Being a burden to family/friends

[DayaInTheSun]

Anyone else feel this way? Not only do I have celiac disease but a few food intolerances too. I can’t do dairy, soy, nuts (nuts is an actual allergy lip swelling need an EpiPen) , or eggs. I get stomach pain when I eat seeds, dairy gives me crippling pain, I only recently put together the hives when I eat  soy.  Family wants to go out and eat tells me the restaurant is gluten free but the gluten free bread has eggs or soy or they use the same prepping area as food with gluten in it. I’ve been slowly eliminating food trying to figure what my triggers were. It’s been 6 months since I’ve last had hives and joint pain after cutting out all the foods I listed above. But I can’t help but feel like a burden to everyone. They always heavily sigh when I refuse to eat from restaurants.  They encourage me to eat out but I’m only now starting to physically feel better. I want to give in so I won’t be such a burden. And ruin other people’s fun.  Going out on dates is a nightmare trying to explain to them what I can and cannot have they pretend to understand but I feel like it’s a turn off. 

[cristiana]

Hi @DayaInTheSun

Welcome to the forum!

I've been a Mod on this forum for some years now and your feelings are shared by many of us.   

I am not sure how long you have been diagnosed, but in my own case I do find that time has helped.  It was pretty exhausting at first trying to explain to friends but they now have a pretty good grasp of coeliac disease and what it entails, either because they've hung around me long enough or have got to know other coeliacs who have educated them.  Also, two of my close friends are coeliacs and another has become allergic to yeast and with that has developed a shed load of other intolerances, so we either cook for each other or tend to socialise over coffee or just a visit to the pub, or meet for a picnic.

I now have found a few trusted restaurants and pubs where I can relax and enjoy a meal.  But I would never risk this without a bit of research first, looking at online reviews and preferably asking friends for their personal recommendations. If I am not sure, I don't take any chances and eat before I go out, just saying to the staff, "I'm not eating, but I'll order a drink" without any explanation.  I actually find that much easier than saying, "I'm a coeliac" because they then try to persuade you to try their gluten free menu which can be a bit hit and miss. 

I hope others will chime in but I just wanted to reply to say you are certainly not alone in this.  I do hope that over Christmas you will find a few treats you can eat at home.

Cristiana

 

 

[trents]

Let me "ditto" Cristiana's welcome to the forum, @DayaInTheSun! Many in this online family can identify with your struggle.

With all of your food sensitivity/intolerance issues you probably should research MCAS (Mast Cell Activation Syndrome) and consider a low histamine diet.

[Scott Adams]

Ultimately you have to be responsible for your own health, regardless of how it might affect others, and this is especially true if you have both celiac disease and a severe nut allergy. Eating out is the most common source of gluten contamination, even in restaurants that have gluten-free menus. 

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:

 

 

[RMJ]

I’ve been to restaurants for lunch with people from work and not eaten anything.  One time I just had a bowl of white rice.  The restaurant didn’t care and nobody made any nasty comments.  It took some bravery on my part to do that but it turned out fine. I just tell people I’m there for their company, which is more important to me than the food.

[DayaInTheSun]

On 12/24/2024 at 12:32 PM, trents said:

Let me "ditto" Cristiana's welcome to the forum, @DayaInTheSun! Many in this online family can identify with your struggle.

With all of your food sensitivity/intolerance issues you probably should research MCAS (Mast Cell Activation Syndrome) and consider a low histamine diet.

Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid.  Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid.  Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. 

[dublin555]

On 12/24/2024 at 9:46 AM, DayaInTheSun said:

Anyone else feel this way? Not only do I have celiac disease but a few food intolerances too. I can’t do dairy, soy, nuts (nuts is an actual allergy lip swelling need an EpiPen) , or eggs. I get stomach pain when I eat seeds, dairy gives me crippling pain, I only recently put together the hives when I eat  soy.  Family wants to go out and eat tells me the restaurant is gluten free but the gluten free bread has eggs or soy or they use the same prepping area as food with gluten in it. I’ve been slowly eliminating food trying to figure what my triggers were. It’s been 6 months since I’ve last had hives and joint pain after cutting out all the foods I listed above. But I can’t help but feel like a burden to everyone. They always heavily sigh when I refuse to eat from restaurants.  They encourage me to eat out but I’m only now starting to physically feel better. I want to give in so I won’t be such a burden. And ruin other people’s fun.  Going out on dates is a nightmare trying to explain to them what I can and cannot have they pretend to understand but I feel like it’s a turn off. 

I totally agree, it’s so much more than just the physical struggle that occurs, there is the emotional struggle that goes along with it. It’s almost like you’re always navigating people who are uncomfortable with your needs and that pressure really wears you down. The fact is, the one that really did care will understand. This has nothing to do with you being a burden, it’s about protecting your health, first and foremost. If they don’t like being honest, that’s their problem.

[knitty kitty]

@DayaInTheSun,

Have you been checked for nutritional deficiencies?  The gluten free diet can be low in the eight essential B vitamins.  Most Celiac are low in Vitamin D, which helps calm the immune system.  Thiamine (Benfotiamine) helps calm mast cells so they don't release histamine at the slightest provocation.  Taking a B Complex and Benfotiamine will help.  

P.S. Covid can deplete Thiamine stores.  Physical stress, like an infection or injury, as well as emotional stress, require more Thiamine.  

Edited December 30, 2024 by knitty kitty
Added Post Script

[CatS]

I understand your frustration about socializing while having celiac disease. I also have allergies to nuts, dairy, all forms of gluten including oats, strawberries and MSG. I get anxiety while grocery shopping and really take my time to read all labels. I always carry a magnifying glass with me wherever I go to read labels. Many products are labelled Gluten Free but contain Oats, and apparently this is becoming more common. I almost bought some gluten free flour but read that it contained oats. A certain percentage of Celiacs have this complication.
I can’t help feeling offended and excluded when others act like I am being “high maintenance”. I am becoming better at being an advocate for myself. 
I have had diverticulitis 3 times and each time hospitalized-once, the attending nurse didn’t know what celiac means-she had to research...  If others around me make comments I try to enlighten them, those who don’t get it are not my friends anymore.
Be very careful about cross-contamination. I was sick recently for 10 days after a meal was contaminated while I was on holiday. If servers say they have gluten free buns or bread, ask if they use a toaster specifically reserved for gluten-free, or don’t chance it.

On a positive note, I didn’t find out I had Celiac Disease until I was 60. Eating a gluten free diet means no more terrible headaches, hives, rashes, intestinal bloating and irregularity, Gastro Intestinal Reflux….when I follow a strict diet and mostly always eat at home, I feel great! I also weeded out “friends” who weren’t worth being around.

[trents]

14 minutes ago, CatS said:

If others around me make comments I try to enlighten them, those who don’t get it are not my friends anymore.

I also weeded out “friends” who weren’t worth being around.

Matthew 18:21-35

[cristiana]

I must admit I've been on both sides.  Before my diagnosis, and in my ignorance, I thought all the special diets we see around us today were unnecessary and people were making a big fuss over nothing.  There is a shop in the small town where I live that sells organic and gluten free food and I used to see people walking in and buying things and thought they were being a bit ridiculous spending extra money on what I thought was a fad.  Yet since my diagnosis that shop has been a real lifesaver. 

I guess It is hard for people to see the necessity of all this extra effort if they haven't experienced celiac disease personally, or observed the way gluten affects someone they love.  Honestly, I have wondered at times if I would have been as understanding had my husband been diagnosed with coeliac disease instead of me. He has been great.  

It must be incredibly difficult if your close friends and family aren't supporting you.  I have read some awful stories from coeliacs where friends and families have not just been unsupportive, but go out of their way to continue serving up gluten.   In such extreme cases, where harm is actually being done, serious thought needs to be taken about removing oneself from harm's way. 

That all said, I find that the world is now so full of people struggling with autoimmune illnesses now, allergies and intolerances, that people are definitely becoming more attuned to things.   

Word is getting out there. In 2022 a long-running popular TV series in the UK, Doc Martin, ended with a final case: a patient being diagnosed with coeliac disease.  I don't know if anyone saw it but I was so heartened by that episode, that celiac disease was given centre stage for the last ever programme.

The patient in question had been suffering from a horrible rash which turned out to be dermatitis herpetiformis. He also had anemia, felt faint and was plain exhausted.  It would have been good education to anyone watching who didn't know about the disease and they would have been left in no doubt about its seriousness and the need to follow a strict gluten-free diet.  I thought to myself as it ended, well, now, that's another piece in our campaign to make coeliac disease better understood!

 

 

Edited January 10 by cristiana

[cristiana]

6 hours ago, trents said:

Matthew 18:21-35

Looked this up.   Yes, forgiveness and bearing with people is people is vital.  

[knitty kitty]

It might be understandable to say "friends or family weeded me or you out of their lives". Some people are fearful of getting out of their comfortable known lives and having to make changes to accommodate another.   If they are too uncomfortable to walk a mile with me, I shake the dust off my feet and journey on.  They're just not ready to learn that lesson.  But you confidently keep going on your journey.  They can catch up later.