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pipermarau

The Grocery Store

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My gluten problem is on the extreme side, so much that I wince at shaking a stranger's hand or using a public pen.  I'm just curious if anyone has had issues with walking past the Bakery corner while shopping for groceries.  One of my stores has all the fruit and veggies right next to the bakery, so I have to rinse the food 'just in case'.  Some days I think just smelling the cookies and donuts gets my symptoms flaring.  I've learned to shop after they close the kitchen down but some days I have to go before 5pm and that is when I seem to be randomly glutened.  

 

If anyone else out there feels like a constant victim, you are not alone.  I wish it was as easy as reading labels for me but hugging my friends can get me sick :(  When I go out in public I touch nothing unless I have to buy it, and then when I get home I change clothes.  We all have to be extra careful so I just want to send a virtual hug to everyone, especially if they are feeling like their house is the only safe place left.


At age 16 I said

"I love mac n' cheese sooo much I'm gonna die eating it!"

It's a good thing I have a sense of humor...

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Celiac.com Sponsor (A8):

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Hi Piper,

I move this topic and your pet food topic to our super sensitive celiac section since the experience of being glutened from the sources you talk about are atypical for most people with Celiac.  That way people know where you are coming from and can reply accordingly.   Feel free to post things there so you can get the answers you need.

 

Do you have a wheat allergy as well as Celiac disease?  The things you describe, like hugging gluten eaters... I have not heard of any seuper sensitive Celiac even experiencing those.  Do you struggle with anxiety about gluten? 


I am my husband's "Silly Yak Girl" :)

I was diagnosed with Celiac Disease in January 2013. I also have Lupus and Common Variable Immunodeficiency(CVID) for which I am on IVIG.

Celiac.com - Celiac Disease Board Moderator

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Have you considered avoiding grocery shopping altogether? In this day and age, we have technological advances that allow us to bypass grocery stores if we want to.

 

I get fresh produce and eggs from farms. (I have an organic farm that allows you to pre-order whatever fruit and veggies you want and pick it up on a weekly basis)

 

As far as non-perishables, I get them from Amazon and Vitacost. People who eat meat and drink milk can also source them from farms.

 

I'm not super sensitive, but I like the convenience of having things dropped at my door. Plus, it's easier to avoid buying stuff that I don't need! 


~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 

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I don't worry about hugging, but I DO wash the fruits and veggies for that reason.  My new grocery store here in Seattle is great. The Bakery is on the opposite side of the store than the produce.  In Hawaii, they we next to each other and I know I have gotten sick once or twice from that. If I walk down the bread aisle or stand in the bakery of the store, I DO smell the smell that I know I will get sick from. I have not gotten sick from it. At least not noticeably, but I would not be surprised that if I stood there for a while, that I did.  I did not realize this was a super sensitive thing. I have considered wearing a facemask to the grocery store in the past but I never did. If I ever get sick from standing in the bakery, I will though!

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I've never gotten sick from just hugging someone, but I have gotten sick from hugging someone and getting their hair in my mouth! I guess I hug a lot and I wouldn't have thought anything of it but after a few times I was researching and hair products have terrible amounts of gluten in them. Boo. I am super super sensitive. Most people would never have to consider such a thing but I'm just sharing my experience so you can feel less alone.

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this is a reply to All:

 

Thank you for moving the thread to a place where it will be read by other sensitive patients.  I certainly do have anxiety about glutens since my near diagnosis.  the Drs do not know if I have celiac, allergies, or a crazy form of IBS that reacts to glutens.  Before making it to the Dr I screwed up their celiac test by going on the diet three months before they could scope me.  It was a choice of life or death at the time and I chose to live long enough to get the tests.  I wish I had known you needed to still be on wheat to get a "good" result for celiac but I was 82lbs and dropping.  When they allergy tested me nothing came up.  NOTHING.  We found it strange since I do have a bad skin reaction to wheat and latex products.  The blood test was never redone and I've almost given up on asking for a scratch test or the second type of allergy markers test.  I forgot what it is called but insurance companies don't like to pay out for that test since "so few" people need it.  I also did not test positive for any genetic marker in my blood.  Like the allergy markers, there might be more than one way to test blood for celiac but I'm not sure if it has been looked in to.  The Drs diagnosed me with severe intolerance, one wrote the word Celiac down, and another claimed IBS until I stopped seeing him.  The GMO Wheat strand theory has not been tested.  I might be one of the patients that can eat the Natural wheat grain that existed before the government "enhanced it" to make it easier to grow in large crops.  I have similar problems with Corn that is not what I consider to be natural.  

 

The only thing we know for sure is that I get very bad and sometimes instant reactions by skin and through my digestive tract with wheat containing foods.

 

The hugs and handshakes are only dangerous when I'm around small children (cookie hands..) and people that have recently eaten/cooked and smudged food residue on their shirts.  Most of my friends warn me so we do the fist bump thing when they are not safe.  My new therapist did the fist bump with me when we met.  He also offered me hand sanitizer after the session.  I'm putting him on the list of Good Drs.

 

The bakery is likely in my imagination, but when the flour is flying in the air the danger can be very real.  I need to try Farmer's Markets but I admit being anxious to new things.  A former therapist suggested I find a nice old family with a big yard and ask them if I can garden some veggies in the proper seasons if I share the bounty.  A lot of people in my area have land so that can work out, if I make the right connection.  My mom had a farm life as a kid so when she had her own land she started growing food and spices.  My dad's father also kept a similar garden on his land.  I'll be 30 this year so maybe it can mark a new chapter of my life.

 

In all my hindsight it seems my issues are mostly with GMO foods.  When I avoid them my body does better and I put weight on.  Celaic.com is the only place that seems to be able to help me with my diet change since it began with Wheat nearly killing me.  Most of my food has been "Organic" since the switch to a gluten free life and I am only now noticing the other safe grains are also GMO if I read the labels closely.  I am going to all foods Non-GMO, cage free, and as free from a factory as it can all get.  Sometimes it feels extreme but when I get sick for no reason after eating a simple gmo snack chip I feel like it isn't just me in my head taking things too seriously.

 

Shampoo and other products are not very good to me.  I've been using Dr Bronner's All in 1 soaps, Kiss My Face, and Tom's of Maine to get by.  If I color my hair I have to find "regular" shampoo or the other soaps kill the dye.  When the dye fades I have to go back to Kiss my face soap for shampoo or my hair goes crazy.  It it like the chemicals feed off one another when the dye is there.  

 

3+ years Gluten free and still just as confused as I was the day I switched.


At age 16 I said

"I love mac n' cheese sooo much I'm gonna die eating it!"

It's a good thing I have a sense of humor...

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