How do you manage your social life?

[Raquel2021]

After my diagnosis almost 2 years ago I am finding being in social situations is difficult as almost all human interactions happen around food. I find it incredibly difficult to eat out eventhough I want to. I end up getting sick most of the time. Eating with relatives or friends is very difficult as well. I got sick last year for 3 weeks after eating at works Xmas lunch. Eventhough I was assured every time everything was gluten free. How do you deal with this? I find it difficult. I also have anxiety about cross contamination as  not everyone at home is gluten free. What made everything worse was the appearance last year of neurological symptoms.  My Dr. Thought I had MS. I don't but have felt scared since then.

[mbr22m]

You’re not alone. Everyone who has been diagnosed with celiac goes through this unfortunately. First, I would definitely recommend buying GliadinX enzymes. I always take 2 whenever I eat out. I only eat at places with gluten-free menu and always stick to basic meals to reduce cross contamination risk (usually avoid anything with a sauce that is usually thickened with flour, and pastas, fried food) For pot luck or holiday meals, I always bring a dish for myself and don’t bother asking the host (people will say it’s gluten-free but most don’t understand the intricacies of celiac). I also always bring my own condiments (butter, dressing, Mayo, etc)

[Scott Adams]

Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease:

This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:

 

 

[Raquel2021]

On 11/12/2023 at 8:50 PM, mbr22m said:

You’re not alone. Everyone who has been diagnosed with celiac goes through this unfortunately. First, I would definitely recommend buying GliadinX enzymes. I always take 2 whenever I eat out. I only eat at places with gluten-free menu and always stick to basic meals to reduce cross contamination risk (usually avoid anything with a sauce that is usually thickened with flour, and pastas, fried food) For pot luck or holiday meals, I always bring a dish for myself and don’t bother asking the host (people will say it’s gluten-free but most don’t understand the intricacies of celiac). I also always bring my own condiments (butter, dressing, Mayo, etc)

Thank you. So tough. I am still getting used to it and feel like avoiding cross contamination all together is best.  Meaning I have not eaten at restaurants for more than 6 months now and not going to works Xmas party. That's still leaves me sad.

2 hours ago, Scott Adams said:

Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease:

This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:

 

 

Thanks Scott.  So difficult.  I am still grieving the loss of my worry free life. 

[RMJ]

My personal theory is that the company of people is more important than the food. So I have been known to go out with people but not eat anything.  Or just eat white rice.  None of my friends or coworkers ever made a fuss about my doing that.

[Raquel2021]

14 hours ago, RMJ said:

My personal theory is that the company of people is more important than the food. So I have been known to go out with people but not eat anything.  Or just eat white rice.  None of my friends or coworkers ever made a fuss about my doing that.

I tried that once. Went to a restaurant with coworkers for a celebration.  I thought I could handle it. Had lunch before I went and by the end of it. I felt frustrated, hungry and sad. It did not go well.  I agree with you do. Those social interactions are essential. 

[chocominties]

I end up not having one, more or less.  Ha ha.  
 

Gluten makes me violently and severely ill, which makes me fully immune to peer pressure.  But it wasn’t always like that.  I would be agreeable and go out to eat at places that claimed to have a gluten-free menu, or I would eat home cooked foods that seemed safe.  Then I almost wound up in the hospital.  (Clarification: my doctor wanted me hospitalized but I couldn’t afford it and took care of myself at home.)  It was the first time I’d been that sick ever since figuring out I had issues with gluten, and it made me realize that other peoples’ feelings are not worth my health.  
 

So every once in a while I’ll concede to go out and not eat.  We have a party next week and we’re having Italian catered.  We were asked to inform if we had dietary issues, but what am I comfortable eating from an Italian restaurant?  Nothing.  It’s not worth it.  So I will eat nothing.  There are a handful of restaurants I trust, and even then I don’t really trust a large-scale catering situation.

Fortunately, I don’t ever see my family.  They think the gluten thing is “all in my head.”  BF’s family does understand food restrictions and allergies very well, but this past year I ate a meal right before a trip and got pretty sick to the point I had to run out and buy Imodium an hour before my flight, and take it every morning I was overseas.  So I decided to make my own Thanksgiving foods this year.  

I’m now almost 15 years into the gluten-free life.  I don’t want to be a downer, but these are the kinds of choices you have to make.  You can hang out and not eat, and possibly be frustrated.  You can avoid hanging out and get labeled as antisocial.  You can go and eat and get ill.  If it’s a family situation where you can bring your own food, that’s better than the other options (unless you hate your family and would rather skip out), but there might be an AH who makes a big deal out of your special meal, or who makes you feel bad for not eating Grandma’s special dish.  
 

Just remember that your health is more important.  For me, gluten triggers what was diagnosed years ago as ulcerative colitis.  If someone tries to make me feel bad I tell them that “no food is worth making my intestines bleed.”  Usually stops them right there because they didn’t realize the potential effects are so severe.  Shocking them with a little harsh reality.  
 

Good luck.  

 

[dixonpete]

10 hours ago, chocominties said:

For me, gluten triggers what was diagnosed years ago as ulcerative colitis.

 

That was my deal as well, celiac disease and ulcerative colitis. I also had an abscess. The order of appearance was abscess, ulcerative colitis, then celiac disease, all starting when I was 42. I'm convinced it was immunological hell my guts were going through that begat the abscess.

As far as social life, I was so reactive to gluten and other foods that I shut all that down. It just wasn't worth the risk.

[Celiac Kim]

I bring all my own food where ever I go. Any social gatherings or restaurants. I'd rather be safe than sorry. I actually prefer that. People understand.