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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.

Your Top Two Pieces Of Advice
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58 posts in this topic

I haven't seen an identical thread, so I thought this might be an interesting thing to try.

Here's the setup! :)

Each poster posts their top two pieces of advice! Simple enough. With all that you now know and have learned and experienced since you went gluten free, what are the TWO things you wish you had known at the outset?

Don't worry if you post something that is the same or similar to what someone else posted, because it will help reinforce that for the newly diagnosed. I hope we can keep them short so that they will be easy to remember.

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My top two:

1. Don't panic. It will be alright. As overwhelming as it seems there are thousands upon thousands of people who are willing to support you and help you through all of this.

2. There will be ups and downs. Sometimes big ones. It's OK. Just because it seems like you are suddenly going backwards doesn't mean to give up. Just remember that there is now an upside, and you ARE getting better.

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I haven't seen an identical thread, so I thought this might be an interesting thing to try.

Here's the setup! :)

Each poster posts their top two pieces of advice! Simple enough. With all that you now know and have learned and experienced since you went gluten free, what are the TWO things you wish you had known at the outset?

Don't worry if you post something that is the same or similar to what someone else posted, because it will help reinforce that for the newly diagnosed. I hope we can keep them short so that they will be easy to remember.

1.Get tested for Celiac ,,blood and biopsys,,, BEFORE going gluten free.

2 ALWAYS,ALWAYS,ALWAYS not matter what kind of test Get copys of your test results and reports!! .

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My top two:

1. Don't panic. It will be alright. As overwhelming as it seems there are thousands upon thousands of people who are willing to support you and help you through all of this.

2. There will be ups and downs. Sometimes big ones. It's OK. Just because it seems like you are suddenly going backwards doesn't mean to give up. Just remember that there is now an upside, and you ARE getting better.

I completely agree with your top two. It was actually good for me to read #2 today, because I feel like a mess. I've been sick and bloated for the past three days, not knowing where this reaction is coming from. I've gotten rid of a lot of foods recently that I thought could be causing my frequent reactions, but maybe because my body is still healing, it's still having trouble digesting in general.

On that note, I'd like to add something -

Have patience. There are many things that you will have to figure out; you will naturally find road blocks ahead. Practice patience and have faith that it will get easier.

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Intriguing topic idea!

Hmmmmmmm...

1. As above, don't panic! I did just that. I recall standing in front of my pantry, crying, because I just did not know what to do. Suddenly gluten seemed to be in everything! So, what did I do? I went out on a binge, buying a whole host of gluten-free processed snacks because I felt sorry for myself. Very few tasted good, let alone good for me!

2. Research like crazy! Your doctor and other health care professionals likely won't do this for you. The nurse at my doctor's office called me to say I had Celiac. I was in shock and ill equipped with NO information. So, I have become a detective, doctor, advocate and police officer. Learning to read labels immediately is a must. Do not necessarily trust a product that says GLUTEN FREE because it can still contain gluten. Call companies regularly to question their cleaning practices and confirm whether their products are or are not gluten-free. I have seen several websites that say their stuff is gluten-free but upon calling them have received different stories.

I'm biting my lip, refraining from listing more (although I have lots). So, if no one mentions them I'll add later. :lol:

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1. Be aware that most doctors don't know much about celiac disease/gluten intolerance.

2. Gluten might not be your only food intolerance.

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1. Be aware that most doctors don't know much about celiac disease/gluten intolerance.

2. Gluten might not be your only food intolerance.

sad , but so very true :(

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1. Hang on, it gets easier.

2. Read the label, even if you read it last time.

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1. Read the label before you buy it. Read the label AGAIN before you eat it. Sneaky small print...

2. Buy a rice cooker. It took me waay too long to buy one.

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1. Never, never ASSume something is gluten free. If eating in a restaurant ASK the manager or chef about prep and ingredients. If buying pre-packaged food, check the label and do your research if an ingredient looks questionable. A simple search of "is XXXX gluten-free will usually turn up some answers." Do be aware of outdated responses however and check the date of a post before you assume it's okay. Goes back to the never assume anything is safe.

2. Keep it simple with as few gluten-free substitutes as possible in the begining. Cooking mostly natural gluten-free food like meat, veggies, rice and potatoes will not only help your budget but help you heal better, figure out if you are being cc easier and figure out if you have additional food intolerances easier. It could also help if you wait several months to try the gluten-free subs so your tastebuds somewhat "forget" what the gluten breads and gluten pastas taste like. :P

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Only 2? And brief? You didn't want me to play did you? B)

I like the " Don't Panic". It will be our secret club phrase!

Try to find the humor in the situation, even if you are the only one that thinks it's funny! :D

( this happens to me a lot as you all know)

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1. You're going to get glutened occasionally no matter how careful you are. It's OK. Pick yourself up and keep going.

2. Don't worry about what others think. There will be people who say you are worrying too much about cross-contamination. You might meet celiacs or people who don't stick to the diet very well and say it's fine to cheat (it's not). You might have family members or friends who will try to guilt you into eating gluten-containing foods they have prepared. Be kind, be compassionate, say whatever it takes, but stand firm and don't poison yourself for someone else!

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Good post, Korwyn!

We have "Don't Panic" from a fortune cookie taped to our fridge from 2007--little did we know it would prove to be prophetic.

Only 2??--be brief?? Have you seen my posts?? :unsure: LOL LOL okay, I'll try.

Agree with all those posted thus far, BTW!! ;) especially BE YOUR OWN ADVOCATE & keep copies of your tests and doctor appts. --doctors are woefully ignorant about gluten intolerance and how to deal. And most definitely, keep your SENSE OF HUMOR, no matter how dark some days are. Saved my sanity for sure!

Two I would offer:

(1) Healing takes time. As much as you want it to "hurry up already!!" and stop hurting...there's no time table set in stone. Be patient and never give up. KNOW it is happening. You're going to be all right! :)

(2) Use probiotics. ESSENTIAL for gut flora balance, stopping the big D, the painful C, the nausea, the heartburn--everything. Totally set me straight and I was a mess! :blink:

(3)...oh, all right, I'll be good and play by the rules (geesh, I hate rules :rolleyes: ...pout, pout).. :lol:

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1) Do not try to replace everything wheat filled with a gluten free alternative. It is not healthy, not practical and most things don't taste that good anyway. Eat fresh naturally gluten free foods (fruit, veggies etc). I wasted SO much time and now basically eat no grains and no processed food and feel much better.

2) Don't rush yourself. The GI Dr. I saw (that never saw a case of celiac like mine) said that I should feel better a few days after going gluten-free. What a stress THAT was since I am 9 months in (feels like years) and still have symptoms (mainly neuropathy). Everyone heals at their own pace, Celiac has no schedule, so be kind to yourself, rest when you have to and embrace the good days!

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Good post, Korwyn!

We have "Don't Panic" from a fortune cookie taped to our fridge from 2007--little did we know it would prove to be prophetic.

Only 2??--be brief?? Have you seen my posts?? :unsure: LOL LOL okay, I'll try.

Agree with all those posted thus far, BTW!! ;) especially BE YOUR OWN ADVOCATE & keep copies of your tests and doctor appts. --doctors are woefully ignorant about gluten intolerance and how to deal. And most definitely, keep your SENSE OF HUMOR, no matter how dark some days are. Saved my sanity for sure!

Two I would offer:

(1) Healing takes time. As much as you want it to "hurry up already!!" and stop hurting...there's no time table set in stone. Be patient and never give up. KNOW it is happening. You're going to be all right! :)

(2) Use probiotics. ESSENTIAL for gut flora balance, stopping the big D, the painful C, the nausea, the heartburn--everything. Totally set me straight and I was a mess! :blink:

(3)...oh, all right, I'll be good and play by the rules (geesh, I hate rules :rolleyes: ...pout, pout).. :lol:

1. You may get some really wierd blood test results where a specialist advises you to go to another specialist based on your blood test results. And when you research why they want to send you, based on those blood test results, you will probably freak out. Save yourself from that. Just ask them to repeat that blood draw. Next time it turns out normal.

So, stay calm it times of turbulent blood tests and ask them to draw your blood again.

2. If you can, make your home gluten-free. You have fewer worries that way.

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1. Other people (regardless of who they are or where you are) are not responsible for understanding your diet and providing you with food. Ever. You're now the only person who's responsible for that. Thinking this way will make your life much easier and save you a lot of disappointment at social events, when traveling etc. (Don't worry though, you will find some very special, generous and understanding people).

2. Travel is very, very, very possible on an extremely restricted diet. Travel if that's what you like to do.

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1. Never, ever, ever eat at a potluck!!

2. I repeat: Never eat at a potluck!!!!!

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1. If it needs to say "gluten-free" on the label, you probably shouldn't be eating it. Eat real, whole foods from trusted sources, not processed crap with "gluten-free" plastered on it.

2. Even if someone is being really thoughtful and makes something "gluten-free" especially for you, unless they have a truly gluten-free kitchen, have replaced their cookware, and are as fanatical as you, it's not safe. Say "no, thank you."

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1. Embrace the change and look forward with excitement to all of the new food and cooking adventures you have before you!

2. If you are doing this for/with your children, the less of a big deal you make of it, the less they're going to resist. It's just food - and food is tasty. We're so lucky that we can change the course of our health through diet alone. :)

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1. Never, ever, ever eat at a potluck!!

2. I repeat: Never eat at a potluck!!!!!

:unsure::lol::blink: ditto!

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Just two is difficult! :)

1. Eat whole foods and avoid a lot of gluten-free replacement foods in the beginning. Your body will thank you for it.

2. Do not trust a health food or grocery clerk for gluten-free status. Unless it states so on the item and then still read the lable. ALWAYS check it out for yourself! I made this mistake twice! If it says "May contain traces of gluten" IT DOES, don't listen to anyone otherwise!

Love this thread, every single post is great advice!!!!

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I'm posting later...

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1 Don't eat soy.

2 See #1 above.

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1. Be your own advocate. Educate yourself and others.

2. Don't be discouraged. We all slip.

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1) Don't give up, people heal at different rates!

2) People will try to tell you it's not really the gluten or it's in your head; but don't listen! There isn't anyone who knows your body like you!

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