Purposefully Glutening Myself?

[annamarie6655]

Hi everyone, 

I don’t mean to use you all as my personal dumping ground, but the support I’ve seen on this forum is unlike anything I’ve ever experienced. 
 

So, my mother and I have always had a rocky relationship, but when I got diagnosed w celiacs, I thought we were now on the same team together. She started off saying things like “ We’re gonna figure this out together” or “I will always make sure you never have to worry about food with me” to telling my siblings that I’m not grateful enough and I don’t have a right to be upset when I get glutened bc I do so “purposefully”…

 

.. so I’m brand new to celiac and just learned I can’t just trust gluten-free labels unless it’s certified. I’ve been trying my best, and thanking everyone for being accommodating and trying to make things as painless as possible, so I just don’t understand. Should I be bending over backwards for people who accommodate me? Or just general gratefulness? 
 

This whole diagnosis has further ostracized me from my family and friends, and it’s really hard not to feel completely alone. I seriously appreciate any advice you have to share!

[Rogol72]

Hey @annamarie6655,

I think we've all glutened ourselves during the learning process of what it takes to be truly gluten free. Don't be hard on yourself. You're not glutening yourself purposefully ... it takes time to figure it all out.

You should stand up for yourself and advocate for yourself at all times. The family dynamic can be very difficult for us Coeliacs.

It may be worth mentioning that Coeliac Disease is genetic and runs in families. And any of them could develop Coeliac Disease in the future ... though that may be a difficult conversation to have. It was for me, but at least my conscience is clear! It's ok to be grateful but not overly so. I would tell them that it's a steep learning curve and I'm trying to figure out a major lifestyle adjustment to preserve my health now and into the future.

If it makes you feel any better, I have a sibling who thinks the dinner table is their own personal buffet and dips into the food of whoever is sitting opposite or adjacent without asking for permission ... which is extremely rude. No regard for cross contamination or poisoning my food with gluten. Despite my diplomatic efforts in asking that sibling stop it and explaining the consequences of a crumb of gluten getting into my body, it keeps happening. At family dinners and at restaurants, I now sit at the opposite end of the table well out of arms reach of that sibling.

At another siblings 60th BBQ birthday recently, I was trying to assess a safe place to cook my homemade burger having brought my own food .... I was attacked by an in-law who said "there's no place safe to cook just use the BBQ". I stood my ground and asked for a clean frying pan to cook my burger on the cooker.

If you live in a city, you might be able to find a support group or make a new Coeliac buddy in a gluten-free Cafe of Breakfast Bar. There's lots of people on Instagram and Tiktok who are Coeliacs that arrange meet-ups. And there's several Coeliacs running podcasts on Spotify.

[Beverage]

Wow. Well, I do believe education can do wonders to open peoples' eyes. Many will get it, but some will always stay closed, and you can't battle that forever.

Your family members have an increased chance of Celiacs themselves (and need to regularly get the blood screening test), so they do need some basic info for their own health.

Maybe people here can suggest sources to help educate your family.

Would they be willing to read the celiac com newsletter ? Sign up for it? 

How about the great document for newbies available here?

Maybe print some out, leave it out for them to read, ask them to read it, don't be pushy or dramatic, just ask sincerely and pray. 

With one stubborn person, my brother, I printed an article out, told him I was confused about something in it, which I really was, asked him to read it and what did he think it meant. It started a great calm conversation, the resistance gradually stopped, and he is now a strong supporter. He actually got himself tested.

When I was first diagnosed, I remember someone here suggested the U of Chicago Celiac site to me. Lots of good info there. I have printed out pages here and there, especially the ones about who should get screened for celiacs, 1st degree relatives, etc. 

https://www.uchicagomedicine.org/conditions-services/gastroenterology/celiac-disease

[Scott Adams]

Dr. Jean Duane published a book on Celiac.com, and although all chapters are worth reading, there are some that cover this perfectly. Here is the link to the 1st chapter:

This chapter and others cover this topic well: