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How Can You Be Sure What Is Ccing You?


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foodiegurl Collaborator

I have read many posts where people are positive they are being CC with something that touched something else...a utensil, something that may not have been cleaned, a food item that was supposed to be gluten-free, etc...

What I am wondering is how are you able to pin it down??

I was just thinking as I go about my day, if I did feel glutened, how would I ever nail it down?

Just curious.


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SGWhiskers Collaborator
I have read many posts where people are positive they are being CC with something that touched something else...a utensil, something that may not have been cleaned, a food item that was supposed to be gluten-free, etc...

What I am wondering is how are you able to pin it down??

I was just thinking as I go about my day, if I did feel glutened, how would I ever nail it down?

Just curious.

I'm one of the people always freaking out about CC. I have a running list of suspicions, and when the same thing keeps popping up, I do a challenge. For example, I seem to be the rare celiac who can't tolerate the smell of gluten. I repeatedly got sick on Sundays. I figured out that I started feeling bad at the grocery store and tested out my theory 2 additional weeks. Then I asked hubby to do the grocery shopping for a few weeks. (He's great!) I'm not getting sick on the weekend anymore. I'm supposed to give the grocery store a test this weekend if I get the nerve.

Most of the time, I just have to deal with the fact that I'll never know what got me. Keeping that mental list has helped narrow down the following culprits though.

bbq grill, finger food, birdseed, hubby gluten, lotion, nail biting, inhaled gluten.

These are the items currently running around my suspicious list:

sharing gluten free serving platters with non celiacs, that darn bowl hubby might have contaminated, the soap at work, the corn chips and cereal I love.

NorthernElf Enthusiast

Most of the time I can figure it out - it takes a bit of sleuthing. I don't know what I would do without the internet - it's so easy to look up ingredients and visit forums such as this to find answers or ask questions. I can detail my home for the best gluten avoiding strategies I can, but it's mostly away from my home that I get "got". My best strategy is to just eat my own food. Basically anything with "natural flavors" is suspect. Food from other people can be suspect. Someone at work made gluten free cupcakes and I didn't even have one...at home I have my own muffin tins, cutting boards, etc.

There have been some glutenings I haven't figured out though.

Zachnap Newbie

It is tough and I believe that most of my problems are due to this as my reactions now are very minor but present - meaning I am coming in contact with gluten but very, very small amounts.

Dishes and silverware from the dishwasher. What do you think happens to the gluten that is on the stuff before it goes in the dishwasher? Answer: it goes into solution with the dish water and then dries onto the dishes and silverware. Make sure you rinse everything off with soap and water before using it even though it has already been washed. Forks: forks collect dried food particles between the prongs and I am always having to scrape it off even though it is difficult to notice it is there.

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      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
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      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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