Disordered Eating & Celiac – The post every Gluten Free or Celiac Woman should read….

Lately I’ve been feeling chained to living a gluten free lifestyle. It’s like a giant, shackled ball is on my ankle following me around everywhere. Even before I started blogging about Celiac and gluten free living, it has been all I think about. Any symptom I have, I wonder if I ate something with gluten. Anytime we go anywhere, I wonder if I can trust the place we are eating to not make me ill. I’m finding myself obsessed with food, obsessed with Celiac…

Not to mention, I feel like a huge burden to others. We just went to a cookout on Friday and they called to see what we wanted to eat. Aaron had to do the whole explanation thing of what I can eat, it’s not just wheat etc…

I ended up eating before we went over there and picking up a fruit bowl to take with some Woodchuck Cider Ale so I wouldn’t be tempted with snacks or be hungry the whole night.


I realize there are people with bigger problems than I have right now, but for me this is a huge hill I’m still learning to climb. My choices are so limited and I’m already a picky eater so it makes it even more difficult for me to find foods to enjoy. Between the gluten allergy, latex allergy and lactose intolerance problems – I’m struggling. Even more so than I ever have in the past and I think it’s because I’ve become more aware, more diligent of my problems. Specifically now that I’ve been diagnosed with these ailments and know what’s going on.

I’m one of those people that have to understand everything. My friend Janine always jokes with me (and gets annoyed I’m sure) because I ask her “why” all the time. I’m the kid that loved to learn. My grandfather used to teach me lessons on the drive to school and always made sure I was ahead of my grade with reading, writing and arithmetic! So, why can’t I figure this thing out??

My pop with all our pets growing up – What ugly wallpaper!!

Did you know that 3 out of 4 women suffer from disordered eating in one way or another? That was a study done in 2008…. Can you imagine what the statistics are now with social media growing so large – giving access to so much information to so many people?

What is Disordered Eating?

Disordered eating is a classification (within DSM-IV-TR, used in the health-care field) to describe a wide range of irregular eating behaviors that do not warrant a diagnosis of a specific eating disorder such as anorexia nervosa or bulimia nervosa. Affected people may be diagnosed with an eating disorder not otherwise specified. A change in eating patterns can also be caused by other mental disorders (e.g. clinical depression), or by factors that are generally considered to be unrelated to mental disorders (e.g. extreme homesickness).”

According to a 2008 study at University of North Carolina Chapel Hill, those in their 30s and 40s report disordered eating at virtually the same rates. Findings show that:

  • 75 percent of women report disordered eating behaviors or symptoms consistent with eating disorders; so three out of four have an unhealthy relationship with food or their bodies
  • 67 percent of women (excluding those with actual eating disorders) are trying to lose weight
  • 53 percent of dieters are already at a healthy weight and are still trying to lose weight
  • 39 percent of women say concerns about what they eat or weigh interfere with their happiness
  • 37 percent regularly skip meals to try to lose weight
  • 27 percent would be “extremely upset” if they gained just five pounds
  • 26 percent cut out entire food groups
  • 16 percent have dieted on 1,000 calories a day or fewer
  • 13 percent smoke to lose weight
  • 12 percent often eat when they’re not hungry; 49 percent sometimes do

Before 10/2008 & After March 2012

Everything I learned about nutrition for the past 4 years is wrong.

All the tools I used to lose weight, probably made me even more ill and could potentially cause numerous problems with me as I get older.

Awesome.

A Penn State University study found that women with controlled celiac disease, eating a gluten free diet – are still more likely to suffer from stress, disordered eating and depression.

As a fitness expert, the more I learn about wheat, gluten and GMO’s I question how I can still promote and recommend these items to my clients.

My hormones are so out of whack that I try to work my ass off – only to build NO lean muscle – just gain weight or stay the same. I never understood why I did everything “right” and it didn’t work. Well, my TSH levels were off the chart, I suffered from low testosterone levels and I consumed gluten at an extra-ordinary rate! No wonder I didn’t feel well despite being “healthy.”

You can imagine how frustrating this is for a fitness professional to try so hard and not get the body the others have. To obsess over what you are putting in your mouth, doing the right things, only to have your body rebel. It’s the same feeling to have a hair dresser with horrible hair or a foot model with warts!

Now my body is running the show and I have no control. I finally know what is wrong but there is still this part of me that still feels like this is temporary and I will be able to go back to eating regular foods anytime now.

I work about 10-12 hours/day 6-7 days per week and I don’t have time or want to learn new recipes or foods. I want things to be quick and simple. I’m fortunate to have a husband that doesn’t mind cooking, but often I feel guilty when he works the same as I do and then ends up cooking.

Today I realized I’ve developed a Disordered Eating habit. I’m only eating things that are quick and easy. I’m not getting enough protein and whole foods in my diet. I’m consuming too many snacky type foods. To put this in perspective and be totally honest – I ate a half a bag of Popcorners, 3 gluten free cookies, 2 gluten free soft pretzels, a gluten free cider ale and some Kefir smoothie with my vitamins. I’m self admitting here, hoping it will wake me up or you can give me some support to lift my head up and eat some meat!

There is a difference between happy and healthy or skinny. I’d much rather be happy and healthy but am struggling to put the pieces together.

I will figure this out….

Last night I had a great balanced meal! Salmon, green beans and purple jasmine rice!! I need to stay committed to these types of meals and eat them throughout the day instead of just dinner.

Am I crazy? Do you suffer from any of these? Leave me a comment and let me know!!

Rebecca

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27 responses

  1. I definately can relate. Thanks for sharing. On top of my gluten allergy I have an allergy to soy and to corn as well, so my options are very limited. On top of all this, I also have muscle troubles due to years of detected/diagnosed malnutrition and I am gaining weight at a substantial rate which only manifests that problem. I am constantly injured and as a result easy meals are my go-to option for me. I attempt to eat healthy but I often go to snack foods because there is little or no preparing involved. I sometimes want to just throw my hands up in that air and quit. I will admit that there are times where I just opt to suffer and eat what I know might contain gluten somedays, especially when I am at a praty. I take a benadryl and pray when it comes to my soy and corn allergies, because well, let’s face it , it’s hard to find easy foods to eat, besides fruits and vegetables that don’t contain either. I feel your struggle.

    • Tric-

      Thanks for posting. I completely understand where you are coming from. It’s just so easy to grab a “gluten free” snack instead of eating regular foods. Do you find the benadryl works for you? I’ve never tried it after I’ve been poisoned. My joints get so sore I can’t even bend them!

      Rebecca

  2. I empathize and get what you all mean! I tend to opt for snack type foods lately for fear of messing myself up or at times I am so sick I cannot eat at all. It comes in waves I have noticed, that for a few weeks/months I am good then BAM! I am out of commission from who knows what. I buy all organic veggies and fruit not to mention all Gluten Free-everything! It is tiring trying to find a restaurant to go out to so sadly I decline invitations, I eat before I go to a friends or a work function for fear of getting sick. Simply put Gluten and fear run my life, not to mention other areas such as lack of thyroid and tons of steroidal medications that “help” you gain weight. I use that term with a bunch of sarcasm, I am scared to eat, I eat simple things, my diet is boring to me, and I am oveweight-at least for my 5’2 frame. Sadly I am at a loss ladies but I find peace and solice in that we are NOT alone. This is a disease that is getting alot of spotlight, but there are also those negative nancy types that state this is a “diet fad!” Thank you for the information, and I think I have eating disorders for fear of eating the wrong thing. Eeek!

    Sarah

  3. Rebecca

    Thank you for sharing and for all the research, I too find living gluten free challenging and know I often make less than ideal food choices. Choosing the same foods day after day (breakfast -yogurt & Udi’s granola; lunch -pbj or protein drink ) and then having little to no energy to cook after a full day at work.
    On the subject of pain, i was diagnosed with Fibromyalgia more than 10 years ago and Celiac approximately 3 years ago. I read in a book about Celiac Disease (don’t recall the source) that sometimes people with Fibromyalgia who eat a gluten free diet sometimes have less pain. This is not true for me, but allegedly it is true for some.

    I’ve only recently found your blog and want to say Thank you for sharing.

    Brenda

  4. Thanks for posting. I have been at this a long time. So… I know how frustrating it can be. I still get mad when I hear about my friends going out for pizza. I am so lucky that I live with a suppoting Partner that is an amazing cook. He creates wonderful meals for me so I don’t feel deprived. I still get mad at times. I am all Italian, so most of the food I grew up with are completely off limits. I was also allergic to lactose, but as I got older it went away. It is so important for a person with Celiac to eat balanced meals. What seems to work for me is cooking in advance and having variety. I also work out a lot and I have to make sure that i have food ready to eat so I don’t grab things that will make me sick. I don’t eat any gluten free snack foods. The sugar really gives me stomach issues. I have been eating mostly like a “cave man”…meat, eggs, veggies, sweet potato, nuts. Seems to be working well. I am completely symptom free. I learned the hard way that trying to go back and cheat a little with gluten is just going to amle me feel like crap. I still get mad when I am at a restaurant with friends and I get passed the bread basket….but I just let it go. I often say to my Partner, “Mark”, that in my next life… I will be eating pizza every day ! lol.. I know it is hard…. all of us on your site are grateful for your posts. It is great to share ideas and thought.

  5. Your thoughts and feelings and the way you express them, it is like I am reading a story I wrote. I have always been a picky eater but LOVED to eat the foods I liked. I was diagnosed with Celiac last month and everything has changed. I HATE food. I am terrified of it actually. I love the morning because I can get through it without eating. I have a couple cups of coffee and go on about my business; this is not a whole lot different than before. By lunch, I am hungry but feel good. I know I have to eat so I do but I hate it because the “feel good” is gone. I am furious about this whole thing, absolutely furious. I do try to find gratitude; this IS fixable but it seems like such a massive mountain to climb. I will say, if I have to hear from anyone (ever again), “Oh, celiac? Thats not a big deal, just a diet change,” I will literally scream. I am trying to believe that this will get better and that food and my stomach will not always hate each other but it is difficult. Thank you for sharing your journey.

    • Hi Melissa-

      I know exactly what you mean about being furious. I just keep saying to myself, it will get easier. And it has in many ways. I wish I loved to cook and could try all these yummy recipes I see other gluten free bloggers trying. I even thought about doing it once a month or a week but that dream fades quickly.

      We can get through this! I have no shyness about sharing all my thoughts and problems with everyone so we all know we aren’t alone on this journey. I’ve found things I like that I eat all the time, it just gets boring!

      Welcome to the PLC community!

      Rebecca

  6. I’m recently diagnosed gluten, egg yolk, spinach, almond and cashew intolerant. I’m still mad at the world most days. Why me? I eat healthy, I exercise, I lost the weight, and I got sick anyway. I have been on a restricted diet (no carbs for almost 6 weeks now, no allergy foods for the last three). I can usually find GF foods, but try finding them with no gluten or no egg. No gluten + no egg = no pizza restaurants and very few spaghetti places! It’s frustrating to go out for date night and have it be a disaster because the waitress doesn’t have a clue what a food allergy is. I guess in some respects I’m luckier than most, I don’t get physically ill from consuming allergen foods. My body just couldn’t process the carbs and I gained 40 lbs. I was also vitamin deficient. There is no warning, no clue if I have ingested a banned substance, so I don’t have as much pressure to be super careful at restaurants. I just do the best I can, ask for an allergen menu, and make a wise choice. Alternatively, if I use a product with gluten or almond oil like makeup or hair care, I itch like none other. I’m tired of trying one product at a time and then waiting to see if I have a reaction or not. Even some products that do not have allergens in them, I still can’t use. So, I’ve gone from high maintenance to no maintenance, and I’m learning to be ok with that.

    It is certainly hard for others to understand, but at least we have each other.

    • Jen-

      That’s quite the mix of allergies! I know what you mean about being mad at the world. How long have you gone not knowing you were ill from these foods?

      What about potatoes and rice? I find a good sweet potato can really hit the spot for me carb wise and not make me sick.

      As far as vitamin deficient, are you on any supplements? Do you get your blood checked regularly? Low magnesium levels can really cause problems with people~

      Rebecca

      • About 2 years probably, but it didn’t get noticeable until the last year. I’m on a carb restricted diet to lose the weight, so I try not to eat any carbs, but I can occasionally have one serving in the evenings, so sweet potatoes or a piece of gluten/egg free bread is my pick. Rice and peanuts seem to inflame the yeast that we’re also trying to control.

        I’m taking a bunch of supplements including B6, stress detox, bowel detox, potassium-magnesium, and pepzin GI. I have a follow-up appointment this week, so hopefully I’m well on the recovery road. 🙂

  7. All of this sounds so familiar! I have been trying to learn about the whole GF diet. I also don’t tolerate dairy (except for Greek yogurt) I also don’t eat meat. So I also feel like I eat too much “snacky” GF foods. Rice cakes, rice chips and a ton of fruit. I am obsessed. I lost 65 pounds, the hard way…..being sick from not knowing what was wrong, so I literally starved. I was afraid to eat anything. I felt emaciated. I began drinking Ensure, so I knew that at least I was getting some kind of nutrition. I don’t cook much of my own GF food, because it’s more work and expense, just for me. My husband is a farmboy. Raised on meat and potatoes and bread! I used to enjoy that too, now it makes me feel nauseated to think about it. But I still have to cook this for him. So I snack on rice cakes and fruit while I cook his food. I still don’t think that I am getting the balanced food intake that I should, but so much hurts me, that I stick to what I know doesn’t make me sick. Afraid to try something different. I don’t know how to do this. I thought I already ate healthy, was active enough. Now I am exhausted and in pain ( diagnosed with fibromyalgia), and yes, very depressed. I don’t go out except for with my husband, he helps me try to explain to people what I can and can’t eat, and why (as if I need to explain it, but sometimes we have to just so I won’t be “bullied”!! That’s what it feels like sometimes!! I have even stopped going to church, just because I have been asked, “are you one of those girls who goes and throws up afer you eat?”, another, “do you feel alright, you don’t look like you feel good”, and then there are all the busy bodies, who know EVERYTHING about GF and tell me what I can and can’t eat! Like I said, I lost 65 pounds, fast. Some people look at me “pitifully”. Like I don’t already feel bad enough! So, back to the subject…..I wondered if I am being so paranoid about food, if I was in the midst of having an eating disorder? I still drink Ensure, every morning. And eat fruit during the day. On the positive side, I am grateful and do enjoy this site! I have only recently found you, but it’s a ray of light in this darkness of learning all over again, how to eat healthy. Healthy for me. I do feel better reading all these other comments and to know that I am not the only one! That there are people who do understand and I don’t have to explain my eating habits to, or explain to someone that, no, I don’t go and throw up after I eat, not on purpose anyway! I will end my ramblings now! Thanks for the support, all of you!

    • Hi Brandi!

      Thanks for stopping by – 65lbs is a lot! I completely understand about being “bullied.” I usually feel more frustrated than anything! We just need to stand strong as a community for people to realize this isn’t the Atkins Diet or anything else that’s a fad. This is our life and we won’t live in fear or frustration. Let’s all share the things we love, what works, what doesn’t work so we don’t have to go through this alone.

      I’m going to try to go a few days with whole foods and then allow myself some snacks. I know from experience though, you don’t crave the snacks as much when you are eating whole foods.

      Why ensure? Those seem to have a ton of sugar in them!

      Rebecca

      Welcome to Pretty Little Celiac!

      • yes, Ensure does have alot of sugar, and ingredients that I normally would stay away from, but it is the only thing that I have found that makes me feel like I can make it thru a day. I began drinking it after I remembered a lady I sat with while she was in hospice. She didn’t/couldn’t eat anything so all she had was Ensure. I went for months before I remembered Martha! So I thought, it’s worth a try. I was concerned about getting enough nutrition and vitamins. I couldn’t take my own supplements on an empty stomach. But I have been drinking one every morning so long that I can’t tolerate anything else in the mornings! And I still have days when I don’t eat b/c I’m either tired of the same old thing evryday or just not able to eat because of pain. It’s a vicious cycle

  8. I have Celiac as well as dairy and soy intolerances. I can completely understand where you’re coming from. There are days when I literally live on Chex with almond milk because of the convenience of it.

    The biggest thing for me was to disassociate eating with being social. Every once in a while I come across someone who treats Celiac as if it’s a choice I’m making. I usually just say ‘no thank you’ to whatever they’re trying to get me to eat, but if they push me eventually I come straight out and say ‘what you are trying to feed me could cause cancer later on. it is NOT worth it.’. That’s pretty much all it takes 🙂

    As for eating out, I have a system now. Only once did I get sick from hidden gluten at a restaurant and it was the first month I was diagnosed. I know how to handle it better now…and awareness has skyrocketed since then, so it’s getting easier. Several of the larger chains…like Chilis and Outback already have gfree menus available.

    As for food itself. I don’t love it anymore. There are plenty of whole food, yummy gfree recipes out there and they are definitely good…but it’s not the same, you know? Nothing is SINFULLY DELICIOUS and at times it’s disappointing.

    But I try to keep the big picture always in mind. I was undiagnosed for a few years and it was to the point where I wondered on a daily basis ‘how can i live like this?’. Now I don’t have to. I have my health, my life and my energy back. I did not develop a terminal ailment, I’m just being forced to eat a certain way. There are definitely worse things in life.

    I’m sure eventually you’ll find your groove!! Good luck 🙂

  9. I totally identify with the, “My choices are so limited and I’m already a picky eater so it makes it even more difficult for me to find foods to enjoy. ” comment! I was eating a lot of snacky foods while still in school, but have managed to get on a balanced diet now that I live at home with my parents. You can do it, I believe in you!

  10. Oh my gosh! How are you in my head????? Every post I read makes me feel so much better that I am not alone! I have a HORRIBLE relationship with food and my body. I was OBSESSED with gluten products for 30 years and just ate and ate. I could not lose weight when I tried and was always sick and tired. I was called lazy and fat pretty much all the time for the first 30 years of my life. It was sad because I am the furthest thing from lazy. My mind is creative and fast but my body always let me down, it could not keep up. The physical part is getting better since I have been gluten free but I still have a lot of work to do on my mind. I struggled so much with food and body issues I have to work at loving them again. I eat like I don’t want to taste the food, fast and distracted. I have been working on eating things with many flavors and tasting and acknowledging each one as I eat. I also have been forgiving my body for all the “lazy” years realizing it actually hung in there pretty well considering the INSANE amounts of gluten and all of the doctors “treatments” that were well intended but so far off!!! Now that I am using fresh herbs and actually tasting my food and forgiving my body I am just starting to see the light!

    • Amy!

      Thanks for the comment, I just loved it. It makes ME feel like I am not alone too when everyone posts such wonderful things on my blog posts. At least now I know I’m not crazy!!
      What are your favorite herbs and spices to use? My palate is so bland..

      Rebecca

  11. I was diagnosed with celiac for about 1 year ago, completely gluten free. I always opt for the quick gluten free snack. Or don’t eat very much at all. I have found my appetite is just not the same anymore. On top of it all I am 22 and single, and when dating it all revolves around food. It’s not that fun always having to explain, oh sorry I can’t eat that, or that, or that. I usually just eat before going out and try to save myself from explaining things all night. Thanks for your blog its good to read things from people who really relate!

    • Angela-

      Thanks so much for the post!

      Did you struggle with dating before? I can’t even tell you how many dates I ended early or snuck into a bathroom because I was so sick from my meal. Or being so upset that I had a cute outfit on, only to have my stomach grow to pregnancy looking levels in the middle of the date! I would much rather have said to someone, I’m sorry I have a gluten allergy – than – excuse me could you please drive faster, I really need to use the restroom 😉

      Regardless, we all have our issues. The best thing to get on a date is a small steak and baked potato or vegetable. Just tell them you don’t want seasoning or dressing on the steak!

      Thanks for joining us over here 🙂
      Rebecca

  12. I can relate. I am 49, have had “a nervous stomach” since I was a kid and became totally dairy free and gluten free over a year ago. I lost 15 pounds last year by not eating any gluten. I do feel much better but I am still 15 pounds over a reasonable goal weight and still have symptoms. I have not been diagnosed with celiac and have had to figure the out through years of trial and error. My husband relies heavily on bread in his diet and doesn’t like vegetables so we usually eat completely different meals as do my children (who are now out of the house at college). All very time consuming with a lot of inherent issues in there! People are always telling me you should make everyone eat the same or providing other helpful advice! I would love to just eat without thinking about it and worrying about my gut health or weight! Even more so, I would love to eat in the company of others without discussing my food choices! My exclamation points are highlighting a fairly constant level of frustration. On the other hand, I am really enjoying learn gin to cook and learning new techniques -when I feel like I have the time. I am enjoying new foods (who knew I could love Kale!). I am enjoying being thinner than I have in years without additional exercise. I would like to embark on an even better year of better more enjoyable eating and exercise. I would like to find some foods to bring to pot lucks, office brunches, lunches and snack fests that are 3 times as expensive as what everyone else brings or that other people might enjoy too. Any suggestions on the last points would be appreciated.

    • Hi Kathryn!

      Thanks for the post. I understand how hard it is to go to events and not be able to eat anything or feel left out. Did you like my facebook page? I try to post many different things on there – including foods, recipes reviews and more. Is there anything particular you are looking for?

      Rebecca

  13. I love this post! I am gluten free and dairy free plus I have a boat load of allergies and intolerances. In fact, it makes it impossible to eat out or eat other people’s food. It can be so challenging trying to explain yourself to others and deal with cookouts and get-togethers! It does get easier over time, but frustrating nonetheless. I realized not too long ago that I wan’t getting enough protein, but now I realize I eat way too much protein powder. I’m trying to figure out what I can do to change my diet and help my hormone levels… which are nonexistent! My estrogen and progesterone are extremely low. (I am at a healthy weight, BMI, and I am working with my doctors on this) I’m so glad I found your blog!!

  14. Thanks so much for sharing your journey and struggles. I have recently been diagnosed with IBS. Although I am not celiac (I was tested) I still seem to have issues with wheat as well as dairy. Even after removing these items, which is not easy as you know, I still have flare ups and get sick. My GI doc said it would be a long journey to figure it all out but it’s so frustrating. Its hard when you feel deprived and still don’t feel better. I know I will eventually figure it out, it’s just going to be a long journey. It really helped to come across your story especially since this has been a tough food week. Looking forward to reading more posts and hearing more from you. 🙂

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