The Definitive Guide to Gluten Free Travel

Backstory

My husband has celiac disease. Before his diagnosis, for over eight years he was sick with exactly 100 mainly neurological, rheumatologic, and digestive symptoms. He and I visited 41 doctors, trying to find the cause. Hubby eventually figured it out himself, but until his GI doctor got the results of his (5th) endoscopy she didn’t believe him. The lab report confirmed that he has celiac. And he’s got it pretty bad, especially for an adult. It can be life threatening in some children.

The only way to handle celiac is to avoid gluten entirely. Gluten is a protein found in wheat and some other grains. Unfortunately, going gluten free is not merely a matter of avoiding breads and desserts. Gluten is hidden in many processed foods.

The Attitude

People without celiac often say this to me or to hubby: “They have gluten free everywhere now.” Although I’m sure they don’t mean to, they sound so cavalier. In the U.S., we love a positive attitude. People with illnesses and “different abilities” are encouraged to show how brave they are. On the news we are deluged with feel good stories about people who have lost all their limbs creating masterpieces and armless people driving cars. In their TV interviews, they sound so upbeat. We speak of being inspired by them.

I don’t have to worry about being the sad sack with a pessimistic realistic attitude. I don’t have to feel that I should be an inspiration to others. I don’t have celiac. I’m not gluten free. If I eat gluten or not, I can’t tell the difference. So I CAN TELL YOU THE TRUTH ABOUT TRAVELING GLUTEN FREE.

When my husband was first diagnosed, the only way to eat at a restaurant was to take his own salad dressing and go to a restaurant with a chef-run kitchen that offers steak or fish/seafood. Then he had to order a steak unmarinated and a baked potato (hardly any restaurants serve the latter any more, by the way), and a salad without croutons or other contaminants. His only seasoning was salt and pepper and, if he was lucky, a little garlic.

Gluten Free Craze

Then the gluten free craze happened. This happened for two reasons. One is that the amount of people who are celiac (which is an auto-immune disease) and who are gluten intolerant (similar to an allergy, but not an actual allergy) has risen dramatically because our wheat has been created with 100 times the protein it had 100 years ago. NO KIDDING. And also because food manufacturers were adding it to processed food right and left. The other reason is that some people decided a gluten free diet was healthier or a way to lose weight (no, it’s not). Therefore, now it’s much easier to find gluten free food in stores and restaurants.

So How Does That Affect Travel?

Being gluten free while traveling is still a nightmare. You know all those gluten free menus in restaurants you see now? Most of those restaurants cannot provide a gluten free meal to people with severe celiac. People who are gluten intolerant (except the ones with a very severe version) and people who avoid gluten for other reasons don’t know when they have been “glutened,” but somebody like my husband suffers very much when they are glutened. The response from restaurants that do so tends to be that they never promised they were a gluten free environment.

Since hubby got sick 12 years ago, he has mainly only travelled for business, medical, and for our daughter’s college graduation. And he didn’t fly again until this past year when we visited my parents three times.

Now that hubby has been gluten free for a few years and is feeling so much better (with occasional bouts of illness generally related to restaurant food), we decided to see if we could travel. Not a trip where we go to my mother’s house and stock it with gluten free food and cook there. But an actual vacation adventure.

This is How A Celiac Fares During Travel

We had booked a three hour flight to Seattle. That is about as long as we dare to fly because hubby can’t eat food at airports as they are not equipped to offer “allergen free” foods. He has a weak stomach that has been caused by this illness. The man who once ate hot peppers dipped in fire hot sauce in Korea can now not even tolerate raw cashews on days of stress, such as flying day. Once we enter the airport, he can only eat the dry food we pack in his carryon. He brings rice cakes, rice crackers, a Kind bar, and an apple. I try to bring him some cheese as well, but I do worry because there is no way to keep it cold. Keep in mind that hubby is 190 lb of dense muscle. He works out 2 hours 5-6x week.

With a three hour flight, getting to the airport 1.5 hours early, .5 hour to get to the airport, and then time to get our baggage and rental car and get acclimated, I figured that he would be 6-7 hours without a meal. No problem. He had a piece of gluten free toast with cashew butter for breakfast. That was all he could handle before a flight, but he could wait the seven hours.

Well, our flight was three stinken hours late. That meant that he could not get a meal for 11 hours as we arrived at rush hour.

As an aside, is there a reason that Southwest Airlines has to offer as its only food choices gluten-coated peanuts and wheat crackers? Seriously? Since peanuts are such a dangerous allergy, why carry them at all? And why can’t one of the two options be gluten free?

That first night on our trip, after the long day at the airport and on the flight, we couldn’t find a restaurant that had gluten free options except for Morton’s steak house. We didn’t want to spend the money for such a pricey meal when we were tired and I had my own health issues at that point. But we had no choice. Guess what? With all their care, hubby still got glutened. We don’t know what item it was, but something must have been made incorrectly or been cross-contaminated.

To make a long horror story short, we spent our 12 days of vacation scrounging food. On two occasions, we found restaurants that didn’t gluten him and that we liked (one Persian and the other sushi) and returned the second day only for him to be sick within an hour or two. One day, we spent almost the entire afternoon and early evening searching for a meal. Every restaurant we went to either had run out of food or was closed. Some were closed because the owners had arbitrarily decided to close for a few days. Some were closed because they don’t serve dinner (typically, a gluten free restaurant is a gluten free bakery that offers lunch and maybe breakfast).

Making our restaurant research more difficult than usual (when it’s always bad enough), we were in Canada for much of our trip, and we couldn’t use much wifi on the road or while out and about. Because the world now relies on everyone individually accessing the internet, we couldn’t get much help at our hotels—and phone books? What are those?

The one highlight of our gluten free dining was that our 2nd to the last hotel

was a nice resort and offered two delicious (and tiny) gluten free desserts.

Unfortunately, we had eaten dinner elsewhere, so when hubby was sick

that night we didn’t know if it was dinner or dessert so we didn’t dare order again.

We carried gluten free bread, salad dressing (useful for bunless burgers if the restaurant didn’t have gluten free mayo, etc.), and tamari sauce (tamari sauce is only made with soy and not with wheat, and tastes about 50 times better than regular old soy sauce anyway). Note that unless you order gluten free single serve salad dressing online (Kraft Thousand Island is hubby’s fave), you have to keep an opened bottle of dressing refrigerated. Not an easy task while traveling.

We also travel with a toaster because hubby can’t use toasters previously used for gluten bread. 1/500 of a slice of wheat flour bread is enough to gluten him, so imagine what would happen with those toaster crumbs in his GI system. A humidifier and air purifier are necessary too because of damage caused by the disease over time. (I feel like I’m traveling with Niles Crane).

When we went to the gardens, aquarium, walking downtown or at the waterfront (the list goes on), we had to carry this stuff with us just in case. Nothing is more frustrating than finding a place that can offer that plain burger and not have any bread or condiment for it.

After a week and a half of this kind of travel, I came home exhausted. I couldn’t remember the places I experienced, but only felt haunted by the hunt for food (and beverage in some cases—gluten free coffee creamer, gluten free cocktail ingredients, gluten free beer).

Hubby was sick so much of the time. And we were so careful. But it’s not good enough. There is no such thing as gluten free travel.

48 Comments

Filed under #AmWriting, Memoir, Nonfiction, Sightseeing & Travel, Writing

48 responses to “The Definitive Guide to Gluten Free Travel

  1. Okay, I’m Liking your post only because you’re back, but, my goodness, what an awful experience for you and hubby!!! I had NO idea how awful celiac disease could be. I know of only one person who has celiac disease and she’s an online friend so it’s not like I’ve had to share her pain.
    Thank you for the crash course in the disease and the difficulty in finding truly gluten-free food. I have to admit, I’ve been feeling skeptical about all the “gluten-free” advertising on food. Skeptical because much of it seems like an attempt to cash in on a growing problem, but also skeptical because I didn’t know how pervasive wheat was/is in our food supply. Now I understand better.
    Goodness, there’s nothing worse than a vacation that you need a vacation from (well, there probably are worse things, but …). I hope it is good to be home and at least in control of your own food supply now.

    • Yeah, it was pretty yukky. I know there is plenty worse. For instance, I had a taste of trying to travel in a wheelchair years ago and it was appalling how many bathrooms have been allowed to slip by without being handicap accessible. But it’s just not enjoyable to never be able to stop and eat somewhere without a whole process and the risk of getting sick.
      I definitely need a vacation now. I got a massage, though, as a way to pretend I am having a vacation ;).

  2. I went through this when I ran the gamut of allergy tests for myself, and then for Bubba and Moo. Not a pleasant time (3 weeks.) We are thankful we’re not Celiac sufferers.
    I am frequently angry about what’s in our food. Stuff that just doesn’t need to be in it. Do we need corn syrup in bread? Do we need soy instead of tamari? Preservatives so dense, they’re all one can taste? Drives me crazy. All the various names for dairy and gluten are so many, I had to carry a list and read everything. I maintain an anti-inflammatory diet for my arthritis, and I can tell the difference, absolutely. So I cannot imagine being limited by illness to food additives in such a way. It must be maddening!

    • Did you do allergy testing or was it an elimination diet you were on? Those are hideous because you have to go so bare bones at first before you start adding things back in. By the way, I might have to do that with my new kitty, Nakana, and I am not sure she won’t be happy either.
      It’s outrageous what they do to our food. I mean, why did they have to increase the gluten in our flour? It’s not needed by the body, so what is the point? And corn syrup, so ridiculous. What is a big thing to eliminate for an arthritis diet?

      • I did both, my kids did both, at different times. It was brutal. I hope you don’t have to do it with Nakana. Eek! She won’t even understand, lol!
        For arthritis, I avoid/limit fake sugar, preservatives, processed cereals, meat — especially beef — those are big triggers for me. The worst one has got to be store-bought white breads and pastries, with their combinations of gluten, corn syrup, preservatives, and trans fat. I’m still fortunate enough to balance it carefully. I cannot eat that stuff. I could do myself a real favor and avoid it all, but I prefer to do well 90% of the time with the fruits, veg, nuts, eggs and fish, and then be bad, by having a cheeseburger or a big ol pastrami sammich once a month, knowing I’ll be eating a lot of fruit and walnuts after, lol! The way I look at it, it’s a good thing I prefer foods closer to the life force!
        I bake challah, and challah is a high-gluten bread. The answer to why more gluten is ‘more sponge.’ The vast difference between a batch of all-purpose or wheat flour bread and bread flour bread can truly be seen, felt, and tasted.The problem is how much of it is consumed. Like, have you been to those sandwich places that give you enormous portions of loaf? That’s bread for four people!
        I marvel how on vacation, I ate mostly seafood, drank mostly rum, slept less, and felt fantastic. Seemed I was healthier than I had been in months.

        • I used to make challah. I didn’t realize it was high-gluten. So true re some sandwiches. We eat way too much “bread” as a rule. Nakana does have to go on a hypoallergenic diet, but i learned something. Cat food that is hypoallergenic is made so that it takes the protein down to the basics and no longer has the “meat” in it that they are allergic, too. So there is no actual meat in hypoallergenic cat food. Strange. Why don’t they do that for human food?

          • Hm, so interesting. I do not know.
            I think it’s more bizarre that cats are allergic to meat, but then were she wild, maybe she wouldn’t be allergic to mice and bird, hehe! Still, I think it’s about what’s in our meat. *sigh* I hope Nakana’s meals agree with her 🙂

            • We will see if it helps. I just got it so will start it tomorrow morning. I suspect she isn’t allergic to rabbit, duck, or lizard, but maybe just to chicken or turkey or something. But maybe it is something else. After all, veterinary medicine is not all that advanced IMO.

      • I watched a show about bread in the 19th century–they used to add plaster of Paris!!!

        There are a few start up farmers growing the “old” wheat but they better stay quiet and local before Monsanto comes to sue them. A gluten free friend went to an Eastern country where they still use the old stuff and was able to eat the breads there.

        PS–when my husband went from blood pressure so high they wanted to hospitalize him to perfectly normal blood pressure a month after giving up gluten (and nothing else) I became a believer (his doctor was skeptical).

        • OK, I officially feel like throwing up. Plaster of Paris? Are you kidding me?! How could people eat that?! Oh, I am not surprised about the gluten and BP. But very dramatic result, he had, and that’s great. Your GF friend–is he/she gluten intolerant or allergic or celiac? Do you know?

          • My husband got allergy tested and he’s not allergic, but everything from aching joints to blood-pressure improved dramatically with no gluten. he used to have shortness of breath as well which went away.

            BUt it is a pain when going out.

  3. What a miserable experience for you two! Many people go gluten-free when they don’t really need to, but I imagine for those like your husband who have the disease, it’s an everyday, food-always-on-my-mind kind of thing. How frustrating it must be to have to divert your energy to that while traveling. With as common as celiac disease and gluten intolerance are, it doesn’t appear the food industry has jumped on the bandwagon as much as we thought they did. Let’s hope that will change in the future.

    • The people who don’t need to go gluten free have made things better and worse for celiacs. It’s better because there is so much more awareness that there is such a problem and so much more food available. Also, more food that was always gluten free is now marked so that you can tell that it is safe to eat. But many people don’t take it seriously when you ask for GF because they assume you’re a jerk who wants to make a server’s life harder. The restaurants really need to step up. In particularly, the fast food restaurants need to step up as they have not AT ALL. Chipotle is pretty good, but it’s so embarrassing as they change out utensils, etc. while there is a line behind one. So we only go there a couple hours ahead of a meal and save the food for later or eat “dunch” (or is it linner?).

      • Sounds very challenging for sure.

        We tend to eat dunch or linner quite often when we go out to eat! We don’t like waiting to be seated so we go early. Or late, depending on which meal we’re talking about. 🙂

  4. I can sympathize on a tiny scale as travel is a challenge for me, too, living with an irritable bowel, a temperamental thing that goes off like a bomb for no reason. And I understand that people just don’t get how the smallest thing can set you off. It definitely takes the fun out of travel when you’re afraid to eat or can’t find something you can tolerate.

    • Oh Sue, yes, I’m sure it must be awful. Crohn’s, colitis, IBS, all those make it almost impossible to travel. Have you tried gluten free for the IBS? I’ve heard it helps for some people. I’m so sorry that you have travel problems!!

      • My travel problems are minuscule compared to your husband’s. I tend to travel to familiar places. Fortunately my family lives in wonderful to visit locations across Canada and they are tolerant of my intolerant gut. I haven’t given gluten free a serious try for the reasons you describe – it’s everywhere.

  5. So sorry your husband and you had such a difficult time on what should have been a vacation. I never thought about having to have your own toaster for gluten free bread!

    I’m reading this after you commented on my post, so I’ll just add–I hope you had a good book to read during your trip! ; )

    • You can’t imagine how many $12 toasters we’ve ending up buying! That’s because it’s kind of hard to pack them sometimes and it’s just not always worth it. We had to leave ours behind in Seattle, but we gave it and the humidifier to our hotel maid. Both items still had the boxes and paperwork :). Really bemoaning that $50 humidifier though. Grr.
      I was reading the Louise Penny mystery books. Fun!!

  6. Luanne, I’m so sorry for both of you. This whole gluten-free trend has made things much worse for people with celiac disease. Very few people are even aware of what celiac disease is or how easily food can be contaminated in kitchens. The gluten craze has given every restauranteur the impression they can claim ‘gluten-free when kitchen staff aren’t trained and kitchen not set up to keep prep areas separate.

    Traveling as you described is a nightmare, as is daily life when eating with co-workers or socializing over meals is required. Your whole world (and your spouse’s become centered around food and ordering is a total nightmare of specificity and special request, all the while fearing the end result is sickness despite all your precautions.

    I hope writing this helped get out some of your frustration because I know you know nothing is going to change in the near future, especially in restaurants where you have little control or certainty. I must admit your Niles Craine mention made me laugh out loud. During my ‘food-sick’ years, that’s exactly how I felt about myself! I mostly got over my ailment, and my cousin has lived with celiac disease for years, and has been healthy the last decade. Perhaps aging hormones put less stress on immune system? One can hope for both your sakes!

    • Many people tend to roll their eyes about the gluten free. They don’t realize how bad it can be for those with celiac. Has your cousin had it since childhood or was it diagnosed later in life? I’m so glad you “mostly” got over your ailment!!! Haha, so you remember that Niles, too? The machines he had to have going for sleep. 😉

      • My cousin probably had celiac fir years prior to diagnosis (thinking how thin he always was) but he was an adult when diagnosed – most likely because I think there wasn’t a reliable test before that.

        I really hate how trendy the gluten-free has become. It’s nonsense for all but those like your hub who have the real disease. And it makes his very real issues lost in the noise of fad foods.

  7. It sounds pretty frustrating, Luanne. For both of you.

    Have you tried renting a house somewhere lovely where you can prepare your own meals? We’re in Maine now, by the sea. Being here and preparing our own meals is cheaper (although we do eat out too). And then if I feel awful, my husband can let me rest comfortably and can go and do something he enjoys solo.

    • Oh, Elyse, that sounds so wonderful!!! Maine is a long-standing joke between hubby and me. I have been saying for years I want to live there in the summer and he’s always bringing it up to annoy me ;). Yes, we like to rent a condo for just that reason, but haven’t been able to do much of that in a few years. We will again, though, We are going to plan ahead for next year! Maybe Louisiana and the Florida panhandle.

  8. Oh Luanne, I read all of this and feel so, so much for your utter frustration and so sorry for all you and hubby had to contend with on your vacation.
    I do love the point you make though about this ‘inspiration’ thing…talk about pressure when we just sometimes want to yell out ‘it sucks and I’m royally pissed off at the moment, okay?’……..
    I’ve never read anything remotely as honest or as raw as your post and the realities of life for someone with celiac disease. How awful that it took so long for hubby to get his proper diagnosis (5 endoscopes? Yowzser…) And I am shocked that baked potatoes are hardly served anymore over there. My memory of eating out in the States is that they were standard fare. They are popular here but as lunch dishes mostly (and called jacket potatoes, although I still call them baked!) and filled with toppings such as baked beans and cheese, prawns and tuna (not all together, thankfully…!). But seriously, what an absolute nightmare for you and hubby when travelling. I honestly had no idea, so I thank you for educating us about the truth of celiac disease and also exploding this myth of ‘gluten-free’ foods. It’s the same over here, and I have often thought that there is a lot of ‘jumping on the band wagon’ but for those who really suffer, like your hubby (and yes, for you too as you also live with the consequences) it is a very different kettle of fish altogether. Putting it mildly. xoxoxo

    • I think daughter’s BF said that in England “they” (he’s British) do eat tuna and baked beans in baked potatoes all together LOL. I wondered if there is a lot of gluten free food available in England. I found Canada to be similar (as you might expect) to the United States in what is available–in terms of restaurants and bakeries. I didn’t shop in an actual supermarket in Canada, so I am not sure about that. While I was hunting for hubby’s gluten free food, though, I did find a wine I liked, and that helped to make up for some of the ordeal. (Hubby can’t drink wine because his GI system is too sensitive from the celiac, alas, but he can drink one gluten free beer or one vodka drink). Anyway, and yes, this is a ridiculous tangent, the wine was in a box. I’d never tried boxed wine that I can recall, but this one actually tasted better than the house wine at most restaurants. Much better. So a small bright spot 😉 Come back to WP soon, Sherri! xoxox

      • LOL! Yes, ’tis true!! Although not me, I like cheese on my baked potato 🙂 Oh I’m so glad you got that boxed wine, definitely a bright spot that! It’s always a good thing to find that one thing that takes the edge off on a vacation 😉 Take care Luanne and I’ll be back as soon as I can. I’m going to miss you! Give Nakana a big cuddle for me in the meantime 🙂 xoxox

        • Well, Sherri, I admit that I like cheese on EVERYTHING. I hope all goes wonderfully well for you!!! I will cuddle Nakana, for sure!!! xoxoxo

          • LOL 😀 Me too!! Thank you so much…and I hope for you too, very much so 🙂 Ahh…purry cuddles. My little bunny snuggled in to me last night on the sofa (did I tell you we now also have a bunny, Nate Bunnykins as I call him? I wanted to get a post out about him before I signed off blogging, but will save it for when I return!) He lops after the cats, they nose kiss … so cute…and then they run away from him!! Cuddles all around, we love our furry babies don’t we? Take care Luanne, I’ll be in touch… hugs…xoxoxoxox

  9. I’m intolerant, Luanne so I don’t get the severe symptoms and am able to control it quite well. But celiac disease is a hideous thing and (even with my minor aliment) I know travelling can be a nightmare. I’ve done some research into the intolerance side of things and found that looking into our ancestry can go a long way to helping (bear with me because it’s quite interesting). My ancestors are British/Scottish/\Welsh. The grains they ate were buckwheat, corn, maize etc. The wheat we now have in Australia is durum (have a look at the wheat you eat and see if this is it). Durum wheat (which is a hideous thing) originated in the Near East and those whose ancestors are from this area are not intolerant (apparently). The intolerance comes from introducing a new food into the system that has never been ingested by our ancestors. Over time this intolerance builds up until finally our bodies hit the wall. I guess this is similar to Europeans introducing alcohol such as beer, wine and spirits to native populations when they reach their shores. They are intolerant to the alcohol and it causes massive problems for those societies.
    It’s actually a really interesting exercise to look way back into the family history and find out what was grown around the area at that time. I don’t believe this will ‘cure’ anything but it gives us a far better idea of why these modern disease exist and how we may be able to gain some control over them.
    Sorry I’ve rambled on here. This is a great post and has opened a lot of thought and conversation xxx

    • Dianne, do you stay completely gluten free? Can you tell if you’ve been glutened? Or is it that if you keep mainly gluten free you feel a lot better?
      This is what I found on Wikipedia for the types of flour consumed in the United States. It seems that mostly it’s “winter wheat.” I wonder where that comes from. I will have to do more research. They have increased the protein in it so dramatically, that I’m sure that is what is causing so much of the problem. Celiac did not run in hubby’s family.
      Hard red winter wheat (HRW) with 40% production, the flour variety reported from the plains which extends from Texas north through Montana.[17][18]
      Hard red spring (HRS) wheat (also has a sub-classification of Dark Northern Spring Wheat[15]) of high protein value, about 20% production preferred for making bread is from the states of North Dakota, Montana, Minnesota, and South Dakota.[17][18]
      Soft red winter (SRW) wheat with an average production of 20% raised in the states of Washington, Oregon, Idaho, Michigan, and New York, the flour from this wheat is used in making cakes, cookies, and crackers.[17][18]
      White wheat, which accounts for an average of 12.5% production in the states of Washington, Oregon, Idaho, Michigan, and New York with its flour used in making products of noodle, crackers, cereals, and white-crusted breads.[17][18]
      Durum wheat, the preferred variety for making pasta; grown mostly in the states of North Dakota and Montana to an average production level of 4%. The byproducts resulting from milling of all the above varieties is used to feed animals.[13][17]

      • Wow – you’ve looked into this very well, Luanne. It would be very interesting to see where that winter wheat originated.
        I know when I’ve eaten something with durum wheat because I immediately start to sneeze, then I feel bloated. I lived on this wheat all my life and never had a problem until I was about 35 – this is when my body must have reached it’s limit and said, ‘no more!’ I thought I had hay fever (and often looked pregnant when I wasn’t) for about 12 months and then a woman I worked with told me to stop eating anything with wheat in it and my problems ceased within about two days. That’s when I decided to look into the ancestry aspect (also the woman’s idea) and I found it incredibly fascinating.

  10. This sounds like a complete nightmare Luanne, a real barrier to travel that means it sounds much easier to stay at home – which is neither always possible, nor something that makes for a full life. I have the good fortune not to have to think about it, but in these times when we have so much choice available to us, you’d think that things would be better.

    • Yeah, it’s sucking a lot of the fun out of life. We’re not real sporty people so we don’t have that rely on. We like to EAT. But not this way.

  11. I was terribly sick for years, no doctor could give me an answer and I felt like I’d tried everything until a chiropractor casually suggested I try giving up wheat for awhile. I ended up just going no-gluten since that’s how things are labeled and it’s what others respond to best (I also just say ‘yes’ when a restaurant asks if I’m allergic to gluten even though that’s not really the case, because who wants to get into it with the waiter? Not me). It was truly a lifesaver for me. Fortunately, though, i do not have to be as careful as your husband does. As long as I do my best to avoid gluten, I don’t have to worry about cross-contamination and all that stuff, so I can always find something to eat. But still, it can be a pain at times. And there are a LOT of foods I miss, too. But at least I don’t have a severe case (I never bothered to get tested for celiac, because you have to be consuming gluten when you get the test and I just said ‘hell no’ to that!)

    • Well, let me tell you something strange. That is what hubby’s GI dr said too when she swore up and down he just needed a shrink. She said, “Now that he isn’t eating gluten celiac wouldn’t show up in the endoscopy results anyway.” I said, “Just humor him. Do the endoscopy. Then he’ll do what you say.” So she did the (5th, but not all 5 by her) endoscopy and LO AND BEHOLD he had really bad celiac. She apologized all over the place. But he was NOT consuming gluten when he got those test results. Because he had gotten that sick by then.
      Anyway, I’m glad you feel so much better!!!

  12. Hi Luanne. I wish that our food was pure so that you and your husband could enjoy a worry-free vacation. It sounded terrible–how you had to hunt for restaurants with food he could eat. I thought it was tough having a husband who is a vegetarian. 🙂 That’s easy in comparison!

    • Oh, I am sure that is hard enough, though, if you are not a vegetarian!!! But at least the meat usually can’t hide like the gluten haha. Patti, we will plan better for next year (I hope), and try to find a condo where we can cook.

  13. You made the difficulties so very imaginable. Hunting for something acceptable, the time ticking away—plus, it’s hard for me to even think straight when I get hungry. I’ve never asked my niece about travel—she was diagnosed with celiac disease when she was in college. All my sister could think about was how the poor thing had colic as a baby and the instructions had been to feed her Cream of Wheat, which made her scream even worse . . . I’m glad y’all are back home where you can control the food better.

    • That made me physically sick to read she was being told to feed her baby Cream of Wheat. Of course, they often didn’t know these things. But still Cream of Rice has always made more sense than wheat because celiac has been around for decades and decades. There is more of it now because the wheat and food has changed, but it’s not new. I gave hubby gf chicken pot pie last two nights in a row (that I made) and he hasn’t been sick at all. So refreshing. I told him he needs to take up cooking again . . . .

  14. This was an eye-opening post, Luanne. I am so sad for all of this horrible way of living in a society that we don’t adapt to individuals who need special diets. It is too bad restaurants think half-_ssed service and adaptibility is good enough.
    I am glad you took the time to write this as Felicia has had RA since it was JRA, while younger. She gives up things hoping her joints won’t hurt so much. Some of this may help her, too.
    Luanne, your husband’s working out many hours a week, really would use up a lot of calories. Is this to keep his joints and body strong to fight the Celiac’s?
    F. has given up milk and dairy, along with gluten. She drinks wine, has your husband found this to be hard on his system? I will keep hoping the public and businesses will continue to be more aware. Take care and Rest up! 🙂

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