Going Gluten-FreeJune 29, 2011

True Confessions

Are there ever days when you want to whine about being on a special diet? Well, join the club!

Gluten free has been all the rage lately. With so many new products coming out and restaurants touting gluten-free menus, it seems like gluten free is everywhere. Yeah, okay. So does that mean that I’ll get better at looking away when my friend eats her Caesar salad with yummy croutons while I eat my lettuce and two slices of cucumber? Plain. No dressing. No croutons.

After I suffered a recent bout of severe cross contamination at a restaurant, the owner actually recommended that I order the turkey plain next time with nothing on it, just to be sure. Nothing on it? I might as well get a quarter pound of sliced Boar’s Head from the supermarket and eat at home.

It used to be that absolutely no one had ever heard of celiac disease. Now, only a third of the people I talk to look at me like I’m nuts when I mention my special diet.

“I can’t eat that because it has gluten in it.”

“What? Glue? There’s no glue in this.”

“No, glu-TEN. It’s a protein in wheat flour.”

“Oh, flour. She can’t have anything with flour.”

“No, I mean, yes. I can have flour--just different flour, made from things like rice and buckwheat.”

“Wheat. I thought you can’t have wheat?”

OY!!!

I know it’s easier to be gluten free now because there are so many gluten-free products available. But the truth is, living gluten free is sometimes anything but easy. Whether you’re 6 (like my daughter, who also has celiac disease) or 36 (like me), eating sans gluten in a gluten-filled world can feel like you’re going against nature. Sometimes I feel like the salmon swimming upstream. For my daughter, I drive 45 minutes to the nearest Whole Foods just to pay $8 for a package of breadcrumbs so I can make chicken fingers that look like the ones that Jenny’s mom will be sending in for lunch at school tomorrow.

On good days I say, wow, I’m so lucky I don’t have stomachaches anymore. (Well, at least when I eat at home.) And on not-so-good days, like when someone brings in Dunkin’ Donuts to work for everyone… Well, those are the not-so-good days.

I constantly ask my sister, a long-time celiac who happens to work at our family’s bagel store (Yes, that’s right. My family owns a bagel store. What with four celiacs in the family, this is the height of irony), “Don’t you miss eating gluten?”

My sister says, nope, you get used to it. Used to what? Never eating out again without worrying that a bomb will go off in my stomach? Never getting to choose between 50 kinds of cereal for breakfast? Never having a plain bagel, scooped and toasted, with tuna, lettuce and tomato?

I do not get a jealous twinge when the other teachers at school scarf down pretzels or pick at the coffee cake in the teacher’s lounge. And if you believe that, I’ve got a gluten-free restaurant I want to sell you. The truth is, that green monster pops up all throughout my day.

When the mothers standing by the cookie table notice me eyeing the food and ask, “Do you want some, Sharon?,” I have the perfect response. Actually, I have several responses that I practice at home: “No, thank you.” “It’s not gluten-free.” “I’m not hungry.” They work—except on those emotional days when my rational self is overpowered. Then it’s a shake of the head followed by a lump in my throat.

“No, thank you, damn it!” That’s what I’d like to say.

Heck, why do I sometimes still feel this way? Why do I still miss gluten? Sometimes I wonder, is it the actual gluten itself that I miss--or the freedom to eat whatever I want?

I guess it’s kind of both.

Well, at least now it’s getting easier. Because there are so many new products out there and more restaurants are offering gluten-free menus, right? Plain salad, anyone?

Do you ever feel this way?

Comments (24)

I am a foodie and LOVE to cook, so going G-free & dairy-free has really put a damper on things! I try to focus on what I can eat, not what I can't eat, but it sure is difficult. Just recently I attended a wedding and there was not one item on the buffet that I could eat. Luckily I've learned to eat before going anywhere and to also carry food in my purse so I don't go hungry. I'm thankful that restaurants are adding GF items to their menus, but it's so hard when everyone else is eating appetizers, breads, desserts and drinking cocktails....when I can only eat a plain salad with dressing I brought from home and an entree with no sauce or seasonings. Thank goodness wine is gluten-free! I don't know about everyone else, but I'm always still hungry after eating at restaurants. I go home and eat something or nibble on a snack I had in my purse on the drive home.

Yes it's hard but it sure beats having the major gastrointestinal problems that I had for 15 years before being diagnosed with gluten & casein intolerances.

Thanks for everyone's comments. It's nice to know I'm not alone in this madness!

Posted by: LYNNE H | August 21, 2011 10:10 PM    Report this comment

I am a foodie and LOVE to cook, so going G-free & dairy-free has really put a damper on things! I try to focus on what I can eat, not what I can't eat, but it sure is difficult. Just recently I attended a wedding and there was not one item on the buffet that I could eat. Luckily I've learned to eat before going anywhere and to also carry food in my purse so I don't go hungry. I'm thankful that restaurants are adding GF items to their menus, but it's so hard when everyone else is eating appetizers, breads, desserts and drinking cocktails....when I can only eat a plain salad with dressing I brought from home and an entree with no sauce or seasonings. Thank goodness wine is gluten-free! I don't know about everyone else, but I'm always still hungry after eating at restaurants. I go home and eat something or nibble on a snack I had in my purse on the drive home.

Yes it's hard but it sure beats having the major gastrointestinal problems that I had for 15 years before being diagnosed with gluten & casein intolerances.

Thanks for everyone's comments. It's nice to know I'm not alone in this madness!

Posted by: LYNNE H | August 21, 2011 10:10 PM    Report this comment

I am gluten free, dairy free, sugar free, cocoa free and free of all preservatives including artifical colors/flavors. I can have carob powder in place of the cocoa and I sleep better too. Sometimes it bothers me, but mostly when I get together with my side of the family, they always complain and laugh "Oh I wonder what she brought this time or don't eat that you know who brought it". When I do not eat any of the above, then I am migraine free and after having these migraines since 1999 for 24 hours a day, every day of the week. It feels amazing. All my co-workers or my husbands relatives will apologize because they do not have anything for me to eat; I say it is not your fault and I always remember to bring my own food and also to bring some to share. Sometimes they like it and sometimes they don't. I made Bean Brownies and they freaked out. Some tried it, some made faces at it. Oh well! Coconut Palm Sugar tastes great for me, but for other people not so good. I found this recipe for Banana chocolate frozen pie, the very first time since 2005 that I was eating chocolate ice cream and no one else liked it, they said it was not sweet enough, thought I was in heaven and I ate all of it. It had Ripe Bananas, Carob Powder, coconut milk and I added nuts or seeds to it and froze it for a few hours. Amazing. Today I took it to work, it was thawed out and it still tastes great. You have to do what makes you feel good! Lot more products out there now then there was in 2005 when I figured out I need to be Gluten and Preservative free, 2009 Dairy Free, 2010 Sugar Free.

Posted by: MARY J F | July 20, 2011 1:15 PM    Report this comment

I used to feel like an alien on my own planet. Born allergic to milk, later being diagnosed hypoglycemic, gluten and many other little things were added along the way. As my food sensitivities grew I stopped being included in food related social events. "Well, what CAN you eat?" I stopped taking it personally when people questioned me, I got into the habit of carrying my own food to work and eating a 'safe' snack before I go out to social events that may cause me temptation. Food is about what your body needs first and foremost and every body is different. Things are much easier and getting better, food allergies are common. I'm much healthier, I have more energy and am quicker-thinking than my counterparts. When eating out I scan a menu and eliminate what is obviously not a choice for me, I avoid restaurants that only offer wheat and dairy, example: Italian. "I eat Italian at home all the time, can we think of something else?" I don't let it become an issue, I stopped resenting it and that in itself brings better health. It's not about what you can't eat, it's that what we eat is BETTER. I've become an informer and now even a trailblazer. I am an organic chef and I specialize in food restricted diets. My website: www.good2eat4U.com includes recipes and cooking tips that are all gluten/dairy/sugar free with suggested options, OH and the membership is free too.

Posted by: ELaine Good | July 5, 2011 4:22 PM    Report this comment

I find it most frustrating when I got to meetings where they know I am gluten free and they order pizza. I tell them to just let me know and I'll bring my own but I can't eat what they order and that's fine just let me know. They can order from Pizza Luce and get GF but don't usually do that and I get it , it's more expensive These are meetings I have gpme to monthly and weekly for years.

Posted by: Pame | July 4, 2011 9:24 AM    Report this comment

I do find myself having a "Pity Party" sometimes, especially at work when they have pizza days or ice cream days and I have to sit on the sidelines and pretend it doesn't matter. It DOES matter, though. My own manager doesn't seem to understand how left out a person can feel if he brings in donuts for the team..... Although sometimes people DO pay attention, and co-workers will go out of their way to bring in a GF and DF treat just for me. Probably doesn't help that I'm dealing with menopausal issues at the same time, which means the mood swings enhance the occasional sad feelings. I know that things are better now with more choices for me and there is more awareness, so I do have high hopes for the future.

Posted by: Linda D | July 2, 2011 7:09 AM    Report this comment

Since I was diagnosed with celiac in July 2010 I've developed "allergies" to eggs, dairy, chicken, macademia nuts, pecans, walnuts, quinoa, and buckwheat. My allergist seems to think I have "Eosinophilic Esophagitus." So it's incredibly difficult to eat out or at friends' or family's houses. I actually did go through a bit of a depression dealing with these over and over again. I'm seeing a food allergy therapist who is helping me put things into perspective and it's helping a lot. I do miss foods a lot... yeast donuts, artisanal breads, feta, blue cheese, chicago-style pizza, tasty craft beers, marinated mozerella, aaahhhh, the list could go on and on.

I really appreciate you starting this blog for us. I've gone to the CSA meetings and while they're great at staying positive, I never really get to commiserate with other people who know what it's like. And it does make me want to stay home and never eat out, but that's not healthy either. I always feel happier when I do swallow my fear, go out to a restaurant, and actually find something good to eat. Heck, that makes my week!

If there is a bright side to all of this, more and more people are getting diagnosed with this everyday, so hopefully the attention given to gluten free food at stores/restaurants will only continue to get better.

Posted by: Margo E | July 1, 2011 3:09 PM    Report this comment

hi

i was diagnosed in January 2011 with severe food allergies (gluten, dairy, eggs, additves and so the list goes on) and it's a real nightmare eating out, even friends get a bit muddle up at times. Seems the panic sets in when you tell people you can't eat the same as they do. But the worse is the way they look at you: invitations to to friends to eat become less and less. i think it's hard enough having to watch constantly what you eat wuthout haveing to be treated as a kind of alien. Sorry, I just had to get this off my chest.

I live in France and aperitifs (often followed by a dinner) are plentyful here and living with food allergies makes those moment rather difficult. oh I have to add that on top of it all alcol is out of bounds as well.

and as you sai Catherine " people dont understand when you wont even try" I have even had remarks like "but there arent that many calories or it's just because you dont want to put on weight" Wake up all those non-sufferes: we do live a nightmare...

Posted by: susanne a | July 1, 2011 5:46 AM    Report this comment

Honestly, I just don't get why other people don't seem to understand when you say you can't have a specific food. It isn't like we decided to be born this way, or that we are trying to live a life of wheat/casein celibacy, because of some sick desire to ostracize ourselves from society! People don't look at a blind person and say hey I'd love to take you on a scenic trip....too bad you can't see... but they seem to think that somehow we can just change the way we are genetically designed....so tempting us with foods that they know we cant have is just plain wrong and vicious. I had a guy tell me today that it is probably because of having poor quality milk that I have problems... I don't have problems...I'm glad to be designed the way that I am... I'm perfect in God's eyes, and if I am not supposed to have dairy then being joyful is better then dwelling... it isn't always easy to be different.. but being different isn't bad, wrong, or weird... it's just different because others tend to be ignorant and it is our job to educate and encourage. Good luck everyone, I'm glad there are so many of you for me to find encouragment from!

Posted by: aequane | June 30, 2011 9:42 PM    Report this comment

The pain after eating the "wrong" foods is not worth it. I really miss donuts and bread. My daughters both cook special GF foods for me, making me feel special at family get-togethers. I have some foods that the whole family will eat with me. I have learned not to buy the box pasta dishes, terrible. I have thrown away alot of prepared food because of the taste, but as I find some I like, I can go to those when others are eating their food. I take mine with me most of the time. I still have trial and error at restaurants and it is irritating to order something plain and still get sick. I have also had lactose intolerance for years so I guess it made gluten intolerance easier to handle. I too don't know how people handled this 10-20 years ago.

Posted by: dbc9r9@yahoo.com | June 30, 2011 9:15 PM    Report this comment

I decided to retire in 2009 for other than office food reasons, so I don't have to deal with the office food. Other friends and relatives also understand that I can't have wheat. Sometimes I will get a message on FB to ask exactly what is gluten-free and why does it cost so much. First, I tell them I only buy prepared bread and bagels sometimes, as I was a baker before and am gradually learning how to re-make everything gluten-free. And no, I do not buy the expensive cookies! I can make them myself. Luckily, I have family support, when we have family get-togethers. I am the only one gluten-intolerant(severely).

Everyone makes sure there is no cross-contamination. There are wheat and non-wheat bread and dessert, so everyone can eat. Foods that do not require flour, do not have it. Thickeners are now cornstarch or arrowroot, of which none of us are alergic to. We also label anything with soy, peanuts or mango, because some of us can't have those. Peanuts are about the only of those three to show up, because everyone likes PB cookies or brownies. I also bring almond butter something to match the PB item, so one of my sisters doesn't feel left out.

We always have a great time and no one has gotten ill, since we started talking about who has alergies and how to have a get-together without making anyone sick.

After about six years, I have adjusted to eating differently and BETTER!. I check the nutrients along with the labels now. If someone keeps trying to get me to taste something that they and I know I can't eat, my reply will be 'No thanks, that will be considered food tampering if you insist!

Posted by: Msleelowe | June 30, 2011 6:01 PM    Report this comment

Fortunately there are a few safe restaurants in my town but I never let my guard down. It totally sucks to be at a party where everyone else can eat whatever they please and I cannot, would not dare. I never want to draw attention to myself when the party is in honor of someone else so I just do a slow simmer and later vent to my wonderful husband. It is downright amazing when somebody fixes me something "special" but it is so plain it is anything BUT special. Grrrr! I have dear friends who can't seem to grasp the ins and outs of gluten free and that hurts. Honestly, I believe people will never truly understand how deprived we feel unless they have had to undergo the same deprivation. ONLY then would they have a real appreciation for what it's like to have such a restrictive diet. I was diagnosed with celiac in 1996 and thank GOD GF products have really improved since then. For a few years I was only able to order items over the phone and then what I received had about the same taste as tree bark! So.....I count my blessings!

Posted by: Alleen S | June 30, 2011 5:58 PM    Report this comment

Although there are things I miss having to live Gluten free, I'm excited that there are reasonable substitutions for me and my 3 yo daughter. The thing that annoys me are the restaurants who advertise a GF menu when it consists entirely of things to omit from the meal ordered. For example, Cheeseburger in Paradise suggests that you order their burgers without a bun or a side. Hmm .. plain meat patty .. appetizing? Frequently meat from a GF menu at a chain restaurant will come without salt or pepper. It is then that I worry that there is no understanding of GF food preparation.

I travel for business and find a lot of ignorance of the Celiac lifestyle. Most restaurants with a chef in the kitchen (as opposed to a line cook) has a decent understanding of how GF food has to be prepared and will work with patrons for a decent dining experience. Most of the time, it pays to bring Larabars or individual sized nut butters.

And as sad as I am to be excluded from the 'real food' world of potlucks and donut days, I am thrilled to be healthy once again, knowing what causes my body to fail.

Posted by: Cheryl S | June 30, 2011 5:52 PM    Report this comment

I would be so much better if I felt good most days but my intolerences seem to get worse now I can't do casin or any nuts or seeds . it use to be so nice going out to lunch or dinner with my husband but so many things bother me we don't eat out any more so feel very isolated also we cannot travel any more another thing we loved I went on a cruise tried to stay on a strict diet but was ill most of the time this a a very lonely condition I see why so any people at our GIG groups suffer from depression

Posted by: geri55 | June 30, 2011 5:37 PM    Report this comment

I can't say its not hard sometimes. The last time I tried to "cheat" myself and eat the things I shouldn't, I got a horrible asthma attack and I was in the ER. What makes the whole thing worst is that I have bulimia and I have worked for years on making all foods "safe". Now half of what I used to eat is not safe for me.

There are days where I feel miserable, but most days I am just thankful that I have tasty things to eat. I do not eat out, and I cook most of my food on my own. I am still learning about my triggers, but I know that when this process is over, everything will be much better.

I take it one day at a time. If I am upset, I allow myself to be upset, and I try to work on my feelings. No one said it was easy, but in the end we have to deal with what we've got. Most days I am just happy to breath freely and am thankful for the support I get.

Posted by: liora e | June 30, 2011 5:05 PM    Report this comment

It isn't the gluten I miss, it is the social belonging, the sharing, the "oh yum! Thank you! I love (insert non-gluten-free item)!!

Posted by: sicl4015 | June 30, 2011 2:25 PM    Report this comment

Actually one of the worst experiences I've had was at a CSA (Celiac Sprue Association) meeting. I cook with mostly almond and coconut flours (things I'm NOT allergic to). Almost everybody there uses rice, SOY, tapioca, potato, the usual GF flours). I generally don't eat at these meetings despite the GF pot-luck nature. I've been asked repeatedly why I don't eat, which is really odd in this group considering how many have multiple allergies. They keep a separate table for anything with tree nuts and don't allow peanuts at all. When one lady asked and I explained my allergies and that I use nut flours which is discouraged, she went off on a rant about how coconut is awful, she can't stand the taste, blah, bah for about 15 minutes! People started to stare and I felt as if I had no escape from her rant. I've been very careful about which meetings I attend now and limit myself to only the ones with guest speakers or research reports and avoid the pot-luck line by showing up late.

Posted by: SalmonNationWoman | June 30, 2011 12:29 PM    Report this comment

I haven't eaten out in nearly 4 years since I self-diagnosed Gluten Intolerance after a family member was diagnosed with Ulcerative Colitis and advised to go gluten-free. While that family member only heard "not Celiac" I took the hint and went gluten-free as I've had some sort of auto-immune condition that eluded diagnosis since childhood (over 45 years). I know now it's Gluten Ataxia.

As other posters have stated, I'm severely allergic to wheat and react to the smallest amounts of cross-contamination. I react to virtually all grass grains, most meats, hemp, many legumes antibiotics, many household chemicals and SOY, so eating out is really not an option. Even visiting a place like Panera or the grocery store bakery puts me into a serious neurological tailspin within minutes. Just taking a walk outdoors in Kansas (the Wheat State) causes vertigo, ataxia, migraine, neuropathy. I'm here on some protracted legal business and can't wait to move back to The Bay Area.

At home, my spouse is also gluten and soy intolerant. He didn't stick to his diet very well but when he finally got disciplined about it, he lost nearly 100 lbs, is cognitively better and lost many cravings for carbs. We have a group of friends that are in OA and/or eat vegetarian so there it's not difficult to have pot lucks or dinner parties. Our OA friends don't do any refined flours so they GET IT!

I wasn't working due to a knee injury when I self-diagnosed. It's nearly impossible for me to work in a large clinic anymore partly due to the knee but mostly due to cross-contamination issues. We're planning to make room so I can practice in my house when I get back to San Jose. My new specialty will be neuro-immunology and nutrition.

Posted by: SalmonNationWoman | June 30, 2011 12:04 PM    Report this comment

Are there good websites or online support groups out there for people with allergies in general? I recently found out that I have sensitivities to 20+ items (wheat-not gluten, all dairy including whey and casein, sugar cane, eggs, etc). Most of the above comments note that they could not handle this way of life without others around them with allergies. Well, no one I know has anything like what I'm trying to manage. The two or three people I do know with allergies are usually just gluten or egg free. I am having a very hard time not giving in to those temptations, especially since our society seems to revolve around food. What makes it especially hard for me is that my worst symptoms are eczema and an upset stomache...something I've lived with for a long time. So I constantly have to weigh what's worse-feeling like I'm going to loose my mind if I can't eat bread again, or having dry, itchy hands. It's very hard. So, does anyone know of good resources out there? This website has been a big help. Now I'd like to find people with similar issues. Thanks!!!

Posted by: Tami E | June 30, 2011 11:36 AM    Report this comment

Yeah, it's tough, but feeling better makes all the difference. I have 6 food allergies, wheat being one of them. At restaurants I order things plain, no sauce, no dressing, no croutons. I have a card I made that explains my allergies that I laminated. I send this to the kitchen every time. Pot lucks annoy me - my lethal to touch allergen (flax) is showing up more often. I NEVER eat at a pot luck - just walk by to check the table. If Flax is there, I strongly consider leaving. I also NEVER eat at those office/work parties. Cross contamination got me the last time I ate red pepper slices at school, so I do not do that anymore.

If people ask I say I am allergic, or say "I'm good" or pull out a snack I always keep in my purse. Occasionally friends will bring something for me, or the ones that really know how to deal with it will say - I fixed this, this is what is in it, I was careful of cross contamination and I want you to have some before anyone has a chance to mess it up by using the wrong spoon. These people are angels!

Yes, it is tough, but it is safe, so avoid all that stuff and be happier in the long run. It did take me years to get in the right mindset. The occasional doughnut will sing it's siren song, but it ain't worth it!

Posted by: Peg | June 30, 2011 11:06 AM    Report this comment

People keep asking me if it isn't really hard to be gluten (and dairy, soy and rice) free. I smile and tell them it is so much easier than daily migraines (which was my symptom for 10 years). I am intolerant to the above foods, not celiac. However, I still suffer from cross contamination and can relate to the restaurant dilemmas. I get tired of the very plain food I know will be safe. But I keep reminding myself of the consequences of "cheating". Still, that ice cream everyone else is eating calls to me. I've had to stop at the natural food store on my way home to get coconut milk ice cream to squelch the craving.

Fortunately I have several friends who are also gluten free. We pick restaurants we know are safe (very few) and enjoy our lunches out. I'm just grateful I found the solution for the migraines and they are almost a thing of the past. It has only been about 18 months that I have been diagnosed and on this diet. Ask me again in 10 years!

Easy? No. But if this is the price I have to pay for good health, I'm going to do it. I'm so grateful for all the help out there - including the articles and recipes in Living Without. The blogs and websites for gluten free help tremendously. Thanks to all of you who share your wisdom and make my life a little easier.

Posted by: Barbara W | June 30, 2011 9:35 AM    Report this comment

I'm still pretty new to the gluten free lifestyle, and it's still very hard for me. Just yesterday I was in class and it was the professor's birthday. They got her a cake and she wanted everyone to eat a piece. So I got to sit and watch everyone else eat chocolate cake.

One of the favorite past times among my group of friends is having pot luck get togethers. You know how that feels, only being able to eat what you brought and looking at a table full of yummy food that's off limits. I could go on and on.... I just have to keep reminding myself how much better I feel not eating it.

Posted by: greengoth | June 30, 2011 9:31 AM    Report this comment

I too have the days that I wish for freedom, and they can be overwhelming. So I do things that make me feel special instead of deprived. Like flowers for my dining room table. Another favorite thing to do is to buy new plates, unique plates. I always buy just two so they are special and unique in my home. My daughter-in-law says she loves my "pity plates" and everyone enjoys the variety.

Posted by: Lisa M | June 30, 2011 9:00 AM    Report this comment

I stupidly walked through the grocery store the other day and counted the things I COULD eat. In some of the aisles - it was nothing. I left feeling more than a bit sorry for myself. Why do we do these things to ourselves. I don't miss gluten that much, I don't even miss bread very often - (I have a few good recipes, and the bagel recipe from Living Without is very satisfying - toasted with mayo, tomato, lettuce and ham). I think I miss being 'the same as everyone else' and not having to work so hard to eat safely.

Yesterday we had company over for a potluck dinner. Everyone who came knew that I was GF. I went to toss an amazing looking salad that was making my mouth water - only to discover croutons and fake bacon bits in the middle of it. I nearly cried. If I didn't have Celiac and gluten intolerant friends to commiserate with, I don't know how I would handle it. I am very thankful for them.

Can't imagine what it would have been like to be GF 20 years ago or more, when people must have felt like freaks. I can just imagine my mother - 'What do you mean you can't have any french bread? - surely a little won't hurt you....' She would never have understood.

I am greatful that things are som much easier for us now - but there is no pretending that it is easy.

Posted by: Catherine K | June 29, 2011 1:05 PM    Report this comment

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