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CD Sufferers And Eating Disorders
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As a celiac have you ever had;   41 members have voted

  1. 1. As a celiac have you ever had;

    • Anorexia
      7
    • Bulemia
      2
    • Anorexia and Bulemia
      6
    • Compulsive eating
      8
    • Pica (eating non-edible substances)
      0
    • None, normal eating (gi distress not a consideration here)
      18

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19 posts in this topic

Sorry for another poll. I really appreciate the answers to such a sensitive issue. There has been some links between celiac disease and the correlation of eating disorders, however, this has been far under researched and that needs to be rectified.

Thank you for you answers and feel free to share you personal experience or opinion as this will help to bring to light extraneous factors that need to be considered.

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I haven't had any, but can definitely see how Celiac disease could lead to one. Though I don't have any other useful info. =)

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I'll be interested in seeing results of this poll. Before I learned I had celiac disease, I created a website for people who have struggled with 'disordered eating' (ED habits which I don't consider a 'disease') and are now committed to recovery. So I moderate that website for almost 40 members.

Since I've corresponded with other celiacs and posted here, I can see how reactions to celiac symptoms can be considered 'eating disorder' habits. For example, I and others have delayed eating as long as possible, even when we were very hungry, to avoid painful or uncomfortable symptoms. That could be considered anorexia. (My celiac disease symptoms were excruciating abdominal pain as well as bloating, gas and constipation.) I and others have thrown up after ingesting foods which gave up symptoms. When I eliminated dairy (to which I also have autoimmune/antibody reactions) I no longer had 'instant reflux' (foods just came up after meals) after consuming dairy. That throwing up after meals could be considered 'bulimic' purging. Furthermore, many celiacs have felt addicted to the very foods to which they were intolerant and many 'binged' on those foods when they learned they had to abstain in a kind of 'last supper' mindset. That could be considered bulimic 'bingeing'. Research on opiate peptides from gluten 'digests' suggests that people who don't tolerate gluten can leak those undigested gluten peptide molecules from their gut into their bloodstream. Those gluten 'digests' can then stimulate the opiate receptors of the brain, just like morphine. That can make consuming gluten seem very addictive, one of the therapeutic 'hallmarks' of eating disorders.

Mballerina: What motivated you to create this poll? What is your experience with 'disordered eating' habits?

BURDEE

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I don't have and never had any.......but celiacs often develop aversions to food not because of weight, but because of what food has done to them and how celiac disease and gluten-containing food have given them both physiological and psychological.....symptoms.....depression, abdominal pain, diarrhea......I think that could turn anyone away from food.......I've never been a food person, but I just eat because it's something that has to be done to stay healthy.....

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Hello, I have had anorexic like behavior in my life, but not as a result of stomach pains ( I don't get stomach pains), but as far as being told to gain weight, and thinking I'm okay with gaining weight, but once I do, I restrict my eating to get my weight back down b'c I don't like gaining 5 pounds or whatever. I also weigh myself EVERY day. :( I know a little compulsive eh? I was a ballet dancer though, and still have that mind set to stay thin.

Rachel

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Speaking of compulsive weighing, I still weigh myself morning and evening. Ruth

Strack2004, There's another Ruth around.

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I used to weigh myself daily -- when I started eating gluten-free -- but that was cause I was desparate to see improvement, even if just two tenths of a pound gained on the digital scale......I haven't weighed myself in weeks and have no desire to see that I've remained the same or lost half a pound.

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Ive suffered from eating disorder for some years now. As a kid I compulsivly ate, and my mum wondered at times if I had Coeliacs. Then as a teen I dropped wieght, clinical anorexia nervosa. It was after a time of severe starvation, when I started eating again, that I started to have really bad problems with gluten. It feels almost like my eating disorder lead to my digestive problems.

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It feels almost like my eating disorder lead to my digestive problems.

Well, might have. Read on here, some people with the genes for Celiac Disease, or a gluten intolerance, may never have problems in their life. Sometimes something needs to trigger it.. and maybe your eating disorder did that.

If I understand it correctly. So, the eating disorder didn't cause it.. but might have triggered it.

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Actually I would say it's the other way around ... undiagnosed celiac disease symptoms often lead to 'disordered eating' behaviors. I've heard from many celiacs who avoid eating for long periods to avoid the inevitable uncomfortable (and even painful) symptoms. That could be considered 'anorexic' starving by people who don't understand celiac disease. Also many celiacs vomit after meals in which they have consumed gluten containing foods or anytime their symptoms are nauseating or painful. That could be considered 'bulimic' purging. According to 'gluten digests as opiate peptides' studies, people who don't tolerate gluten (or casein) are compulsively attracted to eat the very substances which harm their bodies. That attraction may be considered 'eating addiction' by people who don't understand celiac disease. I personally have used all those 'disordered eating' behaviors in attempt to cope with undiagnosed celiac symptoms. My 'starving' and 'purging' were not related to any desire to lose weight, but those were ways I reacted to excruciatingly painful symptoms before I knew gluten/casein/soy ingestion caused my symptoms.

However, I have also met people whose doctors dismissed their celiac disease symptoms as results of their 'disordered eating' behaviors. Overeating can certainly cause indigestion, acid reflux and even bloating. But those symptoms should not continue when someone tries to eat moderately. Moreover, binge eating or even purging cannot make someone gluten intolerant. <_<

BURDEE

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Burdee, I totally agree with you. I have read the research in many studies, some note even related to eating disorders, some even on autism and other such things and it paints the picture that you are presenting. There are some interesting things that happen in the brain with neurotransmitters. Unfortunatly a alot of these studies are in there infancy. I have also experienced this pattern and can say that for me these facts are true.

Thank you for your post, it is wonderful.

Magdalena, CDA

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Actually I would say it's the other way around ... undiagnosed celiac disease symptoms often lead to 'disordered eating' behaviors.

Rereading the post I responded too, nix my response. The one by Burdee sounds more likely. =)

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I have read the research in many studies, some note even related to eating disorders,

Do you have any more infrmation on that research? Links or who published it? I would be interested to read it if you do. Doctors Ive talked to havent known of any reaserch into this area, or any concrete links.

I dont think that you will be able to convince me that my eating disorder was purely a result of undiagnosed coeliacs. There are far too many other issues involved. It is interesting though, I can certainly see that my compulsive eating as a child could well be related to undiagnosed problems, especially as it was often bread, pasta, and wheat containing things that I would binge eat. 4

However there is a difference between anorexia (loss of appetite = due to physiological reasons) and Anorexia Nervosa ('Nervous' loss of appetite = due to psychological reasons). I never just lost my appetite, I worked insanely hard to lose wieght, and pushed my body through hell, not because of physical discomfort, but because of emotional reasons.

Reading through what people have written here, I see things like "adversion to food" and "anorexia like symptoms". That sounds like anorexia to me as in loss of appetite, possibly sub-clinical anorexia, rather than anorexia nervosa or bulimia nervosa which are psychological problems and dispite what anyone says thier cause and focus is not food.

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I agree that that anorexia nervosa has multifactorial causation as all psychological phenomena do. No one disputes the fact that there is not an emotional component and such. However, there is an interesting possibility between this emotional factor being further stressed by discomfort and pavlovian conditioning. For anyone to say that celiac disease could be the one cause of anorexia nervosa would be wrong, just as even now there is no concrete causation for this disease.

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I wasn't trying to suggest all anorexic or bulimic behaviors are 'caused' by undiagnosed celiac symptoms. I moderate a website for people with 'disordered eating' behaviors which include bingeing, purging, starving, compulsive overeating and chronic yoyo dieting cycles. Only a few of over 40 members have described symptoms which could be celiac related. Certainly bulimic myths (such as using purging to compensate for overeating) and food rules (according to what the latest diet says will make you 'fat') influence people's choices to use those 'disordered' behaviors to cope with body image and weight problems. Others use those behaviors to distract themselves from other unpleasant situations or relationships in their lives. However diagnosed celiacs who have used 'disordered eating behaviors' might consider how their undiagnosed celiac symptoms influenced their choice to use eating behaviors rather than drugs, alcohol, nicotine or other addictive substances or activities, when they were stressed.

BURDEE

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I have been gluten-free for almost two years and a year before being diagnosed, I had to go to an eating disorder clinic for bulemia. Even before that I was anorexic....but didn't get any help for that. During this summer I've been making myself throw up a LOT again...more than I did before....I've slowed down recently...and have gained weight. I'm so depressed and wish my weight would just stay what it was before I was diagnosed: 105. I'm 5'1" and now weigh 115. 10 lbs is a lot on the petite frame I have...and although no one else agrees with me...I think I'm really fat. I get so depressed and hate myself when I do eat so I throw up. I don't feel much better than I did before going gluten-free...I don't have as many stomachaches...but am still tired and bloated all the time. Does anyone else feel like staying on the gluten-free diet is not worth it? I weighed 10 lbs less before I tried to get myself off gluten...but now I've gained weight and it's ruining the self esteem I gained from therapy. My depression affects everything in my life...and I don't know what to do anymore. I watch what I eat and recently bought Slim Fast (is that gluten-free???) so I could try to lose weight the "healthy" way. But so far I've had no luck. I feel like if I was thinner I would be so much happier...and I know I would be. I felt so much better about myself when I was only 105 lbs. Now all my clothes are tight to the point I don't want to wear them because they're so uncomfortable...some I can't even get over my big booty. On the edge of a serious meltdown again...and don't know what to do. Any help? Just wish I could lose the weight........

Rachel

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I'm 5'2", so I know what you mean about 10 pounds being a lot on a small frame. But based on what you said in your post, it sounds like you're dysmporphic (I am to a degree, but not enough to cause an eating disorder, just enough to play with my thinking), and you may find the most help from a psychologist who can help you reorient your thinking towards being healthy. That's not to say you _can't_ lose any more weight (though 105 is getting down there...), but seeing someone who specializes in body image may help you reorient your thinking to a more biologically and psychologically heathy path.

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This is one of the most interesting topics I've read here so far---it's such an important question but it's surprising how little research has been done about it. I'd like to add some things (I was going to say "weigh in" but...)

I've had celiac disease for at least ten years but was only diagnosed about four years ago. I'm a psychologist but I have absolutely no training in eating disorders. When I was symptomatic and in school, physicians and professors convinced me that it was all psychosomatic. Anyway, when I finally got diagnosed I got really interested in the psych research about celiac disease. On a more personal note, I definitely picked up disordered eating after being diagnosed. My girlfriend at the time happend to specialize in eating disorders and she tore her hair out, watching me avoid eating. I never had eating problems before celiac disease.

I now work with a lot of people with celiac disease in psychotherapy and I've collected data about eating habits and other issues. I can't get the studies published in journals mainly because I have a small sample, but also because journal editors don't seem interested in celiac disease. So I'm guessing that there actually is research about eating disorders and celiac disease, but it hasn't been published. I once did a literature review on every study ever published on celiac disease and couldn't find a single one that mentioned eating disorders. (If I missed something, please let me know).

This is just my opinion, but I don't think disordered eating that is caused by celiac disease is the same kind of thing as anorexia, bulemia, binge-eating, etc. If the world was more friendly to celiacs, I think you'd see fewer eating problems among us and just as many people with eating disorders. So in a way, I think disordered eating among celiacs comes from the fact that we have fewer choices, more restrictions, and less understanding from people who are not celiac disease.

Just my opinion, though.

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I've got to agree with that sentiment. Sometimes it is easier to avoid eating than get contaminated when you can't be certain about what you're having. But figureing out where it crosses the line from being "safe" to being "obsessive" is a tough one when it's something that can make you so ill! (Just sympathizing here.)

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    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
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    • If this is helpful: My local public library had a copy of Breaking the Vicious Cycle by Elaine Gottschall.  There is a Facebook group, I believe it is easily found by searching SCD Diet, and it's a closed group.  If you go directly to the official website of Breaking the Vicious Cycle, there's lots of information for free available, including the basics about the intro diet and beyond.  I would go to the original source of this diet rather than go to other groups/books who have perhaps veered away from Elaine Gottschall's fundamentals. Best wishes to you!
    • AdrienJ, thank you so much! I dream of traveling more one day. I have spondylitis too. I'm so glad that a gluten free and casein free diet is helping you feel your best!
    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
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