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      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.

New To Celiacs And Having A Hard Time
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17 posts in this topic

I found out about a month a go that I have Celiacs.  It has been really hard for me.  My life is food.  My family own a KFC and LJS and have been in the business for 30 years.  I am in our store everyday and it is so hard to look at all the food we serve, that I love and no longer eat. 

 

I have had to take more antidepressants because I was having thoughts of killing myself.  Most days are okay.  But some I end up depressed and crying (and that is not me). 

 

All my family is very supportive and they are doing what they can, but I guess am writing this because I need to open up to people who are in the same boat I am. 

 

It's been so easy to get depressed.  When I am up set and crying, I keep thinking that someone will come and throw me in the nut house. 

 

Taking each day as it comes.  Its about all I can do right now. 

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aww :(  it'll be ok - you will feel better soon.  right now it's hard, i know.  have you read the newbie 101 thread:

 

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

 

we all go through a grieving process (about our food and what we can't have anymore) (sounds dumb but it's true!) and hopefully you will get through this soon.  welcome to the best club you never wanted to join  :huh:  we're all kind of in the same boat here - i don't think we've thrown any in the looney bin yet....   ^_^

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welcome!

 

I'm so sorry you are feeling this way now, but it does get better!  So much better!!  I was on anti-depressants for awhile but was able to stop them before going gluten-free, but I still had some trouble with anxiety.  After going strictly gluten-free, anxiety is almost off the radar!!  

 

I can only imagine how hard it must be to face that type of work situation, but as you start to feel better, you'll want that food less and less.  Come on here when you need to vent because we've been there  :)  

 

also were you tested for vitamin deficiencies when you were diagnosed with celiac?  If not, here is a list I would ask to be tested for since celiac affects nutrient absorption.  A Vitamin D deficiency has been linked to depression, and that is a very common deficiency for someone with celiac to have.  As I started putting more of the pieces together it made me realize I wasn't feeling this way just because, but it was because I was eating the nutrients but not absorbing them properly.  Here are the tests I would ask your GP to run:

 

Vitamin/Minerals:

Complete Blood Count (CBC)

Complete Metabolic Profile (CMP)

Vitamin B-12

Folic Acid

Vitamin A, D, E, K

Ferritin

Iron

Magnesium

Zinc

Copper

Niacin

Riboflavin

C-Reactive Protein

Good info from University of Chicago Celiac Center:

http://www.cureceliacdisease.org/archives/faq/what-common-nutrient-deficiencies-might-an-adult-experience-prior-to-diagnosis

 
hope you feel a bit better by the time you read this!
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Arlene is right, this is most definitely a grieving process because not only are we giving up the food we love, but also certain social situations, events, and maybe even people that just dont quite understand what we go through.  This disease is a life changer for sure - there is no pill to swallow to make things better.  Speaking from personal experience, I didn't experience many symptoms at all, and my diet consisted mostly of chicken fingers, pizza, and pasta.  When I was told that I had to change my entire life when I didn't feel that bad at all was very upsetting to me, and I still get upset sometimes when everyone orders pizza at work and I'm sitting eating my Rice Chex in the corner (this actually just happened yesterday)......but, here is the flip side....

 

No, there isn't a pill to make this all better, BUT, some modifications to your diet will save your life.  After you've gone through this grieving process, you will begin to see that you will actually feel better, and things that you always considered normal about yourself were actually Celiac symptoms that have vanished or gotten better.  If you keep reading posts, you will see that many people here on this forum were near death before getting diagnosed and changing to a gluten free diet.  The diagnosis was actually a relief for most of them.  As you continue on you will begin to see that a lot more gluten free foods are being made available to us that are actually pretty good - I love my Udi's bagels and I don't feel the urge to have a regular bagel at all....same goes for pizza and chicken fingers which I now cook in corn flakes (I've had multiple people tell me that it tastes better than bread crumbs).

 

KFC and LJS make some pretty yummy food, but its not worth getting osteoporosis, cancer, or diabetes over (among other things).  Yes, it will take time to adjust to this new lifestyle, and even though it may be hard to believe now, you too will adjust in time.  Keep talking with people on the forum, especially when you're feeling down - we all have been there and can lend an ear.....

 

Please feel free to personal message me at any time...no one should feel alone when dealing with this.  I'd be more than happy to talk to you or even just to listen...best wishes to you and we'll be thinking about you!! 

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Hi There, Ajapeu-

Just writing in to give you my support.  I second Laura's invitation to an IM if you find yourself feeling particularly bad or just want more info.

 

As P-of-P-Thinking wrote, your depression can be an actual symptom of the disease.  That alone, may help a little bit.  I too suffered from anxiety and depression prior to diagnosis and I feel much better now a year later.  Also, when I began the diet, it made me super tired and I was constantly fatigued.  I think it was because my body was putting all its energy into healing my gut.  This gradually got better over the period of several long months.  Not everyone responds this way- some people feel better right away.  But it is a possibility that may also make things even more difficult to begin.

 

What a nightmare being around all of that delicious glutenous food?!?!  I can't think of a worse situation.  There is a mourning period for sure- I second that thought.  I think I'm still in it, in fact.  Sometimes I get sad or angry thinking about it.  I imagine it's much harder being around biscuits all day long.  Work to find new things to replace the things you ate that were your favorites. Try "Find Me Gluten Free"- an ap for your phone (or go to the website) to find places to eat nearby that have gluten-free options.  I guess they are the competitors, though, so that may be tricky or awkward.  Anyways- Five Guys Burgers and Fries is my go-to feel good food (without the bun, obviously).  

 

Also, if you're in the position to take a vacation or work up to one as a reward for a year of gluten-free eating or something- I highly recommend Florence, Italy. YOLO!!.  I was just there and let me tell you, those Italians know what they're doing with gluten-free food.  It was like I could eat almost anything there (doing a little research on where to go).  Celiac is common in Italy and the country is very supportive of the population with laws on food prep and promoting general awareness.  I ate enough tasty goodies (pizza, lasagna, gnocchi, garlic bread, cheesecake, and the list goes on) that I don't think I'll feel deprived for at least a year to come- even eating rice chex in the corner during a pizza party (not joking- it was that good)! Regardless- you really sound as though you need something to look forward to, whether that is a treat of a vacation or some other thing that will make you happy.  What would help brighten your outlook?

 

I do hope you feel better soon.  I also hope that some of these comments can offer you some comfort and a feeling of community amongst other people who really do know your figurative an literal pain.

Best of Luck-

Shellie

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I'm with the rest of these posters and I think the depression goes a lot deeper than just food. I know that I have been having a rough time with Celiac and I don't much care about not getting to eat gluten. It's something we just learn to deal with. I go out with friends. I just sit there and drink water. It took a while to get used to and did cause some depression... but I believe in my case, and possible yours, the disease itself is a cause for depression (if it's physically or mentally). Definitely check all your levels for deficiencies. Sometimes I cry and cry for no reason but I have to keep in the back of my mind that I understand why this is happening and it will get better and tomorrow is another bright sunshiny day. 

 

You'll get through this and I hope it's not too rough. Find something or someone that makes you really happy and rely on it. Your personality is not gluten. You're a wonderful human being and center yourself around people that care about you. 

 

You will have good days and bad days. 

 

Your body is healing and it is a scary time. But you'll come out of it as a stronger person. If you ever need anyone to talk to feel free to private message me. I'll even give you my personal e-mail and we can be celiac pen pals. Hang in there. 

 

Jesse

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Thank you everyone for the great messages.  I'm waiting to get an appointment with a Celiac doc here in Iowa and I will bring up those tests and hope they will run them, if not I will ask my regular doc. 

 

I am normally a very strong person.  But this is kicking my butt.  I do have a lot of support.  My wife and kids are great, my parents, my in-laws, and close friends from Boy Scouts. 

 

Again thank you.  God Bless all of you. 

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Oh, how I understand! Food is my life, too. I am a recipe tester and teach cooking classes and am absolutely obsessed with cooking. At first my grief was inconsolable, especially as I did not feel ill from eating gluten. My diagnosis came by accident. Now I enjoy testing recipes and catering for events (i.e. celiacs at a wedding this weekend). When not cooking, I read about food and am intensely passionate about it. You get the picture.

Just please know the grieving does come to an end. Give yourself time and permission to grieve. And, as everyone else said (because it is true!) one day you will feel a bit better, and the next, and the next... This too shall pass. It really will. Your new normal will be a better normal! Keep taking a day at a time and keep your eye on the prize.

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Agapeu,

I definitely agree with what everyone is posting about the grieving process.  I'm only in my 3rd month gluten free and still struggle, but I just wanted to bring up another couple of things that made sense to me.  The exhaustion itself that goes along with the disease is enough to depress us, but I believe we actually go through a withdrawal process when first going off gluten that is like what someone addicted to drugs feels. Others on this site have reported it too.  Maybe that's what you're going through now. When you think about it, it's no surprise we struggle like we do. It does get better. At three months in, I still have lots of  down days, but I have some energy now at least 3 to 4 days per week.  The headaches are almost completely gone.  The aches in my muscles are better too, as is the gas and bloating.  While they're not gone,  I recognize them coming better and have figured a couple of things that lesson their impact.

 

It helped my husband understand better when I had him read some of the topics on this forum.  He was being very good about it, but he started actually being proactive when he saw that others had some of the same things I was experiencing.  Most of us have suffered for so long with this and have been made to feel that it was all in our head that when we finally get diagnosed, we kind of expect miraculous relief.  But it's hard.  Just take time and let yourself heal.  (I know I need to heed that advice too.) I'm praying you will feel some relief soon.

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You know what would be great?  Set up another fryer and develop a gluten-free version.  You get it spread to the whole company.  What an opportunity.

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You know what would be great?  Set up another fryer and develop a gluten-free version.  You get it spread to the whole company.  What an opportunity.

What a great idea! That would help so many people.

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Ajapeu- I feel pretty much the same way I was diagnosed about a week ago and ever since I've been a wreck but I'm glad to see I'm not the only one.

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Ajapeu,

 

I became depressed as hell!  I also isolated myself without even knowing it.  I also made a lot of assumptions about what loved ones and friends must be thinking about me when we are in eating scenarios.  

 

Learn from my mistakes...  My friends still loved me and it was selfish of me to not hang out with them as much because of a diet.  I also stayed in because I was busy wasting the day God gave me on the internet convincing myself I was then going to check out with some form of cancer.  Ridiculous.

 

Furthermore, I love KFC food too!  And...  When I didn't know any better and was first diagnosed, I would order KFC Grilled chicken because I thought it was gluten free.  Oops.  Who knew...?  Not me...  Anyhow, I kicked it to the curb.  You can too.

 

Additionally, for every person that is not understanding of my diet that I run into, there are 4 who take complete ownership of it and are very helpful to me.  When that happens, its really quite beautiful to see people are out there who are still so helpful when they really don't have to be.

 

I was actually at a John Mayer concert recently, he is one of my favorite artists.  The venue was 3.5 hours away in an area where I don't know my food resources.  I almost became hesitant but decided, NO WAY!  I'm going to John Mayer.  I cleared my cabinet with Gluten Free foods and snacks, fruits, chips, everything I could find that I could just graze on all day.  I also took some gluten free beer/cider.  (I don't recommend alcohol ever, particularly if you are early in healing.)  So, I'm at the concert and we are all tailgating, we go in and watch the first act.  John Mayer is coming up next...  The venue sold alcohol but there was nothing gluten free available and I wanted to have one more drink before settling in to watch the show.

 

Would you believe that when I asked for a pass out to go to my car they gave me one?!  How nice is that?  The woman asked me the reason and I just explained that it wasn't a good one, she most likely wouldn't let me leave as a result but that I would tell her anyway...  I wanted to "go back to our tailgate to drink (1) gluten free beverage since they didn't offer anything in the venue."  Then I joked and said, "or, I meant to say, I left my cell phone in the car and have a loved one in the hospital so I need that phone in case an emergency pops up."  I said it smiling and very sarcastically.  They then proceeded to summon a golf cart and driver and took me out to the car and waited for me to drink one!  It was a complete act of kindness, and the woman I talked to said they really needed to investigate offering either a cider or red bridge at their concert venue!

 

Very kind...

 

Additionally, everyone loves a good cook and I've become one in this process.  I just invite people over to my place all the time and guess who cooks?  ME!  I eat gluten free and they do too without even knowing it!  Really, the food I eat now tastes way better if for no other reason than I am forced to actually cook more.  I really like it.  

 

Dont make my mistakes!  FORCE YOURSELF to get out.  EMBRACE this opportunity to become a gourmand.  LIVE, LIVE, LIVE!  Today is brand new and tomorrow will be too.  Make it your new Day 1.  Hit that reset button every morning.  Call up some friends or family and force yourself to just hang out.  Do it often.  Sitting idle is your enemy.  Stay busy.  Use this forum but don't doomsday yourself.  You have LOADS of foods you can eat you just can't get it from LJS.

 

Keep logging on to this forum.  It helped me and still does today.  You're going to look back and think, wow, that diagnosis really sucked but at the same time, its when my life as I know it today was re-birthed once again.  I'm going to have a party for my one year diagnosis date!  Hang in there...  It gets better.  It gets more normal.  It's totally worth the ride...

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You know what would be great?  Set up another fryer and develop a gluten-free version.  You get it spread to the whole company.  What an opportunity.

I have tried already but I can't even get anyone at KFC to reply.  I am not giving up though.  If everyone on here was to post on KFC facebook page or email KFC it might help.  I believe there are things that could be done to make things gluten-free. 

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Ajapeu- I feel pretty much the same way I was diagnosed about a week ago and ever since I've been a wreck but I'm glad to see I'm not the only one.

It has gotten better.  It still is hard because I can't just go out and eat on the run.  I work late last night and rest of family went out to eat.  I came home and fixed my own supper.  But I am not up set with them though. 

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What really surprises me is who supports me and who does not.  My family all does, and close friends.  But the one person I thought would check up on me is my minister from church.  She knows very well because she can eat gluten either but not Celiac.  The only time she asked how I was doing was when I took a piece of rice cake for communion.  I told her that It had been hard and even had thoughts of killing myself, and my depression had gotten worse.  But still nothing. 

 

I'm not mad at God, not even a bite.  But it really hearts that my spiritual leader does not even care, and does not help even in my darkest hour.  Because it would be nice to speak with a minister for a spiritual view that I had not thought of or prayed for or about already. 

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What really surprises me is who supports me and who does not.  My family all does, and close friends.  But the one person I thought would check up on me is my minister from church.  She knows very well because she can eat gluten either but not Celiac.  The only time she asked how I was doing was when I took a piece of rice cake for communion.  I told her that It had been hard and even had thoughts of killing myself, and my depression had gotten worse.  But still nothing. 

 

I'm not mad at God, not even a bite.  But it really hearts that my spiritual leader does not even care, and does not help even in my darkest hour.  Because it would be nice to speak with a minister for a spiritual view that I had not thought of or prayed for or about already. 

right - i know how you feel - people from my church were content to think i had some kind of eating disorder (and they were always trying to feed my because they could 'fix' my weight problem or lack of it)  when i got dx'd, they were interested but not.  if that makes any sense.  when i talk about my 'adventures' in procuring safe food, or tell them i can't eat this or that, they zone out.  maybe they feel awkward, i don't know.  i got over it, and now they make fun of me (good natured) but it's been 3 years, so it took a minute.  

 

i think almost everybody is surprised by who is scared off by this dx.  maybe your minister has a nagging fear that they are next in line for the celiac dx themselves, being as they already have a gluten problem.  seeing you be strict with your diet might make them feel guilty or mad at themselves for not taking better care of themselves.  who knows, but give it a little time to shake out.  if your family is supportive, you are in pretty good shape.  everybody else will come around.  or they won't but it's not your problem, it's theirs.  at least that's how i look at it.  

 

glad you are doing better :)

 

edited to add:  i'll pray extra for you and your family in the meantime

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