Anyone With An Eating Disorder?

[eddieisagirl]

I just got tested this week and dr will have results next week. I've been reading a lot and thinking celiac is a real possibility. I'm vegitarian - I really do enjoy fruits and veggies and really just don't like meat. I've also struggled with an eating disorder for a long time. I've kept myself in check and on this side of the line for quite some time, but the fear is always there that I'll lose control, that the monster will come out and take over, and of course, gain weight. So I'm getting pretty anxious looking at what is gluten free and all this talk of protein and fats. Do you or have you had an ed? How have you dealt with all of this? It sure would be nice to chat with someone else that has had or does have this added wrinkle in what is surely a huge issue for anyone dx'd with celiac.

[CountryStar]

I just got tested this week and dr will have results next week. I've been reading a lot and thinking celiac is a real possibility. I'm vegitarian - I really do enjoy fruits and veggies and really just don't like meat. I've also struggled with an eating disorder for a long time. I've kept myself in check and on this side of the line for quite some time, but the fear is always there that I'll lose control, that the monster will come out and take over, and of course, gain weight. So I'm getting pretty anxious looking at what is gluten free and all this talk of protein and fats. Do you or have you had an ed? How have you dealt with all of this? It sure would be nice to chat with someone else that has had or does have this added wrinkle in what is surely a huge issue for anyone dx'd with celiac.

i have had an eating disorder for about 14 years. i feel that for the most part i have been in recovery for the last year or so, but not without a few relapses. i was just diagnosed this week and the gluten free diet thing has me a little freaked out. i feel the monster lurking as well. plus now when i go out, people assume it is an eating disordered thing to not eat this or that. my mom still doesn't quite grasp the concept of gluten free and the necessity of it.

it is hard i am dealing with the same thing and wonder if people have advice.

eddie i totally hear you. i have an appointment with a dietitian at the end of the month. hopefully she can help.

When i blew out my candles on my birthday my wish was to no longer have an eating disorder. now celiac.

[samcarter]

Yes, I had an eating disorder for about 18 years. I am inclined to think that a lot of it was related to gluten intolerance---bingeing and other disordered eating behaviors can often be linked to depression (which gluten intolerance and celiac disease can cause) and malnutrition (again, linked to celiac and gluten intolerance, because our nutrient absorption goes south).

My ED behaviors have significantly lessened since going on a gluten free diet. There is hope. I've learned that following a gluten-free diet means I listen to my body more often--because I am on the alert for accidental glutening--and that means I'm more inclined to wait for true hunger signals as well.

[eddieisagirl]

Yes, I had an eating disorder for about 18 years. I am inclined to think that a lot of it was related to gluten intolerance---bingeing and other disordered eating behaviors can often be linked to depression (which gluten intolerance and celiac disease can cause) and malnutrition (again, linked to celiac and gluten intolerance, because our nutrient absorption goes south).

My ED behaviors have significantly lessened since going on a gluten free diet. There is hope. I've learned that following a gluten-free diet means I listen to my body more often--because I am on the alert for accidental glutening--and that means I'm more inclined to wait for true hunger signals as well.

Well Sam, that is encouraging! Interesting correlation. Some ed's are also associated with compulsive behavior, and I thought I read that ocd can be related to celiac? Honestly, I already am kind of always on alert anyway, and I'm concerned that being on alert for gluten will reinforce or trigger the other (or even new) "food rules". Then again, maybe this is an opportunity to find a balance that will stick. Maybe while healing and beginning to absorb nutrients, your head is screwed on a bit straighter and it's not so difficult to keep the ed at bay?

CountryStar, I totally hear YOU! I see the looks, thankfully not so many comments anymore (maybe they're just so darn tired of it all!) It's got to be so hard with your mom thinking you're maybe making up another excuse or something. Like I admitted above though, I think it could reinforce or even justify some of my issues, so I'm worried. I'm thinking positively that being prepared will help me work it out, if I need to - which is why it is so great to talk with others that have or are dealing with the same thing. It sounds like you've been working hard on your b'day wish. It is hard, keep up the great work so far! I think a dietician and/or nutritionist is going to be so very helpful for both the ed and celiac.

[Asillem4]

I had eating disorders for a few years in my teens / early 20's. I relapsed for a while in my late 20's. I can see where celiac disease may have had something to do with my binge / purge habit.

I've been free and clear of an ED for close to 20 years.

Now with adding celiac disease to my list of issues, a lot of people probably think I'm anorexic again. I belive it's possible for celiac disease to lead to anorexia for sheer fear of pain. I can go days without eating much just to avoid it. I won't eat at restaurants for fear of cross contamination or I'm very specific in my directions which makes wait staff think I'm a pain.

Ah well, being a woman in my 40's I don't really give a rip what other people think anymore. I am determined to be as healthy as possible with this disease, even if that means eating odd things at odd times (beans and rice for breakfast).

[rach6886]

*sigh* this post really touched me - I never post on here but couldn't help it on this one...

I did some research a while back and most of the links between ED's and Celiac were biological in nature. But as one who suffers from/battles both the psychological links are really powerful.

-ED tells me "everyone's watching what you eat" and indeed, people always ask why I can't eat certain things and every meal eaten with others inevitably involves a conversation about my diet.

-ED tells me eating is bad and then I get praised by co-workers for abstaining from someone's birthday cake "you're so good" "you have such will-power" (um...or such bad diarrhea if you must know!)

-ED tells me to obsess about food labels. Celiac makes me.

-ED tells me I shouldn't eat. Celiac makes me wish food didn't exist.

My Celiac diagnosis actually exacerbated a lurking eating disorder that had not yet surfaced in full force. I've had about 4 years of therapy for ED and it is still a daily battle. Celiac and ED are so intermingled that I can't even isolate the diagnoses anymore. I would really recommend you get treatment for the ED and process the Celiac journey as well.

also, I have a blog that discusses both if you ever want to check it out...I just posted about Celiac tonight

www.novemberblue.wordpress.com

-n.b.

[Ms Jan]

Yes, cealiac disease and ED can certainly be linked. Just to add my personal experience to the picture:

I had an ED for about five years in my late teens early twenties, later struggled with being over weight that I then finally connected with wheat flour in my late twenties. That was also when I realized that I would have near relapses to my ED whenever I had processed grain products and/or sweets. I start craving those foods like mad almost immediately after having just a small bite of them. Whereas if I stay on a diet of vegetables, fruits, nuts, meat (presently only chicken), I'm fine and have absolutely no tendencies towards ED and keep a perfect weight, neither too skinny nor too heavy, without ever going hungry.

The dr who diagnosed me with leaky gut some years ago, told me that he considered ED's linked to candida and undiagnosed food intolerances. He didn't mention celiac, but with what I've learned later I'm now convinced that a lot of ED's are in fact hidden gluten or other intolerances that make us crave exactly what we can't digest. And for some people that potential craving - and the pains of eating what is craven - results in anorexia, for others in bulimia. I don't say all eating disorders stem from food intolerances, only quite some might - and mine certainly did. It also goes to show that when I was very ill (not with ED, but poisoning symptoms such as disabling headaches, fevers and vomiting) a few years ago, what finally pointed me to the digestive problem, was that I felt fine when I didn't eat !! So finally it clicked: that it had to be certain foods making me sick, and through a lengthy process I found my way to a celiac dx.

And when the gluten free diet couldn't help me sufficiently, five months ago I went on the SCD (excluding all grains, sweets, dairy etc), and I am now SO MUCH BETTER both physically and mentally, ie as to all the usual gluten symptoms. So though I had dealt with the ED many years ago, it's like I've only now found the underlying reason for it hitting me.

Also, as someone mentionned when you can't properly absorb nutrients, your body will keep on asking for food even if full.

Thus, if you have problems with your ED while being gluten free, try to find out if you might have intolerances to other foods as well. It might be the key to, or at least part of the reason for, the ED ...

Good luck!

[heathen]

I think for those of us who have been really thin all of our lives (or not sometimes) and since we have to pay such close attention to our food, the prospect of gaining weight or not being able to control what we eat is akin to losing part of our identities. I know that I have struggled with those thoughts myself, the incessant "What if I'm not the 'thin one' anymore..." Not to mention, people can be really cruel when we do gain weight or when we eat different foods, which only reinforces the doubts. That's why I try to do everything I can to define myself by something other than Celiac Disease--it takes the focus off the food and off my body. I'm healthy, and I'm surrounded by people who support me--that is all that matters. I know I'm fortunate in that respect. Thanks for sharing your struggles.

[ilikechaitea04]

Hey There! You are not alone, I was diagnosed with Celiac in January but knew I had it long before, and recently have been diagnosed with acute anorexia and OCD.

I've always been a fruit at veggie girl (like yourself), lean meat, fish, and when I bake subbing water for oil. However, when I got diagnosed with Celiac I had to go on the yeast free diet as well to eliminate any bad bacteria overgrowths that may have occured because of the damage.

This cut out sugar even. I became so careful about what I put in my mouth that I apparently wasn't putting enough in. Then, since I was no longer bloated and in pain from wheat I got kind of addicted to feeling well. I excersized 2 times a day (lots of cardio) and vowed never to feel badly again. I was so afraid the slightest slip up would make me bloat up and feel horrible again. I wanted to be in control.

Then I got so used to eating that way and being paranoid about gluten (only eating anything after my hands were thoroughly washed and not eating anything that anyone else may have put their hands in and touched) that I went from 112 lb 18 year old to 93 lbs. Scary huh? The worst part was I didn't even realize it.

Finally when I got home from college for the summer I was feeling 100% better but was a weak little twig with no muscle mass. I took action and have begun to see a psychotherapist to get me over my fear of glutening and diet control. If you are not seeing one already, I highly recommend it, they are very VERY helpful.

Since then I have gone from 93lbs to 100lbs and on my way to my goal weight of 112 again. I eat tons of fatty things and have learned to enjoy everything I put in my mouth and not worry so much about getting glutened. My boyfriend's exact words to me were "YAY now you can get nice and fat for me." --hinting that he wants me to have a fuller more vulptuous body like I previously had. I still eat TONS of fruits and veggies and everything but I have learned to indulge and just let go of that control and just reward and enjoy myself. For me, it's about letting go of that control and accepting that what will be will be.

Good luck to you! Please feel free to e-mail me if you would like to chat! mconr2@uis.edu

[Krystens mummy]

Yes I am struggling with that myself.

I started losing weight when the gene decided to rear its ugly head.

I was getting so sick but liked being thinner I am 5 ft tall exactly and before I got sick I was 57 kg not sure what that is in pounds but was borderline overweight for my height bmi 25 or there abouts..

When I went gluten free I was 13 kilos lighter about 28 lbs i think. people commented on how great I looked and I fit into a size 8 again think thats about a 4-6 your size.

I like fruits and vegies so didn't find it hard to get addicted. I cant be tempted by most foods as I can use the excuse that they make me sick but if I thinnnnk I have put on weight I will cheat as an easy way to lose it again.

I count calories and try not to go over 1000 a day if I do I limit the nexy day to try to make it up.

I don't exercise cos I'm lazy. I check the calorie needs calculators out there to make sure i'm under not over at the moment they say I need about 1200 calories cos I live a mainly sedentary lifestyle

I have spat out food after chewing before just to get the taste but limit calories.

I weigh myself in the morning after I get up everyday cos I know this is the lowest weight I will be for the day and get stressed before period time cos I know that I will put on weight even though I know deep down that it is just fluid

CURRENTLY WEIGH 37 KILOS ABOUT 84 POUNDS AND MY BMI IS AROUND 16 -17.

I fit into a us size 0 i think. Size 6 over here falls off I could fit into a size four if they made one off of the rack. I buy kids clothes cos theyre cheaper. I know I have a problem but im addicted and I haven't been sick physically for ages cos of the amount of vitamins in my body.

[Joyzzz]

Wow...thanks to all of you! This is very eye opening.

My son age 16 yrs. I believe has a eating disorder and celiac. He is very under weight(90 lbs), small(5') and has not hit puberty. He will not stay on a gluten free diet.

As a mother, with a son who is VERY strong willed it is so hard to keep him gluten free, when he is so against it!

Any ideas?

I worry about him growing, about him gaining weight, and later health problems.

I know it helps me put all the puzzle pieces together with this forum and honest people who are willing to share!