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Celiacs, how do you deal with it?



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  • Celiacs, how do you deal with it?

    I'm tired of not being able to trust ANYONE with my food. I have to prepare everything I eat (unless it comes from a box or bag that says gluten free on it). Last night another "celiac" (don't consider her a trusted source anymore) told me the salmon at a party was safe. Turns out the host (non-celiac) had made it and used some teriyaki on it (not the other celiac like I first thought). Heartburn and bloating today and for the next month thanks to two bites of salmon.

    It's isolating and depressing. I can't even trust other celiacs because some of them aren't as careful. I'm very sensitive to gluten. There are only a couple safe restaurants in the area I trust, and even then I don't go too often and push my luck.

    The worst part is that my SO doesn't understand and wants to go to Hawaii for two weeks next winter. I lived in Honolulu for 3 months and it's a horrible place to be gluten free (soy sauce everywhere), but he doesn't seem to listen to my concerns. I want to travel without being sick and I can't eat larabars for two weeks. The stress of dealing with the food makes it completely unenjoyable. Hopefully there are other celiacs on the forum that can help me deal with these issues because I'm out of ideas and motivation. I'm trying to finish grad school and work two part time jobs and deal with this BS. One of the jobs finishes up in May and it can't come soon enough.

  • #2
    I have celiac too and I don't trust any restaurants or anyone else to cook my food, except my Mum. I'm lucky enough to have a very supportive boyfriend, though.


    • #3
      The only friend I have that I can trust is celiac and a nurse (not the same one that told me the salmon was ok). She realizes I'm more sensitive than she is and will tell me if something has been around gluten. Otherwise I'm on my own and it's getting frustrating.


      • #4
        It can be very awkward visiting people. Even though they mean well, they can end up poisoning you with something they fixed just for you. My relatives are getting better about their understanding, but it's been a long haul. My sister is pretty good now. My brother-in-law will fix nothing that is gluten-free when it's his turn to cook.

        When I travel I usually seek out grocery stores. It is good to verify in advance whether your room has a refrigerator or microwave. I have a Japanese rice cooker I can use to cook meat and vegetables. When I was in Toronto I stayed across from a Korean grocery store that sold ready-to-cook (pre-cut, sliced, and shredded) vegetables, seafood, meat, mushrooms, etc. It was wonderful.

        The last day I had to check out of my room before lunch. I ended up eating a "gluten-free pizza" that not only was totally tasteless (I miss my own cooking when I'm on the road), but had so much xanthan gum I had to make an emergency rest stop on the NY Thruway at 3:00 in the morning. Clearly I should have tried harder to look for a steak and salad.


        • #5
          I am so sorry that your SO is not as supportive as you need. My daughter is part of the celiac crowd too, just not as sensitive as you, but has to avoid dairy as well.

          We haven't done this ourselves, because my DD gets incredible support from her family, but have you considered joining a celiac support group?? There is one operating out of our favorite health food store - check there first. You might be able to get in on some truly gluten-free shared dinners that way.

          And yeah, we do make almost all her food here at home, so I get it. And it is tiring. Hugs!
          I have a mantra that I have spouted for years... "If I eat right, I feel right. If I feel right, I exercise right. If I exercise right, I think right. If I think right, I eat right..." Phil-SC


          • #6
            First of all I think you need to kick your SO in the ass (and keep kicking) until he understands that this isn't just about some digestive upset and bloating, continuing exposure could lead to AI disorders and ultimately cancer. It's really important that you not ingest gluten and his cavalier attitude is incredibly disrespectful. If you can get that through his head then he needs to get on board as your partner in this. As for going to Hawaii, I've never been so I don't know what the challenges there are, but I don't think that you should be as stressed about it as you are as long as he's willing to be understanding and help. You get to research and choose the hotel. As has been mentioned, make sure there is a fridge in the room. I would also make sure it has a microwave. Even better, see if you can find a suite with a kitchen. Also, a supermarket within a short distance is very important. I would invest in a small/portable egg cooker and take it with you. Not only great for breakfast but you can take boiled eggs along as a snack easily enough. Research restaurants nearby that are celiac aware so you don't have to worry about being glutened. Call the hotel in advance and let them know of your concerns.

            I also have a severe intolerance to corn which is even harder to avoid than gluten, making traveling and dining out nightmarish. I've just come to accept that there will be times I won't be able to partake and plan ahead. Eat before I go to a party, only go to restaurants that I know are capable of keeping gluten out of my food. If I order salad I only get olive oil and vinegar or fresh lemon slices. Etc. It's my reality and stressing about it won't change it.
            Buy house, Demolish house, Build house.


            • #7
              He seems to think his seafood allergy is more important than my celiac. It's infuriating.

              Maybe I'll try a couple weekend trips over the summer and see if I can deal with that before we commit to Hawaii. My last couple of trips made me sick because he wants to be spontaneous and I can't be. He doesn't realize that celiac is much harder to deal with than a seafood allergy because gluten is in everything and hidden in so many things. Other than oyster sauce there's not really any way to have hidden shellfish.


              • #8
                I am celiac and I eat out frequently. But, I have a reliable phlegm response that serves as a near instant warning so I can stop immediately, with only a few hours of discomfort. Also, I don't seem to be as sensitive as some others. That said, my tips are
                1) seek out good restaurants -- no cheapos, no fast food, no pizza no matter what they say!
                2) grilled meat, no sauce + sauteed vegetables in butter is the best go-to order. Bring your own sauce or tamari or ask for extra butter. Any decent shop will be able to grill meat and sautee veg. Baked potato is another safe choice.
                3) stress to the server that you have a medical allergy and double-check with the kitchen to use a clean pan. If the server seems unfamiliar with the word gluten, ask for the chef or manager.
                4) if they can't accomodate or you don't feel confident, it's ok to (politely) leave. Your health is the most important.
                5) start the meal slowly ... If you react it's better to know early.

                I still do get glutened occassionally, but these steps do help. I also am comfortable fasting for up to 36 hours ... Handy since I refuse to eat in an airport or on an airplane.


                • #9
                  Honestly? I'm getting some red flags here. The fact that he's putting his desires before your needs is cause for concern. Knowing this, I wouldn't go on any trip with him anywhere until I felt completely safe in knowing that I wouldn't be guilted into putting my health at risk so he could have fun. In a healthy relationship both parties look out for the health and happiness of the other. I'm assuming that by you calling him your SO and not husband you aren't married? If he's someone you think you might consider spending the rest of your life with then it's important to know if you can get past this now, while it's manageable and not a lifelong pattern. He's being selfish and immature.
                  Buy house, Demolish house, Build house.


                  • #10
                    I have it too, so remember that when I say this:

                    If your SO goes into anaphylaxis when he is exposed to seafood, it is more serious. It isn't as common as gluten, that's true. But it could end in death for him. Even with an epipen, even with quick emergency care. He could die. You and I aren't going to die within minutes if we eat a dozen doughnuts.

                    I feel your pain. I have a couple people I trust and a couple restaurants I can enjoy. It sucks. Sucks, sucks, sucks. And I have refractory celiac, so no matter how careful I am, I will never fully heal.

                    I would go. Sushi is GF if you take your own soy sauce. I whip it out and if someone gives me an eyebrow, they either get the stinkeye or a big smile depending on my mood. Maybe check out GF dining in the area.

                    As far as the SO-you will never find someone who is 100%. Food issues would be pretty difficult to overcome. Maybe a dealbreaker
                    Sorry for your troubles. It does suck. (See above). But it is the only option.


                    • #11
                      I should make him go get an epi-pen before I agree to go to Hawaii. So far he's refused to bother with it since his reaction is only slightly worse than my reaction to gluten. We have a shellfish free house (except for me having canned clam chowder two or three times a year), but he refuses to go gluten free or even contain gluten to a small part of the kitchen. He won't cook with gluten flour, and that's all I can get from him. That might go out the window since his mother sent him an auntie anne's at home pretzel kit. A dietitian should know better than to send wheat flour to a house with a celiac. Hopefully I can get him to make it at a friend's house

                      I'm just frustrated at this point because I'm learning I can't even trust other "celiacs" since most of them don't take it very seriously. I'm trained in sterile procedure and that's pretty much how I have to prepare all my food to make sure it's safe (starting with wiping down the counters since I can't trust the SO to keep his gluten contained). Maybe I should just buy canned soup and live off of that for the next couple months until I have free time and am feeling better.


                      • #12
                        Originally posted by momrn View Post
                        I would go. Sushi is GF if you take your own soy sauce. I whip it out and if someone gives me an eyebrow, they either get the stinkeye or a big smile depending on my mood. Maybe check out GF dining in the area.
                        I would certainly go, too, but not let myself be talked into eating anything I was not 100% comfortable with. Have a cup of tea while he eats, then have something safe in the room.

                        Sushi is NOT always GF. Some rice vinegars are not GF, and lots of "creative" sushi bars sneak in batter-fried or otherwise unsafe ingredients. Spicy mayo may not be GF. I just do sashimi and bring my own GF soy sauce.

                        Originally posted by notlupus View Post
                        Maybe I should just buy canned soup and live off of that for the next couple months until I have free time and am feeling better.
                        If I was feeling glutened and unsure about what's safe I would start by eating white rice and plain potatoes until I felt better. If you do eat canned soups, make sure they are marked gluten-free.


                        • #13
                          I learned the hard way that there is soy sauce in roe and eel, so it is not safe either. Then the obvious offenders like breaded things and imitation crab have to be avoided as well. I was so sad to learn that I couldn't have roe or eel.

                          I only buy progresso soup labeled gluten free. It's been my standby for when I'm too tired to deal with anything else, along with cinnamon chex but I'm trying to cut back on that (I'm not supposed to have much sugar or soy either).


                          • #14
                            Are you pretty newly diagnosed? It's pretty scary in the beginning, but gets better. I promise.

                            A fellow celiac advised me to go strictly with simply prepared meat and veggies (hello. Primal?) in the beginning. No gf replacements, no eating out, no dairy. It really helped me to feel better. It was HARD, but I did it.

                            Our house is gluten free. I'm the sole cook. I had no intention of having that crap around and I was (and am) an accomplished baker. Hardcore, but they did it. They could eat it out. They don't even do that now because it makes them feel bad.

                            I'm really sorry for you. You've got a lot to think about. A SO who wants to cover your kitchen with poison so he can eat something he could easily get elsewhere? Um, no. No.

                            Take care of yourself. You have the right to be safe in your home.


                            • #15
                              I've been diagnosed celiac for almost 7 years now, but recently learned I have to avoid yeast and mold as well. Trying to figure out the yeast and mold thing has been very stressful as sometimes I'll feel great and other times I'll feel like crap and have no idea why. I can't find any specific forums or resources because it's fairly rare to have to avoid them in food as well as the environment. Even the canned soup I buy has yeast in it, but sometimes I'm too tired to cook and eat it anyway. It's depressing to have so many foods I have to avoid (plus I'm supposed to be eating low sugar to avoid growing yeast in my gut, no soy because of the bad thyroid, and no shellfish because the SO is allergic). Sweet potatoes are too moldy for me about half the time, so I've given up on buying fresh and only buy frozen sweet potato fries now because I don't have to throw them out half the time.

                              I'm getting tired of eating salad, eggs, and meat. I'll try making some foods I like that the SO doesn't and see if the variety helps make it less depressing. It's been ages since I had curry chicken. The sad thing is that going gluten free wasn't that big of a deal for me. I replaced all my gluteny favorites with new and exciting stuff. Now I've tried most foods so there's nothing new and exciting left to add. Turnips were meh. Shirataki noodles are better than nothing but a downgrade from regular gluten free ones. Liver pate was disgusting. Lamb was ok, but not that different from beef. I'm having trouble finding something new to excite me, other than kerrygold cheese which I shouldn't have that much of anyway.