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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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mcbphd1

Still sick and getting glutened somehow when traveling

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I need some help!  I was diagnosed with celiac via very high blood antibody levels about 5 years ago.  Over the years, I have discovered that I am supersensitive and react to very small amounts of gluten.  I have adapted my lifestyle in several ways to cope with this  - I follow a primarily grain free, low carb diet, I cook everything that I eat and eat very little processed food (maybe sometimes a pre made salad dressing that is labeled gluten free), I do not eat out or even go to restaurants, and I either pack food or go to the grocery store to purchase food when I travel.  I also buy and use only gluten free vitamins, beauty products, cleaning products, and pet food. I have tested via elimination for other food sensitivities, and only avocados and bananas are an issue (fodmaps), as is brown rice (probably due to too much arsenic).  Despite all of the caution that I take, I continue to get glutened, particularly when I travel.  After 3-4 years of this happening, I have come up with a couple of thoughts, and am wondering if any of you who are super sensitive have found that you had similar issues:

- When I travel, I almost always have coffee from gas station coffee pots while on the road.  Some of these places also have burritos, hot dogs, etc.  Is it possible that the people who make the gluten-y food also make the coffee (or tea) and that the coffee gets contaminated in the process?  Maybe they have flour on their aprons or don't change gloves?

- Also when I travel, it is usually to a high school athletic event, usually tennis.  The stands are filled with kids eating sandwiches, cookies, and other crumbly, gluten filled foods.  They sit near me, sometimes hug me or talk to me, and use the same rest rooms, etc.  Could I be getting gluten exposure through other people eating it in close proximity?

- Finally, lately I have accompanied my son on college recruiting visits.  We usually have lunch in the athletic dining area.  I don't eat the food, but I do bring my own and eat on their plates and silverware.

I mention these three things because they typically only occur when I am traveling and they don't occur when I am home, and because 9 times out of 10 when I have a problem with gluten, it is when I travel.  I can see where one of the flukey exposures might happen once, but it seems odd that this would happen every time travel.  

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Hummm...dumb question, but are you careful to avoid putting your hands in mouth or washing them before you eat? 

I consider myself to be very sensitive.  I am on a low carb diet (diabetes), am mostly grain free and avoid processed foods and eating out.    My house is completely gluten free. 

Like you, I travel and follow the same precautions.  I do not drink coffee from the gas station.  That is because I usually bring  a thermos or travel in my RV and make it fresh!  I am a Band Mom.  Yep, in the stands at every single football game and tournament surrounded by nacho-eating, pizza-eating and Burger-eating folks.  I have yet to be glutened by them.  I do take the time to go and wash my hands prior to my eating even when I am using my own utensils.  I had to borrow some  recently from the taco stand and I washed them in the ladies room.  

I am on a University campus often.  I no longer eat there as their practices vary and most of the time staff consists of a lot of students.  I can imagine that do not wash dishes well every single time, nor report dishwasher malfunctions. I can imagine this because I worked in food service while I was in college.   Students wander all over the dining hall touching everything (did their parents not teach them anything?). For most, they probably are building up a healthy gut Bionome.   😝Believe me, I have complained, but the food service is outsourced and under a contract.  

You sound like you are doing everything right.  When was the last time you had your antibodies checked?  Ruled out a new AI issue, etc.?  It is not always gluten.  I hope you can figure it out.  

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cycling lady has some great thoughts there! The things that stood out to me in your original post, were the gas station coffee pots & eating off the plates & using the silverware in the college dining area. This are things I would never consider doing & I am super sensitive. I don't trust anyone but myself! Well, I would trust cycling lady if I were at her house. :D

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It’s amazing the bad habits we realize we have after needing to avoid gluten in highly contaminated places.  I have been glutened at Panera even when I didn’t eat anything. But I have a bad habit of putting my hands by my mouth/lips when I’m thinking.  I never noticed it before now.  I meet at Panera with a book group. When I bring my own wipes and clean the table and chair thoroughly, I am fine. When I forgot my wipes last meeting, I got glutened.  I have bought coffee at gas stations with no problems. But those times there was no fresh food offered at the gas station and I chose a cup and lid buried in the stack so as to avoid others handling it. If the gas station has fresh gluten food (particularly by the coffee), I avoid it. I have started to bring boxed cold brewed coffee to avoid that scenario. 

Like cycling lady said, wash your hands before ever putting anything in your mouth. Even if it’s something you brought to eat yourself. 

Edited to add:  I’m also NCGS, as is my daughter:  both of us gluten free first, gluten challenge, negative results. 

Edited by Feeneyja
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11 hours ago, mcbphd1 said:

- When I travel, I almost always have coffee from gas station coffee pots while on the road.  Some of these places also have burritos, hot dogs, etc.  Is it possible that the people who make the gluten-y food also make the coffee (or tea) and that the coffee gets contaminated in the process?  Maybe they have flour on their aprons or don't change gloves?

I occasionally go out to a pub. I no longer drink so I would have a black coffee. Occasionally I would get a dreadful stomach churning effect from it. 

I switched to soft drinks and then, again, got the stomach churning.

Finally I got a straw and drank straight from the bottle. Stomach was fine...

My conclusion is that I've become more sensitive over time and now the tiny amount of cross contamination from indifferently washed cups and glasses is sufficent to set my immune system on edge. Maybe its milk particles in the coffee and gluten in the glasses? I never imagined this would be the case but there you have it :(

 

*Note I'm NCGS, but appear to suffer much the same...

 

 

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I worked in a bar when I was in college.  Glasses back then, never went through a dishwasher.  They were washed and then dunked into a sanitizer solution.  Weekend nights were so busy that the bartender was forced to speed things up.  You would find lipstick markings on glasses.  As a barmaid, I checked.  I wanted to be tipped well.  Not sure how much gluten might be  left on glasses that are hand washed.  No one has had the time or inclination to study it, I guess.  

Today, many bars in the US use dishwashers, but not all, even in nice hotels.  When they are busy, it is all about making the alcohol sale.  They  revert to the old sink cleaning method.   Fine for germs, but not sure about removing gluten.  

I ask for a to-go cup usually reserved for soda.  I explain about celiac disease and the wait staff or bartender is happy to accommodate me.  Usually,  I talk to the bartender.  

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38 minutes ago, Feeneyja said:

It’s amazing the bad habits we realize we have after needing to avoid gluten in highly contaminated places.  I have been glutened at Panera even when I didn’t eat anything. But I have a bad habit of putting my hands by my mouth/lips when I’m thinking.  I never noticed it before now.  I meet at Panera with a book group. When I bring my own wipes and clean the table and chair thoroughly, I am fine. When I forgot my wipes last meeting, I got glutened.  I have bought coffee at gas stations with no problems. But those times there was no fresh food offered at the gas station and I chose a cup and lid buried in the stack so as to avoid others handling it. If the gas station has fresh gluten food (particularly by the coffee), I avoid it. I have started to bring boxed cold brewed coffee to avoid that scenario. 

Like cycling lady said, wash your hands before ever putting anything in your mouth. Even if it’s something you brought to eat yourself. 

Edited to add:  I’m also NCGS, as is my daughter:  both of us gluten free first, gluten challenge, negative results. 

Ha, ha!  I have dug through a stack of cups and lids myself.  😉

Edited by cyclinglady

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Thank you all!  I confess that I also dig down in the stack of coffee cups and lids.  I'm thinking that even though I am an obsessive hand washer, when I leave the gas station with coffee, I probably touch several surfaces.  Also, I suspect that the folks who make the coffee get in a hurry and might use the same gloves as when they make burritos.  I can't believe it's come to this. Cyclinglady your post made me smile - I am a faculty member at a large university and I definitely notice I seem to have more issues when classes are in session.  Don't know if it's stress or small amounts of gluten from the kids in classes, on doorknobs, stair rails, etc.  Like the healthy biome comment - like when my kids used to go to daycare, building a strong immune system.  I think I was tested for additional AI's a little over a year ago.  We know I have thyroid issues and metabolic syndrome, hence another reason for the low carb and grain free diet.  I've lost 20 pounds and otherwise feel pretty good except for some fatigue and what feels like repeated gluten exposure.  I'll keep trying to figure it out, thermos is a good idea.  Once the recruiting visits are over, I can completely avoid campus dining halls.  I just added L-glutamine which has helped somewhat in the past.

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Oh, and it's good to know that others react to glasses in restaurants, etc., and that I am not completely crazy.

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On 11/15/2017 at 5:54 PM, mcbphd1 said:

Oh, and it's good to know that others react to glasses in restaurants, etc., and that I am not completely crazy.

Long before celiac diagnosis, my husband & I both were freaky about eating out. I can't even tell you how many times we got glasses or coffee cups that had lipstick on them, silverware that had food particles dried & stuck on, same thing with plates. The dishwashers don't do all that good a job of cleaning from what I've seen. For us, it took a lot of the joy & relaxation out of going out for lunch or dinner since after having found these things numerous times, we then learned to check everything every. single. time. 

Now? With as sensitive as I am, there's no way I would eat out. 

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I worked briefly as a server, and I would vouch for the fact that glasses, plates and utensils are not washed carefully in most places, even nice ones, even if they have a dishwasher. The place I worked at had a sort-of dishwasher for the glassware - it was basically a 2 minute bleach/steam sprinkler cycle. Lipstick on wine glasses would still be on there at the end, to give you an idea of how well it cleaned particulate matter. Anyone thinking that thing was getting particulate matter off at a ppm level would be dreaming.

In addition to this, servers would wipe off glassware that came out of the "dishwasher" with linen/rags that get tossed around/dumped on counters by the bar (covered in beer, used to clean up spills). Servers also don't wash their hands very often and handle food a lot - bread basket, cleaning off plates etc.

Many coffee places also often dump their coffeemaker baskets in the sinks, which are often filled with crumbs from baked goods and sandwich prep. I'll eat my hat if those things get any more than a rinse before they go back in rotation for a new batch. Similarly, coffee cups are sometimes stored below food prep areas or shelving.

All of this might sound paranoid, but if you're super sensitive these things could make you sick. They did for me. I wasn't thinking about these things until I kept getting sick, even when I was ordering only wine or coffee (even in my own thermos!). I have since opted to only get bottled/canned beverages from bars/restaurants unless it's slow enough that I can ask for a glass to be rewashed carefully for me. When traveling, I bring my own ground coffee and use a cone/paper filter to make drip coffee.

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We have also noticed wait staff carrying glasses or coffee cups 3 or 4 at the time by putting a finger down inside each one & then grasping them altogether. This just after picking up dirty dishes from other tables. Certainly weren't back in the kitchen long enough to wash their hands before grabbing the glasses or cups. We used to, before celiac, try to shrug it off as a few germs won't hurt you & you need to be exposed to things once in a while in order to strengthen your immune system. It always still grossed us out though! Now is a whole other matter. Gluten fingers inside glasses & cups. No, just no!

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