Celiac Disease + Anorexia Nervosa?

[dizzynik242]

I am newly diagnosed Celiac. I am also in recovery from a 13 year battle with anorexia. I am finding myself slipping quite a bit with the anorexia because it is just so easy. I have a peanut/tree nut allergy and a corn/lactose intolerance on top of the celiac so a good majority of foods are off limits for me.

I am just wondering if anyone else is in this situation where they are fighting an eating disorder and the celiac disease and how they cope with it.

[Eriella]

I don't have an eating disorder, but I am/was of the school of thought that if it made me sick, I wasn't going to eat it. Because my doctor all but told me it was in my head, I thought it was, and tried to control it mentally, which in turn caused my problem to become in my head. When everything I ate made me sick, I stopped eating it (and only ate in very small quantities). Frequently because I was so "fat" (ie bloated and constipated). I tried to reduce my calories to lose weight. This caused me to lose 12 lbs in 4 months (about 10% of my body weight). Also, because of the brain fog, it took me so long to do work that I would never go out and drink or eat the greasy food that would help me put on weight.

When I finally made the connection between gluten and my problems, I found some things easier and some things harder. Because I am now actually able to go to the bathroom, I have an appetite so I am willing to eat more. However, there is a lot of food that I can't eat, so at times I just don't eat anything. The good news is that most of my food issues have been resolved by maintaining a strict gluten free diet

I would recommend seeing a therapist, if possible, to help deal with the food issues. Giving up gluten is a big deal, and if you have food issues already, it only makes them worse. Also, try to eat lots of whole foods like fruits, veggies, rice, beans, and meat. They are low calorie, low fat, and will help you build up strength.

[confusedks]

I'm not anorexic, but I do have serious self-image problems. The only thing I would say is that I completely understand the want to never eat again. I just went to an allergist today and he said I probably have a soy problem. I'm egg (in the form of omelletes, etc.) free, peanut free, dairy free and gluten and NOW he wants me to go soy free! What is there to eat? I get it! Have you tried Overeater's Anonymous. It is for anorexics, bulimics, and overeaters. It is a 12 step program to help get recovery from these kinds of things. It may be helpful for you to have support, etc. You can google Overeater's Anonymous and find a meeting in your area. Good luck!

Kassandra

[burdee]

I am newly diagnosed Celiac. I am also in recovery from a 13 year battle with anorexia. I am finding myself slipping quite a bit with the anorexia because it is just so easy. I have a peanut/tree nut allergy and a corn/lactose intolerance on top of the celiac so a good majority of foods are off limits for me.

I am just wondering if anyone else is in this situation where they are fighting an eating disorder and the celiac disease and how they cope with it.

Before my diagnoses of celiac disease, 4 related food allergies, and Klebsiella bacterial infection, I spent over 35 years using behaviors, which 2 therapists labeled 'anorexic' and 'bulimic'. I feared food. I feared 'getting a fat stomach'. I threw up after eating certain foods. I obsessed about eating and my body constantly. However after my celiac disease diagnoses, I realized my food fears and body obsessions were my way of coping with confusing symptoms, excruciatingly painful intestinal cramps, unpredictable intestinal bloating and gas, and longterm misdiagnoses, as well as treatments for conditions I didn't have. Those 'treatments' caused even more painful symptoms. During those 35 years I maintained the same weight range and mostly the same weight. I never starved myself to 'get thin' or threw up after meals to lose weight.

Just before my diagnoses I started a website for women recovering from eating disorders. After I learned I had celiac disease and other food allergies, I asked board members whether they experienced painful symptoms after eating certain foods. Many had lactose intolerance. Several also had celiac disease. Only a few could eat without painful reactions. Their responses made me wonder how many misdiagnosed celiacs are pigeonholed with 'eating disorder' labels. I also wonder how many 'eating disorder' labels prevent doctors and/or therapists from considering that their patients have GASTROINTESTINAL disorders, like celiac disease.

I now view 'eating disorder' labels as misleading as the 'IBS' diagnostic label for celiacs. I hope you will consider how your celiac symptoms may have influenced your disordered eating habits. PLEASE don't listen to ED boards or therapists who tell you that your eating disorder 'triggered' celiac disease. If anything, celiac disease influenced your disordered eating habits.

Even with gluten intolerance, peanut/tree nut allergy and corn/lactose intolerances, you STILL have plenty of choices. I have gluten intolerance and allergies to dairy, soy, eggs and cane sugar. Nevertheless I eat very well and enjoy lots of different 'safe' foods. Feel free to PM me, if you have more questions.

BURDEE

[key]

I started having problems with eating in high school. AT that time, I would go days without eating hardly anything. I lost weight, but never lost my period. My family was extremely worried. I got better in College, but then had some problems one summer. I think my problem started in high school. I was anemic and fatigued.

My problems with anorexia had seemed to be ok, but then I was really sick with celiac disease about two years ago and could hardly eat. It continued as far as feeling sick to my stomach after eating. I still never know when I will feel gross after eating. Because I have felt gross so much after eating, it has become very easy to not eat. Food isn't very appealing to me anymore and alot of times it is just so much easier to not eat and I don't even try not to eat. I think I eat enough calories, but alot of the time it is chips, chocolate, fruit, cheese and hardly any balance. I drink too much caffeine. I am also vegetarian. I am afraid of alot of food making me sick and it is so easy to not eat when there isn't anything that interests me. I can totally relate. I am not underweight right now, but I was for two years. I also ended up being very weak, miserable and having to have Iron infusions. So I try and drink Ensure when I don't feel like eating. I don't want to be sick and I have 3 little boys that need a mommy that is with it!

I would say introduce fruits, veges, ensure and realize that you should eat to be healthy.

Take care and good luck,

Monica

[key]

I started having problems with eating in high school. AT that time, I would go days without eating hardly anything. I lost weight, but never lost my period. My family was extremely worried. I got better in College, but then had some problems one summer. I think my problem started in high school. I was anemic and fatigued.

My problems with anorexia had seemed to be ok, but then I was really sick with celiac disease about two years ago and could hardly eat. It continued as far as feeling sick to my stomach after eating. I still never know when I will feel gross after eating. Because I have felt gross so much after eating, it has become very easy to not eat. Food isn't very appealing to me anymore and alot of times it is just so much easier to not eat and I don't even try not to eat. I think I eat enough calories, but alot of the time it is chips, chocolate, fruit, cheese and hardly any balance. I drink too much caffeine. I am also vegetarian. I am afraid of alot of food making me sick and it is so easy to not eat when there isn't anything that interests me. I can totally relate. I am not underweight right now, but I was for two years. I also ended up being very weak, miserable and having to have Iron infusions. So I try and drink Ensure when I don't feel like eating. I don't want to be sick and I have 3 little boys that need a mommy that is with it!

I would say introduce fruits, veges, ensure and realize that you should eat to be healthy.

Take care and good luck,

Monica

[kevieb]

dizzynik---i have 3 daughters with celiac disease. a 12 year old and 16 year old twins. one of my twins is a purging anorexic. she spent 3 months in the hospital last year. she had dropped to 67 lbs and was hoping to starve herself to death. her potassium was low, her cholesterol was high and her heart rate would drop pretty low when she was asleep----they kept her on a heart monitor for 2 weeks. she spent the next 2 1/2 months at seattle children's hospital in their ED program. they assured me they knew what they were doing when it came to a gluten free diet---even when i told them i thought she was getting gluten. she came home with her Ttg levels over 100--they were only 12 when she went into the hospital. i think it prompted them to re-assess their kitchen staffs ability to feed a gluten free child.

my daughter has had her ups and downs during the last year. i thought we might have to put her into treatment again over the winter, but she managed to put weight back on. she has her set backs, but she seems to be doing well at the present time.

i think it can be more difficult to battle an eating disorder when your diet is restricted for other health reasons. my daughter used to cry when she was about 4 or 5 years old because she was afraid she would get fat-----she has always been very small and underweight. back then, i hoped that she wasn't headed for an eating disorder.

my heart goes out to you.

[Guest Doll]

I am glad this was posted. Research is showing that anorexia may be a sign of undiagnosed Celiac *in some cases*.

I actually developed anorexia for about 6 months prior to my dx. I never thought I was fat (I have always been fairly thin), but I knew I felt better when I didn't eat (duh!). I was sick as a dog (weak, tired,) and hated eating. Plus, I would have severe low blood sugars and hated having to risk having a seizure everytime I took some extra insulin for food. It was a nightmare. I was given Xanax. That really solved the problem!

I do agree that although most people with anorexia likely *do not* have Celiac, I bet a subset does. And some new research supports this.

It only makes sense to avoid eating if you feel sick afterwards, even if you're not sure how or why. It may be conscious or unconscious.

Please know that an eating disorder can KILL you. A friend of mine died alone in her bathroom in her early 20's. Her parents found her. You do not want to go like this, and I hope by sharing her story, you will think twice. That is what she would want.

Look at eating as a fuel plan for your body. Plan out healthy small meals throughout the day, and EAT at each meal, even if you don't want to. Eat foods you like. Ex.

Breakfast:

gluten-free toast with PB. Western Omelet with salsa.

Snack: Peanuts and raisins.

Lunch: gluten-free soup. gluten-free grilled cheese sandwich (half).

Snack: Apple, cheese cubes, gluten-free crackers. Small piece of chocolate.

Dinner: Fish or chicken breast, salad, veggies, gluten-free roll if desired.

Snack: Small bowl of gluten-free cereal.

*Please* get help now to get back on track. Your body is not your enemy.

I know what it's like to not have an appetite. I also struggle with this since being dx'd. My appetite has never been the same, and I hate most gluten-free replacement products. Know you are not alone in not wanting to eat.

[loraleena]

I was anorexic in college and struggled with body image for years. I got much better when I met my ex-husband in 92 who thought I looked great with a little meat rather than so skinny. It was having my son that really made me wake up and let that BS go! Or so I thought. A couple years ago before my gluten intolerance discovery I got very sick. I was put on an anti candida diet that caused me to lose 15 pounds in 2 months. I got down to 117 at 5' 9" which was pretty thin and people actually asked me if I was starving myself. I was really worried and kind of wanted to regain some but also started to get that old feeling of getting off on being super thin. After being diagnosed I gained back 13 in 2 months and am now 130. I am a healthier weight and everyone says I look great. But, even though before all this happened I was happy at 130 or 135,now it feels fat. It seems that rapid weight loss put me back in that mode. I can't go without eating because I have low blood sugar and I will not hurt my body like that again, but I still struggle with that poor body image. I believe my anorexia in college hurt my body in many ways that I am dealing with today - mentally and physically.