How to Stay Gluten-Free in a Cross-Contaminated World

Very well written. It is always a struggle finding the balance between not being cautious enough and risking exposure to gluten or going overboard and making live unnecessarily hard. 

When I was first diagnosed over 15 years ago, my hubby kept a chart without telling me of what he had for breakfast before giving me a goodbye kiss when I went to work.  To keep it simple, he only ate raisin bran cereal or hominy grits as a hot cereal. The kiss was a quick peck. Then he would check with me to see if I had tummy troubles at work that day.

At the end of a couple of weeks, he showed me the results.  There was a clear correlation between what he ate and my health.  I had been arguing that he didn't have to go gluten-free since I had Celiac, not him. I didn't think it could be that sensitive. That was when our house became gluten free.  He didn't want to accidentally make me sick just because he might not be paying attention on a particular day.

The recent study that was published here irritated me to no end because Celiac is already touchy to the point that you question yourself. Having a source like this site carrying a review of a study that makes us sound delusional isn't helpful. And how many gluten hits of less than 20 ppm does it take to have a cumulative effect on your immune system? 

Great article!  Newly-diagnosed Celiac sufferers, especially, can benefit from this kind of advice and support.  I remember how overwhelming and scary it all seemed when I was first diagnosed. Gradually, over time, with the help of others and doing my own reading, I became more empowered and less depressed about it all, learning that so much is under my control. It’s so important to understand Celiac and gain the confidence to stick up for oneself regarding diet restrictions, including sensitivity levels to cross-contamination.  It’s important to know oneself and not feel that one size fits all.  Very well-said in the article, “What I might see as acceptable risk, someone else may not, and that is fine.“ 

I believe that the study to which you refer DID find gluten on the pasta that was cooked in gluten water. Quoting said article about the study,  “The team found that Gluten was detected in all pasta samples cooked in water used for gluten-containing pasta, ranging from 33.9ppm to 115.7ppm. The rinsed gluten-free pasta samples tested at 5.1 ppm and 17.5 ppm detectable gluten. ”

Hi, I agree with the vigilance required for cross-contamination.  The other day I was visiting my brother's family.  I was helping out in their kitchen by plating gluten containing crackers.  I failed to remember to wash my hands.  Minute after plating the crackers I was eating my own gluten-free crackers.  I got a gluten attack 45 minutes later and the effects, as with all my gluten attacks, was extreme fatigue, brain fog for 24 hours and food issues for days perhaps even longer.   Cross contamination is a real concern for many celiacs. 

22 hours ago, Karen B. said:

When I was first diagnosed over 15 years ago, my hubby kept a chart without telling me of what he had for breakfast before giving me a goodbye kiss when I went to work.  To keep it simple, he only ate raisin bran cereal or hominy grits as a hot cereal. The kiss was a quick peck. Then he would check with me to see if I had tummy troubles at work that day.

At the end of a couple of weeks, he showed me the results.  There was a clear correlation between what he ate and my health.  I had been arguing that he didn't have to go gluten-free since I had Celiac, not him. I didn't think it could be that sensitive. That was when our house became gluten free.  He didn't want to accidentally make me sick just because he might not be paying attention on a particular day.

The recent study that was published here irritated me to no end because Celiac is already touchy to the point that you question yourself. Having a source like this site carrying a review of a study that makes us sound delusional isn't helpful. And how many gluten hits of less than 20 ppm does it take to have a cumulative effect on your immune system? 

That study bothered me too. It mentioned the less than 20ppm as safe for people with gluten sensitivity and noted that very few people with Celiac still react to less than 5ppm. But like you, unfortunately I'm sensitive enough that I react to my hubby's kisses if he's had something since last brushing his teeth. It came to the point we tend to avoid kissing most of the time, which is psychologically sad, I know. But when it comes to food at home, our entire kitchen is gluten free because we tried otherwise before and I just kept getting sick, and for me that meant life threatening hypoglycemic attacks and blistering rashes. The only place in our house you'll ever find gluten contamination is my hubby's desk where he sometimes eats fast food or a grocery store hot meal and I never touch anything on it just to be safe. Not that I have any business at his desk anyway, so easy avoidance. 

22 hours ago, Karen B. said:

When I was first diagnosed over 15 years ago, my hubby kept a chart without telling me of what he had for breakfast before giving me a goodbye kiss when I went to work.  To keep it simple, he only ate raisin bran cereal or hominy grits as a hot cereal. The kiss was a quick peck. Then he would check with me to see if I had tummy troubles at work that day.

At the end of a couple of weeks, he showed me the results.  There was a clear correlation between what he ate and my health.  I had been arguing that he didn't have to go gluten-free since I had Celiac, not him. I didn't think it could be that sensitive. That was when our house became gluten free.  He didn't want to accidentally make me sick just because he might not be paying attention on a particular day.

The recent study that was published here irritated me to no end because Celiac is already touchy to the point that you question yourself. Having a source like this site carrying a review of a study that makes us sound delusional isn't helpful. And how many gluten hits of less than 20 ppm does it take to have a cumulative effect on your immune system? 

Thank you for this comment! What a loving husband you have! I am recently in a serious relationship with a wonderful man who is going gluten-free so he can kiss me without fear of making me sick and I was feeling kind of bad about it and like maybe I was being too careful. But I appreciate that your husband did that experiment and found a correlation. It makes me feel more confident and less crazy in my decision to avoid small amounts of cross-contamination as much as possible. 

My daughter has Celiac.  We have a gluten-free toaster.  For the most part our home is gluten-free.

Disposable plates and knives are used for the occasional English Muffin Dad eats.

Our problem was finding a college with gluten-free options. Handing out a box of Cheerios and a lunch and dinner salad(shrink wrapped) should not count.  The school ranked as gluten-free in ratings do not have good controls or you have to eat in a different building, with Allergy students, away from your friends.

She ended up at Salve Regina in Newport, RI.

Separate food service, for allergy students, within the main cafeteria.  We happened to find this gem.  There is an Allergy chef.

Schools touting their ability to take care of allergy students have a different story when the Disability department gets involved.

One suggested they would allow her to cook her own food.

There is a need for a list of Colleges who have reasonable dietary programs for Allergy.

A list of schools, produced by Udi buyers is not an accurate measure of the programs ability to keep our kids safe.

That was a nice article on an important subject. For those celiacs who were diagnosed as adults due to symptoms like anemia and various vitamin deficiencies, there is no alarm bell that goes off when gluten is accidentally digested; no feedback on what caused the problem so it can be avoided later; no suggestion that the antibodies have been set off to wreak long term havoc.  The damage goes on but it takes place over time and it is unseen, excepting when it shows up in long term blood tests or other chronic symptoms.  Any possible source of cross contamination just has to be strictly avoided.

1/64th of a piece of bread is really large piece. I just drew out a bread sized rectangle and then gridded it to 64. That’s over a centimeter squared. Maybe this is why I so rarely feel glutened. I’m very careful about cross contamination, but if a few crumbs won’t trigger it, and it really takes that much, then all the verbiage about what celiacs need to do is off. 

16 hours ago, Guest Jim said:

Hi, I agree with the vigilance required for cross-contamination.  The other day I was visiting my brother's family.  I was helping out in their kitchen by plating gluten containing crackers.  I failed to remember to wash my hands.  Minute after plating the crackers I was eating my own gluten-free crackers.  I got a gluten attack 45 minutes later and the effects, as with all my gluten attacks, was extreme fatigue, brain fog for 24 hours and food issues for days perhaps even longer.   Cross contamination is a real concern for many celiacs. 

When I was first diagnosed and trying to do everything right I was so frustrated by a hot dog luncheon we had at work.  Hot dogs, we thought, would be easy to do normal for everyone else and gluten-free for me.  I brought my own dog and chili and even made my own bun.  Best guess is that I was defeated by doorknobs and microwave buttons.  Now, when I heat something in the group microwave, I use two paper plates (top and bottom) and I wash my hands after handling things.  I had to develop the habit of washing hands before eating and after helping coworkers at their keyboards because we all eat at our desks.

People don't realize what an act of faith it is for someone with Celiac to eat food someone else has prepared.

I think the college student wanting to wipe down their desk has a legitimate concern even if she won't be eating off the desk, and I don't like the dismissive way you address that.  If the surface of the desk is contaminated with gluten, than means her hands, books, notebooks, pens, phone, and whatever else touches the desk, or that she touches after touching the desk, could get contaminated.  I'm a little paranoid about my belongings becoming contaminated, since my house is gluten-free.  If my phone, purse, or whatever other belonging gets contaminated with gluten, that means I'm then going to be introducing it to my house when I go home.  I realize I can't control the entire world, and some cross-contamination is inevitable, but I think doing whatever you can to minimize it is important.  Cross-contamination isn't just about what you're going to immediately be consuming, since it can stay on things and become a problem later.  Unless you never touch anything else while you cook and eat even in your own home, yes, you do need to be concerned about what your commonly used non-food items come into contact with outside your house.