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


Coconutkris

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moosemalibu Collaborator

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.


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ItchyAbby Enthusiast

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!

IrishHeart Veteran

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! ;)

w8in4dave Community Regular

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!!

Pegleg84 Collaborator

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!

tonalynn Explorer

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. :-)

tonalynn Explorer

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 Veteran

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.

 

Open Original Shared Link

GF Lover Rising Star

I want one of those bubbles :lol: 

 

Colleen

tonalynn Explorer

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.

 

Open Original Shared Link

 

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!

squirmingitch Veteran

LOL!

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    • trents
      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
    • trents
      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
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