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Really Struggling With Diagnosis


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#1 Rachel63

 
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Posted 20 October 2013 - 08:12 PM

Hi, I have recently been diagnosed with Celiac disease at age 50 and I have to say I am really struggling with this. I know things could be so much worse and in the sheme of things I have been very lucky as there was a few tense days when my doctor and I believed something much more sinister was going on. My problem is everything I enjoy eating is now a forbidden food. I am well aware there are great gluten free options now but I just do not have the time,energy or desire at this point to even try. Is this normal?

 

I run a very busy business with crazy hours and lunch has always been something I grab when i can. I cannot find a single "grab it on the run" option that I actually want to eat! I have never liked salads and would like it even less with no dressing. I usually make quick easy meals at night and now I have to think about every single ingredient and usually end up just making the same sort of meal for my family that I usually would make and not eating myself. I really resent this diagnosis and am so angry that I have lived 50 years without knowing and the effects it has had on me like low iron, fatigue, stomach problems and intolerance to certain foods yet no one ever thought to test why.

 

I know I will cheat. I already have. It was picked up when my doctor ordered a whole heap of tests to find out why I have lost 10kg in the last few months and why I have totally lost my appetite. We thought it could be because i have done so much travelling and maybe picked up a bug. After blood was detected in my bowel and my liver function was all over the place I had a gastroscopy/colonoscopy where celiac was suspected and backed up with a blood test. I also found out I have three bolders in my bile duct and need surgery. I am tired, irritable and resentful of the changes I have to make and grieving all the food I love and the ease of getting food. I want to know if this is normal and how long does it take to adjust and accept; Thanks


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#2 shadowicewolf

 
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Posted 20 October 2013 - 09:04 PM

Hi, I have recently been diagnosed with Celiac disease at age 50 and I have to say I am really struggling with this. I know things could be so much worse and in the sheme of things I have been very lucky as there was a few tense days when my doctor and I believed something much more sinister was going on. My problem is everything I enjoy eating is now a forbidden food. I am well aware there are great gluten free options now but I just do not have the time,energy or desire at this point to even try. Is this normal?

 

I run a very busy business with crazy hours and lunch has always been something I grab when i can. I cannot find a single "grab it on the run" option that I actually want to eat! I have never liked salads and would like it even less with no dressing. I usually make quick easy meals at night and now I have to think about every single ingredient and usually end up just making the same sort of meal for my family that I usually would make and not eating myself. I really resent this diagnosis and am so angry that I have lived 50 years without knowing and the effects it has had on me like low iron, fatigue, stomach problems and intolerance to certain foods yet no one ever thought to test why.

 

I know I will cheat. I already have. It was picked up when my doctor ordered a whole heap of tests to find out why I have lost 10kg in the last few months and why I have totally lost my appetite. We thought it could be because i have done so much travelling and maybe picked up a bug. After blood was detected in my bowel and my liver function was all over the place I had a gastroscopy/colonoscopy where celiac was suspected and backed up with a blood test. I also found out I have three bolders in my bile duct and need surgery. I am tired, irritable and resentful of the changes I have to make and grieving all the food I love and the ease of getting food. I want to know if this is normal and how long does it take to adjust and accept; Thanks

You cannot cheat. That is not an option. If you keep cheating, not only will you not get better, you will also increase your risk of other AI diseases and cancer.

 

Gluten withdrawl is not fun.

 

As for meals, you could make big batches of them on the weekends and freeze them and bring them in. You could use a crock pot and make something that way. Some gluten free bread or corn tortillas, cheese, and lunch meat is quick and easy. Fruit and veggies with a dip is always an option.


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#3 nvsmom

 
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Posted 21 October 2013 - 06:02 AM

Wolf has a good point: the first few weeks gluten free often involves a withdrawal that can make you feel exhausted, cranky, headachey and worse than you did before. Not everyone gets it, but it sounds like you're one of the unlucky ones. Hang in there. Once more energy comes back, it will be a bit easier.

 

You should probably make your house as gluten-free as possible. All sauces and condiments should be gluten-free, or else get your own peanut butters and label them clearly as gluten-free.  Get rid of wheat flours, we can't safely bake with those easily... The esiest thing for you to do is to convert your house into a gluten-free home as much as possible. Buy rice noodles and gluten-free bread. Make gluten-free muffins for everyone... Stuff like that. If your faily puts up a fight, and you are the main cook, make meals that are naturally gluten-free like meat and potatoes, rices, chillis, soups, stews (without flour) or burgers (no bun or a gluten-free bun)... I know it's easier said than done - at first all I could see what I couldn't eat but that shifted after some time.

 

Buy some easy snacks to have on hand. Lara bars are handy snacks to tote around. Nuts or trail mix is a good thing to carry too. Make eggs for breakfast and bring extras to work for lunch, or bring last nights's leftovers.... That's one area you can't get around in this disease - you will need to plan your food ahead of time or you'll be eating an apple or a salad while everyone else enjoys their food.  :(

 

And no cheating... It takes weeks for the intestines to heal after consuming gluten, especially early on! After decades of a misdiagnosis (me too) it will take months for your body to be well, you don't want to slow it down. It took me well over a year before my body slowed it's production of autoantibodies; my tests are just now getting back into normal range and if I had been cheating, I'm sure it would still be attacking my intestines. You can't cheat.  Splurge and buy gluten-free goodies and junk food if you are feeling deprived (I sure did in the first few months) but don't cheat.  :(

 

Has your family been tested? It's a partially genetic disease, and doesn't always have symptoms, so your children should be tested as soon as possible as well.

 

Best wishes and welcome to the board.


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#4 notme!

 
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Posted 21 October 2013 - 08:11 AM

((hugs!))  i promise you will feel better if you stick to the diet.  i was in denial for A FEW MONTHS - (who has celiac?  notme!  lolz)  until i got so much worse i couldn't even keep anything down.  i was beyond no appetite - i was starving to death.  it was soo not fun :(  i guess it takes time to wrap your head around the whole thing, but, trust me, it will get easier.  it does sound like you're going through withdrawal - i did, too, but i had the luxury of taking it easy until it was over and i was back on an even keel.  if you have anybody who can cover for you or take vacation (< i know, lolz, i used to have a very busy career) now would be a good time to rest if you can.  what DO you like to eat for lunch or what's your go to snack?  there are plenty of subs/tricks you can get on here and if it's a specific meal or dish, we can help you make it gluten-free.  go on the 'what's for dinner" thread on the baking/cooking section of the forum.  also, if you haven't already, read the "newbie 101" thread in the coping section. 

 

it sounds terrible, but you have a diagnosis, some people just get the runaround and still have no answers.  you seem like a 'take charge' sort of person.  you can do it :) 

 

lolz - ps - i'm 50, too :)  it's for the birds haha but i am not feeling ancient like i was a few years ago!


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

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have a nice day :)

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#5 tommysmommy

 
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Posted 21 October 2013 - 07:40 PM

It does such at first but I promise it will get easier. Eating out and convenience are a problem, but you'll figure it out and there is an active celiac community (here, fb, twitter) willing to help. We all get it. It's almost frightening to realize everything you always ate is now bad for you. Guess what, eating so much of that stuff is bad for everyone - once you adapt, you will stop craving it! So the big question is.. what did you eat before? What were your fav foods? I've had to take my entire family of 5 gluten-free & we've found good gluten-free substitutes for everything (except calzones, don't even try on that one). Would be happy to give some recipe/product tips to adapt a meal. Also, I suggest trying to make your family dinner mostly gluten-free & make a little extra to pack for lunch the next day. Or I'll often bake a chicken breast at night to slice up for lunch with some cheese & fruit. It is more work but soon you'll be feeling so much better, it'll be worth it.
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#6 NoGlutenCooties

 
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Posted 23 October 2013 - 09:54 AM

 I have never liked salads and would like it even less with no dressing. I usually make quick easy meals at night and now I have to think about every single ingredient and usually end up just making the same sort of meal for my family that I usually would make and not eating myself.

 

Salads aren't so bad if you add some nuts, and/or chicken, etc. to spruce them up.  Also, not all dressings have gluten.  I'm partial to Hidden Valley Ranch - certified gluten free.  Newman's Own dressings do not have gluten (not sure if that is true of all varieties/flavors, but I know several of them are safe).  You just have to read the labels carefully.

 

One quick and easy meal idea is stirfry.  There is gluten-free low sodium soy sauce - and it actually tastes exactly the same as the gluten variety.  You can include any combination of vegetables and either chicken or sausage (careful with the sausage though - it can contain fillers too).  I found Aidell's sausage - it is very tasty, minimally processed, no MSG, no Gluten, no preservatives - and it's already cooked so you can just cut it up and pop it in the stirfry and you're good to go.  I have also found that I can hide vegetables in there that I wouldn't ordinarily eat on their own. 


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#7 eers03

 
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Posted 23 October 2013 - 07:09 PM

It keeps getting better as you learn how much is still available to you in a gluten free form.  I still eat most of my favorite dishes but with gluten-free substitutes.  I still eat spaghetti, the noodles are derived from rice or corn now...  I still eat cookies.  I buy the gluten-free mix.  

 

As for cheating.  Thats pretty much non-negotiable.  If you think your body is "off" now.  Keep cheating. Upon initial diagnosis, I had no idea how I was going to make it work.  I was miserable.  I think thats a pretty normal reaction.  Trust me, it gets better.  Hang in there!


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Diagnosis 11/2012

#8 GFinDC

 
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Posted 24 October 2013 - 12:37 PM

Welcome to world of  gluten-free eating!  There are thousands of people here who have gone gluten-free and lived to tell the tale.  I was diagnosed about the same age as you.  Ever hear that song line, I never promised you a rose garden?  Kind of right I suppose.  But  if you stick with the gluten-free diet strictly your body can start absorbing nutrients (vits/mins) again and recover from the damage.  The immune system is very sensitive and isn't going to ignore your occasional cheats.  And the immune reaction goes on for weeks or more.  That's weeks of damage to your body that is preventable.

 

Friday nights used to mean a 6 pack of Sam Adams and turkey pot pies for me.  Being the Halloween season it would have been Blue Moon pumpkin beer instead.  I understand the changes needed seem hard.  But eating gluten-free will make you feel better, be stronger, think clearer, and probably live longer.  All good things.  You can do it! :)   Here are some tips for getting started and threads for info, including surprise!  Stuff to eat!  There is actually a lot of food we can eat, and it is pretty tasty stuff too.  You may end up eating more "real food" instead of processed chemical loaded crap though.  But your body will thank you for not polluting it.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What's for dinner tonight chat?
http://www.celiac.co...ooking-tonight/

Dessert thread
http://www.celiac.co...399#entry802399

Easy yummy bread in minutes
http://www.celiac.co...ead-in-minutes/

 

Super Easy Meal Ideas Anyone?
http://www.celiac.co...l-ideas-anyone/

Good Gluten Free Meals Prepared Using A Microwave?
http://www.celiac.co...ve/#entry885634


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul




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