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

Question About Cross-Contamination

jcfraun

Recommended Posts

jcfraun Newbie
jcfraun
Posted

I have a 10-year-old daughter that was diagnosed with celiac about a month ago. Previously, I was gluten-free, but with no diagnosis (was tested after being gluten-free for several months), hadn't been very cautious. Now, I'm treating myself as full-blown celiac - I have spent most of my life in some sort of discomfort until going gluten-free.

So, my question is about cross-contamination. I have read some people saying that they determine whether they can eat a certain food due to cross-contamination based on whether they feel symptoms. Is that a reasonable thing to do? Will you always be able to tell if you've been glutened? It seems a daunting task if you cannot even tell if it's happened (i.e., in a restaurant or at school, etc.) .

On a related note, we are Catholic and they ordered us gluten-free hosts (or actually low-gluten, I believe). How can I tell if these are ok for her to have?

Thanks!

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

You don't always feel the effects of gluten. A good chunk of Celiacs are asymptomatic.

Some people develop gluten signals as they go along, but it isn't always reliable since it can show up days later.

Celiac disease requires a gluten free diet. Not a low gluten diet. The tiniest bit - a fraction of a teaspoon of flour, can set off an autoimmune reaction.

Sorry, forgot the wafers. You need to read the ingredients list and you should be able to tell if they contain gluten. If you're unsure just post the ingredients here.

IrishHeart Veteran
IrishHeart
Posted

"Low gluten" or "Gluten light" is NOT GLUTEN FREE.

Anytime a celiac ingests gluten, it triggers the autoimmune response, whether you have explosive & immediate diarrhea or brain fog for three days or sores appear 2 days later or NOTHING. I personally, had a whole cascade of symptoms last for 3-4 weeks from

trace CC.

It's still causing damage whether people "feel it" or not.

The autoimmune inflammatory response from gluten exposure lasts months.

You may need to read about celiac disease in depth to understand the ramifications of cross contamination.

jcfraun Newbie
jcfraun
Posted
  • Author

I do understand that that is the case - that cross contamination is bad no matter what. I think that's why I was confused that people seem to use their physical status as a barometer of when they've been glutened. I think in our society it is very hard to know for sure that we're avoiding cc if we aren't having a reaction. So, in short, I've decided to not get pizza at Domino's (at first I was excited for my daughter's sake, I have to admit). We do our reasearch and eat only the gluten-free options at restaurants.

I will keep taking it day-by-day. I have to trust her to do the same when I'm not with her. One serious night of pain on her 6th gluten free day after intentional ingestion of pasta did more to convince her that I ever could have (she was largely gastro symptom-free before diagnosis). She misses certain things, but overall hasn't worried too much about it. I think it helps that I consider myself the same as her and am treating myself as if I have celiac. I have a first cousin and now a daughter with it and MANY other untested relatives that are highly suspect. I'd be willing to bet money that I'm correct in my self-assessment!

Thanks for the input!

IrishHeart Veteran
IrishHeart
Posted

No domino pizza. No way that is okay for a celiac.

pricklypear1971 Community Regular
pricklypear1971
Posted

I do understand that that is the case - that cross contamination is bad no matter what. I think that's why I was confused that people seem to use their physical status as a barometer of when they've been glutened. I think in our society it is very hard to know for sure that we're avoiding cc if we aren't having a reaction. So, in short, I've decided to not get pizza at Domino's (at first I was excited for my daughter's sake, I have to admit). We do our reasearch and eat only the gluten-free options at restaurants.

I will keep taking it day-by-day. I have to trust her to do the same when I'm not with her. One serious night of pain on her 6th gluten free day after intentional ingestion of pasta did more to convince her that I ever could have (she was largely gastro symptom-free before diagnosis). She misses certain things, but overall hasn't worried too much about it. I think it helps that I consider myself the same as her and am treating myself as if I have celiac. I have a first cousin and now a daughter with it and MANY other untested relatives that are highly suspect. I'd be willing to bet money that I'm correct in my self-assessment!

Thanks for the input!

If you have a BJ's restaurant nearby they do a great job at gluten-free and have pizza. Against The Grain makes a FABULOUS frozen pizza. The best I've had so far - even better than fresh. Find one of those for y'all.

IrishHeart Veteran
IrishHeart
Posted

Against The Grain makes a FABULOUS frozen pizza.

I agree!! if you cannot make your own, this one is awesome!!!

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

Celiac.com Sponsor (A8-M):


jcfraun Newbie
jcfraun
Posted
  • Author

Thanks for the pizza recommendation. I found a store that carries their products and will head there this weekend! As far as the restaurant goes - no dice...they don't even have one in our state. Thanks again!

Takala Enthusiast
Takala
Posted

First, you start with either selecting a natural food such as a plain meat, vegetable, fruit, or you read the label. And you are also going to be looking at the manufacturer (reliable reputation, or not so much).

Use the kung- fu of the Google to check foods out. Say gluten free and the name of the item, and see what comes up.

Many people become more sensitive to cross contamination after a few years. Then you can tell. Sometimes I eat something that is supposed to be gluten free, but I react, (my symptoms are neurological, so they are different than a lot of people's) and there is no mistaking my reactions. I test my balance, and if it is off, there it is. And my vision is affected. Maybe I get a nice neck spasm or two, a headache. Then I end up doing a bit of sleuthing to see what could be going on, and was this product manufacturer changing the way they made this, did they change ingredients or sources, <_< or started sharing run lines with wheat products, etc. I've had to give up a lot of (manufactured) foods that I was previously okay with, because manufacturers who are not specifically making items for the gluten free market are constantly looking for ways to cut corners and save money. (example, Hershey's chocolates moved their plant to Mexico, and at the same time they started getting cagey about disclosing all ingredients in their flavorings. A lot of people can eat plain Hersheys chocolate bars, some cannot. ) And sometimes even the "gluten free" labeled manufacturers in the USA change ingredients or sources, and if they are not testing to "x" parts per million for every batch, you can get a nasty surprise. Rare, but it happens, because we don't have the labeling standards yet, and it is all voluntary.

I don't stress if I am not always able to tell - I think I am, but this is not going to be the end of the universe. I have read that the neuro people are pretty sensitive, and I am getting there. If we don't make mistakes, we don't learn anything.

CeliacAndCfsCrusader Apprentice
CeliacAndCfsCrusader
Posted

Having Celiac Disease means ZERO gluten in your diet.

I agree with the folks that say "learn everything you can about Celiac" and then teach your kid. You're on the right track.

I am hypersensitive, but I don't pretend that I haven't been c/c'd without symptoms...I assume that I have. Despite the 'chance' that I won't FEEL it, I KNOW it is poisoning my insides.

I never cheat. It's poison. Don't take chances by increasing your chances of being c/c'd.

I used to make pizzas, there is NO way they can serve you a safe, gluten-free pizza.

PS: Against the Grain makes pizza AND plain crusts. They saved my life! Truly a great product. Their baguettes are to die for too!

Archived

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

Go to topic listing

  • 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. Rejoicephd
      - Rejoicephd commented on Scott Adams's article in Origins of Celiac Disease
      8

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

      I had actually forgot about the stretch of time that I was on antibiotics for acne. The more I think back on it, I was on antibiotics for a very good chunk of my childhood and into teenage years for a range of issues.
    2. knitty kitty
      - knitty kitty replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

      I've heard RO water is bad, too. Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too. I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.
    3. Yaya
      - Yaya replied to Yaya's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Great Value Veggies cannot be trusted.

      Scott. Thank you for your reply. I'm still having symptoms, but significantly better. I will go back to batch cooking and freezing vegetables. I have had success with Pict Sweet frozen, single item (not mixed) vegetables. My Kroger carries very little Pict Sweet variety. Regards, Yaya
    4. Known1
      - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

      I am hesitant to post this as I have seen many people here recommending RO water. With that said, I want to share my experience and how RO water now impacts me. Three or four years ago a local store installed a RO water refill station. I had been buying gallons of distilled and spring water prior to that. I switched over to using the RO water refill station...
    5. Known1
      - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      My neighbor's mom was diagnosed with celiac disease 16 years ago. She is a very kind person and has shared some info about local grocery stores and daily (soon to expire) meat deals. This evening she brought over 2 slices of Papa Murphy's gluten-free pizza. It looks to be topped with chicken and spinach. I asked, "aren't you concerned with cross contamination...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,445
    • Most Online (within 30 mins)
      7,748
    JamesM
    Newest Member
    JamesM
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Reverse Osmosis (RO) Water

      By knitty kitty · Posted

      I've heard RO water is bad, too.   Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too.  I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.  
    • Yaya
      Great Value Veggies cannot be trusted.

      By Yaya · Posted

      Scott.  Thank you for your reply. I'm still having symptoms, but significantly better.  I will go back to batch cooking and freezing vegetables.  I have had success with Pict Sweet frozen, single item (not mixed) vegetables.  My Kroger carries very little Pict Sweet variety. Regards, Yaya
    • Known1
      Reverse Osmosis (RO) Water

      By Known1 · Posted

      I am hesitant to post this as I have seen many people here recommending RO water.  With that said, I want to share my experience and how RO water now impacts me.  Three or four years ago a local store installed a RO water refill station.  I had been buying gallons of distilled and spring water prior to that.  I switched over to using the RO water refill station saving money by brining in my own clean empty gallon jugs.  Every 6-months I would replace the jugs by buying new gallons of distilled water.  This RO water is the only water I would drink while at home.  Two huge glasses every morning before work and two more after work.  I would also use the RO water to make coffee and hot coco. This past December, prior to my celiac diagnosis, my gut was making more noise than anything I had ever experienced.  Seriously, it was crazy, almost like fire works going off in my stomach.  I happened to pick up some distilled water for my 6-month jug rotation.  Literally, as soon as I started drinking the distilled water my stomach settled a great deal.  I could honestly feel the difference after the first glass of water.  I thought that maybe the RO water from the store's refill station was contaminated with some sort of cleaning agent.  I swore to myself I would never drink from that RO refill station again.  Instead I went back to buying distilled along with gallon jugs of spring water.  No issues with either of those as far as an upset stomach is concerned.  Cost, well that's a different story all together. After being diagnosed marsh 3c, I went shopping at Aldi's for the first time in my life.  I noticed they also sell water by the gallon.  Over the course of the last few weeks, I have purchased a total of 6-gallons of their water.  (Thankfully they were out on two of my visits.)  After having my stomach starting to make noises similar to mid-December again, it dawned on me, maybe its the Aldi water?  Initially I had contributed my bubble gut to some sort of gluten exposure or cross contamination.  Even though everything I have put into my stomach is naturally gluten-free or has been labeled gluten-free / certified gluten-free.  I had assumed that the Aldi water was spring water.  Come to find out, that was a bad assumption.  Looking close at the label it says purified by RO or distillation (or something like that). Again, I switched to different water.  Just like last December, the non-RO water instantly calmed my stomach and even felt better going down the hatch.  This was earlier today by the way.  Prior to creating this post, I did a few searches via Uncle Google.  I bumped into a thread on Reddit (where I am not a member) that has multiple people complaining of GI issues related to RO water.  So my initial thoughts on a cleaning agent in the refill station RO water were likely not correct.  Unfortunately, it seems the RO water itself causing me problems.  I am not sure if we are allowed to post links to other sites and hopefully I will not get into trouble for doing so.  I did try printing the Reddit thread to a PDF file.  Unfortunately, the file is 2MB in size, which is well over the 500KB file attachment limit here on this amazing forum.  Again, hopefully this is ok.  🤞  Here is the Reddit thread. This may not be a popular opinion here, but personally, I will not willingly drink another glass of RO water for the remainder of my life.  Who knows, maybe drinking RO water for the past several years is part of what activated my celiac?  No proof, but just a thought.  Come to find out RO water is well known to leech minerals from your body.  With people like us often lacking minerals to begin with, RO water does not seem like a wise choice.  As the Reddit thread mentions, there are RO water filtration systems that will inject minerals back into the water.  However, those systems are likely not being used at the grocery store refill stations nor by the bottling companies producing RO water for sale at your local store. Please do not shoot the messenger as I am just sharing my personal experience and letting others know that most RO water will leech minerals from your body. God bless and stay well, Known1
    • Known1
      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      By Known1 · Posted

      My neighbor's mom was diagnosed with celiac disease 16 years ago.  She is a very kind person and has shared some info about local grocery stores and daily (soon to expire) meat deals.  This evening she brought over 2 slices of Papa Murphy's gluten-free pizza.  It looks to be topped with chicken and spinach.  I asked, "aren't you concerned with cross contamination"?  She said no and apparently eats it on a somewhat regular basis. I found an old article here along with another thread pertaining to Papa Murphy's gluten-free pizza.  The article is quite old, so I do not think it holds much weight nowadays.  The thread I found was also a bit dated, but certainly more recent and relevant.  The information in the thread I found was a bit inconclusive.  Some said they trust Papa Murphy's gluten-free pizza and others were a big no way.  One person even took time to train their local franchise on how to ensure the pizza remains gluten-free without cross contamination. Anyway, being recently diagnosed as marsh 3c, I am currently working on week 3 or 4 in my new gluten-free journey.  I do not want to be rude and toss the pizza out, but I also do not want to have a reaction.  Since she has celiac and obviously ate much or at least some of the pizza, I am leaning towards eating the two slices for lunch tomorrow.  As this thread's title states, what would you do?  Would you eat it or toss it out?  I suppose I could also just give it back to my neighbor to polish off. I look forward to reading your thoughts. Thanks, Known1
    • Scott Adams
      Great Value Veggies cannot be trusted.

      By Scott Adams · Posted

      That must have been really upsetting to discover, especially after relying on a product you believed was safe. Labeling can change at any time due to supplier shifts or shared equipment, so it’s always important to double-check packaging—even on products we’ve trusted for years. A “may contain wheat” statement usually indicates potential cross-contact risk rather than an added ingredient, but for people with celiac disease that risk can still be significant. If you’ve been having symptoms, it may take days to weeks to fully settle, depending on the level and duration of exposure. In the meantime, switching to fresh produce or brands that clearly state gluten-free status is a reasonable step. It may also help to contact the manufacturer directly to ask when the labeling changed and what their current cross-contact controls are.
×
×
  • 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.