happy again. 

 

agree totally

 

 I thank God in Heaven that all I have is Celiac Disease.  For me, it just puts everything into perspective.  I hope you can get there also and accept that this is nothing more than an exercise in patience and a little hard work. I am not being smug...I have 4 autoimmune diseases in total and have my bad days too but I'm too stubborn to give in.  It's gonna take a lot more than this gluten problem to change my outlook.

 

Ditto  (except  I "only" have 3 AI diseases  ).........  and I agree that  it's all about embracing the "new normal".

 

ABQ

 

I think you may have misinterpreted some people's words and intentions, which is easy to do when you are just "reading words"......If you met any of us, you'd see how loving and compassionate we all are.

 

(well, I can speak for several of the posters in this thread anyway!)

[bartfull]

I guess it's because I am such a lousy cook that I can't be fussy, but when I realized I couldn't eat "regular" bread anymore, I went right out and bought some Udi's multi-grain and I really liked it because to me it tasted like french bread. The following week I bought the Canyon Bakehouse San Juan and loved it even more because it tastes like those multi-grain breads in the grocery store with all the nutty little bits in them. Also, the texture is the same as those breads - not dry or crumbly at all. Like I said, my non-gluten-free friends like it better than regular bread too.

 

I think it's normal to have some anger at first. I did! I was angry and sad and when I tried EnerG bread (the first one I tried), I thought it was the end of the world! After I threw that away and tried the other brands, I was OK with it - at least the bread part.

 

But honestly, when the folks here tell you you will adjust, it is not only NOT condecending, and it is not only an attempt to give encouragment, but it is simply the TRUTH. If I found out today that I didn't have celiac after all, I would still never go back to eating the way I used to. Honestly. I used to eat JUNK, and now I eat healthy foods. I feel better for it, and I would never ever go back to the "dark side".

[Celiac Mindwarp]

ABQ

I will be honest, and say I sometimes felt the same when I came here 1st 8 months ago.

I wanted and needed a good wallow, and time to get my head round things.

But I gradually got used to things, and realized the folks here are passionate about helping people recover, and not get into the dreadful state some of us, especially if undiagnosed, got into.

I have a take or leave it approach to advice here, just use what works for you. Your brain will be busy storing away info you might call on later.

One step at a time is all any of us can do.

[GottaSki]

Hi ABQ--

 

I agree with what others have said above....thought I'd add if you want a good giggle...go back and read what some of us were posting our first months gluten-free -- we all stomped our feet   threw a few pity parties   and were at times pretty darn grumbly 

 

nearly all posts on this site come from a place of wanting to help others get through what we all have -- hopefully with a bit less heartache   along with avoiding many of the pitfalls we tripped over 

 

Hang in there 

[IrishHeart]

Dang, Ski....you used up all the good emoticons, girl.   

[cahill]

When I was first diagnosed, I found such a great amount of comfort on this forum.

 

Lately, I've noticed - not just in this thread - this self-satisfied notion among "long time" celiacs and a real condescension to anyone who hasn't been at it as long.

 

It's turned me right off. Minimizing the experience of "newer" celiacs will drive them away. Like me.

I apologize if I in any way sounded condescending. It truly was not my intent .

[IrishHeart]

I apologize if I in any way sounded condescending. It truly was not my intent .

 

 

We know, chill...... we know. No worries, hon  

[love2travel]

Hi ABQ,

 

There are so many kind, compassionate and caring people on this board that we are almost like family!  Heck, we ARE family - we have celiac in common.     We are just responding truthfully.

 

I have been gluten free for 25 months and honestly I miss good bread, croissants, chewy bagels, phyllo pastry...But then I have always been a baker and cook and will never, ever forget the smell and taste and texture of gluten bread.  I make my own gluten free breads, pizzas, cinnamon rolls, etc. but they are not the same quite honestly.  They are probably as good as it gets as far as gluten free goes.  But if you do not care about food and/or cooking, I imagine that forgetting these things is easier.  I do not yearn for it or crave it - just miss it sometimes.  What I miss most is spontaneity and social functions where you must plan everything ahead (i.e. going to in-laws for Christmas).  

 

Actually, what I initially did was the day after I was diagnosed I made a list of about 70 things to have one last time.  And I had every single one and crossed them off that list.  Funny thing is, most can be made gluten free.  I was in denial for several months.  How could I have celiac?  I did not feel sick and I am a SERIOUS gourmand (dislike the word "foodie").  But after denial and grieving and anger, I came to acceptance and while every single label must be read, it became second nature.  I seriously wondered whether I would get to that place but I did!  So can you.  So, be encouraged.  Take the advice you have been given and know that you are not in this alone.  We have all been through it and we all hit rough patches.  It is just human nature. 

[love2travel]

For some odd reason, I was unable to add something in my post above.  Anyway, my attitude is what needed to be changed.  I moped, I sulked, I cried, I even screamed a couple of times.  Not in public, don't worry.     When I realized it was not the death sentence I first suspected, things became easier.  In fact, my focus gradually was no longer celiac or the fact that I have this disease but on other things such as throwing myself into my hobbies and doing things I love.  Still passionate about cooking and baking - now it is just a little different!  But people are so often amazed that such-and-such was gluten free and do not even miss gluten in meals. 

 

Remember, this too shall pass.

[IrishHeart]

 this too shall pass.

 

Well, sweet girl....this just hit home because this was my father's credo...about anything in life that gave me a challenge and a disappointment....and he was correct.

 

now, when someone talks to us on here about being glutened and feeling crappy, I say it, rather "tongue in cheek"..that "THIS too shall Pass".

literally and figuratively.

 

Bottom line...we all adapt and we all live full and happy lives. And we are family, you are correct!!

 

I miss the "spontaneity" too...but a Koolatron cooler in the car, a few phone calls ahead, some experimenting with baking and cooking...good advice from my friends on here.... and nothing is impossible.!!

[gatita]

Ah yes, this too shall pass... I won't even get into how many areas of life that applies to.

 

I hear y'all about the wallow! Just never felt it myself, but I appreciate the sentiment...

 

Honestly, I was just telling my housemate how even after only 10 months at this gluten-free reality, I really haven't at all "grieved"over losing bread, pasta, etc. from my life forever. And don't get me wrong, I am a true foodie... yet the loss hasn't hit me... (not yet, anyway).

 

I just feel fortunate that I never had that angry phase of ayyy.. "all the things I am losing." I don't judge anyone who has felt that, please understand... I just feel lucky that it hasn't so far struck me that way.

 

Meanwhile, we are here for each other and that's what matters. Love this place.

[julissa]

I was so relieved to finally know what was making me sick after so long trying to get answers, that I went gluten free joyfully, and still am joyful about it.

 

I too miss spontaneity and being able to eat out confidently. I eat out rarely and it's always a crap shoot for me. I usually feel it's not worth it. 

[GottaSki]

lol..

 

'this to shall pass' has been the motto turned joke between me and my kids too -- it really ought to be the Celiac Disease Motto

[gatita]

lol..

 

'this to shall pass' has been the motto turned joke between me and my kids too -- it really ought to be the Celiac Disease Motto

 

....especially for those of us troubled by the big C!

[nvsmom]

....especially for those of us troubled by the big C!

  Almost spit my coffee all over the computer at this!  LOL

[love2travel]

Well, sweet girl....this just hit home because this was my father's credo...about anything in life that gave me a challenge and a disappointment....and he was correct.

 

now, when someone talks to us on here about being glutened and feeling crappy, I say it, rather "tongue in cheek"..that "THIS too shall Pass".

literally and figuratively.

 

Bottom line...we all adapt and we all live full and happy lives. And we are family, you are correct!!

 

I miss the "spontaneity" too...but a Koolatron cooler in the car, a few phone calls ahead, some experimenting with baking and cooking...good advice from my friends on here.... and nothing is impossible.!!

That is awesome!  No matter what it is, even what seems impossible at the time, it applies.  Sometimes it helps to change how we look at things, too.  And you are right - anything is possible.  I still cannot believe I can fly long haul with extreme pain.  It seems as though I am being stretched on the rack until the breaking point at the time but so far I'm still alive! 

[grodeylocks]

When I was first diagnosed, I found such a great amount of comfort on this forum.

 

Lately, I've noticed - not just in this thread - this self-satisfied notion among "long time" celiacs and a real condescension to anyone who hasn't been at it as long.

 

It's turned me right off. Minimizing the experience of "newer" celiacs will drive them away. Like me.

Couldn't agree more with you man. It seems that there are heavily biased opinions often spread on this forum that may or may not hold any basis in actual fact.

[GottaSki]

Couldn't agree more with you man. It seems that there are heavily biased opinions often spread on this forum that may or may not hold any basis in actual fact.

 

Opinions are frequently talked about in this forum -- we try very hard to make folks aware they should declare when something is their opinion or experience.  If it is scientific in nature -- links to the research is expected.

 

Opinions and experience of others is very valuable -- it should simply be identified as such to avoid confusion.

 

Here is a great example....Had you worded the above such as this:

 

"In my opinion there are heavily biased opinions on this forum......"

 

I would not be responding to your post -- I would have taken it simply as your opinion and moved along -- please add qualifying words in the future or provide links that support your theories.

 

Thank you.