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learningtobreathe

Feeling Afraid To Eat

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I'm not sure if it is common for everyone, or if I am just being weird, but I have days where I don't want to eat anything because I get freaked out that there could be some kind of cross contamination or that I will react. This also comes on the heels of having a horrible episode of ingesting gluten via cross contamination. 

 

We use farmers for our produce, and I worry about them having eaten something with gluten and having it on their hands when picking our produce and then ingesting it. I worry about manufacturing practices. I worry about glutened peoples hands touching the gluten-free boxes and then me touching them and ingesting something from their hands on the box/bag/whatever. I just returned from my inlaws, who tried very hard to make their kitchen an okay place for me to eat. It was difficult to eat anything there: they don't have a dishwasher, they use the same towels to dry all the dishes and wipe their hands as opposed to separate ones- but were gracious in going to separate towels, the list goes on. My sweet husband washed and washed and washed some more and kept those dishes separate and the towels to dry them separate. He was such a blessing to have there to help. We cooked everything from scratch and worked so hard to avoid cross contamination. Still, I ended up feeling lousy a day after we returned home; it wasn't a full blown episode like last time, but a much smaller one. It was still very uncomfortable. (I really do want to acknowledge the absolutely kind efforts and thoughtful gestures his family extended while we were with them.)

 

Does this ever go away? Or will the discomfort and lack of trust in things being safe to eat go away? 

 

How do people handle being away from home? I do not eat processed food (or at least I avoid it at all costs, but I understand the option of it when traveling if that is needed. I absolutely refuse to let this rule my entire life, but right now it seems to. I'm okay with the adjustment part of it. I don't like it, but I am okay with it. I'm grateful for knowing what was going on within my body for so long! I feel like I have answers. Navigating the time after answers is where I am hoping to find some more support.

Edited by learningtobreathe

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So sorry you are going through this awful anxiety. While it doesn't happen to everyone it isn't unheard of to be so frightened especially if your symptoms were severe. You may also be going through a withdrawl that can highten those feelings of anxiety.

If you wash your produce before eating or cooking that will be enough to keep you safe from any gluten risk or for that matter any number of nasties. Fresh meats, chicken, eggs etc will be fine so no worries there. If there are packaged items that you would like to try you can ask here if anyone has info on any possibility of CC. You can also call the maker and ask them.

Try to not eat out if at all possible until you have healed a bit and your CC fears resolve.

I hope you are feeling better soon.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hello learningtobreathe,

 

I just want to let you know that you are not alone in this battle. I've only been gluten-free for a couple of months now. The thought of eating outside of my home is pretty frightening. I have found a couple of 100% gluten free places that I've enjoyed, but other than that, it's homecooking for me. I have come to the conclusion that this is just one of those things that only time can help. When visiting family or really close friends, I literally bring my own food and in some cases, my own dishes. Other than that, I unfortunately have to turn down invitations. When I think of the week of feeling awful I experience after being glutened, I would rather politely say I can't make it than take a chance. 

 

Hang in there! I believe we're going to make it out on top!!

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We have found that it has gotten much easier to navigate this over time.  You meet more people that can relate and share what worked for them.  And all of the "new" things to learn after diagnosis become your normal routine.  Family can also get better over time and with some practice.  Time helps with the physical healing, and it gives you different perspectives when troubleshooting issues.

 

If we are going to try gluten free processed foods, we prefer to look for those with gluten-free certifications.  Which reminds me that I am still looking for a resource of what the different certifications mean.  And we do tend to travel with our own gluten-free kitchen basics.  It makes travel that much easier.  And don't discount that grocery stores are fabulous places to stop and refuel when travelling.  We have found a quick trip to the shops will usually get us plenty of food (think meats, nuts, fruits and veggies). 


My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

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I always bring my own food and usually disposable dishes when traveling.

 

As far as the rest of it goes, of COURSE, wash your produce! You will not only be washing off any gluten, but pesticides and dirt and germs too.

 

And always always ALWAYS, wash your hands before putting anything in your mouth. If a gluteny hand has touched the package in the grocery store, transfer the contents of the package to a clean Tupperware type container, wash your hands, then eat, knowing you are safe.

 

As far as manufacturing practices, you can trust Kraft and Con-Agra and Nestles to disclose not only any gluten sources, but also same facility/same equipment. Those are large parent companies whose products are available in just about any type of food. There are others too but I lost the list when my old computer died. Unilever is one, I believe. I know Ben and Jerry's is really good about that too.

 

You'll get used to it and as you start to heal your anxiety will be reduced too. Hang in there! :)


gluten-free since June, 2011

It took 3 !/2 years but my intolerances to corn, soy, and everything else (except gluten) are gone!

Life is good!

 

 

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I can really relate to this! But can safely say it's fading. Originally when I started I was terrified of even gluten-free processed foods 'just in case' someone working on the production line had eaten gluten and touched something. Or... I don't even remember the other scenarios that were in my head but I do remember how exhausting that need to control it all was. Exhausting and understandable. I'm still probably a bit irrational (my partner eats gluten free by choice except when out but also except nightly beers and I still fear kissing him after those (but I do and have never gotten sick)... but I've loosened up a lot through experiencing and remembering its not in peoples' interests to get us sick so they are as careful as we are a lot of the time.
Definitely prefer eating at 100% gluten-free restaurants but the 'risk' of enjoying meals elsewhere with friends has been worth it and unproblematic in all cases thus far :) and when it's not I'll re-evaluate perhaps, instead of worrying about something that hasn't happened (which I do a lot :) ! ).
I hope you're feeling ever better !

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I feel for you as well. I basically live my life only eating food I made myself, unless it's a 100% gluten-free restaurant. this is going on 3 yrs for me. it doesn't get easy per se, but definitely easier to incorporate into my life and social situations. bring your own food, etc. totally doable. good luck! 


gluten free since 11/12  

dairy and soy free since 1/13

chocolate free since 6/14

 

I miss my chocolate!!!   but I'm not sick anymore, and that's what really matters  :)

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It gets better. You just have to find your own protocols and follow them. I double check everything. But I just got back from a trip to Denver and Boulder. gluten-free menus and food all over. The farmers market in Boulder had six gluten-free bakeries. Life is getting easier. 

Hey Jays...would you share where you ate safely in Denver and Boulder?  I don't live too far from there and if we go I'd love to have a safe place to eat.  Thanks! 


January 2014-Celiac

August 2014- Hashimoto's

"You never know how strong you are, until being strong is your only choice."

Bob Marley

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Hey Jays...would you share where you ate safely in Denver and Boulder?  I don't live too far from there and if we go I'd love to have a safe place to eat.  Thanks! 

There is a new national chain, started by Dr. Andrew Weil, that has a location at the Cherry Creek Mall.  It is called TrueFoods.  Wonderful gluten-free and vegan options.  Also had gluten-free pizza and salad at Pizzeria Locale (I think), which is in both Denver and Boulder.  Salt and Riff's in Boulder were great and good to work with.  And the best, in Denver, was Beast + Bottle.  Just make sure you let them know when you order.

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