Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New Celiacer


plittrell

Recommended Posts

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.  

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    2. - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

    3. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    4. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

    5. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,473
    • Most Online (within 30 mins)
      7,748

    Kelly Hannon
    Newest Member
    Kelly Hannon
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
    • Roses8721
      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.