Does Anyone On Here Forget That They Have celiac disease Most Of The Time?

[Guest Ang]

Before being dx in late Feb '06, I could never ever stick a diet of ANY kind: no willpower whatsoever because I really could eat whatever and however much I wanted, and not really gain much weight. I used to feel so sorry for people I knew with celiac...you know, the "that must be SOOO hard," comments that I now get! I still can't believe how easy it is for me to follow the diet. Knowing how sick I get is a deterrent for me to cheat. OK, I cheated on a bite of cookie and a kit kat the first week, but I really have no desire now to pursue foods I once adored: sourdough bread, pizza crusts, sweet rolls. I console myself with how much I CAN eat, because I don't have a lot of the other food allergies. I always tell people that I can still have a lot of different candies and junk foods. I like to think of these treats as my consolation prize, "Ha ha, I can't eat your hamburger bun, but I can eat a Snickers, and I could care less about the fat in it!"

Like most of you, I really do forget about the celiac in the comfort of my own home and within my family. My dad was just dx this week, and he'd been asymptomatic, or at least, no commonplace symtoms, but I think it'll only get easier to eat this way as we adjust our family meals accordingly.

It's out there, and for me, it's only getting easier to deal with publicly, because it seems like everyone I know knows someone, somewhere, who has "that same thing, they can't eat bread."

[debmidge]

from my husband: doesn't forget about it for one minute.

[skoki-mom]

I only think about it when I have to find something to eat. Otherwise, I lead a normal life in every way.

[issima]

I worry about how NOT affected I feel by this -- will it wear off, and start to make me crazy every time I see a pizza or a creme puff or a piece of fried chicken? Or a beer.

I can't believe how NOT tempted I have been (keep in mind this is all very new to me, as my signature attests) to dive into the bagels, muffins and wonderful pastries at the authentic Danish bakery in our town (complete with imported Danish wheat, butter, marzipan, and bakers). I go in to get coffee and to buy bagels for my son, and I see their things and once in awhile I get a brief twinge but then it's no biggie. I see sandwiches on croissants at Whole Foods and all sorts of other things and am barely affected. (I do admit to being bummed out about all the restaurants I can no longer trust, though.)

And I think to myself, "Wait. Just wait. When the zeal wears thin in a few weeks, or months, look out. This is not real."

But each time I see these things, a little voice whispers to me, "Lymphoma." Because I was diagnosed after my gastro started evaluating enlarged nodes that showed up on a CT scan and ordered an endoscopy. I haven't had the D so many people speak of, or night sweats. I've had bloatedness, tummy aches that I thought was simply from stress (am losing my job at the end of September), and some iron loss, I think. I've had a tiny bit of weight loss (about 10 lbs.) that could as easily come from not eating due to the 5-month stress of this job thing that took months to reach its final conclusion in mid-July. And I get a pretty good amount of exercise. I'm approaching 56 and just now am learning I have Celiac. Maybe between the job thing and the diagnosis I am just in shock, I don't know.

But for some bizarre reason it doesn't seem to have hit me yet (or I'm sure I'd be begging for wheat). I don't think I'm in denial, because I AM being very careful, inspecting all labels, checking the web constantly.

Why isn't this bothering me more? I feel like I should be crazy about this.

[queenofhearts]

Why isn't this bothering me more? I feel like I should be crazy about this.

I have had cravings here & there, but never real temptation in 2 1/2 months... I think I too am so grateful for a diagnosis that makes sense of all the medical craziness... I'm 50 & think I've had this since childhood, but only diagnosed this year when my liver started acting up.

The day after my diagnosis I wrote out a long list of Reasons I Am Lucky in my journal & I turn to it now & then... but mostly I don't need to. It's only when eating out or at others' homes that I ever feel really left out or sad, but I remind myself of all I stand to gain, & again feel lucky.

I can't say I ever FORGET that I'm Celiac, though... at least not when food is involved!

Leah

[Guest nini]

I still think about it all the time. I'm obsessed with it. I want the world to know about Celiac.

Am I getting more comfortable with this whole gluten-free lifestyle? you bet. It's so much easier once you get the hang of it, and it's getting easier all the time with more awareness out there.

Do I want to forget I have it? nope.

[sparkles]

AMEN! I don't resent having celiac disease....I just know that it takes longer at the grocery store. Actually, I shop more like the Europeans do by going to the store several times a week to get fresh foods and read labels. My husband and I rather enjoy the time together plus it doesn't take so long to put the groceries away! I don't think that it is something I don't think about but rather it is something that I don't resent. A friend of mine once said, "Don't you wish there was just a pill that would make it better?" To my surprise, my answer to that question is NO! I like having control over my life.... a pill is like putting a band-aid on the disease. I have other problems caused from being an undiagnosed celiac that require meds but I like the fact that I determine whether or not this disease is going to get the best of me!!!!!

[issima]

I just know that it takes longer at the grocery store... A friend of mine once said, "Don't you wish there was just a pill that would make it better?" To my surprise, my answer to that question is NO! I like having control over my life.... a pill is like putting a band-aid on the disease...

Have to confess I'd like a pill, something like a Beano right before eating. Wouldn't that be fantastic???

However, I feel as if I'm eating healthier for sure. More salads, vegetables, etc. This has to be good. Even found cookies I like.

My concern is not even about eating out in restaurants so much, though I'll miss our favorite Chinese restaurants for sure. My concern is over eating in the homes of others who don't get it, can't get it because they can't get their heads around just how insidious gluten can be and how it lurks in places and things that don't even mention gluten.

Here in the Boston area, where there are lots of Whole Foods and similar places, people are pretty open to all this, but it's just so hard to explain all the seemingly harmless places gluten hides.

Sometimes it seems a little like being very strictly Kosher, but this is worse because Kosher foods at least are clearly labeled.

[kbtoyssni]

I always remember I have celiac, but that's probably because I'm so grateful for my diagnosis. I got my life back when I got diagnosed so it's not something I want to forget. I never want to lose that feeling of being so thankful everyday that I can get out of bed and live my life. I'm reminded of my celiac not only every time I eat, but also everytime I go to work, workout, go out with friends, stay awake for a full day without a nap, balance my checkbook, read a book - all the things things I couldn't do pre-diagnosis.

[L.A.]

Hello...

Haven't posted in...um....almost forever, but thought I would pop my head in again!

I've been reading a lot of posts that talk about how people are frustrated an consumed with celiac disease, etc... but does anyone on here hardly *remember* that they have this condition? Don't get me wrong, I am always very vigilant about food I eat, etc, but I always find myself being reminded (usually by other people) that I actually do have this condition. Say, if I am filling out a medical report for a new doctor/practitioner, it will frequently skip my mind that I have something that I should be putting down. Or, if I'm filling out a health related questionaire, I may not think of it until the last minute... Or if I'm with a group of people (usually in a work setting), and someone asks about food allergies, it will take me awhile to clue in (while other people that I know are starting at me, waiting for me to answer! ha ha) that OH YEAH, I do!

Anyone else get this?? Or is it just me... ?

-em

...when I'm sleeping

[CarlaB]

...when I'm sleeping

Lucky you ... I have nightmares that I've eaten gluten!!!

[ArtGirl]

...when I'm sleeping

That about sums it up, for sure. I'm too new to all of this, and have been on an "allergy adventure" with other foods as well as gluten, so I'm still emersed in the process.

Hope to reach the point that it's just second nature, that I've reserached and found out all the foods and brands I cannot eat, and just settle into the lifestyle without havnig to think about it constantly. I am truly sick and tired of this food intolerance/allergy consuming so much of my waking thoughts. (So far, haven't dreamed about it.)

[debmidge]

Have to confess I'd like a pill, something like a Beano right before eating. Wouldn't that be fantastic???

However, I feel as if I'm eating healthier for sure. More salads, vegetables, etc. This has to be good. Even found cookies I like.

My concern is not even about eating out in restaurants so much, though I'll miss our favorite Chinese restaurants for sure. My concern is over eating in the homes of others who don't get it, can't get it because they can't get their heads around just how insidious gluten can be and how it lurks in places and things that don't even mention gluten.

Here in the Boston area, where there are lots of Whole Foods and similar places, people are pretty open to all this, but it's just so hard to explain all the seemingly harmless places gluten hides.

Sometimes it seems a little like being very strictly Kosher, but this is worse because Kosher foods at least are clearly labeled.

I had the same feeling - that it's like being Kosher. I just wish our government (Food and Drug Administration and state and local law) was as concerned with standard gluten-free food labeling and ingredient labeling as they were about the Kosher label. It seems to me that if a manufacturer declared a product to be Kosher and it wasn't, the manufacturer would get into more trouble than a manufacturer who declares a product gluten-free in error. One would get a $$Penalty the other an "OOps." Both should be on the same level of concern.

[issima]

I just wish our government (Food and Drug Administration and state and local law) was as concerned with standard gluten-free food labeling and ingredient labeling as they were about the Kosher label. It seems to me that if a manufacturer declared a product to be Kosher and it wasn't, the manufacturer would get into more trouble than a manufacturer who declares a product gluten-free in error. One would get a $$Penalty the other an "OOps." Both should be on the same level of concern.

I suppose one could make the case that the government ought to be even more concerned about the gluten-free problem than the Kosher one because the risk factors are demonstrably higher thereby raising healthcare costs dramatically.

But I am under the impression that Bush signed into law something earlier this year that mandates the FDA developing standards for the voluntary declaration of processed foods as gluten-free. That is supposed to happen next year or the year after if I'm not mistaken. That would be a good thing.

[Guest Ang]

Issima,

There is a new food allergy labeling law out there...more and more packaging shows up with the contents more clearly labeled each time I shop! You still should be careful, though.

I find that the more I cook and bake from scratch, the easier it is to stay away from all of the hidden gluten.

Our local grocery stores (an Albertsons and an Associated Foods store) offer a list of their store brand products that are gluten free. I have learned which products are safe, and there is actually a large variety I can choose from. I don't feel the rut of same old food, same old day. That really helps take the large, looming, "CELIAC" issue off the table for me as head cook for our family. You should check with your local grocer. I know a lot of franchised store offer lists like these. Mine are extensive enough to include questionable foods and their ingredients.

Going out is harder, of course, but again, I've learned which restaurants are gluten free friendly, and there is so much available online that you can prepare ahead of time by using the internet to browse menus, or by calling ahead and talk with the chef. I've always been accomodated by friendly staff.

Oh, and YES!!! I dream of gluten! Usually it's in the form of a delicious sourdough bread, and I seem to actually FEEL the impending sickness coming on. It's weird that food has become a nightmare for me, because I honestly wake up feeling queasy and GUILTY!

Angie