Struggles eating enough

[Jodi Lee K]

Hi. I am new here but I received my official celiac disease diagnosis in January 2023. I keep having issues with weight fluctuation. I was very much a “live to eat, not eat to live” type of person. I also can’t eat something because I need it. If I’m not craving it, I will gag. I was curious if I am alone in this? I feel like that can’t be very normal. I go through phases of being ok with my diagnosis. And then phases where I feel so bitter and I wish I could just decide that I don’t have celiac anymore. 

[trents]

Welcome to the forum, @Jodi Lee K!

Two questions:

1. When you say, "I also am can't eat something because I need it," has it always been this way or just since your celiac diagnosis?

2. When you say you "go through phases where I feel so bitter and I wish I could just decide that I don't have celiac anymore," at such times, do you cheat on your gluten free diet? How consistent are you with your gluten free eating in general?

[Jodi Lee K]

1. I have unfortunately always been this way. It’s just harder to figure out something that “sounds good” now. 
 

2.  I am very consistent with my gluten-free diet! I have consumed gluten on purpose one single time since finding out and it was because we already had a trip planned around this specific restaurant I loved. I talk about wanting to cheat on my diet but don’t. Just lots of feelings of sadness. 

[trents]

2 minutes ago, Jodi Lee K said:

1. I have unfortunately always been this way. It’s just harder to figure out something that “sounds good” now. 
 

2.  I am very consistent with my gluten-free diet! I have consumed gluten on purpose one single time since finding out and it was because we already had a trip planned around this specific restaurant I loved. I talk about wanting to cheat on my diet but don’t. Just lots of feelings of sadness. 

Before your celiac diagnosis, did you have good social support systems in place? Has your celiac diagnosis contributed significantly to feeling more socially isolated?

[Jodi Lee K]

I think so! I am very close to most of my family and friends. My husband and twin are both very supportive. I definitely feel more isolated. But not by my loved ones. I isolate myself because it hurts to see everyone enjoy things that I can’t. Which sounds silly and dramatic but I can’t help it. I’m trying to get over those feelings. 

[trents]

Jodi Lee, I'm thinking it might be a good idea to seek counseling for what might be a long standing eating disorder that has been complicated by your celiac diagnosis. When we hear the term "eating disorder" what immediately comes to mind are things like anorexia and bulimia. But there are other types as well. I'm not a mental health professional but it just seems to me from what you shared that you have a long standing unhealthy relationship with food. I hope this doesn't offend you.

[Jodi Lee K]

It is not offensive but it does make me sad. However, I was looking to see if this experience/these feelings are mine alone and that does help me answer that. I had a GI Psychiatrist but I’m really not a fan of him so I may need to look for someone else. I really appreciate your responses. 

[trents]

Jodi Lee,

I think just about everyone who is diagnosed with celiac disease struggles with resentment and anger at the changes and limitations it imposes upon our lives if we choose to accept its reality. For most of us I think, that largely subsides over time and it becomes the new norm. But if there is an existing unhealthy relationship with food then adjustment is more difficult.

I never realized there was a specialty called GI psychiatry! Sometimes it can take several tries to find a therapist that is a good match for you. There is this balance that must be found between a therapist that you feel supported by but who is not afraid to speak truth into your life. I think that is more important than a fine-tuned specialty.

[Scott Adams]

Here are some articles we've done on studies that link celiac disease with eating disorders:

https://www.celiac.com/search/?&q=eating disorders&type=cms_records2&quick=1&search_and_or=and&search_in=titles&sortby=relevancy