Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Adult Diagnosis: How Long Til You're More Or Less Used To This?
0

15 posts in this topic

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. :(

Edited by mmoncrief
0

Share this post


Link to post
Share on other sites


Ads by Google:

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!! 

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

have you read this:  

 

http://www.celiac.com/gluten-free/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.  

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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  :lol:

0

Share this post


Link to post
Share on other sites

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. :wacko:

0

Share this post


Link to post
Share on other sites

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?? :D I'm buying!

0

Share this post


Link to post
Share on other sites

have you read this:  

 

http://www.celiac.com/gluten-free/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!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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)

0

Share this post


Link to post
Share on other sites

 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. :)

0

Share this post


Link to post
Share on other sites

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!!  :D  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!

0

Share this post


Link to post
Share on other sites

 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)) ;) 

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,358
    • Total Posts
      920,531
  • Topics

  • Posts

    • Here's another thing.  Feeling deprived?  Order two of the same item.  I was hungry by the time dinner arrived! 
    • The doctors just made me feel like I was crazy because they did not have a clue of what was wrong with me. I did a stool test (positive) and I did a genes test (positive for two gluten sensitive genes, one in each chromosome).  Blood test are not so foolproof, if you read the comments/experiences in such topic you will see the problems. Biopsy can give a false negative if taken from an undamaged area. If you have medical problems that go away once on a gluten free diet then gluten is the problem. The medical establishment profit from managing your medical problems and big pharma makes money by pushing pills so we need to be careful because they won't benefit if a gluten-free diet solve your problems. Since I started a Gluten free diet I have been free of the following: (all related to Celiac)  Irregularity, Intestinal noise, Irregular stool, Tooth enamel defects, Rash in upper arms, Abdominal swelling, depression, fatigue, irritability, lactose intolerance, 
      loss of memory, dandruff, uncontrollable bladder, suicidal thoughts, unable to sleep, Canker sores/ Mouth ulcers, high blood pressure, and probably others that I did not realize. I was at the end of my rope, thanks to Google and the people that are able to talk about this I was able to get my life back. I am passionate about this because I know how bad its can get. 
    • Well, I have never cruised on Carnival, but I am sure they can accommodate you.  I assume that you have already alerted them that you require gluten free meals.  If not, please contact Carnival immediately. Here are my own tips.  Some folks eat off the buffet line, but not me or hubby except for coffee/drinks and baked potatoes (jacketed) and fruit that we wash in the restroom (people touch everything!)  Okay, I am OCD, but my last glutening which occurred the previous summer made me sick for three months (GI tested my antibodies to prove it).   When we board, I go to the buffet restaurant ASAP and ask to speak to the Head Waiter (they are usually there greeting customers and often trying to up sell to specialty restaurants.   Let them know you have celiac disease and must be gluten free.  They may try to tell you that each dish is clearly marked gluten free, but really?  Who's to say that some other passenger is not going to switch spoons (or I have seen passengers wandering around with serving spoons...I kid you not!  The staff usually will  go downstairs and fetch a gluten free meal for me from the main dining room's kitchen as there is usually a dedicated area for allergies.  We have to wait up to 20 minutes or so but it is worth it.  Starving?  Get a baked potato wrapped in foil until your gluten-free meal arrives.  Now, do not do this every single time.  Those folks have to go down several levels to fetch food and you don't want to be a pain.  But if the main dining area is closed, they need to make an effort to keep you safe.  On our last cruise, we were advised not to eat anywhere but the main dining room and that included room service (they are not trained to handled allergies).  My headwaiters have sent goodies (prepackaged gluten free rolls and cookies for us to keep in our room.  We can always grab whole fruit (I wash it first) to snack on.  I bring gluten-free non-perishable items with me to eat while at port in case we can't find anything (which can be often).  Again, when we get back to our ship, we contact our headwaiter and he/she can prepare some snacks until we have dinner.   Be grateful and not picky.   We eat all meals in the dining room (or at least as much as possible).  Our headwaiter had a few other celiacs on our cruise this summer, so they prepared some gluten-free waffles, etc. for our breakfast!  What a treat!  At breakfast, we'd have different waiters, so our headwaiter would always instruct our waiters each and every time!  They even let me tour the kitchen and showed me the allergy section.   The only time I did not feel safe was at the buffet.  We once ordered gluten-free pizza and I realized (I watched) that that restaurant didn't really have the gluten-free thing down), do I called him on it.  Got the manager etc.  So, be careful.  Other cruises made us frozen Udi"s which was just fine with us.  They covered it up in foil so that we would not get any cross contamination from their pizza oven. So, have fun!   Tipping?  We prepaid our gratuities, but we gave our headwaiter an extra $200.00 for his time.  For us, it was well worth the service and safety of our food.  It does not hurt to slip some of the tip ahead of time (like after your first meal!)   Oh, I checked your ship.  You must eat in the diningroom if you have special dietary needs.
    • French Celiac / Coeliac Gluten Free Restaurant Card <strong>What is ... What to know about celiac disease, gluten sensitivity, and gluten-free diets. View the full article
    • <strong>Celiac Disease & Gluten-free Diet Information at Celiac.com. Gluten Free Diabetes ::The 3 Step Trick that Reverses Diabetes Permanently in ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,432
    • Most Online
      1,763

    Newest Member
    rbeckler60
    Joined