• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • Scott Adams

      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 is Celiac Disease and the Gluten-Free Diet? 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
3 3
mcbphd1

Still sick and getting glutened somehow when traveling

Rate this topic

Recommended Posts

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.  

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.  

  • Upvote 1

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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
  • Upvote 1

Share this post


Link to post
Share on other sites
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...

 

 

Share this post


Link to post
Share on other sites
Ads by Google:


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.  

  • Upvote 2

Share this post


Link to post
Share on other sites
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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites
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. 

  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


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.

  • Like 1

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

3 3

  • Who's Online   9 Members, 1 Anonymous, 385 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 05/22/2018 - Proteins are the building blocks of life. If scientists can figure out how to create and grow new proteins, they can create new treatments and cures to a multitude of medical, biological and even environmental conditions.
    For a couple of decades now, scientists have been searching for a biological Rosetta stone that would allow them to engineer proteins with precision, but the problem has remained dauntingly complex.  Researchers had a pretty good understanding of the very simple way that the linear chemical code carried by strands of DNA translates into strings of amino acids in proteins. 
    But, one of the main problems in protein engineering has to do with the way proteins fold into their various three-dimensional structures. Until recently, no one has been able to decipher the rules that will predict how proteins fold into those three-dimensional structures.  So even if researchers were somehow able to design a protein with the right shape for a given job, they wouldn’t know how to go about making it from protein’s building blocks, the amino acids.
    But now, scientists like William DeGrado, a chemist at the University of California, San Francisco, and David Baker, director for the Institute for Protein Design at the University of Washington, say that designing proteins will become at least as important as manipulating DNA has been in the past couple of decades.
    After making slow, but incremental progress over the years, scientists have improved their ability to decipher the complex language of protein shapes. Among other things, they’ve gained a better understanding of how then the laws of physics cause the proteins to snap into folded origami-like structures based on the ways amino acids are attracted or repelled by others many places down the chain.
    It is this new ability to decipher the complex language of protein shapes that has fueled their progress. UCSF’s DeGrado is using these new breakthroughs to search for new medicines that will be more stable, both on the shelf and in the body. He is also looking for new ways to treat Alzheimer’s disease and similar neurological conditions, which result when brain proteins fold incorrectly and create toxic deposits.
    Meanwhile, Baker’s is working on a single vaccine that would protect against all strains of the influenza virus, along with a method for breaking down the gluten proteins in wheat, which could help to generate new treatments for people with celiac disease. 
    With new computing power, look for progress on the understanding, design, and construction of brain proteins. As understanding, design and construction improve, look for brain proteins to play a major role in disease research and treatment. This is all great news for people looking to improve our understanding and treatment of celiac disease.
    Source:
    Bloomberg.com

    Jefferson Adams
    Celiac.com 05/21/2018 - Just a year ago, Starbucks debuted their Canadian bacon, egg and cheddar cheese gluten-free sandwich. During that year, the company basked in praise from customers with celiac disease and gluten-sensitivity for their commitment to delivering a safe gluten-free alternative to it’s standard breakfast offerings.
    But that commitment came to an ignoble end recently as Starbucks admitted that their gluten-free sandwich was plagued by  “low sales,” and was simply not sustainable from a company perspective. The sandwich may not have sold well, but it was much-loved by those who came to rely on it.
    With the end of that sandwich came the complaints. Customers on social media were anything but quiet, as seen in numerous posts, tweets and comments pointing out the callous and tone-deaf nature of the announcement which took place in the middle of national Celiac Disease Awareness Month. More than a few posts threatened to dump Starbucks altogether.
    A few of the choice tweets include the following:  
    “If I’m going to get coffee and can’t eat anything might as well be DD. #celiac so your eggbites won’t work for me,” tweeted @NotPerryMason. “They’re discontinuing my @Starbucks gluten-free sandwich which is super sad, but will save me money because I won’t have a reason to go to Starbucks and drop $50 a week,” tweeted @nwillard229. Starbucks is not giving up on gluten-free entirely, though. The company will still offer several items for customers who prefer gluten-free foods, including Sous Vide Egg Bites, a Marshmallow Dream Bar and Siggi’s yogurt.
    Stay tuned to learn more about Starbucks gluten-free foods going forward.

    Jefferson Adams
    Celiac.com 05/19/2018 - Looking for a nutritious, delicious meal that is both satisfying and gluten-free? This tasty quinoa salad is just the thing for you. Easy to make and easy to transport to work. This salad of quinoa and vegetables gets a rich depth from chicken broth, and a delicious tang from red wine vinegar. Just pop it in a container, seal and take it to work or school. Make the quinoa a day or two ahead as needed. Add or subtract veggies as you like.
    Ingredients:
    1 cup red quinoa, rinsed well ½ cup water ½ cup chicken broth 2 radishes, thinly sliced 1 small bunch fresh pea sprouts 1 small Persian cucumber, diced 1 small avocado, ripe, sliced into chunks Cherry or grape tomatoes Fresh sunflower seeds 2 tablespoons red wine vinegar  Kosher salt, freshly ground pepper Directions:
    Simmer quinoa in water and chicken broth until tender.
    Dish into bowls.
    Top with veggies, salt and pepper, and sunflower seeds. 
    Splash with red wine vinegar and enjoy!

    Jefferson Adams
    Celiac.com 05/18/2018 - Across the country, colleges and universities are rethinking the way they provide food services for students with food allergies and food intolerance. In some cases, that means major renovations. In other cases, it means creating completely new dining and food halls. To document both their commitment and execution of gluten-free and allergen-free dining, these new food halls are frequently turning to auditing and accreditation firms, such as Kitchens with Confidence.
    The latest major player to make the leap to allergen-free dining is Syracuse University. The university’s Food Services recently earned an official gluten-free certification from Kitchens with Confidence for four of the University’s dining centers, with the fifth soon to follow.
    To earn the gluten-free certification from Kitchens with Confidence, food services must pass a 41 point audit process that includes 200 control check points. The food service must also agree to get any new food item approved in advance, and to submit to monthly testing of prep surfaces, to furnish quarterly reports, and to provide information on any staffing changes, recalls or incident reports. Kitchens with Confidence representatives also conduct annual inspections of each dining center.
    Syracuse students and guests eating at Ernie Davis, Shaw, Graham and Sadler dining centers can now choose safe, reliable gluten-free food from a certified gluten-free food center. The fifth dining center, Brockway, is currently undergoing renovations scheduled for completion by fall, when Brockway will also receive its certification.
    Syracuse Food Services has offered a gluten-free foods in its dining centers for years. According to Jamie Cyr, director of Auxiliary Services, the university believes that the independent Gluten-Free Certification from Kitchens with Confidence will help ease the anxiety for parents and students.”
    Syracuse is understandably proud of their accomplishment. According to Mark Tewksbury, director of residence dining operations, “campus dining centers serve 11,000 meals per day and our food is made fresh daily. Making sure that it is nutritious, delicious and safe for all students is a top priority.”
    Look for more colleges and universities to follow in the footsteps of Syracuse and others that have made safe, reliable food available for their students with food allergies or sensitivities.
    Read more.

    Zyana Morris
    Celiac.com 05/17/2018 - Celiac disease is not one of the most deadly diseases out there, but it can put you through a lot of misery. Also known as coeliac, celiac disease is an inherited immune disorder. What happens is that your body’s immune system overreacts to gluten and damages the small intestine. People who suffer from the disease cannot digest gluten, a protein found in grain such as rye, barley, and wheat. 
    While it may not sound like a severe complication at first, coeliac can be unpleasant to deal with. What’s worse is it would lower your body’s capacity to absorb minerals and vitamins. Naturally, the condition would cause nutritional deficiencies. The key problem that diagnosing celiac is difficult and takes take longer than usual. Surprisingly, the condition has over 200 identified symptoms.
    More than three million people suffer from the coeliac disease in the United States alone. Even though diagnosis is complicated, there are symptoms that can help you identify the condition during the early stages to minimize the damage. 
    Here is how you can recognize the main symptoms of celiac disease:
    Diarrhea
    In various studies conducted over years, the most prominent symptom of celiac disease is chronic diarrhea.
    People suffering from the condition would experience loose watery stools that can last for up to four weeks after they stop taking gluten. Diarrhea can also be a symptom of food poisoning and other conditions, which is why it makes it difficult to diagnose coeliac. In certain cases, celiac disease can take up to four years to establish a sound diagnosis.
    Vomiting
    Another prominent symptom is vomiting.  
    When accompanied by diarrhea, vomiting can be a painful experience that would leave you exhausted. It also results in malnutrition and the patient experiences weight loss (not in a good way though). If you experience uncontrolled vomiting, report the matter to a physician to manage the condition.
    Bloating
    Since coeliac disease damages the small intestine, bloating is another common system. This is due to inflammation of the digestive tract. In a study with more than a 1,000 participants, almost 73% of the people reported bloating after ingesting gluten. 
    Bloating can be managed by eliminating gluten from the diet which is why a gluten-free diet is necessary for people suffering from celiac disease.
    Fatigue
    Constant feeling of tiredness and low energy levels is another common symptom associated with celiac disease. If you experience a lack of energy after in taking gluten, then you need to consult a physician to diagnose the condition. Now fatigue can also result from inefficient thyroid function, infections, and depression (a symptom of the coeliac disease). However, almost 51% of celiac patients suffer from fatigue in a study.
    Itchy Rash
    Now the chances of getting a rash after eating gluten are slim, but the symptom has been associated with celiac disease in the past. The condition can cause dermatitis herpetiformis, which causes a blistering skin rash that occurs around the buttocks, knees, and elbows. 
    A study found out that almost 17% of patients suffering from celiac disease might develop dermatitis herpetiformis due to lack of right treatment. Make sure you schedule an online appointment with your dermatologist or visit the nearest healthcare facility to prevent worsening of symptoms.
    Even with such common symptoms, diagnosing the condition is imperative for a quick recovery and to mitigate the long-term risks associated with celiac disease. 
    Sources:
    ncbi.nlm.nih.gov  Celiac.com ncbi.nlm.nih.gov  mendfamily.com