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 Celiac.com!
    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!

Link to comment
Share on other sites

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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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!

Link to comment
Share on other sites
IrishHeart Veteran

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

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
IrishHeart Veteran

Against The Grain makes a FABULOUS frozen pizza.

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

Link to comment
Share on other sites

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!

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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!

Link to comment
Share on other sites

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. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    2. - Zackery Brian replied to rsvtwin6's topic in Food Intolerance & Leaky Gut
      6

      Gluten and 30 other Items causing me Severe Muscle Inflamation Pain

    3. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    4. - Moodiefoodie replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet

    5. - knitty kitty replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,062
    • Most Online (within 30 mins)
      7,748

    Sherry Glaser
    Newest Member
    Sherry Glaser
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
×
×
  • Create New...