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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 Celiac.com's FREE weekly eNewsletter   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

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The last time I had the no appetite symptoms was several years ago. I had no clue about celiac. I ended up losing a lot of weight in a short amount of time; like 25 pounds in 3 weeks. And I was losing hair. I attributed it to stress and working too much. I was so busy I really didn't have time to eat and didn't think much about it. I would make a point of trying to remember to eat a couple times a day, but I didn't eat much when I did, and only ate because I knew I needed to. I remember one of the first questions my husband (then my boyfriend) would ask me when he called was if I had remembered to eat that day. Sometimes it took me a couple of minutes to even remember if I had. And there were times in the afternoon when I would just starting wondering why I had a headache, and then realize I'd totally forgotten to eat.

I'm a sahm now, and I've been eating from snack craving to snack craving for years now. I started taking supplements to combat the GI symptoms I always had, which worked, but I never connected them with the appetite or the hair loss or anything else. But in the last couple weeks since I stopped taking the supplements so that I can be sure they don't interfere with any tests, it's like my appetite just packed its bags and left in the middle of the night. It's just gone. I try to eat, and I do eat a little bit, but given the choice, I'd just rather not. It's not really nausea like I feel like I'm going to vomit. It just kind of feels gross to chew and eat, and it feels gross to have food in my stomach. Now I'm really starting to see what people mean by wondering if some anorexics are undiagnosed celiac. Because I really see what they say about eating feeling gross now. And it's getting worse as the days go by. Today for breakfast I heated up a couple of these frozen food things that are kind of like a poptart, but it's got egg and cheese in it. I cut up half of one for my 20 month old son, and was going to eat the other half of his, plus the other one. I could barely eat the half. My son ate his half, and then was still hungry so I gave him something else too. So today my 20 month old ate more than me for breakfast. And like I said, I'm a snacker, so I'd usually have that much food for breakfast, then an hour or two later eat something else, then an hour or two something else, etc. I didn't eat again today until late afternoon, and it was a small frozen dinner that I only ate about a third of.

So now that I have all day to sit and obsess about it, rather than being too busy to even think about it, it's really freaking me out. My husband even asked me if I ate when he came home yesterday. I'm actually mildly overweight, so I could stand to lose 25 pounds and still not be totally skinny. But it's just the thought of the weight dropping without me trying to do it that is upsetting. It's like I have no control over my own body. And I've been dealing enough with not having control when it comes to the D and the gas. So I'm not happy with my body doing this without my permission, if that makes sense.

I'm also starting to get symptoms like itchy ears and scalp and just general itchiness.

I even tried to eat something sweet, because it *sounded* like it would be good, but once I got it out of the package and could smell it, yuck, but I just made myself eat it and once I took a bite and started chewing, it was so gross.

I'm even wondering if I can even make myself wait to go see the doctor and get a definite diagnosis before I start gluten-free. I feel like I just want to do it because it's driving me up the wall. But then I know there are benefits to having a diagnosis because it's taken more seriously than a self-diagnosis.

I was considering just going gluten-free and then having the genetic testing, but I did a search on it here and I'm seeing some reports of conflicting results. Like someone testing positive on the bloodwork but they don't have either of the genes. Which doesn't make sense at all.

Well, I guess I just needed to get this off my chest.

Nancy

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I was diagnosed as Anorexic in High School because I never ate. It wasn't emotional, I always felt too skinny, but I never wanted to eat and would just forget for days at a time because I didn't have any appetite and eating was kind of gross to me. It didn't help that I was a latch-key kid, so I took care of myself in high school. When someone did notice and make me eat, or it got to the point where I got dizzy and realized I hadn't eaten since the previous day, after a few bites it would be really difficult to eat anything. I didn't even think about this until I read your post. Its amazing how the past slowly starts to click together once you know what's going on.

I personally felt it very important to get a diagnosis. Even after the blood test, even after positive response to the gluten-free diet, even knowing my GI was a twerp, there was a little part of me holding out emotionally with "maybe its something else they make a pill for". Having him confirm it and "prescribe" me to be gluten-free for the rest of my life settled that naggling little doubter in my head.

Also lack of appetite can be a serious side effect of other things ( they put me through the testing ringer as a kid, just not for celiac disease), so I think it would be important to eliminate things one at a time.

It takes an enormous amount of patience to wait for doctors or for tests. Especially when you feel like crap. I can't really help there, except for I know it sucks.

You can test positive for gluten intolerance and not have the gene. So you can be gluten intolerant but not celiac disease. Others can explain that better than I can.

Have them do the blood panel, do the biopsy maybe, mine made my doctor fell better, but didn't confirm my diagnosis any more than the blood panel did, though it did find my ulcers, so I suppose it did some good.

I look at my family and know I have the gene. Having the gene doesn't mean you have it, it just means you have the potential for it. So testing for the gene doesn't really rule in a diagnosis, it just rules in a possibility.

I hope some of that helps, I'm starting to ge tired.

Elonwy

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My GI doctor told me that the majority of celiacs carry the genes...but there are some who don't. He said there are other genes invovled as well...but not enough is known about the genes right now. I figured what he was telling me is that he wouldn't rule celiac out based on genetics alone.

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I went through the same thing at age 18-20. Had no appetite, would throw up alot, lost a tonne of hair etc. People thought I was anorexic, but I kept insisting that I just had no appetite. Now I'm fat...go figure!!! Probably from years of my body starving itself unbeknown to myself. Now if I even look at food, I balloon.

:)

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Thanks for answering my worries guys. I have decided to get all the tests I can and stay on gluten until I find out for sure. I know myself and if I don't, I'll be tempted to "test" my self-diagnosis of celiac disease, and I'll either make myself sick or I'll just never be sure and may waffle back and forth on the gluten-free. It's better to know one way or the other. And since the genetic test isn't completely reliable yet, it looks like the more tests the better since you may test negative on one thing and positive on another.

And Skarlet... That's EXACTLY what happened to me, except I had another bout with the no appetite and hair falling out in my late 20s. I met my husband when I was very thin at the end of that last bout. I've gained 60 pounds since then and it's been stuck like concrete except for when I was doing the 6 Week Body Makeover (yep the infomercial) and I lost 30 pounds really easily. And it was mostly 3 or 4 pounds a week, so it was a slow loss, which is always easier to keep off. But then I had a really bad year with my dad dying of cancer and I started not really caring about my weight and gained it all back. So here I am back where I started. I've been meaning to go back on that diet because it worked so well, but I just haven't felt up to it. Interestingly enough though, it's basically - no sugar, no salt, no WHEAT, no dairy and no oil. There are some other things to it, but those are the main things. That's exactly what they talk about on that diet too. That you can get your metabolism so screwed up by going on starvation diets (or unintentional anorexia, it seems) that your body goes into a survival mode because it thinks there's a famine. Then it just holds on to everything it can in the form of fat in order to protect you from the "famine" it thinks you might go through again. If you're interested in looking into that diet more, there's a message board (they call it a Chat Forum) at www.provida.com that is HUGE-MONGOUS where you can ask questions. There are literally hundreds of thousands of posts. It's a free board and anyone can post whether they've bought the program or not. They won't let people post anything like a menu or the exact combinations and portions of food that they recommend for your body type, but you can get a pretty darn good idea what it requires.

Nancy

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