Gluten-Free Living Is No Cakewalk

I feel you. I was diagnosed with celiac during my second pregnancy and ended up having a stillbirth at 6 months. I hate celiac! The thing I hate most is getting really sick from hidden gluten. I also am a foodie, so I hate that I can't go to restaurants to find new food...that is a bummer. But I have pretty much made it my life goal to learn to make a GF version of all my favorites. Still not as good as eating out, but I will take what I can get.

I am gluten intolerant and it isn't fun at all.  I have to make my family a meal and then myself a separate meal most times.  I usually don't have much time to prepare two meals when I get off so I usually end up eating healthy snacks for dinner.  It is also hard to explain to others why you don't eat certain things.

Thanks for the article!

I don't have celiac, but I am gluten sensitive. So I've cut it out of my diet, but I also don't really stress if some random ingredient in something I eat outside my house has gluten in it. If I had celiac, I would definitely be stressing more. :( Sorry you have to deal with this just in the sense that I know I just want to be able to EAT and not worry. My son has a genetic disorder that affects his diet significantly (Prader-Willi syndrome), so I'm used to worrying about food. :( 

I was diagnosed with coeliac during my second pregnancy.  I don't know what prompted me to have the biopsy while pregnant but I was afraid my 18 month old daughter would inherit it, as well as my baby, so I just wanted to know.  (It helped that I had just found out that you can get certain GF foods reimbursed if you're coeliac in France).

Anyway, the doctor confirmed it but also said it was a "weak case" - the intestine was not that irritated.  And it's true I don't suffer any effects of cross contamination that I am aware of.  Therefore I eat at restaurants or at other people, and as long as I avoid the obvious things it seems to be ok.

But it isn't easy.  There are not as many choices here in France as there are in the States.  I end up bringing GF desserts everywhere I go when it's potluck.  Those are the hardest ones to find.  Most of my friends think they taste better than the gluten version, especially the brownies, because they tend to be more moist.

Anyway, this is totally an aside but I have a mostly French-inspired recipe page on my blog of all GF recipes if that interests you at all.  http://aladyinfrance.com/  I'm planning to split my blog so people can follow me or my recipes depending on which they prefer since I loooove to cook.  :-)

It sounds like you're doing great though.  At least you're healthy and symptom-free which is definitely a relief.

I was diagnosed as gluten intolerant six years ago. For the sake of simplicity I just say I'm celiac. I've never had a formal test. All I know is I was losing weight rapidly and felt really sick all the time but when I stopped eating gluten I stopped feeling ill and began gaining weight again. 

I used to be the sort of person who could eat anything they wanted. I had no intolerances or difficulties at all and my weight didn't really fluctuate. 

This diagnosis changed all that and for many reasons has been frustrating - the most frustrating being just what you said: People treat it like an annoyance. 

I love food. I'm a HUGE foodie. Food is my number one priority when it comes to my budget and my day to day life. I'm not picky and don't like to be seen as such so I go out of my way to educate people on just how easy it is to feed me. When I'm going out to a restaurant I give notice or check if there are gluten free options. I'm fortunate in that I live in London and there seems to be a great amount of awareness here. 

I think it's about being patient though. People don't know and I know that prior to my diagnosis I probably wasn't patient with people who had specific dietary needs. I wasn't patient because I didn't know any better. 

I like to think I do now. 

While I haven't been diagnosed with celiacs, I have found that gluten, dairy and oats contribute to the allergic reaction I was later told was actually an auto immune disease. The dermatologist prescribed an antibiotic but told me that it wasn't safe for me to remain on such high doses.  So, with the fear of "what will I do when I no longer have the antibiotics" I experimented with probiotics, enzymes, vitamins and other supplements to help ease the reaction when I mess up.  Through working backwards, I've had to figure out what foods are ticking time bombs and, you're right, eating out is the worse.

Thanks for posting, I needed advice as well.

I've been GF for 5 years.  Like the others, I feel your pain; we've all been there.  I found that it did get easier.  My friends stopped asking questions and got used to me bringing little tupperware containers of food with me everywhere.  I found a couple restaurants that are reliable and they know me now.  As more education becomes available, I think more people will be understanding.

http://lessonsfromtheendofamarriage.com

I've been wheat and gluten free for going on 5 years. I not only have celiacs, but I have developed a serious anaphylactic allergy. What does this mean? When I went to visit my mother, she flatly refused to cook for me, because she was terrified to make me sick. I haven't been to a dinner party in 5 years. When I'm traveling for work, I eat a lot of dry salads and Bumble Bars. ;-)

I completely hear you. Yay for not being sick (and hooray for all the new products/awareness), but it's really hard. For me, the biggest issues are traveling and then having to tell people that come over to our house for supper to *please* not bring food to share. Cross-contamination is just a huge challenge.

I can tell you that it gets easier. It took one trip to Daddy's where I got sick and he completely revamped how he deals with food when I come over. My best friend is the queen of Gluten Free Google and she and her husband are waiting to purchase the new pots and pans they wanted for Christmas until my trip in May, so that I'm safe there.

Best of luck. Shawn Anne

I've been gluten-free (intolerant; not celiac) for over a year now, and I would say it took a GOOD 8-10 months before I really felt like I had purged and healed my system from the damage. So give it time, educate yourself and plan ahead. I pretty much eat at home before I go anywhere, or pack something to take with me. The rest of the world lives mostly in ignorance of it. Especially airports. Traveling is the hardest. I end up eating all my GF snack bars and fruit and being hungry and constipated most of the time. I tire of eating salads, especially in the winter, but it's worth it in the way I feel. Hang in there! It's a learning curve. You'll find your own rhythm soon!

I am gluten-free and dairy-free and intolerant to both- I feel your pain and that's why I started my blog, @TheHealthyApple www.TheHealthyApple.com to help people overcome their fears. I always scope out the nearest Whole Foods Market when I travel and stock my hotel fridge with fresh food. I also carry tons of food with me when I travel on plans and trains...as for day to day- I've always got a pack of snacks on me in case I can't find something that I can eat.

Keep up the great work; and stay positive.

It gets easier; I promise.

xo

I totally understand your eating-out concerns. I travel a lot for work and it is always challenging to find food to eat on the road, and especially in airports! I have been dealing with Celiac's for almost 5 years now. It gets easier, but I still find I slip up occassionally :(

I have no issues with gluten, but I have significant food allergies and sensitivities. I'm allergic to soy. If you think going gluten free is hard, try finding foods without soy! :)

My suggestion to you is to look into some vegan restaurants. They're well known for also having gluten-free foods and are generally more likely to be sensitive to issues like that. Even though soy is a huge favourite in the vegan set, I've never set foot in a vegan restaurant that wasn't ready and able to accomodate me.

My gastro told me that I have a gluten intolerance, which really explained a lot about how I've been feeling.  Unfortuantely the diagnosis came with a vague "avoid foods with gluten" and no explanation as to why I should.  So I've continued my normal eating habits (and feeling sick) and can't get myself to break the habit.  So glad I found you on BlogHer!

I consider myself Gluten Intolerant... mostly because I won't go through the trouble to do tests that are going to tell me what I have come to find out, my life is better gluten free.  It was suggested by a healthcare professional that I try it this past July.  I haven't looked back.  I have been glutened twice since then.  Both times at restaurants, I thought I was making good choices, but no such luck.  The first time I had a stomach ache for weeks, the second time I got that after being violently ill the morning after the meal.

For the most part now I cook and bake at home and pack things to take on trips.  I have managed to eat out a few other times and been ok.  PF Chang's is an excellent resource!  When I make the two-plus hour drive to the big Town, there is also a dedicated GF bakery and deli that I love going to.  It is so nice to be able to order anything there that looks appealing and not worry about getting sick afterwards.

Recently I went to a party at a friend's, and ate only two of the items that were laid out.  I know he was kind of hurt since he loves cooking and baking for people, but I told him that was all I could eat.  Some people get it, some don't.  I have a friend who is also gluten intolerant and she tries to not eat as much gluten.  She still feels ill.  Wonder why?

Isn't it funny how our dreams work.  I had an ongoing one for several months about eating a bagel.  At some point in the dream I would realize it had gluten in it, nearly have a panic attack because I knew how sick I was going to be and there wasn't a way to keep it from happening once I'd had a bite.

Giving up the stuff that made me feel bad was a piece of cake.  Feeling like the oddball and having to be ever vigilant with what I buy and eat is a challenge.  Definitely worth it, but I'm not ever sure life will ever feel the same that it once did.

My son has a peanut allergy, so I can really empathize. I once had a dream that we were at a school party and people kept trying to give him peanut butter even though I was telling them not to again and again, and then as the dream progressed I somehow got some peanut butter on my hands and no matter how hard I tried it wouldn't wash off. So you're not the only one literally having nightmares about food! I agree that the social issues associated with needing to avoid a certain food are the worst part. At home we're peanut-free and it's work finding only safe foods, but once we got used to it it was not a big deal. But every time we go to a party or a restaurant (there are only a few of those we even try to go to) it's so, so stressful. Even playdates with families we trust can incredibly difficult to manage. And school events involving parent volunteers and food are minefields -- I volunteer at every single one without fail, even if I have to skip work, just so I can watch the other parents, because unfortunately not all of them take his allergy seriously, and more than once I've caught other parents trying to give him things they've already been told he can't have; in fact, once I found another mom ARGUING with him after he'd told her he couldn't have a certain kind of ice cream! Guess who was right? The seven-year-old. But even after I told her he was right to refuse it she was annoyed with him and with me -- she thought he was being rude by saying "No thank you" to the food she had brought. I wish more people understood that people with serious food allergies and / or celiac -- and their family members who look out for them -- really, really DON'T want to be an inconvenience. We would love to be able to say yes to more kinds of food! We would love to go to parties and restaurants without asking for a list of ingredients. We would love to just enjoy ourselves at social events instead of dealing with drama over food.  

I have Crohn's disease, Celiac, and multiple food intolerances. Basically eating makes me sick. It is very awkward in a social setting. I sometimes think it's harder around friends than strangers because my friends try to accommodate me but they just can't and then I feel bad for them! The suggestion to ask if you can bring your own food is a great one. That's what I do most of the time. I also am very picky about the restaurants I eat at. There are a few I trust. But it's tough.

Anger will come in waves. I found I was pretty accepting for the most part until about a year after I was diagnosed with Celiac and was having diner with family at a restaurant. I had found food I could eat but was really hurt when everyone decided to order a couple slices of cake to share. As they ate it in front of me, they kept saying things like "I'm so sorry you can't eat this" and "That must really suck". Yes, actually it does suck to sit here and watch you eat cake in front of me while I pretend that it doesn't bother me and it's ok. I was very angry. But other times, it really doesn't bother me. I think, "Well, I'll never be fat!".

Good luck. It's tough at times but improved health is totally worth the sacrifice.

It is hard, I'm actually allergic to wheat so everyone assumes when I pass on wheat related products that I have celiac disease. When I participate in a pot luck I always make something that I know that I can eat and is available to everyone else. I just am then sure I have something to eat. I work as a medical secretary and we often have lunches form the pharmaceutical reps, I always take my lunch as all to often it is Italian (all pasta dishes) or something similar. I think what I miss most is REAL bread, I have found some gluten free that are close but still not the same. But we can make it work, there are more we sites and FB pages devoted to gluten free living.

I would suggest that when dining at a friend's house, ask if they would mind if you brought your own food. Explain that you wish you could enjoy their cooking but cross contamination is nearly impossible to avoid and you wouldn't want her to have to go to all that effort and cleaning it requires, just for you.

Restaurants on the other hand, are virtually impossible. The cross contamination is impossible to avoid and none of them are prepared to put the effort into it to make food safe for celiacs. The gluten-free menus are effective for those who are gluten-intolerant or those who are avoiding gluten.

In the case of celiac, the gluten in a restaurant gets into everything (imagine the pastry chef baking a cake, the flour flies everywhere). Most of the celiacs that I know go to restaurants for the company rather than the food. They order a salad or something else that is kept in a cooler and served cold to minimize the likelihood of cross contamination as much as possible. You can also try to find a gluten-free restaurant. We have one in our town and there is no danger of cross-contamination since everything in the building is gluten-free. I hope this helps.

Excellent post. My son, who is two, was diagnosed with Celiac Disease last winter. I have not eaten any gluten since he was diagnosed {and surprise, I feel better as well.}. It is a long and hard road. The Gluten Free Dude gave us similar wishes -- and he's right -- it's a battle of strength, determination,and constantly reminding oneself of what it was like prior to diagnosis.

Even now, as I type this, I can hear him talking in the kitchen to his dad about bread and asking if it's "gwooten -fwee" -- at two he already understands the need to eat gluten free. But, it's frustrating. Two days ago I was out to eat at a huge restaurant and asked for their gluten free menu. Four items. All over priced. All without seasoning. I started asking the servers to check on other items for me -- and I felt as if they were frustrated about the need to know about gluten. It's almost impossible for me to take my son out to eat -- the risk of cross-contamination is too great.

Long comment, but THANK YOU for this post and for getting AWARENESS out. Part of my mission since my Samuel was diagnosed is to spread awareness about Celiac Disease.

Rachel

{and, yep that was me with the facebook comment as well.}