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Can anyone relate and help?

Isabel Z

By Isabel Z
in Coping with Celiac Disease

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Isabel Z Rookie
Isabel Z
Posted

I’m a teen with celiacs. It’s so hard for me for many reasons. 1. at social events it is so awful to not be able to eat anything except snacks from home. 2. I am still very short and it’s embarrassing! 3. i have to go to the doctor every 3 months for lots of blood work. Is every celiac’s life like this or just mine? Can anyone help me cope with celiacs?

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cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, Isabel Z said:

I’m in middle school and here is my story of celiacs. i was short all my life and had mild stomach aches. Finally, about a year and a half ago, my doctors realized it was celiacs. The blood tests came back positive for it, so i got the endoscopy. sure enough, i had celiacs. it is so hard for me for many reasons. 1. at social events it is so awful to not be able to eat anything except snacks from home. 2. I am still very short and it’s embarrassing! 3. i have to go to the doctor every 3 months for lots of blood work. Is every celiac’s life like this or just mine? Can anyone help me cope with celiacs?

Welcome Isabel!  

It is hard having celiac disease, but after a while it does get easier. 

Just so you know, I am an adult, but I am a Girl Scout Leader, have a daughter who is 16 and one of my daughter’s friends was just diagnosed with celiac disease just three weeks ago!  

Social events can be hard, but you can bring some food that is actually better than just snacks.  If I am going to a friends house, I can bring food and reheat it in the microwave.  I also have a good thermos that I can fill with Spaghetti, chili or soup.  I also bring ice cream and keep it in the freezer.  One of our troop members is really allergic  to nuts and milk, yet all her friends (true friends) accommodate her.  For example, I make some pretty good gluten free, dairy free, and nut free brownies for her.  At our troop meetings or camping, we never bring nuts.  She is never left out.  Now, we are working with our Newbie celiac friend.   My daughter and I took her a care package, so that she can start baking gluten-free chocolate chip cookies.  

Short!  That is me.  Not everyone with celiac disease is short.  You may find that you end up growing more, but remember, genetics plays into it too.  My brother grew after high school!  

I think that you probably see your doctor often, because they want to insure that you are following the gluten free diet.  Consider yourself lucky because some people do not have access to medical care.  They must manage this all on their own.  

Take care and be safe!  Do not give out too much private information (did I say I was a Mom?”)  be patient and some other teens should show up in the other sections, but you can always ask anyone here a question.  

P.S. Check out celiac summer camps.  Google it.  Imagine a ton of kids just like you!    I wanna go!  

 

Isabel Z Rookie
Isabel Z
Posted
  • Author

Thanks so much for the tips! I told my mom them and she thought they were pretty clever. And I never realized how lucky I was to have medical help. I’ll be much more careful with personal information. I was going to delete the post in case it had too much info but i can’t unless you delete your reply. It’s ok though. Thank you!

Ennis-TX Grand Master
Ennis-TX
Posted

I fix meal packs in a food prep kit I got online called a jax pack I can fix enough for 1-3 days depending on which pack I fill. I find fixing full on meals in advance...think something that looks great bento style and smells amazing to make others jealous and make it look pretty so you can smile when you pull it out and brag about it.....I had to go the ego route with it sometimes to comfort myself. This allows me to go out and eat sometimes with others. I learned to cook and offer to cook for others...perhaps you can practice and amaze your friends by fixing up some gluten-free dish like crock pot roast, or chicken shred it and have a nacho party? Think of something easy, naturally gluten-free and can bring everyone together and amaze them with your cooking skills. 

I have comprehensive list of gluten free foods, while we do normally suggest a whole foods only diet, there are options now days for instant meals, and all those standard kids quick foods like hot pockets, cheese sticks, nuggets, tots, corn dogs, etc now from other companies so you can also look the part and not feel that different.

You are indeed very lucky to have medical services...I have not been able to see a actual doctor since last fall when I lost insurance....I have some friends who are doctors who help out and a chiropractor that will work with me but I can not get blood or labs done.....imagine having to trouble shoot everything and go hit and miss all the time.....

https://www.celiac.com/forums/topic/120402-gluten-free-food-alternative-list-2018-q1/

 

GFinDC Veteran
GFinDC
Posted

Hi Isabel,

Your body needs nutrients to grow.  Nutrients not absorbed well when we have celiac disease damage in our guts.   But, if you do a good job of avoiding gluten, the gut damage should heal and you will be able to absorb nutrients again.

The thing to remember is celiac disease is an immune system reaction.  Immune reactions are very sensitive and just a tiny amount of gluten can get them going.   And they can last for months.  So it;s very important to avoid all gluten all the time, to keep the immune reaction down.  Keeping the immune reaction down keeps the damage down, and the healing can keep up.

You may start to grow more if you can absorb nutrients better.  Some extra vitamin pills might be a good idea.  Your doctor should know.

 

cyclinglady Grand Master
cyclinglady
Posted

Isabel,

You did not give out any personal information that could be traced to you.  Good job!  Just do not mention your last name or where you live.  There is a million Isabel’s out there and one is in my troop (she play water polo and the trumpet).  There an advantage to being anonymous.  Like when you are talking about barfing or the big “D”.  Some subjects you would only tell your parents or doctor because it is too embarassing.  

I am just careful because I work with kids and we talk about internet safety.  

Glad you like my ideas.  Other member have good tips too.  I can tell you that when I open up our salads  and our steamy thermos’ of chili at the high school football games, the surrounding people are envious!  I bake our own cookies, cupcakes and brownies and freeze them.  That way we always have something just as good at parties.  I make gluten-free goodies to share and everyone loves them. 

 

pdm1981 Collaborator
pdm1981
Posted

You don't have Turner's Syndrome do you? My niece was diagnosed with celiac disease which later led to a diagnoses of Turner's. There is evidently some sort of connection between the two. They gave her shots of HGH to help her grow because she too was very short.

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