Newly diagnosed/coeliac + eating disorder(tw)

[swiftie-13]

Hi!

 

TW - eating disorders, pls do not read if you will be affected or triggered at all (no numbers mentioned, just how complicated an ed and coeliac is together).

So I finally got my biopsy results back last week, and am confirmed coeliac.

I'm also at a halfway point in my eating disorder recovery (anorexia), as in kind of making good choices 50% of the time and better physically, but 50% of the time making not so great choices as I'm still rather battling with the same disordered thoughts.

 

Along came coeliac, unexpectedly as I don't have classic/major symptoms, & it's definitely interfering with my ED. It's quite difficult to try new foods, and I feel like I'm back at square one with my recovery, if I can even call it that now. An aim was to stay away from reading labels, but obviously that's something I have to do as coeliac. It's all too easy to skip meals or snacks, as "I can't have that, it's got gluten in it" is a real excuse. And a lot of foods that became "safe" in my recovery, I can't eat now as they "may contain gluten" 😭 And I don't really want the gluten free alternatives, as 1. It's quite a big deal to have to trial and error lots of new foods, as someone with my history of anorexia and 2. I'm so set on just eating "raw" or unprocessed foods now. I know that's disordered... but I'm just scared lol. Also, my solution is to chew and spit gluten foods, so I can still have my safe foods... I know that's also bad and I'll still be consuming some of the gluten, but I'm just overwhelmed tbh! 

I think part of this is also having read that some people report of weight gain once starting a gluten-free diet, and again, not the kind of thing you want to hear in ed recovery when you've already had to gain/maintain a healthy weight. 

 

Is this something a dietitian would help me with? Or would they be more bothered about following the coeliac diet, as opposed to helping me with my ed too? I'm thinking maybe I need to get more ED support, as I was discharged but obviously now have this to deal with!

I've only been diagnosed officially for a week though, I do hope this gets easier and I can be less restrictive and less "clean eating" about it all 😭

[trents]

Welcolme to the forum, swiftie-13!

It might be helpful for you to know you don't have to concern yourself with the burden of finding acceptable gluten-free processed foods in order to eat gluten-free. Generally speaking gluten-free processed foods are much more expensive and less nutritious than their "wheat" counterparts. Judging by the way you spelled "coeliac" you must be in the UK so I can't speak for the regulations there that govern standards for the food industry. But here in the US, gluten-free flours are not required to be fortified/enriched with vitamins as are their wheat counterparts and so there is a lot of nutritionally empty, starchy calories in gluten-free processed baked products. But you can eat gluten-free and healthily if you focus on purchasing fresh, simple foods like fresh meat, vegies and fruit and are committed to cooking your own meals. 

Also, and maybe more importantly, I'm sure I have seen studies cited on this forum that show a link between vitamin/mineral deficiencies and ED, i.e. that vitamin and mineral deficiencies can not only result from ED but also cause them. You might want to do some research on this. Are you taking any vitamin and mineral supplements and if so, specifically what? And are they gluten-free. Wheat starch can be used as filler in pills. Perhaps some other forum members can shed more light on this.

Another part of this I believe is for you to discover some gluten-free treats that are delicious! They do exist. Part of this is that over time the brain/taste buds need to be reprogrammed to accept gluten-free foods as the new norm. They will taste different but different is not the same as worse. But it takes time.

Please forgive me if in my suggestions I have come across as treating your ED superficially. I do not have an ED and I can't pretend to fully understand it. But I do know it is a very complex phenomenon. And like most complex phenomenon, I'm sure it is true that it needs to be approached from several different angles.

Edited August 26, 2022 by trents

[RMJ]

I was never diagnosed with an ED, but I think I was awfully close to having anorexia. I would suggest getting more ED support, because a major change has been made in what you can eat, and I think the ED part of eating is a lot more complex than the gluten free part.

Perhaps if you tell us some of your safe foods we can help evaluate if they “may contain” or “do contain” gluten, or could recommend gluten free alternatives that taste/feel similar?

[knitty kitty]

Welcome to the forum, @swiftie-13!

Thiamine deficiency can cause anorexia.  One of the symptoms of Thiamine deficiency is lack of appetite. 

I found relief by following the AutoImmune Protocol Diet and supplementation with high dose Thiamine.   No labels to read if you don't buy processed foods.   

https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

Chandler Marrs and Derrick Lonsdale

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

And...

Thiamine Deficiency Induces Anorexia by Inhibiting Hypothalamic AMPK

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3995829/

And...

Thiamine Deficiency in Adolescents with Eating Disorders: A Prospective Cohort Study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7284657/

And...

Prevalence of thiamin deficiency in anorexia nervosa

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

And...

Psychosis In Anorexia Nervosa: A Case Report and Review of the Literature

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6933101/

And...

An audit of the changes in thiamine levels during higher caloric nutritional rehabilitation of adolescent patients hospitalised with a restrictive eating disorder

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7460783/

Been there done that over it

[swiftie-13]

19 hours ago, trents said:

Welcolme to the forum, swiftie-13!

It might be helpful for you to know you don't have to concern yourself with the burden of finding acceptable gluten-free processed foods in order to eat gluten-free. Generally speaking gluten-free processed foods are much more expensive and less nutritious than their "wheat" counterparts. Judging by the way you spelled "coeliac" you must be in the UK so I can't speak for the regulations there that govern standards for the food industry. But here in the US, gluten-free flours are not required to be fortified/enriched with vitamins as are their wheat counterparts and so there is a lot of nutritionally empty, starchy calories in gluten-free processed baked products. But you can eat gluten-free and healthily if you focus on purchasing fresh, simple foods like fresh meat, vegies and fruit and are committed to cooking your own meals. 

Also, and maybe more importantly, I'm sure I have seen studies cited on this forum that show a link between vitamin/mineral deficiencies and ED, i.e. that vitamin and mineral deficiencies can not only result from ED but also cause them. You might want to do some research on this. Are you taking any vitamin and mineral supplements and if so, specifically what? And are they gluten-free. Wheat starch can be used as filler in pills. Perhaps some other forum members can shed more light on this.

Another part of this I believe is for you to discover some gluten-free treats that are delicious! They do exist. Part of this is that over time the brain/taste buds need to be reprogrammed to accept gluten-free foods as the new norm. They will taste different but different is not the same as worse. But it takes time.

Please forgive me if in my suggestions I have come across as treating your ED superficially. I do not have an ED and I can't pretend to fully understand it. But I do know it is a very complex phenomenon. And like most complex phenomenon, I'm sure it is true that it needs to be approached from several different angles.

Thanks for the response! 

That's why I don't really want gluten-free alternatives, as I can't see the point in consuming something that's not of any nutritional value. But I think it's important to challenge myself to those treats from time to time, or else it would be a very restrictive mindset to only eat whole and clean allllll the time! Guess that's something to work on, and as I am at the start of this journey, I'm sure its normal to be overwhelmed 😊

[swiftie-13]

17 hours ago, RMJ said:

I was never diagnosed with an ED, but I think I was awfully close to having anorexia. I would suggest getting more ED support, because a major change has been made in what you can eat, and I think the ED part of eating is a lot more complex than the gluten free part.

Perhaps if you tell us some of your safe foods we can help evaluate if they “may contain” or “do contain” gluten, or could recommend gluten free alternatives that taste/feel similar?

This reply really made me realise that it's more the ED part of eating, rather than the gluten free part itself... so thanks for making me realise that! That's where the difficulty lies I believe, and going gluten-free has just amplified it. Got some things to work on i think...😅

[swiftie-13]

4 hours ago, knitty kitty said:

Welcome to the forum, @swiftie-13!

Thiamine deficiency can cause anorexia.  One of the symptoms of Thiamine deficiency is lack of appetite. 

I found relief by following the AutoImmune Protocol Diet and supplementation with high dose Thiamine.   No labels to read if you don't buy processed foods.   

https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

Chandler Marrs and Derrick Lonsdale

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

And...

Thiamine Deficiency Induces Anorexia by Inhibiting Hypothalamic AMPK

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3995829/

And...

Thiamine Deficiency in Adolescents with Eating Disorders: A Prospective Cohort Study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7284657/

And...

Prevalence of thiamin deficiency in anorexia nervosa

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

And...

Psychosis In Anorexia Nervosa: A Case Report and Review of the Literature

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6933101/

And...

An audit of the changes in thiamine levels during higher caloric nutritional rehabilitation of adolescent patients hospitalised with a restrictive eating disorder

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7460783/

Been there done that over it

I have had regular blood tests due to my ed, but it did not begin with a thiamine deficiency, rather it's thought to have been the result of trauma & other psychological causes! 

Definitely can be the case in some instances, but unfortunately, it's deeper for me😅🤣

[knitty kitty]

2 hours ago, swiftie-13 said:

I have had regular blood tests due to my ed, but it did not begin with a thiamine deficiency, rather it's thought to have been the result of trauma & other psychological causes! 

Definitely can be the case in some instances, but unfortunately, it's deeper for me😅🤣

I hear what you're saying.  You're not alone in having suffered from deep psychological causes of trauma.  I've been there.  Read my blog for more of my story.

The brain uses as much Thiamine just thinking as a marathon runner's muscles use in a race.  

Emotional stress and trauma can use a great deal of Thiamine.  Physical trauma and illness, diarrhea, and vomiting can cause a deficiency in Thiamine.  

Thiamine deficiency does have an effect on the brain causing behavior changes.  These same behavior changes can be due to other causes.  However, doing the WHO test can quickly discover if Thiamine will improve your situation.  

This article.... 

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

....explains in part the psychological changes that can affect the brain in Thiamine deficiency.  

I experienced severe thiamine deficiency while an undiagnosed Celiac.  The doctors did not recognize what it was.  They are only familiar with Thiamine deficiency in alcoholism.  When I insisted I did not drink, the doctors wrote me off as "depressed", and "hypochondriac".  Doctors are trained in prescribing pharmaceuticals.  Doctors are not trained in vitamins and their importance in human biology.  I was.  I'm a microbiologist.  I took high dose Thiamine and my physical health and my brain health/mental health improved dramatically.  

Thiamine is water soluble.  Excess thiamine the body doesn't need is excreted in urine.  There is no toxicity to thiamine.  Thiamine Hydrochloride is relatively cheap and readily available.  Blood tests are not a reliable measure of Thiamine because it reflects how much you've consumed in the previous twenty-four to forty eight hours.  Blood tests don't measure how much Thiamine is inside cells where it is actually used.

I did the WHO test and experienced improvement within hours.  The improvements continued for months as sufficient Thiamine allowed my body and my brain to function properly.  

Another symptom of Thiamine deficiency is "Sailor's asthma".  Thiamine supplementation has been shown to improve asthma.  

Give your body another source of the vitamins it craves.  Gluten containing grain based processed foods are required by law to be enriched with vitamins and minerals lost in processing.  Your body craves the vitamins in the gluten foods.  Give your body the vitamins without the gluten and your body will quit craving gluten.

Give your body the vitamins it craves by supplementing with a B Complex supplement, extra thiamine, and magnesium among others.  Talk to a Celiac savvy nutritionist.

Edited August 27, 2022 by knitty kitty
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[rev22]

On 8/26/2022 at 1:37 PM, swiftie-13 said:

Hi!

 

TW - eating disorders, pls do not read if you will be affected or triggered at all (no numbers mentioned, just how complicated an ed and coeliac is together).

So I finally got my biopsy results back last week, and am confirmed coeliac.

I'm also at a halfway point in my eating disorder recovery (anorexia), as in kind of making good choices 50% of the time and better physically, but 50% of the time making not so great choices as I'm still rather battling with the same disordered thoughts.

 

Along came coeliac, unexpectedly as I don't have classic/major symptoms, & it's definitely interfering with my ED. It's quite difficult to try new foods, and I feel like I'm back at square one with my recovery, if I can even call it that now. An aim was to stay away from reading labels, but obviously that's something I have to do as coeliac. It's all too easy to skip meals or snacks, as "I can't have that, it's got gluten in it" is a real excuse. And a lot of foods that became "safe" in my recovery, I can't eat now as they "may contain gluten" 😭 And I don't really want the gluten free alternatives, as 1. It's quite a big deal to have to trial and error lots of new foods, as someone with my history of anorexia and 2. I'm so set on just eating "raw" or unprocessed foods now. I know that's disordered... but I'm just scared lol. Also, my solution is to chew and spit gluten foods, so I can still have my safe foods... I know that's also bad and I'll still be consuming some of the gluten, but I'm just overwhelmed tbh! 

I think part of this is also having read that some people report of weight gain once starting a gluten-free diet, and again, not the kind of thing you want to hear in ed recovery when you've already had to gain/maintain a healthy weight. 

 

Is this something a dietitian would help me with? Or would they be more bothered about following the coeliac diet, as opposed to helping me with my ed too? I'm thinking maybe I need to get more ED support, as I was discharged but obviously now have this to deal with!

I've only been diagnosed officially for a week though, I do hope this gets easier and I can be less restrictive and less "clean eating" about it all 😭

i actually had this issue. So pre my coeliac diagnosis, i suffered from anorexia crippling fear of food part especially bc i didn't have the typical coeliac symptoms [ so diarrhoea and weight loss bc i had remained the same size pretty much all majority of my life] i did have constipation, terrible joint aches and extreme bloating so it kept triggering the anorexia 

i can say it does get easier, i've found that the best way to deal with it is to slowly reprogram your mind, so instead of clean eating, look at it in you are eating a healthier diet and nourishing yourself which will allow you eat snacks and still eat healthy. so a shift from starving yourself to eating to [unfortunately, as we don't have a choice] manage your health 

 

hope this helps!!