Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Really Struggling With Diagnosis
0

8 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

((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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




 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. 

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

What's For Breakfast Today?
http://www.celiac.com/gluten-free/topic/81858-whats-for-breakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.com/gluten-free/topic/87765-what-did-you-have-for-lunch-today/

What's for dinner tonight chat?
http://www.celiac.com/gluten-free/topic/75238-what-are-you-cooking-tonight/

Dessert thread
http://www.celiac.com/gluten-free/topic/93840-whats-for-dessert-tonight/page__pid__802399#entry802399

Easy yummy bread in minutes
http://www.celiac.com/gluten-free/topic/56641-easy-yummy-bread-in-minutes/

 

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

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,346
    • Total Posts
      917,409
  • Topics

  • Posts

    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
    • Will my doctor test me? So many symptoms...
      Hi! I was hoping some of you might be able to tell me if my symptoms seem like good reason to be tested for celiac disease... I actually asked my doctor to test me (years ago) and she told me she would not test me because the test is expensive... However, I am now desperate to figure out how to manage my health issues and am willing to find a doctor that WILL test me if my symptoms seem to point to celiac...Here they are:
      I have been diagnosed with all of the following over the last 12 years (I am 22 years old, and have always been a healthy weight/slightly underweight, and quite active):
      Irritable Bowel Syndrome Fibromyalgia Anorexia (started when I was 10, I have been mostly recovered since I was 14) Depression Anxiety Panic Attacks Horrible mood swings (from suicidal to totally fine in a matter of minutes)
        Chronic constipation and bloating Acne   HOWEVER, no one in my family has been diagnosed with celiac....am I wrong to think I have it??
    • Weird Reaction
      Yes, I was surprised about the MSG in broccoli as well. I just had a quick look now as I couldn't remember where I had read it but some mushrooms have it to. A Google search will bring up a few things. I always just thought MSG was an artificial food enhancer!! Insecticides are still a big possibility though. Why do you not want to try organic? We buy organic when we can and fruits and veges that are in season are usually the best and cheapest.  Thank you for the link, Cristiana. Very helpful. I have an appointment with my Naturopath in a couple of weeks and going to have a blood test done before that. She is excellent. Very knowledgeable and loves her work. Until then I'm not taking any supplements. I generally eat pretty well anyway so we'll see what she says. In the past I have used B12 injections (aka Neo Cytamen) which I found much better and safer than taken orally and very cheap. The energy boost was very noticeable. I didn't know it helped with anxiety though. She has also had me on Magnesium, Probiotics and Vitamin D3 and I also make my own Liver Tonic (Milk Thistle, Dandelion Root Powder, L-Glutamine, Taurine and Choline Bitartrate) which I use from time to time for a quick detox. Too much of anything can be bad but I think iron can be not real good in large amounts. Deficiencies can be related to gut health and/or competing for absorbtion with something else you may be taking I found. I'm no expert though but just a few things I've picked up during research. My normal GP told me to just eat some more red meat but I want to speak to my Naturopath first before supplementing. Her knowledge on nutrition is a bit more up-to-date.  I was just sitting there at lunch today after feeling great all morning and had a "weird feeling" come over me. Just a not quite right feeling. Very hard to describe and nausea seems to have returned to. It's funny that as I get older any little thing I get I seem to think it's life threatening even though all the tests I get back say I'm in good health. I guess that's part of that dread and doom and gloom feeling I mentioned earlier. Wish that would go away.  
    • Gluten and panic attacks
      There are great gluten-free pizza crusts out there, as well as good dairy free cheese. I find the key is to add good toppings, e.g. meats, carmelized onions, other veggies, white anchovies. Life goes on. Congrats. Hope the good feelings keep up. 
    • Gluten and panic attacks
      Just want to update incase anyone can find this helpful. I have stopped eating grains and dairy and everyday I'm feeling more and more like myself. It's amazing and I don't really care that I won't eat a regular pizza again. I mean 4 months ago I would have said I would die without gluteny soft pizza, now I am happy to never eat it again if it means I will never have to suffer a panic attack.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,480
    • Most Online
      1,763

    Newest Member
    Luposgirl
    Joined