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Coconutkris

Finally Diagnosed And Wondering If I Have To Live In A Bubble...

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I was recently diagnosed with celiac disease in October and am no where near normalized with my GI symptoms.

 

I have improved a lot in the past 4 weeks eating gluten-free. But I do not eat out in restaurants and I cook my own simple meals. A lot of people on here will tell you to eat plain, whole foods. I eat vegetables, meat, and potatoes/rice. That is it.  When I can tolerate dairy again I'll add that back into my diet. However, I will never buy from the bulk bins anymore. The risk for CC is too high (scoops and whatnot being transferred).

 

I make all of my food in large batches on the weekend. I pack it in tupperware (new tupperware, not the old, cc'd tupperware from my gluten eating days) and take it to work with me. I plan on doing the same thing for Thanksgiving dinner since I will be going to someone's house I've never been to.

 

Being Celiac means you have to be suspicious of how your food was handled and prepared. You need to be sure that the kitchen staff are aware of what "gluten free" really means. Dedicated cooking oil, dedicated ingredients and cooking utensils, pots/pans  that are also not CC'd, etc. Just because a restaurant offers a gluten free menu does not mean it is safe for Celiac's to dine there.

 

Just my thoughts. Hope it helps you.


Jamie

"We can't help everyone, but everyone can help someone." Ronald Reagan

 

Diagnosed Celiac via blood test 8-22-13

Dairy & gluten free in 8-22-13 then did gluten challenge in October

Endoscopy/Biopsy Oct-26-13 positive for Celiac

HLA-DQ2 positive

Vitamin D insufficiency confirmed 12-6-13

Dairy Added back in successfully 3-1-14

Normal Antibody Levels 3-19-14! 

Egg, sugar alcohols Intolerant 5-2014

Dairy removed again 10-2014 due to ongoing diarrhea symptoms

Diagnosed with Microscopic Colitis after colonoscopy 12-1-14

 

Celiac.com - Celiac Disease Board Moderator

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The Abbster is a quick learner. just sayin... ^_^

 

I do think you are being a bit worrisome for no good cause about this, though, hon.

I buy produce in the supermarket even though there is an in-store bakery.

No problem. 

Our biggest concern is not the produce. 

 

 

 Itchy Abby: I will not buy veggies at on market in town because their bakery is right next to the produce section. There are flour footprints everywhere. 

Oh I am sure I am being OVERLY cautious/nervous/persnickety :) That may fade in time (the anxiety goes away, right? Right? :lol: ) but it's what makes me comfortable right now. Luckily, there are plenty of grocery options in my city!


Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.

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Oh I am sure I am being OVERLY cautious/nervous/persnickety :) That may fade in time (the anxiety goes away, right? Right? :lol:

 

yes, yes,  yes...The anxiety goes away! Hang tough, babes! ;)


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Still not getting  my sarcasm? :lol: If I have to 'splain, it ruins my punch line. 

 

Okay...".If the laminated G F menu was wiped off, it would be safer than what comes out of the kitchen."

 

meh...not the same.

This! Is flippin Funny!!


Recovering Gluten Eater 

DX'd June 17th 2013

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Mmm... this menu is delicious...

 

Anyway, in all seriousness you've come to the right place. Sounds like you've been "gluten-light" for a long time, knowing that it must be a problem, but only recently being diagnosed and realizing how serious it is. You obviously want to change your diet so that it's a safe as possible. However, you don't need to live in a bubble, but you do need to take extra precautions.

 

What I'd be concerned about (from what I understand from your first post) is your workplace. (nanny? daycare?) If you're constantly being exposed to gluten at work (handling it, etc), then I think you might need to have a sit-down with your employer and explain your situation, that you have Celiac disease and gluten is toxic to you, and that you have to be extremely careful. This will have to be explained to the kids too. If you enjoy your work, and all is well aside from the gluten, I'm sure something can be worked out. As for your own food, ask if you can bring a few things from home (maybe a container of dedicated gluten-free stuff, like a previous poster said they keep at their parent's house) like cutting board, cooking utencils, a dedicated pan or two, dried food, snacks. That would save you having to lug things back and forth everyday. But you'll have to negotiate that yourself. While handling gluten can be tricky, as long as you wash your hands and keep everything clean it should be ok. Maybe use plastic gloves if you're afraid of touching it. I hope it works out.

 

Aside from that, ditto on what everyone else said. It's scary at first, but stick to the basics, don't eat out too often and do your research when you do. You're still healing so it's a little early to be saying whether you're super sensitive or not, but be as nice to your gut as you can will help you heal faster.

 

Welcome to the Forum, and good luck!


~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.

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CoconutKris, I am new to Celiac as well. I had never heard of it before, didn't even know gluten could hurt you or really what it was. I've only been gluten free for not quite 2 months. I'm really struggling with the adjustment because 1. I was a total bread and carb junkie, 2. my relationship to food has been thrown completely out of whack, 3. Have no idea how different I'm supposed to feel after being off gluten for awhile - I've eaten it my entire life and have only been off for 8 weeks, 4. have such an issue with any type of confrontation that I'm finding it close to impossible to advocate for myself in gluten environments, 5. am struggling mightily with my depression so I am one of those newbies mentioned above who goes overboard, freaks out over everything and is very depressed.

 

I understand the feeling of maybe having to live in a bubble. You hear horror stories from the ultra sensitive and wonder if that is or will be you. I don't know about you, but my entire life seemed to revolve around food, and now that so much of it is off limits, I'm feeling like living in a bubble is the only way to stay safe. Many people here are very fortunate in that they love to cook. I am not one of those people. I CAN cook, I just hate it.

 

You sound like you had a jump on your gluten problem before your diagnoses - good for you! You already have a lot of tools at your disposal that you've learned through previous trial and error. Are you a nanny? It sounds like it from cooking for kids in someone else's house. If you're feeling ill after being in that environment, is it possible to talk to the family about going gluten free? If you are in SF (I'm from just south of there!) they may be open minded enough to consider it if not jump on board. It would certainly make it easier on you and what would be the worst they'd encounter - a healthier family? ;-)

 

As for me, I've been cooking more at home (blah!) and have only eaten out 2 or three times. I always feel lousy, so I have no idea if I've been glutened, but like SF, the area I live in (outside of Boulder, CO) is very food problem conscious, so I'm fortunate enough to have a lot of gluten-free options, or regular restaurants are very familiar with gluten sensitivity. But I still feel extremely restricted and rather depressed about the limit on my options now. I've worked from home for 2 years now, so I've gotten out of the habit of having food to take with me. I'm also now allergic to almonds, so a lot of my previous go-to snacks are off limits. I've been eating a LOT of Hershey's Kisses....

 

I wish you the best of luck. It sounds like you've really listened to the messages your body has been sending you and made the changes you needed to. You are so proactive with your health, I think you will find your way through this and be ok. :-)

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GFinDC - where did you purchase your bubble? What's it made of? I'm outside of Boulder, and all I can find here are hemp bubbles. They smell funny and you can't see through them - I'm bumping into everything! Plus, there's a bunch of dummies following me around that keep trying to light my bubble on fire.

 

I can't get any type of plastic or man-made material bubbles here - the Environment Nazis keep shutting down the factories or dropping gluten bombs in their HVAC systems so whatever they do make is contaminated. Is there a website or a mail order program I can use?

 

Plus, these hemp fibers keep getting stuck under my keyboard, makes it hard to type....

 

:P

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GFinDC - where did you purchase your bubble? What's it made of? I'm outside of Boulder, and all I can find here are hemp bubbles. They smell funny and you can't see through them - I'm bumping into everything! Plus, there's a bunch of dummies following me around that keep trying to light my bubble on fire.

 

I can't get any type of plastic or man-made material bubbles here - the Environment Nazis keep shutting down the factories or dropping gluten bombs in their HVAC systems so whatever they do make is contaminated. Is there a website or a mail order program I can use?

 

Plus, these hemp fibers keep getting stuck under my keyboard, makes it hard to type....

 

:P

 

Oh, that's awful Tonalyn!  Some people just don't understand the importance of a good bubble!   Wow, I don't know how you stand it, what a bunch of maroons there!  Next thing you know they'll be wanting to get inside your bubble and light up!  :)  Can't remember where I got my bubble, but here is a site that sells them.

 

http://www.funballz.com/products/inflatable-bumperz-bodyzorbing


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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I want one of those bubbles :lol: 

 

Colleen


HAVE A SUPER SHINY DAY

 

LTES gem 2014


*Multiple AI Diseases

*General Insanity


"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

Celiac.com - Celiac Disease Board Moderator

 

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Oh, that's awful Tonalyn!  Some people just don't understand the importance of a good bubble!   Wow, I don't know how you stand it, what a bunch of maroons there!  Next thing you know they'll be wanting to get inside your bubble and light up!  :)  Can't remember where I got my bubble, but here is a site that sells them.

 

http://www.funballz.com/products/inflatable-bumperz-bodyzorbing

 

Perfect! Not only will I be able to see, but also walk around! My cats will hate it though, they wouldn't be able to sit on my lap. Maybe I'll finally get this group of stoners to follow someone else. I'm putting my hemp bubble up for sale on ebay....

 

Happy Thanksgiving!

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LOL!


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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