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

Gluten-Free Dining & Traveling With Other Allergies


amahones

Recommended Posts

amahones Rookie

Hi! I have had severe food allergies my entire life (pine nuts, sesame, shellfish and peanuts) so eating in restaurants and traveling (two things which I love very much) has always been SLIGHTLY challenging. It's pretty much a second nature to me though. I always get things very plain, basic, etc. I would have anaphylactic reactions in response to these foods, but my sensitivity to them never seemed to be very high (in other words, I didn't have to worry about cross contamination much).

Now, with being unable to have gluten, it seems like cross-contamination is even more serious of a concern (if that's even possible) and I'm having a hard time understanding this. I eat products that say "Manufactured in a facility that also processes peanuts" and have never had a problem but from what I understand, cross-contamination is huge with Celiac disease. Is it any bigger of an issue with food allergies?

Another question I have is this: When I used to go out to eat, I would often order a cheeseburger without the bun - just because I don't like the bun. Is that considered "safe" for people with Celiac disease, or would I also have to check and make sure that it is cooked in a separate/cleaned pan, etc.? Do any of you go to restaurants that DON'T have gluten free menus and just speak to the chef or manager before hand to see if they can accommodate you? My experience with food allergies was that if the menu seemed too iffy, I'd just ask if they could basically prepare me broiled salmon or haddock, or plain grilled chicken - no sauces, nothing. I'm wondering if I could also do that for Celiac disease.

And lastly: Do any of you travel internationally? I've found a few websites about traveling with Celiac disease but it does seem to be overwhelming. Again, with food allergies, I've always just written down my allergies in whatever language, but this seems much more complicated. Plus, I've noticed that sometimes regular flour is substituted with nut flour in many things that are "gluten-free."

Basically - I'm totally overwhelmed by having ALL these allergies on top of Celiac. Luckily, my diet was very low in gluten to begin with, so it won't be as difficult for me as it probably is for many people to adjust ... but it's still scary.

Any advice on any of these questions would be appreciated. Thanks!


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



Celiac.com Sponsor (A8-M):



bartfull Rising Star

First, I would like to warn you that just because cross contamination with things like peanuts hasn't been a problem YET, it could become a problem at any time. So because I care about your health and your life, I would advise you to be MUCH more careful with the things you have an allergic reaction to. The next time you eat something from a facility that processes peanuts could be the time you react, and you could DIE.

Gluten cross contamination won't kill you right away although it might make you FEEL like you are dying, or it might make you WISH you could die to get away from the sickness you will feel. AND, in the long run it might bring on other AI diseases or cancer. So yeah, in the long run celiac can kill you too if you don't adhere to the diet strictly.

Restaurants? Well I don't have a lot of experience with them because I don't go to them. That isn't because I am scared to eat out, but because the restaurants in my area A) aren't that good anyway so why take a chance, and B) I seriously doubt they would understand well enough to prevent CC in my food. If a place nearby had a gluten-free menu AND had good reviews from the folks here, I would consider it. PF Changs comes to mind. But alas, there is no PF Changs in my area.

The only other restaurant I would consider is one where you know the people really well and they understand what celiac is. Sometimes you will get lucky and there will be a member of the staff who has celiac and they will know how to prepare your food safely. For example, the burger you mentioned - if it is cooked on the flat grill, that is also where they toast the buns. And they also pull those bunss off of the grill with the same spatula they will flip your burger with. So you need to talk to the chef and HOPE he complies with your wishes. I have worked in restaurants and seen the cooks ignore special requests before. I don't trust any of them.

Foreign travel? I have no experience with that since going gluten-free so I can't help you there, but I'm sure someone will be along shortly who can.

love2travel Mentor

We travel internationally and I have celiac. No, it is not easy, but I refuse to allow celiac to prevent me from doing what I love most. The most difficult part for me is the flights and airports. The food on Air Canada, Lufthansa, etc. is absolutely horrid so I take along my own snacks. Delays are inevitable so I plan ahead. The only options available at airports I've been to (including Frankfurt, Venice, Toronto) are fruit which is very unsatisfying and dull. Again, I plan ahead for it.

When we travel to a country where English is not the first language I take along restaurant cards which describe celiac and what I can/cannot have. If the people at the restaurant look clueless we do not eat there. If they are reassuring and know what they are tallking about I will order grilled fish, for example. There is still a chance of CC but that can happen anywhere. Not that I am all about taking chances - I'm not - but it is a reality. If at all possible, I call ahead to speak with the chef. But sometimes that does not work with language barriers. We own a house in Europe so thankfully we are able to do our own cooking but we also enjoy eating the local specialties in restaurants.

I do not have multiple food allergies as you do, however. Sorry you must deal with all that. :( But if at all possible continue to do what you love. I used to allow chronic pain to rule my life (it is still very bad) but now I control the pain, not the other way around. So, I manage and cope the best I can. Flying and sitting are incredibly brutal on me but I still do it. It helps mentally knowing I CAN do these things! It is empowering, that is for certain.

I've actually rarely been to any restaurants with gluten-free menus but the restaurants we go to are fine dining with no deeep fryers, highly-trained staff and 75% of the menu is naturally gluten free. Sure, it is more expensive, but it is a treat and worth presence of mind. :)

Where are you traveling to? Perhaps if you could give us an idea one of us would be able to help with firsthand experience.

cap6 Enthusiast

We travel alot, but in our RV which saves me a lot of worry. When we do dine out I always look for place I know has a gluten-free menu like Red Robin, PF Chang, Outback ec. I usually ask for the kitchen manager and state that I am celiac & not eating gluten-free as a fad or diet choice. If they respond in a knowledgable way explaining thier CC prevention pracices then I can feel safe. I always have some snacks in my purse or car just in case.

Also there are some apps for your phone like Find Me Gluten Free that are helpful but always have some back-up snacks just in case. I found that out the hard way when I looked up a place, called ahead and was assured gluten-free was available and when we arrived the place turned out to be a small deli with bread crubs everywhere. That was a long hungry day as I hadn't brought along any back-up snacks!

SvenskaSpark Newbie

You should never let your condition stop you from traveling. I've got to have THE thinnest skin when it comes to dealing with my Celiac and dining out, especially when I travel in other countries.

I'm currently studying abroad in Paris, France, which presents its own set of specific issues. I'm fluent in French, and I know how to properly communicate my disorder, my allergies, and what I can and cannot eat to a waiter or a chef. There are cards that you can print out and carry with you that are in all sorts of languages, and many restaurants will help you out if you show them these cards. I like the ones from the following site. The French ones are correct both in grammar and in vocab, so I'm hoping the other languages are just as accurate. Open Original Shared Link

France is arguably the worst country to travel to when you've got a dietary condition like Celiac Disease simply because the culture is so private, you're not supposed to go around saying "I have an allergy to wheat" or "I follow a gluten-free diet" all the time, even though this is what we have to do in America or the UK. The first time I went to a restaurant here and I said "please don't bring bread with my meal, I won't eat it, I follow a gluten-free diet," (yes I said this entirely in French), the waiter was shocked, told me never to say that to anyone else, and that people don't talk about those kinds of things because that's a private matter. He then dealt with my friends in French for the rest of the meal, and spoke to me only in English. I've also been warned that if and when I say "does this have wheat in it?" or "I have an allergy to wheat" the typical French waiter's reaction will be a phrase that loosely translates to "oh, so you're going to be a brat." This isn't rude, that's just how French humor is. Again, I have a thin skin, so this terrifies me, but my reaction is supposed to be "yes, I'm going to be a brat, but I have to be, so does this have wheat in it or not?" The best thing to do is read up on the common cooking methods in the region you're visiting so you know what has gluten (or the other things you're allergic to, in your case) and what doesn't so you know what to avoid on a menu, then pick something you THINK is safe, and ask the waiter if it's cooked with flour or wheat.

As for air travel, fly Air France if you can. They've got a wonderful gluten-free meal, and you get served first on the flight.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,872
    • Most Online (within 30 mins)
      7,748

    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.