Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Sometimes This Really Sucks

jkmunchkin

By jkmunchkin
in Coping with Celiac Disease

Recommended Posts

jkmunchkin Rising Star
jkmunchkin
Posted

I don't normally complain about having celiac (or about anything really), but I literally spent the majority of Saturday night moping. This isn't really a complaint as much as a vent and I just know you guys will understand so I just wanted to share my feelings with people that will understand.

I had a bachleorette party for a friend and they chose to go Lucky Changs for dinner which is a Chinese restaurant / drag club in the city. I ate before hand because I knew I wouldn't be able to eat there but from the time I ate till we actually went out was about 5 hrs. And then about an hour in everyone ordered food. So now I was already a little hungry but watching everyone shovel food into their faces was just making me hungrier and start pitying myself. Ofcourse from there we went to another club. So basically fast forward to 3:30 am and I'm starving, been drinking so ofcourse I desperately wanted food... and I couldn't have anything - but ofcourse everyone else could go to the bagel shop next to the club that was open (yes there is a bagel shop open at 4:00am in NY next to a club - lol).

I guess I felt the need to vent because this was probably the 1st time I haven't been able to find something for myself and not feel like such an outkast. I've always been naturally thin and I felt so uncomfortable with people at the restaurant staring at me with the wondering looks of why is this girl not eating a thing, and not being able to eat something when I was so hungry.

Ok done whining. Thanks for letting me. :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


bklynceliac Apprentice
bklynceliac
Posted

Ha, jk, I know your pain well. I am also a New Yorker and have experienced many of those late night evenings when I'm dying for a snack and just can't have one. There's something so integral to the New York culture of drinking late, then eating something awful at 3 am, and we can't. It stinks. And then you'll tell someone you're hungry, they'll ask why you're not eating and you don't want to do into the whole gluten thing, so you just avoid the conversation. Nothing more rockin that pulling out a small apple sauce cup in a bar at 2 in the morning. Anyway, just wanted to say I'm with ya...

key Contributor
key
Posted

Jillian,

I am sorry you had a rotten night. I do think that people not understanding and having to starve to death at times is the worst part of having celiac. I had a woman literally "yell" one night while we were out to dinner for my husbands graduation with about 75 people there, "Is that all you are eating??". I only had fruit on my plate. Of course everyone turns to stare and I have to mumble that I am allergic to wheat. The short version that I choose when answering ingnorant rude people! She just thought I was anorexic since I am skinny, so she thought she would embarrass me.

You can always come here to vent! We all understand. It can be a very "lonely" disease at times, but I am greatful too.

Monica

mookie03 Contributor
mookie03
Posted

Jillian--

I so feel for you! I have that feeling a lot- when i go out drinking or eating w/ a big group of people...it does suck. But think of it this way, in the past, you would have gone out drinking then eaten that bagel and how bad did you feel the next day? (always thought it was a hangover but now i know otherwise!)

The inconvenience is annoying- especially since we live in the city of convenience, but its ok to feel bad for yourself every once in a while and complain about it-- thats what we are all here for!!! :D

jkmunchkin Rising Star
jkmunchkin
Posted
  • Author
Ha, jk, I know your pain well. I am also a New Yorker and have experienced many of those late night evenings when I'm dying for a snack and just can't have one. There's something so integral to the New York culture of drinking late, then eating something awful at 3 am, and we can't. It stinks. And then you'll tell someone you're hungry, they'll ask why you're not eating and you don't want to do into the whole gluten thing, so you just avoid the conversation. Nothing more rockin that pulling out a small apple sauce cup in a bar at 2 in the morning. Anyway, just wanted to say I'm with ya...

OMG, Exactly!!! It's like part of NY culture that you go out drinking to ridiculous hours and there are still places open to get a meal afterwards. I was just feeling sorry for myself yknow.

Jillian,

I am sorry you had a rotten night. I do think that people not understanding and having to starve to death at times is the worst part of having celiac. I had a woman literally "yell" one night while we were out to dinner for my husbands graduation with about 75 people there, "Is that all you are eating??". I only had fruit on my plate. Of course everyone turns to stare and I have to mumble that I am allergic to wheat. The short version that I choose when answering ingnorant rude people! She just thought I was anorexic since I am skinny, so she thought she would embarrass me.

You can always come here to vent! We all understand. It can be a very "lonely" disease at times, but I am greatful too.

Monica

Yeah I'm also naturally really thin, and nothing like having a bunch of drag queens staring at you wondering why the skinniest girl at the table isn't eating a thing. Just makes you feel awkward.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of...
    3. Ginger38
      - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this. He couldn’t guarantee me a negative biopsy meant ...
    4. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    5. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,466
    • Most Online (within 30 mins)
      7,748
    Mike G Army EOD
    Newest Member
    Mike G Army EOD
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      My only proof

      By Mari · Posted

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      Challenges eating gluten before biopsy

      By Ginger38 · Posted

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.