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

Diet So Isolating


Marlene

Recommended Posts

Marlene Contributor

I don't know about you, but I find this diet can be so isolating. The girls from my office just went out for lunch and did not even bother to ask me if I wanted to go -- I probably wouldn't have been able to anyways since I think they are going for pizza. I just find that at social functions (which always seem to revolve around food) I end up having to eat something different from everyone else.

Even at home, I feel so isolated sometimes. I try to cook meals that we can eat together whenever possible, but a lot of times it just doesn't work out. Sometimes by the time I get my food ready, the family is half done their meal. They are not trying to be rude, but they might as well eat while their food is hot instead of waiting for me, right?

I could go on with more examples but I think you get the drift. Does anyone have any suggestions or ideas? Is this something that I am just going to have to learn to live with?

Thanks a lot,

Marlene


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



Celiac.com Sponsor (A8-M):



StrongerToday Enthusiast

I totally understand. We recently went on a family vacation which really went pretty well. Most days we went to places where I could get some great food. It was on the last day they went to an Irish pub (gee, thanks), ordered onion rings, passed the soda bread, had huge lunches, then went to a French bakery. Then at dinner they didn't want to go out, but I was starving - all I'd had was the "low carb" burger (no bun) and a side of brocolli! :angry: Then the next morning they ate croissants from the French bakery for breakfast and said "gee, sorry we can't offer you any".

At first I was p.o.'d they'd said that *again* then I realized I'd have been mad if they hadn't offered. Yes, finally I realized this is just the way it is and to get used to it.

We went to Margartiaville for lunch where I had called ahead and the chef came out and positively fawned over me, brought me fresh fruit, had a special desert for me... it was all great until my dad said (eating some of my desert) "gee, now we know how it is to live your diet". Yeah, don't think so!!

But it's all good, I'm the only one who came home who didn't gain weight on the trip :lol:

melie Apprentice

I hear you, Marlene. This is something I'm still navigating. I feel that I have a large "FREAK" sign on my forehead when there's ever a social event revolving around food. I hate being different and hate the attention from being different, and answering all the same questions, seeing the same ''glad it's not me'' look in people's eyes.

Melie

Jestgar Rising Star

I'm sorry you're feeling left out. At my work usually they ask, or they 'we're going out for Sushi, we assumed you wouldn't want to come'. And I'm fine with that. Sometimes I say 'let's go here', or 'I can't eat at that restaurant, how about this one?' And sometimes I email other friends and go out to lunch with people that care about me.

If it looks like they're going out, ask. If they say they're going for pizza, make some comment about it sounding like fun (and about how you'll probably skip lunch so you can leave at 3, if you can get away with that). Gently include yourself, even if you don't go with them.

DingoGirl Enthusiast

It feels even MORE isolating in the beginning.....but the longer you do it, it does get better. :) When I dine out, and I have been able to do it safely quite often, I will speak to the chef or kitchen manager privaely, and just very sweetly explain what the situation is. They have alwyas been wonderfully accommodating and I"ve never gotten glutened from eating out, except once in the beginning. I will usually order a piece of sauteed fish with vegetables, alwyas ask for a clean pan, just put butter/lemon salt and pepper in it.....butter and lemon on veggies. It's always been fine.

Dining out at tiny bistros is even easier. I have had many things there - - they usually use fresh, pure ingredients and if there's any question, I jsut don't bother. Had some very spicy scallops two weekends in a row at this fabulous little restaurant we have here - my dear friend happens to be a server there so gets me all the ingredients and brings bottles/containers to me if there's any question.

I would suggest finding places in which you feel comfortable and safe, establish a rapport, and go from there. But a pizza parlor - I don't think there's any way to eat anything in there - bring your own food and drink a glass of water....just not safe. You have to pick and choose your activities with this disease - - but I find most people, friends, family, restaurant staff, are really accommodating....

gfpaperdoll Rookie

Please give yourself a break at home and only cook one gluten free meal for the whole family!!!

CMCM Rising Star

I think we all feel this way sometimes. But I've decided that as with most other things, people are generally thinking mostly only of themselves and tend to forget about the dietary limitations of others. It's just not forefront in their thoughts as it must be with us. SO.....I choose to think of this as mostly in my head, and I stop myself from being upset or offended most of the time. And actually, if you are inventive, most places have things we can eat. I got to the pizza place and eat salads from their salad bar. There are always people on diets who won't eat sugar, desserts etc. due to the diet, so this isn't all that different!


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



Celiac.com Sponsor (A8-M):



DebbieInCanada Rookie
..The girls from my office just went out for lunch and did not even bother to ask me if I wanted to go -- ...

For lunch at work - take initiative and control of the situation yourself. You dont' have to wait for someone to ditch you, or half-heartedly say "oh, I'm sure you don't want to come for pizza". Plan a lunch outing yourself. Ask one or 2 friends, choose a place that YOU can eat, and tell others you are going to restaurant X, and they are invited.

And at home - develop as many "everyone" meals as you can. I have very few double meals. If we do have gluten-free and non-gluten-free choices, it's for a part of the meal, but not the whole thing. For pasta - one pot of sauce, and then 2 pots of pasta is about the biggest effort I make! I make gluten-free Burgers, and then everyone else has a wheat bun, and I do gluten-free bun. Or, I make smoke sausage, and everyone else has perogies, and I have a microwave baked potato.

There are tons of meals that are "naturally" gluten-free, and very easy to make that way with small substitutions. (check out the baking forum!)

Hope that helps a bit.

Debbie

Archived

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

  • 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. - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    2. - Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    3. - Aretaeus Cappadocia replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Dried Chickpeas

    4. - ainsleydale1700 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,433
    • Most Online (within 30 mins)
      7,748

    emmelyn
    Newest Member
    emmelyn
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    • ainsleydale1700
      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer.  The doctor said I don't have Celiac genes.  I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac.  I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years.  He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy.  Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.    
×
×
  • 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.