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Newly diagnosed and totally overwhelmed

akohlman

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akohlman Newbie
akohlman
Posted

so i was just recently diagnosed with Celiac disease and I am having trouble wrapping my head around it....

While i know that maintaining a gluten free diet is going to help me feel better - i can't get over the fact that i cannot eat my favorite foods anymore..

no more pizza, no more pasta, no more wheat thins.......... yes i realize there are gluten free versions of all of these but it's obviously just not the same.  I can't just go out and grab a couple drinks at the bar with my friends anymore..... i really do not know how to handle this and it's already wearing me down.  I feel like after living for 28 years my entire life has flipped upside down and everything is going to change...

i'm sorry for sounding like such a lost puppy but i just wanted to vent a little bit and see how you all deal with this... i told my friends about it and they act like it is so not a big deal at all but to me it feels like my world has come crashing down 

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!

Go ahead and rant!  Scream and holler!  Weep.  It is totally normal to go through a grieving process.  We have all been there!  You are NOT alone!

When you pick yourself off the floor, start researching.  Learn about the gluten free diet.  Start with easy-to-digest foods that are naturally gluten free (meat, fish, veggies, fruit, etc.).  You may have to give up dairy for a short time until your villi heal (the villi tips release enzymes that help digest lactose (milk sugars).  Skip all the processed foods until you are improving.  That will give yourself time to forget what bread really tastes like.  Avoid eating out for a few months -- it's easy to get cross contamination.  Best to explain your gluten-free needs when you, yourself, "get it". 

Read our Newbie 101 thread under "Coping" for valuable tips.  

You can go out and drink with your friends.  You might have to avoid alcohol for a few months.  But when healed you can drink!  Just no beers, malted beverages.  Most distilled liquor (e.g. volka) is gluten free.   So, is wine.  Skip the gluten free beer for a long time.  

Find other celiacs in your area.  In the meantime, visit with us.  It does get better.  

 

 

 

Jmg Mentor
Jmg
Posted
3 hours ago, akohlman said:

i'm sorry for sounding like such a lost puppy  

Don't apologise! Not needed here at least where people know exactly what you're going through. As Cyclinglady says, you're now in a grieving process for the former, carefree attitude to food you've now lost. You may find this helpful in understanding the psychological journey you're on:

Open Original Shared Link

It WILL get better. Eating cleanly is very good advice as you heal but you can then find the replacement snacks and treats that are safe to eat.  I now know which chocolate bars are ok, which brands of crisps (chips) are safe etc. 

I don't drink now, but I did find there were some fantastic ciders that I could tolerate and you've always got wine! In fact one of the weirder discoveries post gluten was that my past (vicious) hangovers were far more about gluten reactions than the alcohol itself. A cider hangover is a breeze in comparison :)

All the best!

 

Poppycat Newbie
Poppycat
Posted

I am so sorry, this part sucks a lot but it does get better. When I found out i couldn't eat the way I was used to, it was horrible. I went through a period of grieving but it did get better.  You'll find foods that you may like better and something that will never be replaced. Funny thing is my memory of how certain gluten containing foods taste is much more positive than the reality.  

GFinDC Veteran
GFinDC
Posted

Hi akohlman,

It is quite an adjustment.  But it isn't a bad change.  While you have to give up some foods you may also end up finding other foods you really enjoy.  And most likely you will be eating a more nutritious, healthier diet than many of your friends do.

Try to stick to whole foods you cook at home for a while.  If you want to eat out you can take food with you, or spend some time on the web searching out gluten-free restaurants on your area.  But to get started learning, it is best to cook you own food.  Meat, veggies, eggs, nuts and fruit should be the main foods you eat.  Maybe dairy will work for you, maybe not.

It can take months for the immune reaction to stop and your body to heal enough to absorb nutrients properly.  It is good to get your vitamin and mineral levels checked so you know which might be low.  Even a tiny crumb of gluten can make us sick.  Cross contamination is a real problem.  And since the immune reaction doesn't stop when the food leaves your body, you have to be careful what you eat/drink.  But after you have been doing the gluten-free diet a while you get used to eating different and it becomes the new normal.

MrsChoplin Newbie
MrsChoplin
Posted

akohlman--I am exactly 1 month from being diagnosed and still going through cleaning out of all the gluten foods from my life. I have really bad Dermatitis Herpetiformis but other wise I had no reason to think I had something like Celiac Disease. That being said, I TOTALLY understand. For me... its hard to be sick and not feel sick if that makes sense.....

 

I'm going to make the changes. I'm going to live a gluten-free life but like you... I STILL am devastated. I'm overweight... so obviously I don't have a healthy relationship with food, LOL, so I'm DYING at the idea of never eating Pizza Hut, Chili's Pasta, Red Lobster Pasta, McDonalds, etc. I don't care what anyone says.... that is a HUGE adjustment for me and I'm still reeling from the "loss".

 

That being sad.... I have 3 children and a husband depending on me and I'll do all I can to lengthen my lifespan so.... Here is to new journeys.

 

YOU ARE NOT ALONE in your sadness!

cristiana Veteran
cristiana
Posted

It is overwhelming at first but step by step you will begin to find food you like - new naturally gluten free 'clean' food you have never tried before, or gluten free substitutes that taste  almost as good or just as good as the food you miss.  

Someone told me one just get used to gluten free bread in the end.  But there are some on the market that are so convincing now they have even fooled my gluten eating family.   (On the subject of bread, one useful tip someone gave me early on is if one toasts gluten free bread it tastes much better.  Others may disagree but I think it does - but you will need your own gluten free toaster.... )  

I am also finding that as time goes on there seems to be more and more on offer for us in the shops.  The annoying thing here in the UK is one supermarket does superb ready meals for example, another does great gluten free bread, and another sells delicious gluten free Worcestershire Sauce, but it is hard to find one that sells everything you need under one roof at times.   I don't know if it is like that where you live but if it is like this you will get wise to it and end up getting used to stocking up when the opportunity presents itself.

Eating out is often challenging but after not eating out for a while when I was healing I have now found a few restaurants, and a couple are chains, that I can trust.    

Lastly, it is always good to have some gluten free snacks - fruits, nuts, bars etc, at the ready when the hunger pangs strike and there is nothing there for you.  I still forget and today went to a museum with my son and had to watch him in the cafe eat his cheese and ham toastie and all I had was a cup of tea!   

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Ya Ya Newbie
Ya Ya
Posted

Hi!  I know I'll never forget the day I was told after an endo- and colonoscopy that I indeed had celiac disease.  I immediately went to a Trader Joe's grocery store and bought some gluten-free things to eat.

about a month later I had a Total meltdown in my car outside a grocery store---feeling So Sorry for myself!   I cried and said I'll Never to able to eat what I want to again!

that was 10 years ago and gluten-free foods have come a long way.... I love having a gluten-free everything bagel and delicious gluten-free 'Oreo cookies'----neither of which there were 10years ago.

Everyone who has responded so far have Great Tips!  The best news is that your Diet will cure you!  I do not know of any other condition where this is true!!

BTW---some of your friends and family Will understand and will make sure you aren't hung out to dry foodwise........and others just won't/can't understand and will think that just avoiding bread is enough..... Be kind, but don't risk your health to be nice to someone who forgot or doesn't understand.

keep reading!  Keep trying different gluten-free foods to find what you like!  

Best wishes!!

 

Newly Diagnosed Apprentice
Newly Diagnosed
Posted

It is very overwhelming at first for sure.  I had a positive blood test in November and I was in denial until the biopsy came back and it was positive too.  :( As the months go by it has gotten easier but I do still feel sorry for myself sometimes.  Whenever I start to feel sorry for myself I focus on the positives.  There are so many wonderful gluten free foods and beverages that we can have.  Your health is more important than eating gluten and there really are very good options out there that are gluten free.  If you try something you don't like, don't give up and think that none of it will taste good, because there are lots of gluten free things that taste awesome. 

  • 2 weeks later...
AM63 Rookie
AM63
Posted

Hi you are not alone I am still waiting my full diagnosis but am gluten free for a month now it is very hard, and I am still struggling with it all, especially when you have family who eat a ' normal ' diet. I crave bread and some meals terribly some days,and feel very down ,but keep going I have been assured by a Coeliac friend that this is normal and it does get easier. I am dreading it long term but this is now my reality I have a meal out soon and ordered a gluten free meal but am very nervous about eating it ,I will not let this rule me so onward and upward. Good luck to you and know as I do here is a place to rant etc where people understand.

  • 2 weeks later...
spunky Contributor
spunky
Posted

I've been off gluten for just over ten years now...remembering back...I used to cry as I walked the grocery store aisles.  At this point, I feel like being gluten free is easy if you can just take charge.  Do your homework and find out what you can have at the places you go...it's getting easier all the time.  I like eating at home, but I know at 28 you might want to spend more time going out, etc..   Find out the places that have gluten-free stuff and tell your friends that's where you'll be!

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