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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.

Am I Having Withdrawal?
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KikiB    4

It's been about 3 weeks now that I've been gluten free -- with one medication mishap. I was really looking forward to finishing the testing and going gluten free so that I would feel better. But I don't feel better. I'm not as sick as I was during the gluten challenge, but I'm not better. I still have major fatigue and muscle weakness every single day. And the C is not getting better.

And now I'm depressed too. It's not that I want to cheat, because I have no interest in doing harm to my body. Food is just not that important. But I was sad last night when I went to the bank and for a quick second wanted to go to the bakery and pick up a croissant -- then realized that I could not. I think the reality of it is sinking in. This is permanent -- not a diet. And the reality of how inconvenient this is. I can't stop and pick something up on the way home. I can't eat anything I want. Going out with my friends to restaurants is going to be so much harder. Lunch meetings at work are harder. Today is my first lunch meeting gluten free. Not looking forward to bringing my own food and dealing with the questions. I don't work with a lot of "grown ups" if you know what I mean.

I think my biggest fear is that this isn't the answer to my health problems. What if I don't get better and there is really something else wrong with me? I have fought depression my whole life, but it has not been this bad in a very long time. I'm actually tearing up as I write this. Pathetic.

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srall    112

It's been about 3 weeks now that I've been gluten free -- with one medication mishap. I was really looking forward to finishing the testing and going gluten free so that I would feel better. But I don't feel better. I'm not as sick as I was during the gluten challenge, but I'm not better. I still have major fatigue and muscle weakness every single day. And the C is not getting better.

And now I'm depressed too. It's not that I want to cheat, because I have no interest in doing harm to my body. Food is just not that important. But I was sad last night when I went to the bank and for a quick second wanted to go to the bakery and pick up a croissant -- then realized that I could not. I think the reality of it is sinking in. This is permanent -- not a diet. And the reality of how inconvenient this is. I can't stop and pick something up on the way home. I can't eat anything I want. Going out with my friends to restaurants is going to be so much harder. Lunch meetings at work are harder. Today is my first lunch meeting gluten free. Not looking forward to bringing my own food and dealing with the questions. I don't work with a lot of "grown ups" if you know what I mean.

I think my biggest fear is that this isn't the answer to my health problems. What if I don't get better and there is really something else wrong with me? I have fought depression my whole life, but it has not been this bad in a very long time. I'm actually tearing up as I write this. Pathetic.

This actually sounds pretty normal, esp 3 weeks in. I remember very well trying to come to terms with the fact that I'll never eat a pizza or hamburger again, not another ice cream cone...everything was going to change. I had to learn to COOK for heaven's sake. It's a lot to go through mentally on top of everything that is happening to you physically. I would be willing to bet that if you commit to your diet, and get exercise that the depression will start to lift. It's very very overwhelming, but doable. And the end result (which is feeling good and better health) is so worth it. Remember too that you might need to look for other food intolerances. Good luck!

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bartfull    565

The lack of convenience was perhaps the hardest part for me. I was never one for cooking. I'd just pick something up on my way to work most days. Realizing that there wasn't one single place in town where I could just pick something up was tough, and realizing there really wasn't even anything at the grocery store that I could just pick up was even harder. EVERYTHING had to be cooked! I had to start planning ahead! I hated it!

But I learned to plan ahead and cook only one or two days a week. I prepare my meals and freeze them. Then I can just grab one out of the freezer to microwave at work. Yeah, I do have to cook now, but in a way it is more convenient than before because I don't even have to stop at a restaurant or the store. I just open the freezer door.

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KikiB    4

Thanks srall and bartfull for the encouragement. Unfortunately I cannot exercise because I am too weak right now. When will the fatigue and muscle weakness start improving? I've actually gotten worse the last couple of days.

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srall    112

Yes the fatigue will go away. But you are only 3 weeks in. Healing might take 6 months to 2 years. And within that space of time you should see marked improvement. Don't let that time frame bum you out either. I think it just helps to be prepared for a little bit of a long haul. I think what most people experience is that you start to have good days along with the bad days. Then you notice that you are having more and more good days and less bad days. But to be honest with you I still have bad days, and bad weeks. I don't think it comes from healing, but from cc because we have to go out into the world.

I've said this many times: Going gluten/dairy/corn/soy free changed my life. I wanted to shout it from rooftops 2 1/2 years ago. Now it's sort of my new normal. But it's a journey. Stay on this board because it's a huge source of support and education.

I still come back and visit when I need the additional boost (got TG cc and am feeling yucky...see it still happens.)

You'll get through it. You are most certainly in withdrawal right now.

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I meltdown down in a store because I couldn't find anything to eat right about 3 weeks. Floods of tears and everything. I think it was reality of lack of convenience hitting.

All sounds pretty normal to me. Hang in there.

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Adalaide    361

It is totally normal to be emotional at this point. There were times I even cried right in the middle of the grocery store. I didn't get sad and tear up and shed a few tears, I sobbed like a child, right there for everyone to see, making a spectacle of myself. I'm sure it was quite amusing to see a grown woman making an idiot of herself standing in front of the bakery like that.

Much like you (after I initially freaked out) I said to myself, I can do this. I want to be healthy. It's food right? All I have to do is not eat like... bread and stuff. Then over the next few weeks the "stuff" part started to sink in. Stuff meant obvious things like going out to eat, pasta, pizza... and then I couldn't completely random things. Like tomato soup. My immediate reaction there was what the hell is wheat doing in tomato soup?!?!?! Then as soon as I got a handle on things it was time for the Girl Scouts to sell cookies. I got my crap together and suddenly there was an explosion where every business, everywhere was selling red velvet everything, which is like my favorite thing in the whole world. My initial reaction was to want to scream, cry or beat my head of my desk while yelling "why why why why" but I didn't do any of those things. It had been just over half a year and finally I realized and came to accept that this is my life. People around me will eat things I can't every day. I need to suck it up and deal with it like an adult before I end up crazy. It took me six months to get there, and you will too, but give it time. You don't get there overnight. Until then, get mad and cry and whatever as much as you need to.

And as for working with people who aren't exactly grown ups. Let them not be grown ups. You can (hopefully) shut it down with a simple statement about how you were just diagnosed with celiac and can't safely eat out, but you're here for business not to talk about your eating habits. There are also some of us to make it a simple "I have allergies" statement and that's that. End of story, no explanation. Period. No discussion. If pushed you can simply say you'd rather not discuss it. Or, if you are up for educating them you can try. This is sometimes successful and sometimes not, only you can judge your audience.

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srall    112

I have one other word of advice, which may cause some controversy. IF you self diagnosed (I did) I would from the get go just say you have celiac. When I first went gluten free it was out of desperation to feel better but I didn't know what to do besides an elimination diet. Once I'd narrowed down that it was gluten I went to the doctor. She looked at my pictures, heard my symptoms and said, "I believe you have celiac disease, but you'll need to go on gluten for 2 months to test." Forget it, lady. So now I feel like I am constantly questioned/doubted by family members who would not have known the difference had I just said, "yup...a doctor diagnosed me."

I know not everyone here will agree with me, and believe me I believe that celiac is only one part of gluten intolerance but when you tell someone you are intolerant to something they do not get how bad it can be. (5th day on the couch with heating pad...it can get bad)

So FWIW...

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bartfull    565

I agree with srall completely! I too am self-diagnosed, and I always say, "Since I was diagnosed with celiac disease, I can't eat that." Or something to that effect. It is not a lie. I WAS diagnosed - by myself. It really IS easier to deal with other people if you say celiac disease rather than intolerance.

Sometimes I just say I have food allergies, depending on the situation, because everyone knows what an allergy is but not everyone knows what celiac is. If I feel like explaining and educating people I say celiac. If I am not in the mood I say allergies and that usually shuts them up.

I have not only sobbed like a baby at the grocery store as Adelaide has, but one time I started yelling! "I HATE THIS! I can't eat ANYTHING!" That was at my lowest point when my other intolerances were at their worst. At that point, it seemed that everything had gluten, soy, or corn in it, and I could eat none of those things. Non-organic foods made me sick back then and I was SO limited. But things have gotten better since. I still can't eat soy or corn meal or whole corn, but I got corn starch back, and I no longer get sick from non-organics.

I have had trouble with salicylates too, but it's been a while since I tried them. I think the thing I miss the most is blueberry pie. I just might get some gluten-free pie crust and make a blueberry pie for Christmas. If it doesn't work for me I can always give it to a gluten-free friend. :)

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KikiB    4

Thanks everyone. It really helps to know that you have all felt the same way. It's feeling overwhelming when I look at this is for the rest of my life. And I'm discouraged because I had read about people feeling better after a couple of weeks. I guess I'm not one of them. I haven't found much information on withdrawal, but also hoping that would explain a lot of how I'm feeling.

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Hi KikiB

Just wanted to let you know I have been gluten-free for 6-7 weeks... I've been through hell. I initially felt a bit better a few days into gluten-free, then suddenly just felt absolutely dreadful. I have had night sweats, joints hurting, muscles hurting, moving odd pains all over my body... Hair falling out, crying at the drop of a hat. Obviously with fatigue... Also insomnia... I'm currently battling with pains in my top right abdomen (gallbladder??) and a moving lump in my throat that comes and goes?? (makes me feel very sick). I still have an MRI and an endoscopy to look forward to. I also thought that I was going to feel better much quicker, and feel depressed about it all. The realisation of our situation just keeps on coming! Also, I just don't understand why?! Did I do this to myself (last 6 yrs of my life very stressful).

It's a lot to take in. I'm a vegetarian with nut allergy, who is now celiac... And I've just cut out caffeine :( chocolate/sugar :( and dairy :(

Just wanted you to know, I'm there... Where you are. Rock n roll, no one else can do this for us. I keep telling myself if the worst of it is just cutting out some food... Then fine, as long as I get healthy again! Fingers crossed for both of us :)

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KikiB    4

Just wanted you to know, I'm there... Where you are. Rock n roll, no one else can do this for us. I keep telling myself if the worst of it is just cutting out some food... Then fine, as long as I get healthy again! Fingers crossed for both of us :)

Thanks DS. Nice to know I have company.

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GottaSki    459

Hi Kiki-

You can do this - insert cheerleader icon here ;)

It's a tough dance - you'll take steps forward - you'll take steps backward - but you will learn the dance and then one day you'll suddenly realize the steps aren't as hard as they once were.

Hang in there -- the first months are the hardest -- I promise.

Hugs -- vent as much as you need -- we all have and understand completely.

PS...you too DesignerStubble - Hang in there :)

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KikiB    4

Hi Kiki-

You can do this - insert cheerleader icon here ;)

Yay! I forgot I had cheerleaders!

Thanks GottaSki, it's so great to not feel quite so isolated, to have friends!! Friends that understand. And have knoweledge.

This is such a great support :)

:)

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