When you can't avoid gluten

[Lenbh]

I'll be going on vacation to Europe for a few weeks in June, and there will likely be times that I can't avoid gluten - or at least can't confirm the food is gluten-free it in every case.  There might even be a time when I really want to try something that may have gluten.  I'm fortunate enough that even though I've been diagnosed with Celiac disease, the symptoms are fairly mild - just a bit of diarrhea, generally, and so it's fairly tolerable.  I would, of course, try to avoid gluten whenever possible.

My question is: I know I'm doing damage to my intestinal villi when I eat gluten-containing foods, but is it a big deal if I eat those foods for just a few days, or on and off for a week or two, and then return to my regular gluten-free diet afterwards?

Thanks for your thoughts.

Cheers.
Len

[Ennis-TX]

An antibody flare up will keep causing damage for weeks or months after a exposure even if you have no symptoms, I am sure someone else will show you the document ion on this on another post. My suggestion is invest in a testing kit or a Nima kit to test stuff if you have to. Pack some sealed nuts, seeds, dried fruits, bars, or a container of meal replacement shake for the trip. Nuts.com for nuts, Gerbs for dried fruit and seeds, and I would suggest kind, julian bakery, or many other bars, as for shakes pioneer labs makes a celiac shake, MRM makes some good shakes and there are several others.

[cyclinglady]

Yes, you can travel to Europe safely.   Print off (or put into your phone) celiac travel cards available for free in most languages.  Take EnnisinTexas's advice.  Bring food.  Do not expect the airlines to actually feed you (50/50 they'll remember to throw on a gluten-free meal even if you call more than once!!!!!).  Eat at grocery stores.  

Mild celiac symptoms?  I do not know how long you have been gluten free or how many times you have been glutened, but celiac symptoms can change.  Gee, let's hang out in the hotel bathroom while friends have fun exploring the city you have waited a lifetime to see.  I honestly do not get your statement that you might want to try something that has gluten.  I would attempt to make it at home in a gluten free version.  No cake or noodle is worth hours of being sick, or worse months....

Consider travel insurance.  Nice to be able to get on a helicopter if you fall down a canyon or a plane needs to be diverted because you get seriously sick on it.  Call to find out exactly what is covered on your health plan -- it might not cover what you think.  You have a serious illness that can be managed.  You just need to be proactive.  Take less risks.  

Finally, have fun!  

[Lenbh]

Thanks for the replies, Ennis_TX and cyclinglady.

Ennis_TX's comment about the antibody flareup is exactly what I was looking to understand.  Obviously, regardless of whether I have symptoms or not, I don't want to be doing damage for an extended time just because I ate something with gluten today.  So, I'll simply have to avoid it.  I was diagnosed with celiac about 2+ years ago, and have eaten gluten free ever since.  On the odd occasion that I've been "glutened", the symptoms for me are really minor.  I've never had to rush to a washroom or anything even close to that.  When I was diagnosed, I was told by the doctor that I was probably doing damage for at least a couple of years prior, and I never knew it was a problem.  That's how minor the symptoms are for me.  Maybe I'm lucky in that regard, at least.

It's tough to travel with 3 weeks worth of groceries to Europe, but I will pack some basics and a bunch of munchies, and we can do some grocery shopping at our destinations.  We're staying in condos with a kitchen, so not hard to work with that.

I saw the travel cards online, and that's a great idea.  I always get travel insurance, and will have it in this case as well.

Thanks for all the advice.  It's greatly appreciated.

[ravenwoodglass]

In addition to the great advice you have already gotten you may want to give a short itinerary of the cities and countries you plan to visit one the International thread. We have members from all over the world so you may be able to get some advice about places you can eat out that would be safe.

[Lenbh]

Thanks for the suggestion, revenwoodglass!  I'll look to see what's already posted, and will ask for advice there.

[kareng]

21 minutes ago, Lenbh said:

Thanks for the replies, Ennis_TX and cyclinglady.

 

It's tough to travel with 3 weeks worth of groceries to Europe, but I will pack some basics and a bunch of munchies, and we can do some grocery shopping at our destinations.  We're staying in condos with a kitchen, so not hard to work with that.

 

Thanks for all the advice.  It's greatly appreciated.

They have groceries in Europe.  I have never been there, but I have heard that people do purchase groceries.  Lol  you might not be able to buy gluten-free cookies in some places, but you should be able to get fruit, veggies, cheese, etc.  looks like  you can cook at some points so, you could get meat or potatoes or rice. Keep it simple so it's  not a huge chore.  

It seems that Italy, England,and Ireland are pretty Celiac aware.   You might google " gluten free country or city" and see what you get.  If they have a Celiac society/ association, they may have a forum or a Facebook page.

[Jmg]

Len I wrote this some time ago for someone visiting the UK, hopefully it may be of some use:

Quote

 

Hi Ricardo and welcome to the forum

The good news is that there's a lot of gluten free food available in UK and I think there may be even more in Dublin as there's a lot of celiacs in Ireland.

Every major supermarket - Asda, Sainsburys, Tesco and Morrison have a 'Free From' section where you can find gluten free bread, biscuits, crackers etc.  In Ireland I think the smaller Aldi and Lidl may also carry gluten free.

All UK foods have allergens such as wheat clearly labelled - on the ingredients list they will be shown in bold or italics.

All Open Original Shared Link(the larger chains will do this) or their staff will show you an allergen list if you ask them. Note that not all staff may have a good level of understanding of this however. Print out this card: Open Original Shared Link and show them it so they know to take especial care with your child's food

Finally there are sites you can use to research in advance: 

This site lists major food chains which understand the gluten free diet requirements. There should be one of these near you: Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I hope you all have a great time in the UK and please say if there's any more info you need

adios!

 

Even if you're not going to the UK there are other travel cards you can print out. All EU countries should be following the regulations on food packaging and a lot of the gluten free foods that show up in UK supermarkets originate on mainland Europe so even if language is a struggle you should be safe shopping in supermarkets. Look for Schar for example: Open Original Shared Link

Some other useful links via: Open Original Shared Link

and this account has some tips: Open Original Shared Link

Have a great time over here, I hope you enjoy your visit as much as I've loved my time in the US.

Matt

 

[Jmg]

5 hours ago, Lenbh said:

There might even be a time when I really want to try something that may have gluten

Funnily enough we were debating a new product recently called GliadinX which may be of interest:  Open Original Shared Link I don't think as a diagnosed celiac it would be wise to actively ingest gluten filled foods, I wouldn't anyway, but maybe it would help you in situations where you fear some cross contamination? 

[cyclinglady]

Those travel cards work well even at local markets or  grocery stores.  For example, we were in Poland and had a hard time reading some labels (unlike other EU countries),  store employees were so helpful after reading our card in Polish.    Searching for restaurants "celiac friendly" was helpful too.  Pharmacies carry some gluten free things too.  Handy when shops are closed on Sundays as these are often open.  

You do not have to pack a ton of food, just a few meals to get you by in case you can not find anything.  The only time we have been desperate was on the airplane where they repeatedly forgot to provide our gluten free meals despite my confirming several times.  That has happened several times and on different carriers internationally.  You can not exit the plane to go look for food!  

Bring toaster bags.  We used them in Bed and Breakfast Inns and hotels.  You can order them on Amazon.  We also packed a collapsible cooler.  Bought picnic stuff upon our arrival, plastic ware, etc. and had picnics if we could not find a suitable restaurant.  

Sans Gluten!  

 

[cyclinglady]

13 minutes ago, Jmg said:

Funnily enough we were debating a new product recently called GliadinX which may be of interest:  Open Original Shared Link I don't think as a diagnosed celiac it would be wise to actively ingest gluten filled foods, I wouldn't anyway, but maybe it would help you in situations where you fear some cross contamination? 

I would not use these as prevention, but maybe they would help a post-glutening.  In my case, I travel with lactose tablets and digestive enzymes.    When glutened, I become lactose intolerant again.    Would hate to miss out on some gelato.  Do not forget any meds you normally take too.  

[Ennis-TX]

19 minutes ago, Jmg said:

Funnily enough we were debating a new product recently called GliadinX which may be of interest:  Open Original Shared Link I don't think as a diagnosed celiac it would be wise to actively ingest gluten filled foods, I wouldn't anyway, but maybe it would help you in situations where you fear some cross contamination? 

They do not work for prevention, they might help with getting over the gut pains. But will not stop the antibody reaction, or the damage. At $100+ a bottle your better off investing in Nima or EZ gluten strips and testing foods.  

Other thoughts for quick alternatives. They sell microwave cookers out of plastic and silicon for eggs, bacon, etc. Might be worth getting and doing dishes that way. Steam bags and fresh veggies also to avoid pans and pots that could have issues. I been looking at MRE type stuff allergen friendly myself for trips and emergency's. Things get expensive at $6-7 a meal compared to bars or shakes.

[TexasJen]

Lenbh- I was diagnosed last year and I have wondered that very question. Not too long ago (before kids) I traveled quite a bit. The idea of traveling now with celiac is a bit overwhelming.  I am pretty strict at home to avoid gluten and almost never eat in situations where CC is even possible- and as far as I can tell, I don't really get any symptoms of glutening.  

I have definitely heard that it is easy to travel to Ireland with celiac. In fact, many restaurants have 2 menus - a regular and a coeliac. They often cook the food in a separate kitchen as well. 

I can't wait to take my kids to Italy and am already thinking "how in the world will that ever work???"

I have decided so far that I will do my best, not knowingly eat gluten, and try to buy food in stores or eat in "safe" restaurants -but understand that the more often I eat in restaurants, the more likely it is to be exposed to gluten. I guess it's just a risk I'm willing to take every once in a while so that I can explore the world with my kids. 

And, yes, Gelato! At least twice a day while in Italy...:)

[Jmg]

15 minutes ago, Ennis_TX said:

They do not work for prevention, they might help with getting over the gut pains. But will not stop the antibody reaction, or the damage.

As I understood it they help break down gluten in the gut. We were discussing them here very recently I can't find the thread where it was discussed however. I wouldn't use them to actively eat something with gluten, but I think if I were travelling I'd like to pack something like this to try and reduce the chances of cross contamination. Even if they only work on a placebo basis I'll take any edge I can!

Anyway Len, I don't want to derail your thread any further, just something I remembered that may be of interest given your devil may care stance

Matt

[Lenbh]

TexasJen - It sounds like we're in similar situations.  While I make every effort to avoid gluten in restaurants, I don't go nuts about it.  When in doubt, I aim for salads, and try to be careful with the dressings.  I will eat ice cream, but if I can't confirm it's gluten-free, then I stick with the basics (no cookies and cream or brownie bits, and yes, I'm aware that even then it may not be safe).  I'm not sure it's a good thing that I have very little in the way of symptoms, since it doesn't give me much of a warning that I'm doing harm.

We're travelling to Amsterdam and then on to Lisbon.  From what I can see there are plenty of great gluten-free options in Amsterdam (bagels, pizza, etc), and I think enough that I won't go hungry in Lisbon, either.

Thanks again, everyone, for all the feedback and ideas!

[KEMB]

The only information that seems to be available on gliadinx is from the outfit that sells it.  I'm very leary of these products that people are desperate for and which are highly priced. A product to deal with incidental ingestion of gluten is what we dream of, but supplements aren't regulated enough to avoid for-profit scams.  I was actually disappointed to see this website publish an article a while back that could be interpreted as endorsement of this product..  I'm waiting to see some independent analysis and support from the celiac medical community rather than dump a bunch of money to try it out.  There was another product several years ago making the same claim and it disappeared from the market.   And of course as already discussed, if it is effective, it would only be for incidental ingestion of gluten if taken when the food is being ingested.   But wouldn't that alone be life changing!

[Jmg]

Two fantastic cities, have loved my time in each. Sadly the hash brownies in Amsterdam are definitely gluten filled and I suppose the cones of chips with mayo are a risk depending on what else they fry in them  so it'll have to be a night in the coffee shops Len  

I think Pudim flan should be gluten free, Portuguese caramel pudding.  There are some fantastic Portuguese fish dishes that should be ok. Calde verde soup is another personal favourite. You can sample the Vinho verde of course. Portugal is one of my favourite countries, great people and Lisbon has some great sights to explore. 

 

[GFinDC]

Hi Len,

you could also look at getting some DPP-IV or DPP-4.  DPP-4 is an enzyme reputed to break down gluten to some extent anyway.  Of course, the testing was done in a lab and not a person.  And it wasn't a complete and perfect thing because you have to know the correct amount of enzyme to add to the gluten portion to break it down.  At least DPP-4 is available at reasonable prices.  I use it if  I think I might have gotten a gluten cross contamination issue, or any digestion problem really.  It's definitely not going to let you eat a gluten food without symptoms and damage though.  It might slightly reduce the symptoms a little.  But a little bit of help is better than nothing.  DPP-4 won't stop the immune reaction from occurring.  Nothing we know of now would do that except and outright cure for celiac disease.  Or not eating gluten, which is a lot more doable at the moment.

[Posterboy]

KEMB,

Here is research as published on Celiac.com for the active ingredient AN-PEP in Gliadinx.

https://www.celiac.com/articles/24141/1/AN-PEP-Enzyme-Digests-Gluten-in-Healthy-Volunteers-So-What/Page1.html

quoting there summary of the EN-PEP study

"in the placebo group, the high compared to low calorie meal slowed gastric emptying and lowered the duodenal α-gliadin concentration AUC0-240 min (32 vs. 168 μg × min/mL; P = 0.001).

These results confirm that AN-PEP significantly enhanced gluten digestion in the stomach of healthy volunteers, while increasing caloric density prolonged gastric residence time of the meal.

According to the authors, these results suggest that AN-PEP shows promise as an anti-gluten digestive enzyme for people with celiac disease, but further study is clearly needed.

Still, the fact that AN-PEP can effectively break down gluten in the stomach of healthy volunteers is a good start, but it means little if AN-PEP can’t do the same in people with celiac disease, which remains to be seen."

I hope this is helpful.

posterboy,

 

[KEMB]

Thank you posterboy for sharing the study information.  I hadn't seen this one.  Even though it's a very small sample size and not enough to confirm effectiveness for celiacs, it's a start.  Hopefully there are other studies going on - I haven't looked into it and need to try harder to stay up to date. 

[Jenifleur]

I live in Switzerland and travel to England, France and Italy regulary.  No problem for gluten free products in the larger supermarkets and even some smaller ones, and hotels are very accomodating if you ring ahead so you can at least get a good breakfast or evening meal.  Schar and Alnavita are good brands here.  Have a lovely holiday and let us know how you get on.  ?

[Lenbh]

Hi, everyone.

I'm back from a 19 day vacation in Europe - Amsterdam and Lisbon - and thought I'd give you an update on my gluten-free experience, in case it's helpful to anyone.

Amsterdam was great - with respect to being both "fun" and "gluten free"!  The canals are so picturesque, and the city so vibrant.  I think riding a bike there is harder than driving a car!  Merging, staying in the right lane, avoiding traffic and pedestrians... the locals have it down to a fine art!  As for food, many of the restaurants either had gluten free menus, or at least knew what was gluten-free on their menu.  As in most places, many of the little one-off restaurants were more hit-and-miss.  Still, it wasn't hard to stay gluten-free.  A small chain of restaurants called "Bagels & Beans" had gluten-free figured out, and even had great gluten-free bagels.  Even at a local street market (Albert Cuyp Market, to be exact), one of the vendors had gluten-free treats.  gluten-free labeling on foods in the supermarket was as prevalent as at home.  I used an app on my iPhone called "Find Me gluten-free", and it was able to locate quite a few good eats places.

Lisbon was a lot of fun - you just need to be in good shape and have really good shoes if you wanted to walk the city.  Most streets went up or down, some went "really up" or "really down"!  We walked almost all the time, rather than taking the tram/metro/bus.  gluten-free was another story, though.  Most restaurants had little or no idea of whether their product was gluten-free, and when I tried to explain it, I often got the response "nothing is gluten-free".  Maybe they were playing it safe.  There were a few that "got it".  A highlight was at the Hard Rock Cafe in Lisbon, where they had a separate gluten-free menu, and the server explained the options in detail.  I asked about the nachos (which were on the gluten-free menu), and he explained that they deep fry a special batch each morning in fresh oil, just for that purpose.  We had a great meal there.  We ate at a mom-and-pop barbeque restaurant several times (Churrasquiera da Paz, in case you're interested).  They grill fresh fish and other meats, and serve boiled veggies, fries, bread, etc.  When I explained the need for gluten-free, and what that meant, he told me they only grill the fresh fish, and nothing is breaded.  I avoided the fries and bread, of course.  The standby at other restaurants, when nothing else looked ok, was a salad.  I found gluten-free gelato, which I had "several" times!  I found the iPhone app was of limited help in Lisbon.

So was I successful in avoiding gluten?  I think I did pretty good, but because (fortunately or not) I don't have any of the bad symptoms that most people do when "glutened", I can't really say for sure.  I tried really hard!

Thanks again for all the pre-trip advice above.

Cheers.