Learning To Live Gluten Free

[CathyO]

I've been recently diagnosed, and am learning how to live gluten free. At almost 60, it's a huge adjustment to my world. How I think about food, how I cook, and how I go about living my life.

 

I'm grateful that my husband is supportive.  He's watched me get sicker and sicker over the past year, with frequent hospitalizations and multiple tests and doctors with no answers.  Now that we have an answer, it is a relief to know what's going on.  Learning how to live with it is another thing all together.

 

Our social life has come to a screeching halt, because it revolved around dining out and dining with friends at their homes, etc. We love to travel, and travelling means dining out. Fortunately, a lot of our travel is in our RV, so I have my own kitchen with me where ever we go.

 

I am extremely sensitive, and the slightest exposure makes me violently ill. Exposure to flour dust while cleaning out our pantry and disposing of gluten laden foods made me sick. 

We've been eating at home, and I've been doing all our cooking. I've spent hours online reading. I've purchased books. I've talked to a friend who is a nutritionist who is also gluten free. I have some good support.  BUT.  There are always events that cause anxiety and people who don't get it, and who literally get ANGRY that I won't go out to dinner or I prefer to have them come to our home for dinner.  They seem to take it as a personal insult that I cannot eat their bread or eat something they cooked in their kitchen because their kitchen is not gluten free, nor do they even care to attempt to understand cross-contamination and what that means to my health.

 

We are travelling next week to meet our newest grandson. While I'm excited to meet him, I'm also full of anxiety about being with my step-son and daughter-in-law.  My step-son is one of those people who gets their knickers in a twist over the fact that I can't eat "normal food".  We're staying in a hotel with our own kitchen, and I'm planning to be in charge of our meals.  My step-son cooks, and fancies himself a gourmet. I'm anticipating some tension, and that isn't helping my body at all. 

Fortunately, my husband is supportive. He's the one who has had to call an ambulance because I am unconscious on the bathroom floor at 6 a.m.  He's the one who has sat with me in the hospital for three days while they worked to get my PVCs (from dehydration and vomiting) and other physical symptoms under control.  So we've run through our options together and worked through various scenarios.  We've researched gluten free options for any dining out while visiting.  They live in Atlanta, so there are options, and even a gluten free bakery.   Neither one of us want me to get sick away from home, and wind up in the hospital in another city ... I'm not afraid to stand firm and hold my ground.  No food on the planet is worth the violent reaction I have to gluten exposure, no matter how small.

I'd love to hear how others cope with travelling while living gluten-free. The anxiety surrounding travel. Dealing with unsupportive family members.  Adjusting to living gluten free at my age has put me upside down, inside out and backwards.

Thanks for taking the time to read.
I welcome any and all suggestions !!!
 

[BlessedMommy]

Do they realize that even a little bit could send you to the hospital? Do they understand that what you have is basically the equivalent of an anaphalactic peanut allergy? 

 

I would absolutely make sure that you have all your meals planned out and taken care of, yourself. I would bring literature for them to read on the deadly severity of celiac and what it can do to you. I would try to make them understand that some people DIE from untreated celiac.

 

I would try to explain to them just what the consequences can be. Most people are fairly supportive of my gluten-free diet, because they remember seeing my very severe skin rash and remember my trip to the ER for a TIA. I try to explain that neurological complications can be deadly and I prefer not to gamble with my life, especially since I have kids to raise.

 

One thing that I did when traveling was pick up frozen gluten free breakfast entrees and heat them in the microwave of the hotel. With fresh fruit and hardboiled eggs (I rinsed them off just to make sure!) it was a pretty decent breakfast. 

 

So sorry that you're having to deal with people who don't get it. 

[BlessedMommy]

Also, maybe could you explain to people that you mean no offense to them, but with the severity of your condition, you simply can't risk eating anything that wasn't prepared in a dedicated gluten-free facility. You could even say that your doctor recommends that.

[BlessedMommy]

Oh, and regarding meals on the road, there are a lot of simple meals that can be thrown together while you're traveling. One favorite of mine was spanish rice & beans cooked up in my rice cooker. Fast, easy, safe, and cheap!

 

For breakfast while travelling, we made up gluten-free oatmeal in the rice cooker and served it with jam on top and some soymilk and fruit.

[GottaSki]

Welcome Cathy!

 

You've come to the right place for support -- many of us have gone through just the transition you are experiencing and can tell you -- it gets much, much better with time.  

 

First, your health will begin to improve and second, living gluten-free becomes second nature -- it simply takes time -- and a fair amount of frustration

 

Sounds like you are making all the right preparations for your upcoming trip -- all hubby needs to do is remind anyone making a fuss that Grandma will be healthy as long as she is careful, which is beneficial for everyone in the family!

 

Congratulations and safe travels to you

[cyclinglady]

Fox Brothers for BBQ, Stony River Steakhouse in Roswell, Good Grub Subs in Alpharetta offer gluten free items. I have celiac disease and have eaten there. Always talk to the manager and include the head chef if possible. Good grub subs is owned by a celiac disease person. Employees are well trained. I visit my family in the Atlanta area for about eight weeks out of the year.

We are thankful for our RV too. Makes for easier travel. But we are going on a European cruise this summer and I do worry. We will also be touring England. I plan on packing a collapse able ice chest and eating out of the rental car as much as possible.. Kind of like the old college days.

Unfortunately, celiac disease weeds out your true friends. Hold your ground. And yes, I am hosting Easter!

You will get better! Patience is required. Lots of it!

[CathyO]

^{Thank you so much to everyone for the support.}

 

^{My husband and I had a chat this evening, and we've decided to work on an "approach" that we can use when talking to folks about dining together.
We are just going to go with the "friendly chipper thing" .... "yeah, I've been pretty sick for a while, and the doctors tell me I have Celiac Disease. So, rather than inconvenience YOU with trying to figure this mess out -- because I'm still trying to figure it all out myself! -- if you don't mind I'll just bring along something I know I can eat and we can pop it in the microwave and heat it up.  That way we can all relax and enjoy ourselves and not have to worry about what I'm eating.  Stupid allergies! "}

 

^{Trying to not avoid socializing, and trying to avoid hurting anyone's feelings.}

 

^{cyclinglady, we'll be in the Buckhead area, so we'll see what we can check out. I've read that there is a gluten free bakery in Atlanta ... any experience with that?}

 

^{I've been happy with our local Red Robin. We live in a very small town, and the manager recognizes us. I talked to her and explained my situation. She has ulcerative colitis and knows what eating the wrong thing can mean. She makes sure my food is handled properly -- even making sure my grilled chicken for my salad is cut with a clean knife.  And Five Guys is my go-to when I crave a burger and fries !!}
 

[cyclinglady]

There are several gluten-free bakeries. Sally's or gluten-free Cutie are both good and are dedicated. Just make sure if you find others that they do not allow Gluten in their facility. There is a new bakery by my house, but they bake everything on the same equipment. Ugh! I like baking and I can do so at my Mom's house., but once in a while I will pop in for a treat. Be sure to visit the Atlanta History Center in Buckhead.

That is nice about your local Red Robin and Five Guys. I was in Palm Springs and Five Guys there could not handle gluten-free. I ate in the RV. It was a nice break from the girls I was Chaperoning.

[CathyO]

That is nice about your local Red Robin and Five Guys. I was in Palm Springs and Five Guys there could not handle gluten-free. I ate in the RV. It was a nice break from the girls I was Chaperoning.

 

Five Guys shouldn't be a problem.  The only thing they fry in their fryers are potatoes.  They make a burger in a "bowl" they call it.

Their burgers and buns are on separate grill.  I just asked the line people to please change their gloves before handling my burger.

I've been to 2 different Five Guys and it was a breeze.

 

 

[BlessedMommy]

I stopped at a gluten-free bakery in Atlanta but we didn't end up buying much, just a few cupcakes as a treat, because their bread was $12 a loaf! 

[Harpgirl]

Five Guys shouldn't be a problem.  The only thing they fry in their fryers are potatoes.  They make a burger in a "bowl" they call it.

Their burgers and buns are on separate grill.  I just asked the line people to please change their gloves before handling my burger.

I've been to 2 different Five Guys and it was a breeze.

 

Still, with any place, you have to be careful. I'm currently suffering from cross-contamination from Five Guys. I knew she ruined the fries for me. But I was starving, it was crazy busy in that food court even at 2 pm, and my boys were running everywhere. When the girl argued about the best way to bag the fries for a gluten free customer, I gave up too quickly. I gave her the benefit of the doubt, but sure enough I started with the cramps and nausea a couple hours later.

 

At least I got a couple free meals out of it this time.Usually my boys (who are 4 and 5 years old) are the ones to gluten me somehow. I'm not getting free food from them.

 

I've also had issues at 2 separate Chili's restaurants where they brought out my burger on a bun. But I never got sick because when I asked them to fix it, I explained they would have to start all over with a new burger. They apparently follow directions the second time around.

[GF Lover]

^{Thank you so much to everyone for the support.}

 

^{My husband and I had a chat this evening, and we've decided to work on an "approach" that we can use when talking to folks about dining together.}

We are just going to go with the "friendly chipper thing" .... "yeah, I've been pretty sick for a while, and the doctors tell me I have Celiac Disease. So, rather than inconvenience YOU with trying to figure this mess out -- because I'm still trying to figure it all out myself! -- if you don't mind I'll just bring along something I know I can eat and we can pop it in the microwave and heat it up.  That way we can all relax and enjoy ourselves and not have to worry about what I'm eating.  Stupid allergies! "

 

^{Trying to not avoid socializing, and trying to avoid hurting anyone's feelings.}

 

^{cyclinglady, we'll be in the Buckhead area, so we'll see what we can check out. I've read that there is a gluten free bakery in Atlanta ... any experience with that?}

 

^{I've been happy with our local Red Robin. We live in a very small town, and the manager recognizes us. I talked to her and explained my situation. She has ulcerative colitis and knows what eating the wrong thing can mean. She makes sure my food is handled properly -- even making sure my grilled chicken for my salad is cut with a clean knife.  And Five Guys is my go-to when I crave a burger and fries !!}

 

 

Hi Cathy and Welcome.

 

The friendly approach sounds great.  But please be aware, it is not an allergy, and you do need to get across the seriousness of this disease.  Also since the celiac has a genetic factor your family might want to get tested and their children too.  They need to know that this is a serious disease and not a fad that your doing.  The University of Chicago Celiac Center has excellent information and I would suggest you print it out and take some copies with you to your family.  Words on paper from a research center say more than you could ever tell them yourself.

 

Good Luck and Have Fun.

 

Colleen

[gilligan]

Still, with any place, you have to be careful. I'm currently suffering from cross-contamination from Five Guys. I knew she ruined the fries for me. But I was starving, it was crazy busy in that food court even at 2 pm, and my boys were running everywhere. When the girl argued about the best way to bag the fries for a gluten free customer, I gave up too quickly. I gave her the benefit of the doubt, but sure enough I started with the cramps and nausea a couple hours later.

 

At least I got a couple free meals out of it this time.Usually my boys (who are 4 and 5 years old) are the ones to gluten me somehow. I'm not getting free food from them.

 

I've also had issues at 2 separate Chili's restaurants where they brought out my burger on a bun. But I never got sick because when I asked them to fix it, I explained they would have to start all over with a new burger. They apparently follow directions the second time around.

I had the same experience at Five Guys.  The first time I went, the place was almost empty and they assured me I could eat there safely.  The second time (same store) it was very busy, and I got glutened.   I was excited finding a place at the mall to eat, but sadly, I won't return.

[GFinDC]

Hi Cathy,

 

You can check the zip code for Atlanta to see what restraunts are certified gluten-free on the GIG site.

 

Open Original Shared Link

 

There is also an Android app called FindMeGF that has restraunt listings.

 

Open Original Shared Link

 

It's always a good idea to call ahead to the restraunt you are thinking of eating at.  Just to make sure the place has gluten-free options still.

 

I have sometimes eaten out at restraunts and just gotten side dishes of veggies and been ok.  I've heard some restraunts use the leftover hot pasta water for heating veggies so you have to ask about that.  Also bringing along some fruit like an orange or banana/apple and some nuts is good idea.

 

Here's some threads with simple meal ideas for travel cooking.  There are also several threads on snack ideas around if you do a search in the box at top right of the forum screen.  Don't search on candy though or you'll be stuck reading threads about that for days. 

 

Super Easy Meal Ideas Anyone?
https://www.celiac.com/forums/topic/97027-super-easy-meal-ideas-anyone/

Good Gluten Free Meals Prepared Using A Microwave?
https://www.celiac.com/forums/topic/102685-good-gluten-free-meals-prepared-using-a-microwave/#entry885634

[Gemini]

You'll learn to do this well, Cathy, because you have a supportive husband.  You also will discover who your true friends are when it comes to social, eating engagements.

Never let anyone else dictate to you or manipulate you by becoming angry over your food needs.  Put them on the spot, nicely, by asking them why they are so angry over your medically necessary food choices?  You will become more comfortable in your own skin with this as time passes, trust me.  I have also gotten anger and eye rolls from family because, I too, get horribly sick from tiny amounts of gluten ingestion.  They just will never understand, which is bizarre, because some of them have pretty in-your-face symptoms also.  Over time, you will learn to let their ignorance roll off of you when you start feeling really well again.

 

I travel to England, Ireland and Scotland every couple of years and travel is not so hard as you think.  When in doubt, eat plain. Potato, protein and veggies, but I can assure you it won't always be like that.  There are so many websites that list gluten-free places that are trustworthy so you can do some research on them and come up with a plan.  Having your own kitchen really helps and we rent apartments when we travel and eat out for dinner only.  Breakfast and snacks are prepared in the apartment and we always carry protein bars in case we get stuck for a little longer without food.  But I have had tremendous luck with dinner because it really isn't that hard to do, once you tell them what you need done. Remember, practice makes perfect so get out there and travel!  

[CathyO]

Hi Cathy and Welcome.

 

The friendly approach sounds great.  But please be aware, it is not an allergy, and you do need to get across the seriousness of this disease.  Also since the celiac has a genetic factor your family might want to get tested and their children too.  They need to know that this is a serious disease and not a fad that your doing.  The University of Chicago Celiac Center has excellent information and I would suggest you print it out and take some copies with you to your family.  Words on paper from a research center say more than you could ever tell them yourself.

 

Good Luck and Have Fun.

 

Colleen

Thank you for that important reminder, Colleen.

It is so much more than an "allergy" and I need to remember that and remind myself!

[CathyO]

I had the same experience at Five Guys.  The first time I went, the place was almost empty and they assured me I could eat there safely.  The second time (same store) it was very busy, and I got glutened.   I was excited finding a place at the mall to eat, but sadly, I won't return.

That may be one of the benefits of living in a very small town. 

 

We went to Five Guys a few times here, and the person at the cash register knew exactly how to handle the situation and reminded the folks on the line a minimum of 3 times.  Our fries come in their own bag.  My burger in a bowl as they call it is in its own bag. Any burgers on buns are in a third bag.

I'll pay careful attention if we travel and eat at one away from home!

 

[CathyO]

To everyone who has replied, I thank you so much for your support and encouragement.

 

Having someplace to go for information and encouragement helps so much, as you all know.

I know that having my husband in my corner is half the battle.

 

I've downloaded apps and checked all the links here, and I feel I'm pretty well armed.

Let the traveling begin!

[GottaSki]

Go. Enjoy that baby.  

 

Would love to hear how it goes

[LauraTX]

Welcome, Cathy!    You know, you seem to have a wonderful head on those shoulders, you are way ahead of where most people start.  You seem to be a very wise person.  I like hearing your wording on what to say when you can't eat people's food.  I wish you the best of luck in Atlanta!  

[CathyO]

Greetings from Atlanta. 
The grandson is precious, of course. Sweet baby, very calm and generally happy. Which says a lot about his parents -- they are very calm first-time parents.  We're enjoying spoiling him.

 

After a few tense moments at the beginning of our arrival, they seem to have calmed down about the "gluten free" aspect of my life. We've been cooking at our hotel room, and having meals together there.  I made some good recipes, and they were surprised at how good gluten free cook be.  I had some recipes I made up ahead of time, froze and brought along to just reheat and serve. 

 

I did some checking around on the Gluten Free Near Me app, and found a local pizza place called Blue Moon. We went there last night for dinner.  It went well, and the food was very good. The kids all liked the regular pizza, and the gluten-free was very good. 

 

Tonight I'm making some jambalaya for all of us.

 

Our 12 year old grandson lives with us, and he's been spending extra time with his Uncle & Aunt.  They asked him about Celiac Disease and how to know if things are gluten free ... he told me what he explained to them, and I was amazed.  The boy has really been listening and paying attention.  He explained as well as I could have.  Since he lives with us, he's been there when I've been very sick and has watched me be taken away by ambulance a few times.  So he knows how sick I get and how frightening it is.

 

So far so good ... More to come!

 

[GottaSki]

Greetings from Atlanta. 

The grandson is precious, of course. Sweet baby, very calm and generally happy. Which says a lot about his parents -- they are very calm first-time parents.  We're enjoying spoiling him.

 

After a few tense moments at the beginning of our arrival, they seem to have calmed down about the "gluten free" aspect of my life. We've been cooking at our hotel room, and having meals together there.  I made some good recipes, and they were surprised at how good gluten free cook be.  I had some recipes I made up ahead of time, froze and brought along to just reheat and serve. 

 

I did some checking around on the Gluten Free Near Me app, and found a local pizza place called Blue Moon. We went there last night for dinner.  It went well, and the food was very good. The kids all liked the regular pizza, and the gluten-free was very good. 

 

Tonight I'm making some jambalaya for all of us.

 

Our 12 year old grandson lives with us, and he's been spending extra time with his Uncle & Aunt.  They asked him about Celiac Disease and how to know if things are gluten free ... he told me what he explained to them, and I was amazed.  The boy has really been listening and paying attention.  He explained as well as I could have.  Since he lives with us, he's been there when I've been very sick and has watched me be taken away by ambulance a few times.  So he knows how sick I get and how frightening it is.

 

So far so good ... More to come!

 

 

Awesome news!

 

Thanks for reporting back -- I love to hear stories like this