Eating Disorders & Celiac Disease

[GlutenFreeJess]

Hello Everyone! I am a pretty new member here, but not-so new to being dx with Celiac Disease. I was diagnosed with Celiac in 2008 via a Celiac Panel that came back positive.

I have a very lengthy history with an eating disorder, and while I have stopped binging and purging and starving, I still have food issues.

I have struggled to remain gluten free since my diagnosis, and I believe this challenge is directly related to the eating disorder and food issues.

I *know* I need to be 100% gluten free for my health, yet it's taken me so long to be able to trust food, that I find myself saying "just this once won't hurt me". Problem is, "just this once" turns into several times a week plus.

It's getting to the point that eating gluten is affecting my health. I see and feel it. It's also affecting me emotionally.

I am in therapy, and also attend a 12 step program for eating disorders, and am working on this diligently.

Just wondering if anyone else out there relates? I kind of feel like a fish out of water because it seems almost easy for people to just stop eating gluten and to get on with their lives, but for me it's a constant battle.

Thanks for listening

[tictax707]

Hi Jessica,

I think I get what you are saying about being a fish out of water, but really, it's NOT easy for many of us to just quit eating gluten in a flash. For some it is easier than others because they are so sick, but if you read around many of the posts here, people do struggle with accepting the diagnosis and adjusting to the diet, and missing the foods they used to be able to eat. Plenty of people still "cheat" and plenty of us still yell at them for it. Really, spend some time reading around the posts here so you can really see that you are not alone in battling the cheating, or in accepting this disease.

It's rough because I think part of the overcoming EDs has to do with not restricting yourself in terms of food and then here comes celiac that says no gluten and it's everywhere (holy restrictions batman!). I trust that in your therapy you are discussing this whole new obstacle of celiac disease...?

What I am trying to say is that you really aren't as alone as you think. Also, it's not uncommon for people to present with eating disorder behavior after a diagnosis with celiac sprue or any other diagnosis that turns your food world on its ear in a second. I'm not sure if it really helps, but know that the battles you face may not be as directly related to the eating disorder, and it's a constant battle for many of us, not just you!! I've been diagnosed for almost 8 years and although it's not overwhelming anymore - it's definitely not a piece of cake. I've definitely struggled with issues with food because of adjusting to the diet. I remember seeing another post a while back that someone else here had struggled with an eating disorder before becoming diagnosed, so you are not alone in that regard either. So anyway, welcome! Take a deep breath, and let us help you along your journey. This place is a great resource.

[revenant]

Hang in there, I'm going through the same thing. Not with gluten or soy, I have managed to give those ones up for around 8 months (excluding accidents) because they both do a lot of harm mentally for me and I get really suicidal on them, so it's easy to stay away from. But with my other food intolerances; nightshades, corn, dairy in particular. I managed to give them up for a month or two and I stopped binge eating as a result. Unfortunately it returned and I haven't been able to give them up completely. They still do a ton of harm mental and physical to me but the thing is food intolerances are what feeds my binge eating, without them I wouldn't binge eat, and there's that part of me that wants to binge eat out of this or that reason (stress, fear, etc) so I end up going back to them. It's extremely damaging, especially on mental health. I'm currently suffering with depression and social anxiety that keeps me in my house, alone and miserable, and I know it's a direct cause of not dropping these foods from my diet. Not to mention, I'm gaining a lot of weight and suffer from BDD which prevents me from leaving the house in the first place...Oof.. sorry bit of a rant there!

I think there are a lot of us out there. I personally think that most binge eating is caused by food intolerances. Most people ARE bingeing on gluteny or dairy-y things, in the end... Doughnuts, cake, icecream, cookies, pizza.... Pizza, pfft, all it is is gluten casein and nightshades! No wonder people love it so much!

How do you not restrict when you have to for your health?

Have you tried telling yourself that you can eat whatever you want? Even if at first you choose to eat it, try to remove the guilt by realizing that you might be saving yourself from even MORE gluten if you were to binge on it. Eventually, you may choose not to eat gluten simply because you don't want to feel like that anymore. You can still use the 'no restrictions' method, it doesn't mean that you can go at whatever right now. In fact, the fact that you "can't" eat gluten might actually be that you don't want to eat gluten because of its effects. I think what having no restrictions does is set your goals/values straight and turn something impersonal and external like "can't" into something personal and directly related to you, such as "want". You might want the gluteny thing but you also want to get a good night's rest, have a nice day tomorrow with a friend and not be in a horrible mood, not threaten your physical or mental health, be able to go for a walk (if you get joint pain) etc....

I'm probably not much help but feel free to contact me! This is a specific problem where it seems not many people are available to talk about it.

[Kim69]

I too have issues with food. I have been gluten-free for about a year. I also have fructose malabsorption so I am on further restrictive diet. Still I have constant abdominal pain. I feel weak and tired. I am managing to work full-time but my brain is foggy. Before Xmas I was told I had rapid gastric emptying syndrome - the specialist told me I couldn't eat normal sized meals or drink with a meal. Any wonder that I am sick and tired of food! All food seems to make me ill.

I am on antidepressants (was on them prior tinting diagnosed and they helped drag me out of suicidal depression).

I discussed these issues with a therapist before xmas - I told her I almost feared eating. At the time i was investigating liquid forms of nourishment which my therapist strongly opposed me doing. Since then I have followed her advice and have eaten the foods I have been told I could eat. But I am still in pain and its pretty depressing not feeling like going for a bike ride or a walk like I used to.

I am finding this foumr useful because it's good to know that I am not alone.

[Scarlett January]

YESSSS! I so relate to this (argh, it is really hard to type right cuz two of my fingers are numb from an accidental ingestion of gluten 3 days ago).

I am also in a 12 step program for ED and although I have had binge-purge free periods I do still struggle with it occasionally. I went gluten-free about 8 months ago, without any formal diagnosis because I had such strong suspicions and no doctor would take me seriously. Well, surprise surprise, when I went gluten free I stopped having gastro-intestinal problems, and stopped having numbness in my hands, joint and muscle pain, night sweats etc. But I really struggled at first, particularly when I wanted to binge. It took me a while to completely switch to gluten-free, even for my binge foods. Eventually the suffering from symptoms after a gluten-filled binge became too much and I now no longer "cheat" and eat gluten on purpose...EVER! In fact, normally I can't keep any sweets in my house AT ALL or I will binge on them. Now when there are sweets in my home that don't even list gluten ingredients but which I cannot confirm to be gluten-free I am not even tempted to eat them. This is simply amazing for someone like me who has struggled with an ED for 16 years! (You probably understand what a big deal that is.)

I understand that it is very hard to accept this as someone with an ED. Sometimes the meals I will eat in a day are the reason I get out of bed in the morning (god that sounds pathetic...but sometimes its just true.) i have found some relief from the sense that I am being deprived by really putting in the time and energy to find REALLY REALLY DELICIOUS alternatives. They are out there! I am fortunate to live in a big city where there are a lot of options. Also, I have done a lot of experimenting with gluten free cooking at home. I think the thing that I miss the most are the "fast food" options and by that I don't necessarily mean junk food, I just mean the convenience of being able to grab a quick and convenient snack or meal somewhere. To solve this problem I cook big batches of stirfries, pastas, traditional meat and potatoes type dinners, soups etc and freeze them in single servings. Then, if I know I will be out for the day and will need something to eat I just take one or two with me and I can always stop by a 7-11 or somewhere with a microwave to heat up my food. voila! "Fast food".

I hope this is helpful. If you have any specific questions about dealing with celiac with an ED I would be happy to respond again.

Please remember: you are not alone in this!

:-)