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

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

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

"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

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

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

pricklypear1971 Community Regular

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

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

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

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

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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    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

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  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.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.