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

Disease Making Me Feel Isolated


Mac20elle

Recommended Posts

Wonka Apprentice
I don't think you can assume any sort of food in a restaurant is gluten-free until you discuss it with them. I have a local Thai place I go to and there are about 6 dishes I can eat and they now know me so I feel safe going in there.

But back to the actual topic, I don't really have anything new to add other then life is what you make it. I'm often times a bit surprised about how upset people seem to be over having to take wheat/gluten out of their diet (i can't have gluten, beans, squash, tomatoes and the list goes on, my 16 year old daughter has to be gluten-free and peanut and nut free so we are no strangers to alternative diets).

Maybe its my perspective of look back over 50 years of living that I know for sure adjusting how I eat to be healthy is NOTHING. Trust me when I say life is going to throw you way more curve balls than that one! But even my 16 year old daughter takes it in stride, it is what it is. She goes out with friends (just like I do) all the time and figures it out, she has had a couple of boyfriends and they are fine with it. I'm single and I've never had anyone really care about my eating issues in a negative way. I've had a few guys really seem not to care and of course they didn't last long. Most care and try and be careful with where we go.

Yes I've had a few down moments too (hey I'm human) I remember a neighborhood Christmas party, it was catered and before going I was sure there would be veggies or something I could eat there. There wasn't, it was fabulous food, smelled great and I couldn't eat any of it. All I did was have a couple of glasses of wine. And I did feel gypped about it. But we had a neighborhood bar-b-q this summer and I called the few people in my neighborhood who know about my gluten-free status and asked them if by chance they were making something I could eat. They did and so did I and it worked out.

Why don't you go to a few places near where you work, were you co workers lunch and speak to them, figure out what you can and can't eat in them. I eat a lot of salads in lunch places and I carry little packages of Annie's dressing in my purse. I also carry gluten-free soy sauce. I guess having food issues requires you to think ahead a bit.

For me, its been 6 years being gluten-free now, its just not a big deal. Again we can't always control what path our health takes (or even a lot of the other stuff that happens to us) but we can control how we react to it. I choose to have a blast.

Good luck,

Susan

Susan, you have an amazing attitude towards life in general. Bravo.


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



Celiac.com Sponsor (A8-M):



brendygirl Community Regular

I agree with the EAT AHEAD of TIME and CHECK menu ahead of time (I check online and keep a file of menu printouts in my car-I usually meet dates at the restaurant), don't order salads (there always seem to be crouton bits or something naughty hiding in there).

I also agree with BRING YOUR OWN food ---I take it further than the purse--- I stock gluten-free snacks in my desk drawers, attache bag, car, boyfriend's house, etc.

As for DATING (I was also diagnosed during my divorce--which was a blessing not having to share a kitchen with a glutenous piggy husband who would've never learned the gluten-free accommodations I need), I have rarely found dating with celiac disease a problem. I just say I can't eat bread or flour and they have told me they equivocate that with the idea that the likelihood of me becoming overweight is small. So,100% of men view it as a positive. I have lots of brothers and male friends who ALL fear marrying a fit woman and having her become really heavy afterwards. Mean, but true.

The only problem with datingis when we're on an all day group outing or something and everyone orders pizza at the end of a long day. Or a date runs way longer than anticipated. Or I've looked at the menu ahead, and then someone changes the restaurant! In these cases, I probably used all my snacks for lunch, not expecting the day to go so long, and now I can't eat and have to endure everyone else gorging on that yummy smelling pizza or whatever. The others in the group often assume I'm vain and on a diet to keep my weight in check if I can't even eat a bite after a long day, which is annoying, even though I know in my mind it's nothing personal. They often encourage me to eat the food, and one "No, Thanks" is not enough. ugh

I feel for you. The work situation for me has gotten better after 2 years, but it was a long road. The woman who's a preacher's wife was the most obnoxious about it. People are truly cruel.

Wonka Apprentice
I agree with the EAT AHEAD of TIME and CHECK menu ahead of time (I check online and keep a file of menu printouts in my car-I usually meet dates at the restaurant), don't order salads (there always seem to be crouton bits or something naughty hiding in there).

I also agree with BRING YOUR OWN food ---I take it further than the purse--- I stock gluten-free snacks in my desk drawers, attache bag, car, boyfriend's house, etc.

As for DATING (I was also diagnosed during my divorce--which was a blessing not having to share a kitchen with a glutenous piggy husband who would've never learned the gluten-free accommodations I need), I have rarely found dating with celiac disease a problem. I just say I can't eat bread or flour and they have told me they equivocate that with the idea that the likelihood of me becoming overweight is small. So,100% of men view it as a positive. I have lots of brothers and male friends who ALL fear marrying a fit woman and having her become really heavy afterwards. Mean, but true.

The only problem with datingis when we're on an all day group outing or something and everyone orders pizza at the end of a long day. Or a date runs way longer than anticipated. Or I've looked at the menu ahead, and then someone changes the restaurant! In these cases, I probably used all my snacks for lunch, not expecting the day to go so long, and now I can't eat and have to endure everyone else gorging on that yummy smelling pizza or whatever. The others in the group often assume I'm vain and on a diet to keep my weight in check if I can't even eat a bite after a long day, which is annoying, even though I know in my mind it's nothing personal. They often encourage me to eat the food, and one "No, Thanks" is not enough. ugh

I feel for you. The work situation for me has gotten better after 2 years, but it was a long road. The woman who's a preacher's wife was the most obnoxious about it. People are truly cruel.

I've had the opposite experience. People have bent over backwards with kindness to try and include and accomodate my needs. I am very fortunate to have these amazing people in my life.

brendygirl Community Regular
My advice for eating out is be loud and proud about your celiac disease, if you need to threaten them that they may need to clean their bathroom if they aren't careful then do it.

Celiacmegan, this CRACKS me UP!! I love this one!

Do you have any Seinfeld-like responses for that question we get, "What happens to you when you eat gluten?"

roxie Contributor

I had to send this message to you because I feel exactly the same. I feel very isolated, and I feel really uncomfortable at events where I can't eat any of the food. I don't want to explain my celiac disease to 10 people, and I get worried that they will all think I'm crazy. However, I joined this group, and I immediately got a lot of support and encouragement. It feels really good to hear from people who are going through the same thing. It's great to know that I can ask any question I might have about this disease, and most likely, someone here will know the answer. I'm trying hard to stick to the gluten free diet, but it's still difficult, and sometimes I get sad. But, I know it's something I have to do, and I'm going to get through it one day at a time.

KristineH Newbie

It's nice to know that others feel this way. I was diagnosed with celiac as a baby, and my mom did everything in her power to make me the same foods as everyone else, but it was still obvious at the dinner table when I had weird rice macaroni and everyone else had yummy fun spagetti noodles. Or switch that with rice cakes vs. moist and tasty sandwiches. I am still learning to embrace my 'specialness', but I still find it hard to cope sometimes. I got tired of explaining my celiac disease a LONG time ago and found ways to just hide from the situation. Currently, I am just discovering the help of humor in any awkward food situation. Luckily I have found an amazing boyfriend who is a great listener and lactose intolerant himself, so he knows and understands the trials of a special diet. Food is such a social binder, however I like what everyone else is saying about just learning that there are other ways to relate, and PLANNING AHEAD. We have no choice but to take the time to cook and find the right foods. Everything happens for a reason, right? :P

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,210
    • Most Online (within 30 mins)
      7,748

    BJ OConnor
    Newest Member
    BJ OConnor
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.