Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living...
    2. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sl...
    3. Scott Adams
      - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

      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. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly c...
    4. Scott Adams
      - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...
    5. Scott Adams
      - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,369
    • Most Online (within 30 mins)
      7,748
    Nick H.
    Newest Member
    Nick H.
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Reintroduction of Gluten

      By Scott Adams · Posted

      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. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      High Cost of Gluten-Free Foods

      By Scott Adams · Posted

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...