My husband takes my venting about food as a personal assualt

[Doreyn]

I took my kids to get tea and they ended up getting pizza. I usually am fine being around pizza but little Ceasars pizza was my favorite and my husband didn't like it so I rarely ate it before my diagnosis, so it was a special treat type of thing. I didn't say anything to my kids but my husband noticed I was upset and asked. I haven't had an appetite in weeks and smelling that pizza made me so hungry, and I knew nothing would satisfy. As I was explaining how upset I was that I was upset, and that I didnt know what to eat, he accused me of yelling at him. I wasn't yelling, I am sure of this because I had a lump in my throat and was having a hard time getting any words out. When he told me I didn't have to yell at him I was stunned and I got up and went and cried in our room. I tried to talk to him a little while later and asked if he would get upset if he couldnt eat pizza again ( he loves pizza and plans on doing a tour of the east coast just to try a bunch of them and wants me to go) and he said he would just keep eating it no matter what. I feel so misunderstood and unsupported and to make it worst I had posted on reddit in a celiac forum and multiple people told me I was being horrible to my husband. I don't want my family to give up gluten, but I also want to be able to vent on the rare occasion that something I can't eat makes me sad. 

[trents]

Welcome to the forum, @Doreyn!

How long has it been since you were diagnosed with celiac disease? Why have you not had an appetite for weeks? That is concerning.

Are you a "foody"? Is food really important to you and is it a big part of the family culture you grew up in such as it might be in some ethnic settings? Sounds like it might be for your husband if he plans a pizza tour of the east coast. 

The comment your husband made that he felt you should just keep eating Little Ceasar's wheat crust pizza "not matter what" concerns me. Does he understand the damage that gluten does to someone with celiac disease? Does he think it's just a food allergy rather than an autoimmune disorder that causes the body to attack its own tissues when gluten is consumed?

Edited June 22 by trents

[Doreyn]

Trents

I was diagnosed May 2023, my husband is a foodie for sure. As far as me I there isn't ethnic or familial attachments to food as I grew up in foster care and have always has issues surrounding eating. 5 years before diagnosis I was having pancreas attacks regularly and was admitted to the hospital for days at a time. 

Yes, he is aware of the damage it can cause and was at many of the appointments leading up to me being diagnosed as well as after.  I was diagnosed through endoscopy because at that time I could not keep anything in me, and blood tests came back negative. I had a lot of damage to the point that the surgeon didn't wait for the biopsy to confirm and told me right when I woke I have celiac and need to immediately stop eating gluten. 2 weeks later she confirmed the biopsy showed celiac disease. 

As far as what my husband thinks Idk and try never to assume I know what someone else thinks, even my husband of 16 years, but whether by accident or on purpose he has glutened me on more than one occasion and has never been super supportive when I have struggled with this disease. 

[trents]

Sounds like counseling support might be in order at a couple of different levels. It sounds like your physical/psychological health is at risk and your marriage is also at risk if you husband isn't watching out for you in your need to eat gluten free.

[Scott Adams]

I am sorry to hear about the issues with your husband, and it's too bad he isn't more supportive. Given how you felt in this situation, you may want to decline participating in his pizza tour of the East Coast, unless he plans to make it a gluten-free pizza tour, and it doesn't sound like this will be the case. Since you still have issues being around pizza that you cannot eat, going on such a trip seems like it would not be such a great idea. I am also not sure why he would want to pursue such a trip, given your celiac disease and the fact that you've let him know how bad it makes you feel for him to eat regular pizza in front of you, but I agree with @trents--if he won't join you in going to counseling, perhaps you could at least see a counselor? 

[trents]

You say you have always had issues around eating. Can you be more specific? Has the celiac disease diagnosis compounded this problem? You also mention that you have not had any appetite lately. Are these things connected? Has all this been a frustration to your husband?

[Doreyn]

As a small child I was made to eat what I was given, some of my earliest memories are of being sick from things I was made to eat, and being given what I hadn't eaten at every meal until I ate it. I was tested for diabetes regularly due to symptoms that I exhibited however I did not have juvenile diabetes. For a while after being diagnosed it was better I focused on finding foods that I could eat and trying new things but some of the symptoms haven't improved even a year later, which leaves me avoiding food altogether, I gained weight like crazy after having my gallbladder removed as my dr said that was the only thing they could do to try to help my panceatitis ( I had never heard of celiac and was not tested at that time it was when I moved and seen a new dr that I got diagnosed) and it did help a bit but I went from 115 pounds to 200 in 5 years after, a lot of that being during lockdowns 2020-2022. My loss of appetite has caused ire because having no appetite makes it hard to plan meals especially because my family doesn't like a lot of the meals that are gluten free. And I don't have the energy to prepare multiple meals every day. I also have skin reactions to being in contact with gluten where I develop rashes. 

[trents]

Thanks for the additional information, Doreyn. Sounds like your parents were too rigid when it came to managing food issues in the home. I think most parents struggle at times with trying to make sure their kids get adequate nutrition and they worry when the kids are between growth spurts and their appetites seem to disappear. But if the parents make too big a deal over it it becomes a control battle and creates a lot of resentment. Sometimes those conflicts resurface later in life. Then you've also had these medical problems (pancreatitis, diabetes, celiac disease) that complicate your relationship with food even more. 

Are you in counseling or have you been in the past for support in your struggle with these issues? It sounds like it would be of help.

[Doreyn]

I have went through intensive counseling, but not since my diagnosis. I have a hard time with seeing a therapist because of the trauma I have experienced, and for a therapist to really help I end up having to relive it all,which along with living in a rural area with very few options for therapists has made it difficult. I have reached out to the few available with out any follow up from them which breed mistrust within me before ever having seen them. I really appreciate you taking the time to explore this issue with me, it means a lot to me to just have someone try to understand the intricacies of my situation. 

[Doreyn]

@Scott Adams

Its mostly just little ceasars pizza which may seem silly as its probably the lowest quality pizza in many eyes but it's one that I have fond memories of as a kid, but I don't think the pizza tour would be a good idea for me. I do think I will reach out to the therapists in my area again and focus on my current issues which regard my diagnosis and the challenges it has caused me with my family. Thank you for your comment, I also read a bit of your article on supplements and plan on reading it fully later, I believe that supplements will help me be sure I am at least receiving some of the nutrients I am not currently getting due to my appetite being nonexistent. 

[Scott Adams]

Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease:

This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:

 

 

[trents]

11 hours ago, Doreyn said:

@Scott Adams

Its mostly just little ceasars pizza which may seem silly as its probably the lowest quality pizza in many eyes but it's one that I have fond memories of as a kid, but I don't think the pizza tour would be a good idea for me. I do think I will reach out to the therapists in my area again and focus on my current issues which regard my diagnosis and the challenges it has caused me with my family. Thank you for your comment, I also read a bit of your article on supplements and plan on reading it fully later, I believe that supplements will help me be sure I am at least receiving some of the nutrients I am not currently getting due to my appetite being nonexistent. 

Yes, reach out again to therapists in your area. Lean into this. If you must travel a bit to a larger place to get appropriate counseling support, this may not be a deal breaker. Many therapists do remote sessions through zoom or other online meeting tools these days. You could go in person once in a while and meet with the therapist online most of the time.

I would also encourage you connect with a dietician for guidance and support with regard to your health-related eating challenges. 

I believe that you can get on top of all this if you become proactive. You are likely struggling with depression currently and stuck in park. If you put the gear shift into drive and move forward it will bring you a whole new mindset that will benefit your health as well as your marriage. 

I have some practical suggestions for the gluten cross contamination problem as well. Tell your husband (and kids, if there are any at home) that you will not any longer be making them any food items with wheat flour. If they want wheat stuff, they will have to make it themselves or buy it ready made. Instead, you should focus on making food for them and for you that is gluten free. Concentrate on simple, basic things that are naturally gluten free like fresh meat, vegetables and fruits. This will likely be healthier for you and for them. Tell them that if they make things with wheat flour, they must thoroughly clean all dishes, utensils, countertops and oven racks used. Do not share things like toasters with them. If necessary, buy your own toaster. What I am saying is, take control of things you can control. If you will do this, you will find it will make an amazing difference in your outlook.

I also want to encourage you to start taking some high potency vitamin and mineral supplements as nutritional malabsorption generally creates deficiencies which can negatively impact physical and mental health. This could be exacerbated by your lack of appetite. We routinely recommend on this forum that celiacs start taking a high potency B-complex, 5,000-10,000 IU of D3, magnesium glycincate, not magnesium oxide (about 400mg) and zinc daily. Make sure all vitamins and supplements are gluten free. Costco's Kirkland Signature and Nature Made product lines are good, economical choices.

Edited June 24 by trents

[Doreyn]

@trents @Scott Adams

I feel so much better with the guidance you have both given me. I have called the therapists near me and if I don't hear back within the week I will look into one's in the nearest city to me. I know a few people I went to high school with are dieticians now I will reach out to them to see if they have any knowledge surrounding celiac and if not I will see if I can find one on Zoc Doc. I am already taking the magnesium B complex and zinc but not regularly due to not having an appetite but hopefully I will resolve that soon and get back to taking them daily. Thank you both so much, I was feeling so low when I posted and you have both helped me immensely, I can't thank either of you enough. 

[trents]

Don't forget the D3, Doreyn. In many ways, vitamin D is proving to be almost a master vitamin. Most people are low in D or have sub optimum levels since our lifestyles these days don't get us out in the sun much.

[Paula McVicker]

Hi Doreyn & Everyone, pardon my intrusion on this topic but as a Coeliac for 60 years I would like to offer my opinion on what I feel may be happening here with this.

I feel that your husband is in denial of your condition. You've been married for 16(?) years & for most of that time you've enjoyed the same food & lifestyle. He's not dealing very well with the changes & possibly thinks by ignoring the medical evidence, & insisting you keep enjoying a "pizza" as you have in the past that possibly he can "cure" you & life will return to "normal"!!.

A lot of air quotes I know sorry about that.

As for yourself - YOU need to take charge of your health. Nobody is going to do it for you, unfortunately. I know that too well.

Stand up for yourself! You deserve to enjoy life & not feel like some type of freak. 

Yes I used that word. There have been many more I've been called.

Also you could have depression which is normal when you are first diagnosed, & full of questions. Silly questions to others but particularly important that you get the right answers to help you, successfully, adapt to gluten free living. 

We're given our diagnosis, told to stick to a strict gluten-free diet , then left to get on with it!! 

You get no instructions on how to do this. 

You are left to sort out on your own how to incorporate a new lifestyle into an already established lifestyle. Your family doesn't get any counseling on how best to help you. They're frightened of this new regime. They are scared they'll accidentally make you ill.

Society at large does not comprehend our dietary restrictions. They believe a little piece won't do any harm, & anyway we can always deal with the repercussions, away from their eyesight!!!

Society has been conned for years into believing that one diet fits all. They are immune from our challenges because they don't have to deal with them. Most of them cannot stick to a basic diet so cannot comprehend how anyone can stick to a diet for life!! 

We need to teach them that it is not "just a diet" in the way they think a diet works, but a healthy lifestyle that's going to keep you fit & healthy & able to enjoy a life free from pain, discomfort, & disability.

An awakening moment in my life was when I was invited to lunch by some good neighbours, to celebrate a friend's 80th birthday, who all knew about me being a Coeliac. Now bear in mind as a Coeliac we don't often get invited out!!

So we get to the restaurant, a local & popular place. They do a gluten free menu available in their main restaurant, (which I had used many times), but as this was lunch we booked into the bar lounge, presuming I could avail of their gluten-free menu there. There were 5 of us in total. I was the youngest in the group by at least 40 years!

This is important to note, because that lady had never heard of Coeliac before she met me. She, like me, was brought up to eat everything put in front of you!(*)  No arguments. You want vegetarian food, leave the meat & eat the rest.

(*) story for another day perhaps!

So anyway we all go along, get seated, get menus, then I asked for their gluten-free menu. Only to be told they do not provide it outside of their main restaurant!!! I argued that this was now against the law & was told,  IF,  I wanted to eat I would have to go to the main restaurant!? 

Then a miracle happened 😁 the 80 year old, whose special day it was, stands up & says, in a very loud voice, 'if Paula can't eat here then neither shall we' . She promptly stood up, cane in hand, & marched us all out. Then instead of me feeling like I had ruined her day & was putting them out I felt heard, seen & respected as a human being!! We need more people like her in our lives.

My friends apologized to me!! & Yes we found an even better restaurant where we could all eat & enjoy our day 😀 what a great day that was.

Those are the type of Friends we should surround ourselves with.

From then I've had greater respect for myself & have been a strong advocate for myself whenever I'm dining out. I've embarrassed friends & colleagues when I've refused to eat in a place that doesn't cater for my needs, & promptly left the establishment. I no longer sit & watch others enjoying their food when I can't,  & anyone who expects me to can 'get lost'.

I don't know if any of this helps, but if friends & family really love you they will stand up for your right to enjoy a good meal, same as they do, & alongside them.

So, if your family & friends are having difficulties adjusting - open a conversation about it - share your difficulties with them too. Let them know the impact they can make in advocating for you as well.

BUT above all be strong in what you expect from them & how they can help. If they are unwilling to do this then exclude them from your journey.

I hope somewhere in this long tirade I've at least given you something to think about in relation to your journey, but most of all hope, that with the right people supporting you, you've got this.

 

[Scott Adams]

I think your advice and the story you shared are a great example for many of us! Thank you!

[Doreyn]

@Paula McVicker

Thank you, you really shed a new light on how I should handle those very public embarrassing moments. I haven't been to a restraunt except once when visiting Phoenix and was told I could order gluten free from their menu but ended up believing I was not given the actual gluten free substitutions. I should have said something but it is quite embarrassing for everyone. I try to educate my family and friends as I educate myself and you are right there are a lot of mind sets who just can't phantom the amount of work and worry we go through to continue a somewhat normal life. Thank you I am screenshotting your response so I can remind myself that there are others who have managed this change and that I will too get through this. Thanks again Paula many blessing to you.