Adult Diagnosis: How Long Til You're More Or Less Used To This?

[mmoncrief]

I've only been diagnosed since February, and wondering when, if ever, this will feel normal.

 

Temptation isn't an issue for me. Before diagnosis, I was basically bedridden for a year. Doubled over from full body pain; chronically confused and forgetful, weepy, nauseous. I used to eat bread and pasta for just about every meal (and I'd order takeout Chinese for the other ones), but cutting it all out was 100% worth it when I saw how quickly I started to feel like my real self again! No mourning period for me.

 

What's killing me are all the accidental glutenings. Last night, I was tired out from a weekend trip, and I made a simple pot of rice and beans without reading any labels. Just beans, right? I ate a huge bowl and went straight to bed - if I hadn't been so tired already, the immediate exhaustion probably would have been a red flag. Anyway, I woke up in agony. Worked up the energy to go pick the can out of the trash. Contains milk, soy, WHEAT, right there in huge letters.

 

Major negativity ahead.

 

I'm so frustrated. So tired of this happening. It takes me SO long to recover - then I get a few days or weeks of health and happiness, until I inevitably eat something dumb again. At least sometimes it's my own screw-up, like last night. What's worse is when I'm very careful, and it still happens (a few months ago, I went out to dinner at Lili's 57, which claims to have a gluten free menu, and I felt completely destroyed afterward. Should've read the reviews; apparently they're notorious. Also, the food's pretty disgusting to begin with). 

 

I think I'm usually good at staying positive, but right now, laid up in bed like a shaky lead balloon, trying to decide whether I can psych myself up to go get through my work meeting later, I HATE this. SO, so much. I hate feeling like a totally annoying drag every time I'm at a restaurant; I'm sick of the dread I feel every time someone wants to go get dinner. I hate that the American diet is basically wheat with a side of wheat smothered in wheat sauce (and that's even here in New York, where I'm admittedly pretty spoiled. I'm rarely without options; my biggest whine is that Tulu's is always sold out of donuts). I hate having to dig the sausage wrapper out of the trash when I'm just trying to enjoy a summer barbecue like everyone else. I hate it when people - even some of my friends - treat me like it's in my head and belittle me like I'm a flake on some new age fad diet. 

 

I'm so tired of losing days to glutenings, struggling to stay positive while I work up the strength to drag myself to the bathroom before I get the sharts. Worst of all, when I'm in the throes of a reaction, I start to spiral downward, feeling like a hyper-sensitive, miserable monster who lies around all day crying and farting diesel fumes and still somehow getting fatter and fatter.

 

Please, someone, give me a pep talk.

[w8in4dave]

I have only been diagnosed 3 months. I am happy to say (Knock on wood) I have only been Glutened 1 time. That was at Bob Evans! Off of their Gluten Free menu! No less! Yea I am sure the waitress did not like me.Even after she gave me the menu , I orderd, she asked if I wanted the wheat or white bread. I said I cannot have any bread. Somehow I got glutened , it was horrible!! I will never go to that restaurant again!!  I do read allllll labels!! Only because I was shocked when I found Gluten when I read the Label for Broth! Yup beef and Chicken! So I figured if they can put it in broth they can put it in just about anything!! If I were you I would just buy stuff that says gluten-free on the label. If you have a hard time remembering to read all the labels. Thats what I would do. I don't think you can assume when it comes to Gluten. I hope you feel better soon!! 

[kareng]

I found it got easier as I went along.  Read all the ingredients when you buy a food for your home.  Then, when you are home, you know everything is safe and you don't have to have that stress.  If you live with a gluten eater, then the obvious things like bread or cereal will not be gluten-free but make sure everything else is.  For example - always buy the brand of beans that does not contain wheat.  Just make it easy on your self.

 

When you go to BBQs or friends houses, you may need to eat first or bring your own food.  When its a potluck, I bring something to share that can be a meal for me - like twice baked potatoes.  I keep a portion separate for me because its hard to get to the food before anyone else messes it up.  Then I look like I'm eating the same thing. 

[cyclinglady]

I hear ya!  Day 6 of a restaurant glutening and just when I thought I was getting ahead!  I successfully managed a very long summer vacation away from home in a house of gluten eaters and many restaurant visits without getting glutened.  Then I got glutened this week at the very first restaurant my doc recommended to me when he called to tell me, "STOP EATING GLUTEN THIS VERY INSTANT!  Oh, by the way, these restaurants are gluten-free: blah, blah, blah."

 

Best solution to your woes? This forum.  Other than my hubby and one friend who both are gluten-free, no one gets it.    My daughter thinks I'm addicted to this site and I probably am, but it's my way of adapting to the gluten-free lifestyle.    It might be a bit obsessive now but it keeps me on the path to good health.  

 

Hang in there!  Okay, I admit I'm feeling pretty peppy now, but let's see how I feel after eating breakfast.  Later, I may join you at your pity party!

[notme]

have you read this:  

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

plenty of good info on how to keep safe in the gluteny world  

 

i am 3 years+ gluten free celiac and YES it does get easier - almost second nature.  there are still a few scenarios where i feel "deprived" and boohoo me nobody cares if *i* eat or die!  but they are becoming fewer and farther between and so much easier to deal with now that i'm back to my 'new normal' - when i first got diagnosed, i cheered myself up (and so did all my friends and relatives) by finding all the gluten-free processed packaged stuff and restaurants with gluten-free offerings/menus.  huge mistake.  huge.  i was forever sick from the extra crap they put in processed foods and cc'd by the restaurants.  i remember having a turning point sitting in my favorite bbq restaurant's parking lot while everybody else went in and ate.  i just kept thinking about how many crumbs there were (and pre-dx, i could give a crap about a couple of crumbs) and the waitress was *still* going to assure me that everything was gluten-free.  she doesn't know!  so, i (sat in the car and ate my chex and cried) quit restaurants - for awhile - until i was good at discerning what places would be educated enough to feed me safely and also until i got good at asking the *right* questions.  

 

oh, and i make my own beans from dried, then i freeze them.  nothing gluteny in the canned beans, just something that didn't agree with me the way they canned them - just plain beans, mind you.  i can do bush's baked beans (as long as i read the label and no wheat or gluten) with no problem at all.  what is also helping tremendously, because i had/have so much gut damage, is taking probiotics.  it has allowed me to add back some foods that i was having trouble digesting so one more step to the better

 

i hope you feel better.  i believe it is little 'clicks', little changes here and there.  every day you will get better at this, i promise.  

[shadowicewolf]

I'm 2+ years into this. Reading labels has become almost second nature to me. You get used to it.

[notme]

I'm 2+ years into this. Reading labels has become almost second nature to me. You get used to it.

lolz - shadow!  i just came back to add:  i had to go trash-diving last week over something or other i couldn't remember if i checked the label      (it was ok!  lolz)  my daughter thinks it's hilarious, because i would NEVER get anything out of the trash.  if it went in, it was like the black hole of goodbyeness.  now, i am going in elbow-deep from time to time 

[moosemalibu]

I've read labels of foods for the past year because of health conscious reasons aside from celiacs as I was just diagnosed this month. So the transition to screen for gluten doesn't appear to be that difficult. For me it's the cross contamination issues that are daunting. Good luck! I know I am grieving a bit for my lost body building supplements, protein powders, creatine, BCAA's that are all CC'd.

[IrishHeart]

You get used to it because it becomes the "new normal".  I promise you that! 

 

(and who here hasn't done the dumpster dive to re-check something? anyone? anyone? Bueller?) 

 

So sorry you got hit but drink a lot of water and stay positive. (thinking negative is just part of the gluten head crap, I have noticed--for me anyway. My usually upbeat nature becomes a tad er,  shall we say...whiny/grumpster-ish?)

 

hey. I just returned from 2 days in NYC (I live upstate) and I was thinking...man, I wish I lived there!! and not just because of the food, but because I love everything about it and go as often as possible.

 

I ate my face off.

LOL

 

Freidman's Lunch, Jennfer's Way Bakery, Bistango, Fig and Olive, Quintessence,even Citi Field has a gluten-free concession stand.

 

It's ok to feel pissy about getting hit, but do not let it ruin your life, kiddo. You live in an awesome city and everything is going to be all right, I promise. (hugs) and maybe next time, we can grab a drink and You can get a real life hug??  I'm buying!

[cap6]

have you read this:  

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

plenty of good info on how to keep safe in the gluteny world

 

i am 3 years+ gluten free celiac and YES it does get easier - almost second nature.  there are still a few scenarios where i feel "deprived" and boohoo me nobody cares if *i* eat or die!  but they are becoming fewer and farther between and so much easier to deal with now that i'm back to my 'new normal' - when i first got diagnosed, i cheered myself up (and so did all my friends and relatives) by finding all the gluten-free processed packaged stuff and restaurants with gluten-free offerings/menus.  huge mistake.  huge.  i was forever sick from the extra crap they put in processed foods and cc'd by the restaurants.  i remember having a turning point sitting in my favorite bbq restaurant's parking lot while everybody else went in and ate.  i just kept thinking about how many crumbs there were (and pre-dx, i could give a crap about a couple of crumbs) and the waitress was *still* going to assure me that everything was gluten-free.  she doesn't know!  so, i (sat in the car and ate my chex and cried) quit restaurants - for awhile - until i was good at discerning what places would be educated enough to feed me safely and also until i got good at asking the *right* questions.  

 

oh, and i make my own beans from dried, then i freeze them.  nothing gluteny in the canned beans, just something that didn't agree with me the way they canned them - just plain beans, mind you.  i can do bush's baked beans (as long as i read the label and no wheat or gluten) with no problem at all.  what is also helping tremendously, because i had/have so much gut damage, is taking probiotics.  it has allowed me to add back some foods that i was having trouble digesting so one more step to the better

 

i hope you feel better.  i believe it is little 'clicks', little changes here and there.  every day you will get better at this, i promise.  

3+ years here too!  And yes it does become second nature.  Just when you think you will never understand and accept you wake up one morning and everything just falls into place.    Those pity parties become fewer and fewer (the guest list sort of shrinks too!) .  

Remember whole natural pure foods are the best... veggies, fruits, meats and anytime you buy something with multiple ingredients you are starting to run risks!

[eers03]

Hang in there!  I was diagnosed last November.  I am going to celebrate my diagnosis date like its my birthday.  In certain ways, it really is!  I took a bite of jerky one day that was made by a brand that I had eaten before and thought it had great flavor, THEN I looked at the label and proceeded to spit it out before swallowing, and rinsed my mouth out as best I could. CC is my greatest obstacle as well.  I will tell you this, my symptoms were many and now they are much fewer.  Just takes time.  I'm finally getting my weight up enough to get back into some exercise, hopefully.  Good luck!

[Nikki2777]

I was diagnosed about the same time as you -- please hang in there.  This reading labels thing really stinks (especially now that I'm old enough to need reading glasses to do so -- every single time!).  And, for the record, while I never got glutened at Lilli's 57, after eating there a couple of times, I decided it wasn't good enough to risk it.

 

For a while, you may want to just bring a small snack along to eat while everyone else is, and then fix yourself something simple at home later.  This is how I've gotten used to handling it when there's a place i feel might be iffy, and my family eats out a lot.  I've always had a problem with overeating, and in a silver-linings kind of way, I appreciate that it's taught me that I don't have to stuff my face to be social. 

 

Good luck - I think I'm finally starting to hit my stride on this and while I don't think my reactions to glutenings are as bad as yours, I'm finding that finding options in NYC are fairly easy (Instead of Lilli's, next time you may want to head a few blocks down to Ruby Foos.  They seem to take their gluten-free menu very seriously)

[bartfull]

 Irish Heart says, "and who here hasn't done the dumpster dive to re-check something?"

 

I have NEVER done the dumpster dive!

 

Instead, I just kept taking those vitamins that I THOUGHT were gluten-free until you pointed it out to me on the forum! I'd probably STILL be glutening myself if it hadn't been for you! (((((HUGS))))) Yeah, sure, the writing is tiny and my eyes aren't that good, but I actually now bring a magnifying glass with me when I shop. Seriously!

 

And after that, I read EVERY label EVERY time, no matter what I am buying.

 

Mmoncrief, there is a website called findmeglutenfree.com that should be of great use to you in New York. It lists gluten-free restaurants and has user reviews to let you know if they are truly safe. Lots of places claim to have a gluten-free menu but they will CC you every time. Find a bunch of safe ones and make those your regulars.

 

You'll get used to it. Honestly. And you will thrive.

[notme]

3+ years here too!  And yes it does become second nature.  Just when you think you will never understand and accept you wake up one morning and everything just falls into place.    Those pity parties become fewer and fewer (the guest list sort of shrinks too!) .  

yay, us!!    so true about the guest list LOLZ that's ok.  in the words of jason ross:  sooner or later, it's over your shoulder  

 

here's another:  time is all the luck you need  happy 3+ years, cap6!

[IrishHeart]

 Irish Heart says, "and who here hasn't done the dumpster dive to re-check something?"

 

I have NEVER done the dumpster dive!

 

Instead, I just kept taking those vitamins that I THOUGHT were gluten-free until you pointed it out to me on the forum! I'd probably STILL be glutening myself if it hadn't been for you! (((((HUGS))))) Yeah, sure, the writing is tiny and my eyes aren't that good, but I actually now bring a magnifying glass with me when I shop. Seriously!

 

And after that, I read EVERY label EVERY time, no matter what I am buying.

 

Mmoncrief, there is a website called findmeglutenfree.com that should be of great use to you in New York. It lists gluten-free restaurants and has user reviews to let you know if they are truly safe. Lots of places claim to have a gluten-free menu but they will CC you every time. Find a bunch of safe ones and make those your regulars.

 

You'll get used to it. Honestly. And you will thrive.

 

That Find Me Gluten Free site is awesome--and I post on there myself!!

 

Glad we found that vitamin thingy together, sweets!!. ((hug))