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katelyann812

By katelyann812
in Coping with Celiac Disease

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katelyann812 Newbie
katelyann812
Posted

Hi everyone! I was recently just diagnosed with Celiac. I was having major stomach problems for the past couple months. The issues would come and go- really bad nausea especially in the  morning, bathroom issues, VERY tired, feeling weak---ect. After testing double positive in my blood work- I was kind of in denial about actually having to make this step and start my "new" life. After going under the endoscopy - proven to have celiac... some damaged done to the villi's-- and high white blood cells. 

 

Today is day one of starting my gluten free diet. I feel like a lost soul. I am someone who is always on the go. The girl who has never had to watch that she ate...

Is it normal to feel sad? I feel like I lost my best friend! I feel as if my family and friends do not really understand how serious this is.

 

I already read the pinned post! But I am looking to hear others stories as well- advice?

What is it like first starting eating gluten free?

How can you explain to people how serious celiac disease is? my parents don't seem to FULLY understand..

 

 

 

Much is appreciated....thank you...

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Palvyre Apprentice
Palvyre
Posted

There is a grieving period, especially around the social impact and this is completely normal. To get your family to understand, the best thing you can do is point them at some reputable online sources for information. As you implement your gluten-free diet you will make mistakes and get sick. Just pick up and keep going. You will likely notice your reactions getting much worse with accidental exposure the longer you are gluten-free. I would recommend getting some follow up testing like a vitamin panel and a bone density scan. It's also common to have thyroid issues, so you may want that checked as well. It takes time to get used to, but it's doable. I would recommend investing in a foodsaver. It's been a God send for bringing meals on the go. 

bartfull Rising Star
bartfull
Posted

I had a few meltdowns in the grocery store at first, walking out empty handed. Of course I lived on junk food before going gluten-free and the idea of eating plain whole foods seemed foreign to me. I'm not much of a cook!

Definitely, eating out is the hardest part. Being spontaneous is going to have to be a thing of the past. While I always carry non-perishable gluten-free food in my purse for those "just in case" times, it's hard to carry a whole meal. (Lara bars are good but not THAT filling.)

That means planning ahead. If you either eat before you go, after you go, or even bring food to eat while there, you pretty much need to know you ARE going ahead of time. So I keep the freezer full of individual meals that can be thawed or cooked in the microwave at a moment's notice. That can mean a one bowl meat/rice/veggie dish, some Against the Grain frozen pizza, or even a sandwich on gluten-free bread.

Depending on where you live there might actually be a safe restaurant or two in your area. Of course unless they are a totally gluten-free facility there is always a chance of getting glutened no matter how safe their practices are. I think I just read here the other day about someone finding a crouton in the bottom of their salad bowl. Mostly it doesn't happen but there aren't too many of us who haven't been glutened at a "safe" restaurant at least once.

Also, I have seen that some folks have trouble talking their friends into eating at only those places that have gluten-free menus and safe practices. That's why not only do you need to educate your family, but your friends too. If they care about you they will listen, learn about, and heed your need for safe gluten-free foods.

Another thing to think about - if you're out shopping with your friends and it takes longer than anticipated, instead of relying on a Lara bar or two, there is usually a grocery store nearby. You can run in and pick up something there. Fresh fruit, certain cold cuts, a pre-made salad (as long as there are no croutons), even a bag of Lay's potato chips.

Once you've become experienced at reading labels you can be assured of eating safely. Kraft products and Con-Agra (and a few others) will ALWAYS list any gluten ingredients on their labels. Those are big parent companies that have many many brands under their names.

It will take you a while but before you know it, all this will become second nature to you. I promise.

MatthewK Newbie
MatthewK
Posted

The number one thing I can suggest and wish I would have done was to join a support group.  I thought I could figure it out on my own and did, but it took several years of trial and error.  Had I joined a support group I believe it would have really shortened the learning curve.  

If your all ways on the go you have to plan your meals out at least 1-2 days in advance and have a small cooler bag/cooler so that you can bring your meals with.  The biggest reason for me getting accidental gluten, is when I havn't brought enough food, then I get hungry and risk going to a restaurant that I wouldn't normally go to, that is when I get sick.

The main thing that kept me motivated in the begining is that I have a family history of esophageal cancer and other cancers, and I know that if I don't stay gluten free I'll be next.

Good luck!

elizabelle Newbie
elizabelle
Posted
On November 27, 2015 at 10:11:56 PM, katelyann812 said:

Hi everyone! I was recently just diagnosed with Celiac. I was having major stomach problems for the past couple months. The issues would come and go- really bad nausea especially in the  morning, bathroom issues, VERY tired, feeling weak---ect. After testing double positive in my blood work- I was kind of in denial about actually having to make this step and start my "new" life. After going under the endoscopy - proven to have celiac... some damaged done to the villi's-- and high white blood cells. 

 

Today is day one of starting my gluten free diet. I feel like a lost soul. I am someone who is always on the go. The girl who has never had to watch that she ate...

Is it normal to feel sad? I feel like I lost my best friend! I feel as if my family and friends do not really understand how serious this is.

 

I already read the pinned post! But I am looking to hear others stories as well- advice?

What is it like first starting eating gluten free?

How can you explain to people how serious celiac disease is? my parents don't seem to FULLY understand..

 

 

 

Much is appreciated....thank you...

I felt like you wrote my thoughts out, symptoms and everything!!! I also was diagnosed about 3/4 weeks ago, and it's so hard to adjust sometimes.. it takes tons of planning & have to pay attention to every little detail... I've also just been cooking a ton & freezing small portions to bring with me, or carrying luna bars (which are ttly not healthy but better than gluten i guess....)

Sending you hugs... Hope it gets better soon!!! 

manasota Explorer
manasota
Posted

Elizabelle,

You might want to give Larabars a try.  I seem to remember that the ingredients are simple and more healthful.

Going gluten free is a major life adjustment.  However, it can be a very healthful diet if you stick to whole foods (nothing processed).  By the time you get to my age, you'll be very glad you had such a good diet!

Good luck!

manasota Explorer
manasota
Posted

Katelyann,

I initially found it very sad to have to go gluten free.  It helps if you start feeling better.  Then you'll start to believe it is worth it.  There is no downplaying the social cost.  There are ways to work around it.  Tricks, if you will.  It takes lots of planning.  Still, we're all managing.  With time, it will get easier.

As for getting other people to understand your dilemma...that is a bigger trick.  Some will get it immediately.  Some will get it with time.  Some will never get it.  Your best bet is to focus on yourself and your health.  Nothing is more important than your health.  Sometimes, when certain people refuse to support you, it might be best to change the people you "hang with".

Focus on being patient with your wonderful body!  It is doing its best to support you!  Give it all your love and understanding!

Hang in there!

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