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plittrell

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plittrell Newbie

So I found out in Nov 2013 I have celiac. Though it is getting easier to handle the limitations, Some of my family and co-workers just don't get it. Cross contamination has been a huge issue for me. How do I deal without sounding like I need a pity party for one?


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notme Experienced

(psst!  it's only july ;)  )  (or do you know the winning lottery numbers - :D)  

 

cc IS a big deal!  my husband came home from hunting once and was excitedly telling the tale of his latest conquest while i was making a huge pot of spaghetti sauce.  he ripped off a piece of (gluteny bread and dipped it right into the WHOLE POT!!!  DAHHHHH!!  i was all like:  i hope you like sauce because you just made that ALL YOURS.

 

different things work to convince/educate different people.  for my kids/grandkids, i wrote a def metal song:  DON'T TOUCH MY CREAM CHEEEEEEZZZZZZZZZZZZZZZZ!!!  AURGHHHHHHHH!!  i sing it to them if they need a reminder.

 

my buddies drink, so they need the sharpie in big letters GLUTEN FREE to remind them not to touch my stuff.  my bestie eats everything without reading that, so i get 2 packages of (for example) ham and i hide one so she doesn't stick her hand right into the whole thing as she is likely to do :)  i love her, but if there's 2 bags of chips, she will contaminate the brand that i can eat.  

 

everybody, after 3 years!, is getting better at it.  if they have a doubt, they ask or eat something else.  i came home one night and freaked out because somebody *moved* my jelly and we had a house full of college kids........  so, freaking out is an option lolz one good hissy fit goes a long way  :)  i'm sure there are others on here who have good suggestions - welcome and good luck!

bartfull Rising Star

Pretend you are your child. You wouldn't let anyone contaminate your child's food, right? And you wouldn't tolerate anyone make fun of your child or not take his disease seriously, right? Well, you just put your foot down, tell people you have a real medical need and that it should not be an issue for them whatsoever. YOU are the one who has to deal with the diet, and YOU are the one who has to deal with the consequences of contamination. If they have a problem with you bringing your own food to an event, it is THEIR problem.

 

Perhaps if you point out to them that they would never say or do those things to someone with a peanut allergy? And when they say "A peanut allergy can kill a person but a little wheat won't kill you", you can say, "No, but it'll give me what feels like a severe case of food poisoning, so unless you're willing to eat a little bit of e coli infested meat so we can be sick together, let's just drop the subject and let me take care of my own health."

niese Explorer

Pretend you are your child. You wouldn't let anyone contaminate your child's food, right? And you wouldn't tolerate anyone make fun of your child or not take his disease seriously, right? Well, you just put your foot down, tell people you have a real medical need and that it should not be an issue for them whatsoever. YOU are the one who has to deal with the diet, and YOU are the one who has to deal with the consequences of contamination. If they have a problem with you bringing your own food to an event, it is THEIR problem.

 

Perhaps if you point out to them that they would never say or do those things to someone with a peanut allergy? And when they say "A peanut allergy can kill a person but a little wheat won't kill you", you can say, "No, but it'll give me what feels like a severe case of food poisoning, so unless you're willing to eat a little bit of e coli infested meat so we can be sick together, let's just drop the subject and let me take care of my own health."

I like how you put it about the e coli, I will be using that line.  

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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