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It Hit Me Last Night

celiac frustration anger sadness

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Posted 16 April 2014 - 11:11 AM

So it finally hit me last night.  My husband got home from work and was asking about dinner. I didn't feel like eating. He reheated chicken and I just watched him eat. 


Then the tears came. I've only cried happy tears over my diagnosis (being happy that I finally had a solution), but this was the first time it really hit me. I have Celiac disease. This isn't something I have to deal with for a few months. This is a lifestyle change that I have to continue, forever.  I was upset last night because I was tired of eating the same things (I know I need to experiment with cooking). I went to lunch with a friend and I was frustrated that somehow a non-gluten friendly item ended up on my plate. I'm tired of explaining to restaurants how careful they need to be. I'm tired of going places and having to constantly worry about what I can/can't eat. I fear that when I have kids, we'll have to go places that I won't be able to eat.  I worry that the next time a friend invites me over, I'll offend them by asking what they are cooking (happened already).  I worry that I will eat something wrong accidentally, but by the time I find out, I just have to deal with the symptoms. I'm am pretty much in constant worry. What if?


I know that in the long term, I will feel better. I feel better already. But on a daily basis, this is an internal struggle that I am learning to fight.


How do you cope? How do you deal?



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gluten-free since March 8, 2014

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Diagnosed with Celiac on April 8, 2014

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Posted 16 April 2014 - 11:56 AM

Its the doctors that frustrate me now, not the food.  I love real food.  So do my kids and husband.  Shop the perimeter and cook real food.  It is delicious.  i still have my pains, now and then, so I still have a problem and the doctors frustrate me, that will not go away soon unless you have a great doctor.  But the food we can fix that.

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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014

I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.

Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein




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Posted 16 April 2014 - 12:03 PM

Accept the grieving process. Get sad, get mad, then get over it. But don't just push it aside, brush it away like it isn't worth mourning. Because it is HUGE to change your lifestyle. So go through the process and once you feel better you'll just wonder when it happened; when did I feel good again? And come here and vent your frustrations. I get tired of the same food all the time, too. Get a few cook books and start experimenting. TRy out old favorites with substitutions... it will get better. ((Hugs))

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"We can't help everyone, but everyone can help someone." Ronald Reagan


Diagnosed Celiac via blood test 8-22-13

Dairy & gluten free in 8-22-13 then did gluten challenge in October

Endoscopy/Biopsy Oct-26-13 positive for Celiac

HLA-DQ2 positive

Vitamin D insufficiency confirmed 12-6-13

Dairy Added back in successfully 3-1-14

Normal Antibody Levels 3-19-14! 

Egg, sugar alcohols Intolerant 5-2014

Dairy removed again 10-2014 due to ongoing diarrhea symptoms

Diagnosed with Microscopic Colitis after colonoscopy 12-1-14


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Posted 16 April 2014 - 12:53 PM

I agree, there is a mourning process. I have been gluten free for over 4 years and I think that I'm still dealing with a bit of sadness that I will have to continue to eat this way forever. And it's not because gluten free food tastes bad, but I'm more mourning the loss of spontaneity, if that makes sense. The loss of being able to order something off a restaurant menu without stressing or eat food that a friend has made, without playing the 20 questions game.


So, you're not alone!

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Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge









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Posted 16 April 2014 - 01:00 PM

I know I was kinda the same way. I didn't cry tho. But I was upset about eating the same foods. And saying something to the waitresses and stuff. It becomes second nature. I ask for Gluten free menu but have to scrutinize it for corn products. My friends just accept it now. The way I got over the same foods is I use seasonings. Now my husband walks in the door and says that smells amazing! I kinda like it on his Pizza night I get a steak :) There is always a yeng to the yang you just have to find it. I agree the perimeter of the store is good! Eat whole foods fresh fruits and veggies with good gluten-free. Spices and you'll be healthier than ever! :) 

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Posted 16 April 2014 - 01:25 PM

I never had any problems going gluten free because I was so very sick at diagnosis....it was super easy for me.  HOWEVER......one day, the Greek festival returned to my city after a devastating fire in the church stopped the celebration for about 4 years.  I was so excited because my husband and I enjoyed going and eating all that fantastic Greek food, made with love by all the little old Greek ladies in the church.  As I excitedly told my husband about the banner I saw and how we could go and......and...... :o ....I did this and broke down in tears as it hit me that I would never, ever be able to eat at the Greek festival again.  That was the one bad moment I had so I understand your feelings, even if mine was over one issue with being gluten free.  But, I can assure you, this too shall pass and you will become very OK with this.  I learned how to make gluten-free Greek food.....expect the Spanakopita.  I am waiting for the day when I see gluten-free phyllo dough in the freezer section of the food store!  :)

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Posted 16 April 2014 - 01:46 PM

Yeah I get you :( It still surprises me how emotive food can be - particularly when you're denied it (whatever gluteny thing that may be) and when you have to be on your guard or defensive if you trust someone else (a friend or a chef) to arrange your food. Like moosemalibu said it is a grieving process because you suddenly have to say goodbye to something. I'm six months in and I'm expecting it to catch me out again before my 'anniversary' - seasonal food = emotive food haha! Next up is the city's beer festival and BBQ season :( 

With friends and family I try to keep it fairly light - if they are interested and supportive I'm happy to chat about it but otherwise it's my diet, my health and none of their business. For myself, if I feel frustrated by what I am/am not eating I try to focus on how much better I'm feeling and how proud I am of myself for adapting to a new diet (and then tuck into my favourite gluten-free snack and/or ... and ... a glass of wine :D) It gets better. 

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Posted 16 April 2014 - 02:58 PM

I had my moment a few weeks after my diagnosis. We live with my in-laws and they brought home KFC and left it on the kitchen counter. I went to the kitchen for a snack or drink or something, I don't remember, and smelled it and just completely lost it. I was a train wreck, and I thought I was completely crazy for feeling that way about freaking CHICKEN! But everyone here helped me realize I wasn't crazy, and it wasn't just about chicken, it was about everything that was happening. It's okay to mourn what you've lost, because it isn't just food. It's freedom and memories and so much more. So rant, rave and get it out so you can move on without the baggage. And we're here for you. (((hugs)))

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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."


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Posted 17 April 2014 - 12:12 PM

Oh yeah. I totally had a few moments of anger and tears and denial and defiance (yeah. don't do defiance. I got sick a couple times when I just said "screw it") 


What finally gave me peace was redoing my kitchen. I bought a good paleo diet cookbook (I can't eat dairy either)  I spent an entire day cleaning out a bunch of old stuff, installing a couple of shelves...and I splurged on a bunch of the alternative food stuffs from the health food store. I spent about $150 bucks total, but MAN it was SO good for me psychologically to take control. 


Now I just think ahead and keep stuff on hand like PB and celery, carrots and hummus, canned tuna and chicken to make salads...I made a really good "paleo bread" recipe. I am discovering what gluten-free beers taste good.  I have control of it and it really helps. 


My bf and I used to eat out a lot so that is still a PITA but we tend to frequent the same places, and the wait staff / cooks are really awesome and helpful. 


((((((hugs))))  Best of luck, I hope this post is helpful! 

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Posted 17 April 2014 - 01:56 PM

HUGE GREAT BIG HUGS!!! I completely understand too. Just when I think I know all the stuff I can't have, I find something else. Last week it was those robin eggs for Easter. Technically, I think I *knew* I couldn't have them but it wasn't until my hand was going to them for my yearly gorge that I truly KNEW I couldn't have them. I'll neither confirm nor deny tearing up at Walmart. 


So I came home and baked bread, brownies, and cornbread. And made a huge pot of beans and ham. And drank wine. And ate dark chocolate. 


It's up and down. More ups lately!!


Also, I agree about how much more in control I felt after I cleared out my entire kitchen and started over. That was probably the single most comforting thing that I did. 

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