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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Having A Hard Time..
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15 posts in this topic

I'm having a really rough day today and my new found diagnoses of Celiac Disease has not been an easy one to cope with alone.. I just kinda need someone to talk to, maybe some advice if anyone else has felt this way at first? Anything will help.. Thanks!

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We've all been there.

 

Its one of the good things about this forum. :)

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Hi! Yes I know what you mean. It's a lot to get your head around at first isn't it. Also it can make you feel isolated unless you know where to look. Is there anything in particular you need help with? There is also a chat room on here too - although I've not used it as most of the people I talk to on here are in another time zone (I'm in the UK).

I try to visit this forum often, so if there's anything I can help with, let me know. There are a lot if really nice people on here all helping one another out, so there's always someone around to offer advice. :-)

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Have you read the Newbie 101 thread? That'll help with the nuts and bolts part of this. For the emotional side, you just have to allow yourself the time and space to grieve. You will no doubt feel like throwing your hands in the air, you will no doubt cry, you will most likely have a few meltdowns in the grocery stores.

 

And then it will get better. First of all, you will start feeling better which will make it easier to cope, plus you will become a pro at reading labels EVERY TIME, so you will be less likely to get hit. And you will learn how to cook gluten-free meals that taste every bit as good as the gluteny foods you used to eat.

 

Then you will decide to venture out into the world of restaurants. That will present a slew of new problems. For now, I suggest you avoid restaurants altoghether. Explain to your friends and family that you need to only eat things that you have prepared for yourself, and hope they accept that gracefully. If you're lucky, you might find a restaurant or two in your area that can be trusted, and your family and friends will meet you at those places. And they WON'T mind if you bring your own food to their houses when it's time for socializing.

 

But for now, just concentrate on getting the diet right, and don't feel guilty for the emotional upset you are feeling right now. We have all been through it, and it DOES get better. :)

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I have been gluten-free for around 18 months, and it is now to the point where I don't think about it 100% of the time anymore. I have gotten in a decent routine, and am pretty comfortable with it.

That being said, I was glutened today with an amount larger than ever before and got scared and felt really alone. It was awful.

I had gotten away from the site, and this made me realize how much we need each other in this community. Also, I found two gluten-free women in my local whole foods market who put me on the right path.

It's not always easy, but I promise you, it's worth it. Hang in there!

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one day at a time.  try to concentrate on the positive side - (i always tell my kids:  if it's a BIG wall, poke holes in it first to make it easier to knock down.  plus you can see to the other side)  

 

this is a great place to vent and ask questions  :)  welcome to the club you never wanted to join lolz

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  The emotional side can be difficult. I know many Celiacs and those gluten-sensitive tend to have depression and anxiety connected to gluten as well. I have been gluten-free for 4 years and was doing so well, but recently I have struggled as well. Someome mentioned meltdowns at grocery stores...ha ha. I definitely think it's important to take one day at a time. My advice is be extra careful and don't get glutenized because that is just so upsetting. I have a list of companies that I have called and verified that their products are gluten-free and not contaminated. I also think there are these amazing little victories like finding a great new gluten-free bakery. I recently found a coffee substitute because I have not had coffee for 10 years. Now I'm so thrilled, everyone thinks I'm strange because I'm so happy over one little thing like having a gluten-free coffee substitute, but to me I know it's a little victory that matters so much.

   I recently found a support group in my area and that really, really helps when others are going throught the same thing and know what you're talking about. It gets better the more you learn and once you make gluten-free habits. I'm still learning too. 

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Now I'm so thrilled, everyone thinks I'm strange because I'm so happy over one little thing like having a gluten-free coffee substitute, but to me I know it's a little victory that matters so much.

 

right - people must think i'm nutty when i'm dancing around in the store because i found gluten-free egg noodles hahaha! :D

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Thanks everyone! I'm also 7 months pregnant and that doesn't help either. I'm just tired and hungry and tired of being hungry lol! It's tough being on an extremely tight budget with all this too. Does anyone know of any programs that help?

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I, too, am newly diagnosed (4 weeks ago).  I am so glad to read the posts - I feel 'normal.'  I have been a little down lately because my entire world is about food these days.  Reading your posts help - glad to have found this forum.

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I also appreciate all the input on this page. It is such a relief to be able to talk to others going through the same things!

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Those first few weeks are really tough. I went through a withdrawal of sorts and felt extremely tired, headachey and cranky for about 2 weeks. After that first month milestone, it starts getting easier.  Hang in there, and come to vent any time.  :)

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Welcome! Yes...I well remember those first weeks and months - you have had excellent advice from everyone - do make sure you take advantage of the UoChicago Care Pack that KarenG posted.

Hang in there - it definately gets better :)

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People told me there's a mourning period for the old you, and all she could eat, and they were right.  I'm about 7 weeks in now, and I'm mostly adjusted.  I've found plenty I can eat and while I miss some of my old things, I've found others I might never have discovered had I not gone Gluten Free.  It is tough on a budget though, I'd recommend not trying to replace all your old foods (those 'fake' baked goods are expensive), but try and stick with whole foods -- fruits, vegetables, etc.  Good luck!  Once you start to feel better, it will be worth it.

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