Binge eating disorder and celiac disease

[Hannah9]

I was diagnosed with celiac disease back in August 2019. Prior to my diagnosis I was struggling with a severe eating disorder, switching back and forth from binging and purging to starving myself. I gained 20lbs in 3 months but I’m now down 30lbs since then. And that didn’t happen by following the diet and taking care of myself.. I will starve myself and then binge on pizza or fast food and sometimes purge after. And obviously I end up in excruciating pain and sick from the gluten. I have recently become extremely ill, no energy, constant bloating and cramping, anemic, hypo thyroidism etc. To the point my family has become aware and is very concerned. As well as my doctor looking into possible crohns or cancer. My fiancé knows about my eating disorder and is trying his best to help me but I hide it from him. I know this is crazy and I’m essentially killing myself. I don’t know what’s wrong with me. This started in September 2018 and I stoped when I got my positive blood test but when I had to eat gluten before my scope I completely relapsed and haven’t been able to fully stop. I’ve been seeing a psychiatrist and psychologist and they put me on vyvanse which makes me feel completely out of sorts mentally but gets rid of my appetite completely. This has gotten to the point where I’m wondering if I should be checking myself in to an eating clinic or something. This has consumed me entirely and I’m not sure how to get this under control.. 

[cyclinglady]

Hannah, 

I am sorry that you are struggling.  Please contact your doctors right away.  Tell them what you have shared with us.   I am sure they can determine if you need to be admitted for your eating disorder.  You need help! 
 

I care.  Celiac disease is a serious disease.  Untreated, it can cause cancer or another illness like Crohn’s.  Please, please get help. 

[trents]

Ditto. It sounds like to me you may need inpatient care to help you manage your various issues and get them back under control. And hiding your current struggles from your fiance is probably not good for the health of the relationship, though I understand there is probably a strong element of shame in this.

[knitty kitty]

Hannah9,

It's vitamin and mineral deficiencies.  Google "anorexia bulimia vitamin deficiencies".  

I had vitamin and mineral deficiencies and I can say from experience that vitamin and mineral deficiencies affect your appetite and eating habits.  I struggled with binge eating.  You're not alone.  Mine resolved with vitamin and mineral supplementation.  Checking for nutritional deficiencies is part of follow up care for Celiacs.

Here's a helpful article....

http://orthomolecular.org/resources/omns/v04n02.shtml

Hope this helps.  

 

[Posterboy]

Hannah9,

Knitty Kitty has given you good advise.

Dry Beri Beri causes us to lose weight....it (Beri Beri) is common in Anorexia.

Try going low Carb.....it is a diet that requires less Thiamine....

Also take some Epsom Salt baths.....it helps with fatigue by transdermally absorbing Magnesium through your skin....it will help your body utilize Thiamine as well.

Loss of appetite and fatigue is one of the signs of a Thiamine Deficiency...

https://www.healthline.com/nutrition/thiamine-deficiency-symptoms

Try taking Benfotiamine  a Fat Soubule B-1 with meals, add to that an Enymic B-complex and Magnesium Glycinate (again to help fatigue) and help your body convert the Thiamine (B-1) you will be taking to an active form in the body.

And I think it will help you. Here is the research on the connection of Anorexia Nervosa prevalence and a Thiamine deficiency.

https://pubmed.ncbi.nlm.nih.gov/11054793/

It occurs a rate much higher rate than most doctor's understand.

The one doctor that gets it is Dr. Lonsdale..... here is a nice article by him on the Hormone Matter's website.

A long time researcher on Thiamine deficiency and Beri Beri.....

http://www.hormonesmatter.com/thiamine-deficiency-causes-problems/

I could go into the technical reasons this is possible but I don't have time tonight.

Maybe this will help point you in the right direction.

I hope this is helpful but it is not medical advise.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy,

[DJFL77I]

On 7/17/2020 at 4:33 AM, knitty kitty said:

Checking for nutritional deficiencies is part of follow up care for Celiacs.

 

 

tell that to my chit doctor

[Meg135]

I have celiac. I am definitely on the disordered eating spectrum with a history of restricting, bingeing, and purging. The bingeing got bad enough so I entered into ED treatment. 
 

I found answers in a book. They may not be the answers you want to hear, but if you are serious about wanting to heal then it may help. 
 

F*ck It Diet by Caroline Dooner

https://www.amazon.com/Diet-Eating-Should-Be-Easy-ebook/dp/B07C685Q6L

 

[Mrayele]

Hannah9-

I can completely relate. I have engaged in the same behaviors and it was completely compulsive. I ended up going to inpatient treatment for my eating disorder (which I had suffered from for 10 years, only 3 of which was after my diagnosis of celiac)

something that I learned is that since gluten has a neurological and psychological effect on people with celiacs, once you hit a month or so abstaining from ED behaviors it becomes much much easier. I know it seems impossible now because I have absolutely been there but it’s been over a year for me now and I feel much better. I know you can do it too. I also know how hard it is at first.

if there is any way at all for you to go inpatient, do it. Celiac adds another dimension of difficulty to what is essentially a very dangerous addiction and when you have support it’s much more possible to ‘detox’. I believe in you (but i also would have been skeptical if someone told me this before I got treatment so please— believe in me). 
 

-Mary

[Scott Adams]

My concern is that in-patient facilities like hospitals and elderly care facilities are notoriously bad in dealing with the gluten-free diet. If you go this route be sure they can handle this properly for you.

[RMJ]

There is a great book on eating disorders for patients and their loved ones, it is called The Golden Cage by Hilde Bruch.  I would recommend it for your fiance.  It will help him understand.

If you go the in-patient route, be sure they are convinced of your celiac diagnosis so they don’t think you are refusing (gluten) food because of your other eating issues.

If your doctor is looking into Crohns or cancer, does he know you have an eating disorder that could explain your weight loss?

I hope you find answers.  Please follow up and let us know how you do.

[trents]

Hannah9,

I just want to add, don't be afraid to advocate for yourself with medical professionals. It is really important to be assertive when you feel they are not hearing you or are blowing you off. Push back when you feel this is happening. They are busy people and tend to treat in a formulaic way unless you push them to go deeper.

[Posterboy]

Hannah9,

I will try and be quick....I have other things I need to do tonight.

I found an article about your situation.

Entitled "An eating disorder leading to wet beriberi heart failure in a 30-year-old woman"

It doesn't mean you will have heart failure....but eating disorders (as you know) are very serious and the underlying cause needs to be found....or it will repeat itself.

https://www.researchgate.net/publication/233535968_An_eating_disorder_leading_to_wet_beriberi_heart_failure_in_a_30-year-old_woman

I don't know why the links are not activating....just copy and paste into a browser to read.

This Readers Digest article might help you too!

https://www.msn.com/en-ca/health/medical/11-silent-signs-of-a-thiamine-deficiency/ar-AAGujf0

I will note just two of the signs (often) going undiagnosed of a Thiamine deficiency in an eating disorder.

Quoting the Readers Digest article.

"Your muscles are weak or you're losing weight

"Deficiency of thiamine is known as beriberi," says Andrews. "When we don't get adequate thiamine from a lack of it in our diet or for other reasons, metabolism of glucose is affected—and we may experience muscle weakness, fatigue, memory loss, loss of appetite, and weight loss." If untreated, beriberi can in extreme cases cause congestive heart failure or death, according to the National Institutes of Health (NIH).

You're not hungry

"Thiamine plays a role in the brain's hypothalamus, a gland that controls appetite and hunger," says Andrews. "When there is a thiamine deficiency, the brain thinks it's full and loss of appetite may occur." Find out the ways your body is telling you that you're running low on key vitamins."

And since the links are not working (for me currently) I will post again the frequency/prevalence of a Thiamine Deficiency in Anorexia Nervosa in case you don't get to follow the link or someone else who might be following this thread might see how prevalent it is in Anorexia and the Doctor's are  not making the association.

https://www.researchgate.net/publication/12271503_Prevalence_of_thiamin_deficiency_in_anorexia_nervosa

quoting from the article...

"All subjects underwent measurement of erythrocyte transketolase activation following the addition of thiamin pyrophosphate, the standard biochemical test for thiamin deficiency. Deficiency was defined as a result more than 2 SD above the mean of the control population. Fourteen patients (38%) had results in the deficient range; (for Thiamine)......Thiamine deficiency may account for some of the neuropsychiatric symptoms of AN and routine screening or supplementation may be indicated."

You should run....not walk to a health food stood and find some Benfotiamine to begin taking with the meals you are  eating.

Note the earlier points I made about taking it with an Enyzmic B-Vitamin and Magnesium Glycinate.

Magnesium is especially good for fatigue and energy.

I hope this is helpful but it is is not medical advise.

As always 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

I truly hopes this helps you and you come back and update us if it does....when and if you begin to feel better.

Posterboy by the grace of God,

[Kate1990]

 Hannah,

I'm so sorry that you're going through this. Although every situation is different, I hope that by sharing my experience I can make it just a little bit easier for you and give you hope, because even though it's hard to see right now, there absolutely is hope.

I had a similar eating disorder for 15 years and tried everything to get it under control. I was in therapy for almost 10 of those years to learn coping skills, emotional regulation techniques, etc. Nothing worked and my disorder was all-consuming, I was completely desperate.

It stopped progressively when I started taking the vitamin and mineral supplements I needed. Celiac disease had impacted my health so much that my body was simply trying to survive. It might take a little bit of time to find exactly what is happening in your body, but don't give up - all the effort will be worth it.

There is nothing wrong with you. It's not about willpower or intelligence or anything like that. You'll find how to heal your body and in the meantime, we're all here for you.

Hang in there ❤️

Viv