Recently Diagnosed with Celiac and sat through GMA brunch with nothing to eat

[Samo1]

Hey everyone,

I was recently diagnosed with celiac disease. Im visiting my parents from out of town. Yesterday, we took a two hour drive to my visit my gran. My whole family went to visit. Needless to say, I was emotional because as per usual nobody thought about what and how I can eat. I looked up other restaurants ahead of time and there were about two choices of places with gluten-free items on the menu. I brought food with me just in case.
My dad offered to pay for brunch for everyone. However, he was not interested in spending a load of money. We celiacs can relate our food is crazy expensive. That being said, my parents are old school and an argument would have ensued had I paid for my own meal. Also, the place they selected had nothing on the menu labeled gluten-free and nothing dairy free. I was afraid of cross contamination and offered other choices of places in the area again. However, it was not accepted. I brought my lunch and left it at my grans as I didn’t want  to bring my own food to a restaurant it would have been so awkward. So while they were all enjoying their food I was sitting around looking and feeling sad for myself. I wonder if others have this issue too? 

[cristiana]

Hello Samo1

Welcome to the forum.

I am sorry you have had this experience, and yes, I can relate, as many a time have I sat in a restaurant or cafe and been the only person there not eating. 

I have coeliac friends who eat out all the time, without issue, but I rarely eat out because for some reason I seem to be very sensitive to even the smallest traces of gluten caused by cross-contamination and I can't bear the sore stomach, nausea and chills that can ensue from picking up trace amounts (or sometimes even large amounts) of gluten when I eat out.  Feeling ill for a day or too, sometimes longer, is a price I am no longer prepared to pay.

You are still new to this coeliac journey and at first trying to navigate this sort of situation can be very daunting.  However, in time, if your experience becomes anything like mine, you will find a few restaurants who completely understand coeliac disease and will take real steps to keep you safe. For example, I have found the odd establishment where a member of the chef's family has coeliac disease so they understand; occasionally you will find a gluten free restaurant in larger towns, or one that has a separate kitchen for the preparation of foods for people with coeliac disease or allergies.  I know one or two places that order in gluten-free desserts which have been prepared in gluten free kitchens, so even if I can't eat a main I can enjoy a dessert.

I sometimes take a 'picnic' with me when I eat out now - maybe some granola bars, a banana, some chocolate, just in case.  I live in the UK and I find since allergy laws have been ratched up most catering establishments are unable to give a cast-iron guarantee that cross-contamination hasn't taken place.  If that is the case I say to the staff, "Do you mind if I eat my own special food that I have brought along?" and they are fine about it.   Of course, my fellow diners will ask why I am not eating stuff off the menu but I see it as a chance to be an advocate for the cause, it's good to educate people.  Normally the conversation moves on quickly and that's the end of it.

That said, I do eat out at a local pub quite frequently now.  I have a very good relationship with the chef, and she knows exactly how to make a safe baked potato and salad for me but equally should I choose to bring my own salad, she is happy for me to eat that and will offer to plate it up so I can eat with my fellow diners.   

Today while my son and husband ate at a local beachside cafe I ordered a latte and enjoyed a gluten free cookie that they happened to have on offer.  I did wish I could eat what they were eating, but instead I decided to enjoy the sea view and the conversation.  I was not ever very good at eating and speaking at the same time, anyway, I was always last to finish.  I will make sure this evening that I have something really tasty to eat to make up for missing out at lunchtime!

I hope some of this helps; I also want to just underline again that I have coeliac friends who trust gluten-free items on menus and rarely have issues - I think I am super sensitive to contamination.

Cristiana

 

 

Edited August 28, 2023 by cristiana

[trents]

Welcome to the forum, Samo1!

Your experience is very common among the celiac population. Many people, even some physicians, are skeptical of the reality of celiac disease and consider it to be either the latest fab diet or the product of an OCD personality. In their ignorance they are dismissive and intolerant.

You raise a question fraught with lot of variables, some of them you have no control over. It's a very sensitive subject because bound up with the question are family dynamics and even ethnic considerations. Food can be a big part of some family cultures and ethnic groups and when that is threatened by a celiac diagnosis in the family it can release a torrent of hostility and resentment. My advice would be to consider putting together a bullet point handout that you can give to or email to family members to help educate them about celiac disease and the dangers to the celiac's health of gluten exposure. Something brief and informative. Aother piece of advice is to prepare some gluten-free ready made meals and freeze them to take along to family gatherings where food is centric. If nothing else, take along a gluten-free protein shake or bar. Finally, give thought to developing some gracious responses to your relatives that will help diffuse the hostility. Give it time. This is not only new to you but to all of your relatives. In time, most (but probably not all) will adjust to this new reality.

I will also offer this article which I'm sure you can identify with:

 

Edited August 28, 2023 by trents

[Samo1]

Thank for you the kind words. I will definitely give this a read and like the idea of printing my out an informative little bulletin to describe my disease. I guess what bothers me, is why people don’t read about it. If someone was diagnosed with something in my immediate family I want to be informed on their condition and want them to feel supported so I read about the condition. Arg! Whatever I guess it is what it is. I hate the idea of going to grab a meal with family and not being able to eat. It’s just there are other options why not go elsewhere. It’s just so hurtful. I spent the whole day in tears thinking about what my life is going to be like as I age. My family telling me, well are you ever going to go on vaca? It’s a legit question and the answer I cannot help but feel is no. I’m Canadian so maybe to the USA, as I feel they have better options. 

38 minutes ago, cristiana said:

Hello Samo1

Welcome to the forum.

I am sorry you have had this experience, and yes, I can relate, as many a time have I sat in a restaurant or cafe and been the only person there not eating. 

I have coeliac friends who eat out all the time, without issue, but I rarely eat out because for some reason I seem to be very sensitive to even the smallest traces of gluten caused by cross-contamination and I can't bear the sore stomach, nausea and chills that can ensue from picking up trace amounts (or sometimes even large amounts) of gluten when I eat out.  Feeling ill for a day or too, sometimes longer, is a price I am no longer prepared to pay.

You are still new to this coeliac journey and at first trying to navigate this sort of situation can be very daunting.  However, in time, if your experience becomes anything like mine, you will find a few restaurants who completely understand coeliac disease and will take real steps to keep you safe. For example, I have found the odd establishment where a member of the chef's family has coeliac disease so they understand; occasionally you will find a gluten free restaurant in larger towns, or one that has a separate kitchen for the preparation of foods for people with coeliac disease or allergies.  I know one or two places that order in gluten-free desserts which have been prepared in gluten free kitchens, so even if I can't eat a main I can enjoy a dessert.

I sometimes take a 'picnic' with me when I eat out now - maybe some granola bars, a banana, some chocolate, just in case.  I live in the UK and I find since allergy laws have been ratched up most catering establishments are unable to give a cast-iron guarantee that cross-contamination hasn't taken place.  If that is the case I say to the staff, "Do you mind if I eat my own special food that I have brought along?" and they are fine about it.   Of course, my fellow diners will ask why I am not eating stuff off the menu but I see it as a chance to be an advocate for the cause, it's good to educate people.  Normally the conversation moves on quickly and that's the end of it.

That said, I do eat out at a local pub quite frequently now.  I have a very good relationship with the chef, and she knows exactly how to make a safe baked potato and salad for me but equally should I choose to bring my own salad, she is happy for me to eat that and will offer to plate it up so I can eat with my fellow diners.   

Today while my son and husband ate at a local beachside cafe I ordered a latte and enjoyed a gluten free cookie that they happened to have on offer.  I did wish I could eat what they were eating, but instead I decided to enjoy the sea view and the conversation.  I was not ever very good at eating and speaking at the same time, anyway, I was always last to finish.  I will make sure this evening that I have something really tasty to eat to make up for missing out at lunchtime!

I hope some of this helps; I also want to just underline again that I have coeliac friends who trust gluten-free items on menus and rarely have issues - I think I am super sensitive to contamination.

Cristiana

 

 

 

38 minutes ago, cristiana said:

Hello Samo1

Welcome to the forum.

I am sorry you have had this experience, and yes, I can relate, as many a time have I sat in a restaurant or cafe and been the only person there not eating. 

I have coeliac friends who eat out all the time, without issue, but I rarely eat out because for some reason I seem to be very sensitive to even the smallest traces of gluten caused by cross-contamination and I can't bear the sore stomach, nausea and chills that can ensue from picking up trace amounts (or sometimes even large amounts) of gluten when I eat out.  Feeling ill for a day or too, sometimes longer, is a price I am no longer prepared to pay.

You are still new to this coeliac journey and at first trying to navigate this sort of situation can be very daunting.  However, in time, if your experience becomes anything like mine, you will find a few restaurants who completely understand coeliac disease and will take real steps to keep you safe. For example, I have found the odd establishment where a member of the chef's family has coeliac disease so they understand; occasionally you will find a gluten free restaurant in larger towns, or one that has a separate kitchen for the preparation of foods for people with coeliac disease or allergies.  I know one or two places that order in gluten-free desserts which have been prepared in gluten free kitchens, so even if I can't eat a main I can enjoy a dessert.

I sometimes take a 'picnic' with me when I eat out now - maybe some granola bars, a banana, some chocolate, just in case.  I live in the UK and I find since allergy laws have been ratched up most catering establishments are unable to give a cast-iron guarantee that cross-contamination hasn't taken place.  If that is the case I say to the staff, "Do you mind if I eat my own special food that I have brought along?" and they are fine about it.   Of course, my fellow diners will ask why I am not eating stuff off the menu but I see it as a chance to be an advocate for the cause, it's good to educate people.  Normally the conversation moves on quickly and that's the end of it.

That said, I do eat out at a local pub quite frequently now.  I have a very good relationship with the chef, and she knows exactly how to make a safe baked potato and salad for me but equally should I choose to bring my own salad, she is happy for me to eat that and will offer to plate it up so I can eat with my fellow diners.   

Today while my son and husband ate at a local beachside cafe I ordered a latte and enjoyed a gluten free cookie that they happened to have on offer.  I did wish I could eat what they were eating, but instead I decided to enjoy the sea view and the conversation.  I was not ever very good at eating and speaking at the same time, anyway, I was always last to finish.  I will make sure this evening that I have something really tasty to eat to make up for missing out at lunchtime!

I hope some of this helps; I also want to just underline again that I have coeliac friends who trust gluten-free items on menus and rarely have issues - I think I am super sensitive to contamination.

Cristiana

 

 

 

[Samo1]

39 minutes ago, cristiana said:

Thank you for the reply and your kind words. I’m happy you found your gluten-free places and options. Glad to know the UK has options as well. I actually lived in Canterbury, Kent, UK for several years as, I studied there. As for Canada, I am at a loss for words. Our grocery store aisles are mixed and it can be overwhelming to find options. I feel like, the whole brunch with family just through me over the edge and I can’t help but feel like eating out won’t be an option for me. 

Samo1

Welcome to the forum.

I am sorry you have had this experience, and yes, I can relate, as many a time have I sat in a restaurant or cafe and been the only person there not eating. 

I have coeliac friends who eat out all the time, without issue, but I rarely eat out because for some reason I seem to be very sensitive to even the smallest traces of gluten caused by cross-contamination and I can't bear the sore stomach, nausea and chills that can ensue from picking up trace amounts (or sometimes even large amounts) of gluten when I eat out.  Feeling ill for a day or too, sometimes longer, is a price I am no longer prepared to pay.

You are still new to this coeliac journey and at first trying to navigate this sort of situation can be very daunting.  However, in time, if your experience becomes anything like mine, you will find a few restaurants who completely understand coeliac disease and will take real steps to keep you safe. For example, I have found the odd establishment where a member of the chef's family has coeliac disease so they understand; occasionally you will find a gluten free restaurant in larger towns, or one that has a separate kitchen for the preparation of foods for people with coeliac disease or allergies.  I know one or two places that order in gluten-free desserts which have been prepared in gluten free kitchens, so even if I can't eat a main I can enjoy a dessert.

I sometimes take a 'picnic' with me when I eat out now - maybe some granola bars, a banana, some chocolate, just in case.  I live in the UK and I find since allergy laws have been ratched up most catering establishments are unable to give a cast-iron guarantee that cross-contamination hasn't taken place.  If that is the case I say to the staff, "Do you mind if I eat my own special food that I have brought along?" and they are fine about it.   Of course, my fellow diners will ask why I am not eating stuff off the menu but I see it as a chance to be an advocate for the cause, it's good to educate people.  Normally the conversation moves on quickly and that's the end of it.

That said, I do eat out at a local pub quite frequently now.  I have a very good relationship with the chef, and she knows exactly how to make a safe baked potato and salad for me but equally should I choose to bring my own salad, she is happy for me to eat that and will offer to plate it up so I can eat with my fellow diners.   

Today while my son and husband ate at a local beachside cafe I ordered a latte and enjoyed a gluten free cookie that they happened to have on offer.  I did wish I could eat what they were eating, but instead I decided to enjoy the sea view and the conversation.  I was not ever very good at eating and speaking at the same time, anyway, I was always last to finish.  I will make sure this evening that I have something really tasty to eat to make up for missing out at lunchtime!

I hope some of this helps; I also want to just underline again that I have coeliac friends who trust gluten-free items on menus and rarely have issues - I think I am super sensitive to contamination.

Cristiana

 

 

 

[trents]

Samo1,

It's just hard for people to believe that wheat, something considered practically all over the world to symbolize wholesome sustenance, to be harmful to your health. They can understand a peanut allergy because people have anaphylactic reactions to it that are immediately life-threatening. Celiac disease is not even an allergy. It is an autoimmune disorder and it's hard for people to understand that because gluten is found in things you eat. Maybe if you had a wheat allergy they could understand it better. Most people don't have much of a concept of autoimmune disease, much less one that is connected to a food.

[cristiana]

"Our grocery store aisles are mixed and it can be overwhelming to find options."

@Samo1 - this is really tough.  I have come across this from time to time in this country.  At one point I remember one local store decided to put products alongside normal products as an experiment and I could hardly find anything I wanted.  Interestingly, that experiment seemed to be a failure and things went back to the way they were in a matter of weeks.

Do you know of any other coeliacs at all who live near you that you could contact for some support?  Thankfully I knew two girls diagnosed around the same time as me, and knew of an older gentleman with it, and I found it really helpful to meet up and just discuss things, share tips etc.  

 

 

 

[Samo1]

Thanks for the reply! Yes I do , my colleague has it. However, I cannot do dairy so it limits me further. My colleague can. However, I am finding other individual cases differ. I am getting info and recommendations from her so it’s good.  On a positive note, I adore the Amy’s gluten free and dairy free meals. However, they are expensive and tiny portions. So I get hungry. I find I get hungry because the gluten-free food is smaller in portions. I don’t eat much meat so it limits me as well.  My symptoms have getting odd as well, despite the gluten free food for about 6 weeks now, I am having heartburn and continuous burping. Thanks for the kind words here’s to hoping grocery aisles get a designated gluten-free aisle in future. 

[Jane07]

Samo

im a Canadian to Amy’s soup some are gluten free. There also enjoy life there have good cookies. Prana a good make they sone gluten free seeds nuts I put on my gluten free oatmeal  Schar bread is my Favorite . Just have to try a bunch of things see what you like.  It hard I know it makes me sad I can’t enjoy done of the food I used to love .
 

Restaurant are difficult not much there I find .

 Good luck to you 🇨🇦

[Samo1]

Thanks for the kind words Jane. I appreciate it!

[trents]

5 hours ago, Samo1 said:

Thanks for the reply! Yes I do , my colleague has it. However, I cannot do dairy so it limits me further. My colleague can. However, I am finding other individual cases differ. I am getting info and recommendations from her so it’s good.  On a positive note, I adore the Amy’s gluten free and dairy free meals. However, they are expensive and tiny portions. So I get hungry. I find I get hungry because the gluten-free food is smaller in portions. I don’t eat much meat so it limits me as well.  My symptoms have getting odd as well, despite the gluten free food for about 6 weeks now, I am having heartburn and continuous burping. Thanks for the kind words here’s to hoping grocery aisles get a designated gluten-free aisle in future. 

It is very common for celiacs to be dairy intolerant but you may find that after you experienced healing in the villous lining of your gut that you can go back to at least a moderate amount of dairy without issues. But it's essential that you really take seriously gluten free eating and not be content with just lower gluten eating if you want your gut to heal:

 

[cristiana]

5 hours ago, trents said:

It is very common for celiacs to be dairy intolerant but you may find that after you experienced healing in the villous lining of your gut that you can go back to at least a moderate amount of dairy without issues.

This is very true, and it happened to me.  When first diagnosed dairy = diarrhea.  I couldn't even tolerate lactose free milk.

Now I drink normal milk and eat yoghurt and only if I have too much will it cause issues. 

Some coeliacs do have problems with all manner of dairy while they are healing, but I noticed hard cheese like Cheddar wasn't a problem when eaten in moderate amounts.  It is low in lactose.  You may wish to try that when you feel up to it. 

As your healing journey progresses, you may find that this situation may improve.  The following might be helpful:

https://www.verywellhealth.com/9-low-lactose-foods-5220431#:~:text=Low-lactose dairy products include,for people with lactose intolerance.

 

[cristiana]

11 hours ago, Samo1 said:

My symptoms have getting odd as well, despite the gluten free food for about 6 weeks now, I am having heartburn and continuous burping.

Just a hunch, but perhaps because you are eating less/skipping meals, your stomach will still be making the acid it normally makes, and the accumulated excess acid, which isn't being used for digestion, might be causing these symptoms? 

Try to not skip meals and perhaps in the short term look into adopting a reflux or gastritis diet, avoiding spicy, fatty and acidic food, and alcohol.  Keep caffeine to a minimum. Try cooking up a large batch of chicken casserole, slow cooked in water, herbs, potatoes and carrots for several hours until it falls apart.  It can be kept in the fridge, and it is very healing, and can be liquidised for a soup.  Small regular meals are good.

I suffer from similar from time to time and I find chamomile tea incredibly helpful.  A short course of Gaviscon or OTC PPIs can be helpful.  I find a few days of this and I am back on course. If it persists don't be afraid to go back to your doctor in case s/he can offer further help, but whatever happens, just be sure you are not consuming gluten as that might be the cause of ongoing symptoms.

It is important to remember, however, that these sort of symptoms are not uncommon in the general population anyway.  My sister doesn't have coeliac disease has had the symptoms you describe for the past six weeks.  They started when she took some ibuprofen (also something worth avoiding if you are taking it at the moment).  It has eventually cleared up but she found stress was not helping.  I have found this, too, in the past.  Try to get plenty of rest and take some measures to reduce the stress in your life if you can and do some things you enjoy, it should help.

I am really glad you have a colleague with coeliac disease, so you can talk to them.  I think you will find that more cross your path now you are aware of the condition.  

[Elliemae7395]

I don't know how helpful this might be. I enjoy Amy's gluten free chunky vegetable soup. Lately the only place I've found it is amazon. This soup wasn't as filling as I wanted. So I put in 1/3 of a cup of rice and cooked the soup for 20min. It was so tasty and filling. A good lunch that I can eat at home or take with me.

[trents]

I've often eaten Amy's gluten free dinners and without any reaction, though others on the forum have reported otherwise. I'm not a particularly sensitive celiac, however, and the 20ppm standard seems to work for me. Amy's portions are pretty small, however, and I usually either eat two of them or supplement with a cheese sandwich or something. But beware, Amy's dinners are very high in sodium. There's enough salt in those things to gag a maggot. I mostly quit buying them because of that. But the truth is, it's hard to find any prepared, ready made food that isn't high in sodium.

Edited August 29, 2023 by trents

[Samo1]

4 hours ago, Elliemae7395 said:

EllieMae7395, thank you I will try the Amy's gluten free chunky vegetable soup. I appreciate it ! I went out to dinner for sushi with a friend yesterday and the restaurant was lovely. They had gluten-free soya sauce. They used different knives and cutting board. They cleaned and used a different area. I was really happy and surprised. 

 

4 hours ago, Elliemae7395 said:

I don't know how helpful this might be. I enjoy Amy's gluten free chunky vegetable soup. Lately the only place I've found it is amazon. This soup wasn't as filling as I wanted. So I put in 1/3 of a cup of rice and cooked the soup for 20min. It was so tasty and filling. A good lunch that I can eat at home or take with me.

 

[Aaron2018]

If you want prepared meals this is a good option: they are from the health choice line, they only have 2 gluten free options though, but I highly recommend them, they are good.

https://www.google.com/imgres?imgurl=https%3A%2F%2Fwww.healthychoice.com%2Fsites%2Fg%2Ffiles%2Fqyyrlu206%2Ffiles%2Fimages%2Fproducts%2Flemon-herb-chicken-26822.png&tbnid=ZaMtRHmrwY_xwM&vet=1&imgrefurl=https%3A%2F%2Fwww.healthychoice.com%2Fmax-bowls%2Flemon-herb-chicken&docid=1hBn-D8pgt4NHM&w=500&h=500&hl=en-ca&source=sh%2Fx%2Fim%2Fm4%2F3

 

https://www.google.com/imgres?imgurl=https%3A%2F%2Fstorage.googleapis.com%2Fbuggy-ca-product%2F15747114055ddc306dd632f-500x500.webp&tbnid=7N7KIXfWzBCcOM&vet=1&imgrefurl=https%3A%2F%2Fbuggy.ca%2FHealthy-Choice-Gourmet-Steamers-Frozen-Meal-Beef-Merlot-Gluten-Free-283G-Grocery-Delivery--P274776&docid=Dg8cScwMYEO_CM&w=500&h=500&itg=1&hl=en-ca&source=sh%2Fx%2Fim%2Fm4%2F3