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

Are You Amazing At Explaining Cross-Contamination? Help Me Be Lovely And Thoughtful?


Shell156

Recommended Posts

Shell156 Apprentice

Hi there everyone, 

 

I don't think I've posted on this section of the board before. My boyfriend invited me to go away on a Christmas Vacation with his family! I'm so, so looking forward to it but I'm a little nervous because I've only met them a few times (they live 4 hours away). They seem really great though, so it should be fun!

 

Here is my problem: I really, really don't want to get sick because my problems are pain and neurological… I get depressed, snappy, teary and kind of feel crazy. Once I heal this all goes away 100%. Not an awesome (almost first) impression. I also desperately don't want to inconvenience his family in any way or make them feel uncomfortable at all.

 

I don't see though, how I can have both. I wish it weren't so but I'm extraordinarily sensitive. I would probably have to have my own food prep area and I wouldn't be able to sit at the table with them if the meal is very gluten-heavy. I got very, very sick the first time I visited them, likely because I wasn't vocal enough about how sensitive I really am. I'm scared they will feel weird if I'm not eating with them but I want them to be able to eat whatever they want!

 

I tried explaining to his mom on my second visit that I wanted to find a way to not inconvience the family or make them feel uncomfortable. I was trying to say I could eat separately and maybe a few days my boyfriend and I could cook dinner for everyone and we could all eat together!

 

I think (hope) she misinterpreted me somewhat because she seemed tense and upset and (I forget the exact words) thought I was trying to make the whole family go gluten free :-(

 

I tried to explain I wasn't saying that at all…  I really want everyone to have whatever food they want and enjoy. I tried to explain that, but I'm not sure she believed me. Hopefully that doesn't cause problems...

 

Any advice? What can/should I say that will be really clear and not make anyone feel bad?


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



Celiac.com Sponsor (A8-M):



BlessedMommy Rising Star

Have you pinned down what is causing the sickness from eating with people? Did they touch your plate or utensils with their gluteny hands? Are they touching your plate while you're eating it? Are they touching the bread sticks and using the same hand to pick up a piece of fruit and pass it to you?

 

I went on a mini-vacation and ate at a table full of gluten eaters. I took precautions like having them set the table for everybody else and grabbing my plate last. If they did set the table already with paper plates, I just grabbed a second one and set it on top of the one they set down, just in case they gluten contaminated it.

 

If they were providing utensils, I rinsed my fork off quickly before eating, just in case. I also rinsed my hands before sitting down and then refrained from touching the gluteny stuff while eating my food. I let my SIL know ahead of time that I felt most comfortable bringing all of my own food and I made some stuff ahead and also brought frozen entrees to reheat. I refrained from eating stuff that my host provided that was naturally gluten free unless I prepared or chopped it myself (when SIL was going to serve salad I volunteered for food prep and chopped it on my dedicated cutting board and I also took charge of the slicing of my watermelon that I brought) or unless it was something that was unlikely to be CC'ed. (like almond milk for my cereal)

 

I brought my own colander (I have a collapsible one Open Original Shared Link) and a number of my own kitchen implements such as a cast iron pan, a dutch oven, my own dedicated utensils, my own dedicated sponge and dish towel, my toaster, etc.

 

I had a successful and healthy weekend!

 

ETA: I'm not super sensitive, so though I wanted to share what I did on my vacation to stay safe, I realize that it may not work for someone else. 

T.H. Community Regular

We've run into this with my daughter at her grandmother's house. She has gotten really sick there before, eating her own food entirely, and then even when she had her own food, her own utensils, AND her own prep area for her food. Very frustrating, because she gets SO sick. 

 

In my experience, the biggest issue to find out WHY it's a big issue for his family. If it is. So to start off with? Ask him. Or ask him to ask his mom her opinion and find out.

 

I've seen some who freak out over this because they feel like YOUR doing something is somehow a personal attack on what THEY are doing. Being sensitive, I'm sure you've run into this even with other celiacs, people who somehow feel that because you choose to avoid gluten to a certain level, you are somehow making a comment about what they should do, or how gluten free THEY should be, rather than just sharing what YOU do.

 

But that's not the only reason. My mother, for example, used to get really upset because she didn't understand that heat doesn't get rid of the gluten, and so she felt my worries about contamination were a comment on the cleanliness of her house.

 

Others are frustrated because they don't think the contamination is really something that's even possible, or that you are acting more sensitive that you need to, or that ALL people who eat gluten free are doing it because of a fad and then you'd REALLY be over the top in avoiding it. Or it can be a politeness thing - where if someone offers you food, you should eat it (unless it will kill you) - usually because they don't understand what the issue is. Or that it's rude to eat in front of someone else who isn't eating. Or they 'know' a celiac that that celiac doesn't need to worry about any of this stuff. All sorts of potential reasons.

 

Once you know the reason, I think the best way to approach this is to address their main concern first. If it's disbelief, find something simple that can educate (although this may never work, as some people will never believe it's a real thing). If it's worries of being rude to a guest, you can quiet any fears that you are complaining about their hospitality and let them know that you appreciate their company so much that you WANT to do it this way to ensure you get to enjoy as much of it as possible. If it's cleanliness, you can address that. 

 

Mostly, just approaching it from that angle I think helps, you know?

 

As for talking about contamination - I thought this one lesson germs, from a kindergarten teacher, was great. Although not one I'd do in someone else's kitchen. Cover a piece of (gluten-free) bread in chocolate pudding. Hold it in your hand. Put it on the counter, open the fridge door and get out the mustard and mayo. Get a knife. Spread the mustard and mayo and double dip. Put the jars all away. Then pull back the chair from the table and sit down, put the bread and the knife on the plate, and rest your hands on the table. - maybe you could film it.

 

This is how contamination from gluten spreads. It's not to the extent that a bunch of pudding spreads, of course. And it's obviously NOT going to be as dramatic as a lot of pudding, but it gets the IDEA across...that what you touch is at least a little contaminated, unless it's washed off or rubbed off. It will not dissipate into the air if it sits on your hands or the knife for a while. Or from the fridge door, or the back of the chair, or wherever.  

 

It just may make it clearer why it can be tricky for someone very sensitive to make food in a kitchen where there is a lot of gluten, because any contamination is invisible. So the fridge door may be fine, or it may not. The counter may be fine, or it may not. The table top may be fine, or it may not. And if you don't know, then it makes it harder for you to ensure you stay completely healthy to be able to enjoy the trip with them.

 

Don't know if that'll help, but it's helped a couple times explaining to, like, my daughter's grandmother about why she needed a safe space to make her own food.

beth01 Enthusiast

Maybe go shopping with your boyfriend's mother.  Maybe if she saw the things that she normally buys that are gluten free, she wouldn't think you are trying to get her whole family on a "fad" diet.

 

I have had a problem with this with my parents when my children go and stay there.  My daughter has only gotten sick once, and my father was adamant that he did not cook anything to make her sick. I used the peanut allergy " you wouldn't give someone with a peanut allergy a small amount of peanuts, we might not die from a small amount of gluten but it still causes damage and makes us really ill".  I also asked him if he would hit her.  He was floored.  I know my dad would never hit my child, would never intentionally hurt her, why hurt her by feeding her gluten?  He finally got it.  Of course he said he wouldn't cook anymore and my mom could do it, but he does get the cc now.

 

Situations like this really suck for us because no one but us gets it.  I hope you have some luck.

Shell156 Apprentice

Wow, these are awesome. Super grateful to all of you that took the time to answer so quick! I already feel better.

 

BlessedMommy- thank you for the thoughts and ideas, I feel more confident knowing you were healthy all weekend. Also, cutest name ever!

 

T.H. - Thank you too so much for your super lovely, thoughtful and thorough response. I ADORE the pudding idea. I want to do that! I think asking my boyfriend first about things is the best idea and I'll probably just explain the pudding thing to him. He'll get it and decide what to share. I trust him. I may steal the pudding idea for my classroom… there are so many allergies and it's such a great, visual way to explain! Thank you for being so understanding :-)

 

Beth01- I can see how that would work! I'm not sure how to get that idea across though to people I don't know as well… do you have any ideas? It's pretty clear though… I mean I have struggled with explaining to people in the past and that does make it pretty clear! Thank you!

 

So weird how hard it is to explain something that really hurts us, eh?

 

One thing I forgot to mention… there will be a very adorable toddler with us. About 2 years ago, a toddler I adored stuck her hand in my mouth after eating cookies. I was caught completely off guard but I suffered for weeks (maybe even months… it got better slowly) I don't want to run away from this little guy, but not totally sure how to explain I shouldn't be cuddly with him if he just ate cookies/muffins/etc?

BlessedMommy Rising Star

The kid one is really hard. I have a 2 year old and she likes to play "dentist" and put her hands all over my face so I totally get this one. Can you take the toddler to wash their hands and face after eating something gluteny? It's probably good hygiene anyway to wash up after eating.

dilettantesteph Collaborator

It is a difficult situation and people can be strange and take your medically necessary precautions personally.  Maybe it would help if you said that it was doctor's orders?  If you explained how awfully sick you get?  I find it helps to state that the risk isn't that great, but I don't want to take a chance because I get so sick.  Then it sounds less like an accusation.  I hope that you can find a way to make it work and that you don't get sick.  I hope that you come back and share how it went.


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



Celiac.com Sponsor (A8-M):



  • 3 weeks later...
Shell156 Apprentice

Aww… I haven't gone yet but I think I was worried about nothing. I saw everyone this weekend and they offered to stop by Costco (because we fly in there late) to get me anything I needed to stay healthy. I super enjoyed spending time with them and now I'm looking forward to the trip even more!

 

I thought the offer was so thoughtful and caring. I'm so lucky! And grateful :-)

 

I think one of the reasons I worry is I've just had not so great experiences in the past so I get scared. Now though, it might be just me worrying. I'm super looking forward to spending time with all of them and they just seem really understanding :-) Yay!

 

Thank you again for all your thoughts and help everyone!

MJ-S Contributor

Do they bake a lot? This would be especially more likely at Christmas. If flour is being used, it's in the air, and that could be one way you're getting sick from just being around the kitchen.

 

There's no easy way about this. You should really find out ahead of time if they are going to be baking heavily for the holiday meals, because if so you should stay away from the kitchen. Something to consider.

  • 2 months later...
celiacmom55 Newbie

My son is a super sensitive celiac, cross contamination gets him every time.  When he comes home for a visit, my husband and I make our home 100% gluten free for a good week before the visit.  We have separate utensils and cookware  that are only used for gluten free cooking too.  (husband and I are not celiac, 2 of my 3 kids are though)   I  know some people think we are over the top cautious but they don't understand all the finer points of extreme sensitivity. And frankly, I don't care if they do think I am a gluten fanatic, my kid's health is more important to me than what others may think.  I do the holiday dinners, so that I can control the food.   My kids do appreciate it though, it makes me so happy to know they are going home feeling well, instead of sick.  One tiny bit of gluten makes my son sick for 2 weeks. Every day of a celiac's life involves planning around eating, how to avoid getting glutened, and I want my kids to not have that worry when they visit home.   In the past, although I tried to make gluten free meals, I did screw up with the cross contamination and he got sick.  I felt so bad for that, but I have spent a good bit of time educating myself and I finally have it nailed!

1desperateladysaved Proficient

I am super-sensitive(with allergies)  and the doctor did tell me that I eat ONLY at home.  I have extended that to a make-shift kitchen (say at a hotel) (away from normal food prep area) and my car.  I have an oven for the car and use my own electric skillet in locations with electric sockets.  I tell any hostesses in advance of my predicament, making sure that she knows it isn't my choice, and then I do not eat at common tables. I don't take anyone by surprise.  I am always careful to recognize that I truly want to be one of the company, but can not partake of the food.  In the months  Before making my eat at home plan, I got sick eating at mother-in-law's eating my own food warmed in my covered dish.  Also, I got ill just being in a restaurant.  I now know I have an allergy as well as celiac, so that quite possibly finally explains it.

sunny2012 Rookie

Most people will talk without totally swallowing all that is in their mouths. I have found bit of bread in my water glass. Now I eat away from everyone else who can't chew and swallow without talking. 

  • 4 weeks later...
Shell156 Apprentice

Hi everyone!

 

Well… it was awesome! Everyone was so kind and thoughtful and it went well. I think I got mildly glutened once, but I think it's because we had to buy some unfamiliar brands (all labeled gluten free… not all certified). One mild glutening in 2 weeks is pretty par for the course for me, as I am extremely sensitive and may have an allergy rather than celiac?

 

However, I had a terrible allergic reaction to something that is not gluten! My gluten reactions are very recognizable to me and this was different. I had horrific hives and eczema all over for more than 2 weeks. It was so awful. I still don't know for sure what got me.

 

Just wanted to say thank you everyone for all your help and thoughts!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,554
    • Most Online (within 30 mins)
      7,748

    Becky 0163
    Newest Member
    Becky 0163
    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
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.