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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Just wanted to say that most of that was for the original poster. After having read through the thread more (yeah, I should have done it first) I did add some more. This (editted in, so you might have missed it) was mostly for you:
You said you're pretty new at gluten-free, right? I think that it's probably just going to take some time before you get the energy levels you're used to having. If they don't end up coming back, then something else is the problem: that level of fatigue is not normal. (Although I'm sure most of us went through a stage where we thought it was). Figure out what's sapping your energies, and I'm sure you'll be just fine.
Oops, I guess I'm not the first to say that. Still true.
Also, if you're using MyFitnessPal - note that it lets you enter recipes. It was much easier to put in the mixed cereal I eat every morning once I realized I could do it that way, instead of selecting all the items again or copying over the meal. That way, you can eat more or less of it each day without altering every single ingredient.
PS. I do know how hard it is to find motivation for this sort of thing when you are in gluten withdrawal or just feeling fatigued. If you're not there yet, put in on a shelf in your mind and do it later. There's no hurry. You'll feel better soon.
I had heard before that to lose weight, you only had to eat fewer calories than you burned... but I never really believed it was that simple. It is, actually. There's more to being healthy - nutrients, etc - but there are exactly two ways to lose weight:
1. Exercise more
2. Eat fewer calories
Exercising is great, but it only gains you like 200 calories for a lot of time & effort... whereas a tiny, tiny bag of chips is over 300 calories. So controlling diet is actually the easier way, at least at first (exercising helps your metabolism get better, so it's good for the long run).
I am telling you this fresh off of having lost 10 pounds myself (and still going) so I hope you believe me when I say, it's not as hard as you might think: try counting your calories. For one week, even - you only have to keep going if you really want to. For one week, write down everything you eat. There are completely free websites that can help you do this, and they're super easy to use. Most of them have apps so you can do it from your phone. (I use MyFitnessPal, but there are others).
This does several things:
a) Makes you think twice about eating something, since you have to mark it down.
Helps you to realize where your problem areas are. (I never knew *just* how many veggies you need to eat to match a cup of rice. Sure, you're not as full from veggies, but subtract just a little rice and add some carrots, and you're golden).
c) Makes you feel less guilty about the "bad" things you eat. There is no cheating - just eat a little less elsewhere. No worries.
d) Gives you more motivation to eat less. Back when I didn't think about it, I'd eat 3 links of sausage without blinking. Now I know that that's 750 calories! No thanks, I'll just eat one, and supplement it with something else. Or butter on popcorn! It just about triples the calorie value! Maybe I'll have just a little less of that...
e) Motivation to exercise. You get free eating later when you do!
Do that for a week, and you'll learn so much that you probably won't need to keep doing it. (Although it gets easier because the app will remember the things you eat a lot or have eaten recently).
After the blood test, my doctor told me I "might" have Celiac. I asked him if it might be prudent to get off of gluten (at that point I knew very little) and he said OK, but that I would have to go on again prior to the biopsy. So I'd say that the diet was my choice. Anyway, after I tried to go back on gluten and didn't think I could stick with it, I talked to my doctor again and pushed him as to whether or not he'd be willing to give me a diagnosis without the biopsy, in case I ever needed it for anything. He said yes, but to talk to the GI in case he still wanted to do the biopsy without a challenge, which turned out to be the case. So... I don't think I'd call that "told I have Celiac". He wants to help and he's generally been a good doctor for me, but he really doesn't know what he's doing here.
I have been off gluten for nearly 3 months at this point (less about 10 days, I would say), going back to the three weeks I first challenged. Before that, I had been off for about 6 weeks. That's probably long enough to know? I mean, I certainly feel good right now. Great, even. But it's hard to know, and even harder for others who know very little about celiac disease to accept. And besides, even if I'm 98% sure that I have celiac disease (which on the good days, I am), this would help to tell me whether I have *other* allergies/intolerances/whatever that I need to know about. If the reaction to gluten is similar to my mystery episodes, then case closed, right? At this point in time I should get over it quicker than I ever will in the future. And if there *is* no reaction, then extra-bonus: I can challenge somewhat properly for the biopsy.
It sounds so reasonable (to me) when I think about it like that, but it IS stupid, isn't it?
PS. I believe the reference ranges for all three tests for "greater than 10 means maybe Celiac".
Every time I think I've made a decision, I find out something new.
I just did another celiac.com-binge and spent a couple hours surfing around on here. I discovered the possibility of gluten withdrawal, which I hadn't heard of before. So even if I get sick right away and don't eat any other gluten, and I get over it within a week or so (which seems reasonable because I've gotten over the cc's within a day - I'm guessing I'm not too sensitive yet because I'm still new at this) I might reset any progress I've made on getting over this addiction.
I was never able to directly correlate the IgG to any research on sensitivity/specificity (ie, % false positives and false negatives). I thought I had, but my doctor told me it wasn't the same test. The words they use are always a little different than the words written on my tests. But I know that a positive test + symptoms + reaction is pretty darn suggestive.
The 6 week point is coming up on Friday. I am actually thinking now that I should try something that I *know* has a little gluten in it at that point. I have had several episodes of feeling sick that I have guessed must be cc, but it could also be an allergy or something. It's so hard to know what exactly made me sick. But if I'm actually getting sick now with just a little cc, then I should *definitely* react strongly to actual gluten now. I think before I maybe hadn't gotten rid of it as completely as I have this time (or for as long). Anyway, if I feel just fine, maybe it was a coincidence [edit: feeling bad the first time I tried to go back on gluten] and I can stay on gluten for the 6 weeks. If I feel bad, either right away or soon-ish afterward, then at least I've had one more, hopefully more "definite" reaction.
I know I probably shouldn't push it, but my parents are expressing doubts again about whether or not I'm celiac. I so want them to believe me enough that they get themselves tested. I'm kind of having trouble myself - I like to be certain about things. (This is me: http://xkcd.com/242/ )
OK, well that helps. I did have a positive blood test although I was never able to confirm from my doctor about how sensitive/specific they were (he told me that the one I tested positive on was just used to measure compliance - but I think he doesn't really know much about the tests). And yes, I have felt much better off of gluten. And a dozen symptoms that from my reading can come from celiac disease. I'm not sure about the harsh reactions to gluten - maybe, or maybe I still have an undiscovered allergy. Haven't figured that part out yet. But I feel very confident at this point that I do have it.
If 6 weeks is the absolute minimum for a challenge, then I may as well not bother at all. Especially if you are saying that it wouldn't be odd to find damage after a year. The GI did say he wanted to do the test even I wasn't challenging, that they just needed to know that going in. Maybe they take more samples. So I'll continue to stay off, and I'll just make sure they know that's the case. (I was kind of looking forward to eating a couple of things just one time more, but I'm also relieved at the thought of not poisoning myself again, even just for a week.)
Well, I couldn't stand the idea of being on gluten for a full 3 months, so that's right out. I guess I haven't really decided yet about how long. I was thinking 1-3 weeks? Enough to get *some* chance of a positive biopsy without hurting myself too bad. Right now I am just finally starting to feel so great so I don't want to lose that, either. If you guys think that it's possible to be off gluten for like 6 full months, and not go back on, and still get something out of the biopsy, then maybe I could try that. Or is that with a week or so back on gluten?
I'm totally up for suggestions on whether or not to back on gluten and for how long. I still have about 2 months before the biopsy but I don't think I want to be on gluten for more than 3 weeks unless you all think it's really the best way.
I meant that I wish I'd done more research before I went off gluten the first time, instead of rushing into it, and had known that everybody says not to go off gluten at all if you're going to get a biopsy. At the time of my first post on these forums, I had already gone off gluten.
Got something great to say about Celiac Disease that you want to shout off the rooftops?
Know someone who needed to be convinced to get tested and have some advice you gave them that helped?
Sure, we all know that getting a Celiac diagnosis, or even suspecting one, can be scary and frustrating. But there are good things too. Please share how your diagnosis has made you a happier person!
(Please keep this specifically to Celiac; you can start another thread about intolerances if you like but I'd really like this to be something that we can show to people to help give them motivation to get tested for celiac disease).
Thanks! I'll start:
> I have discovered that being hungry isn't supposed to hurt.
(I had always just assumed that pain was hunger.)
> I am feeling more motivated to do things, which in turn makes me feel better about myself.
> I've discovered that it's much easier to eat healthy than I ever imagined.
When you're forced to think about everything that goes into your mouth, it's easier not to eat those potato chips. Similarly, when you are forced to plan each meal in advance or risk not having anything in the house you can eat, it's easier to keep the house stocked with veggies and all that good stuff. I am starting to actually have a positive relationship with food.
> As a combination of all of the above, I have lost 5 pounds in less than a week.
Oh, I should have said. I am already gluten-free and acting with the assumption that I do have celiac disease. I mentioned in the other thread that they are still planning on giving me a biopsy but I expect it to be inconclusive because I am not eating gluten. (I wish I had read your advice much earlier, Lisa! ... both Lisa's.)
Is "Ferritin" the same as "Iron/Ferritin storage levels" ?
My doctor is, in his own words, "not an expert on Celiac disease". I have no intention of switching doctors because from what I've read, I am far more likely to end up with a worse doctor, not a better one - and I know this guy cares. He's also pretty agreeable so if I go to him with a list of tests I need done or medication that I want, as long as it makes sense, he'll give it to me.
Is there a reference somewhere that I can give him that will tell him what other things I need to be tested for, what other specialists I should be referred to, etc etc? Bonus points if it's prioritized because he's busy and I doubt he's going to be willing to do everything at once. It will take several 15-minute appointments to get it all done.
Failing that, you could all just tell me your opinions on what to test for, and I'll try to compile a list from it.
Oh, and I have already tested for iron, magnesium and B12 deficiencies.
I should probably update this before I go posting in other places on this board, in case people are curious about how I got where I am now from where I was.
Basically, I started feeling the difference. It wasn't sudden like I thought it would be, but gradually I began to notice how bad I felt all the time, and realized that I had forgotten how bad I was feeling just before the original diagnosis - the reason I'd asked to get tested. Off gluten, I didn't feel much different (like, definitively different) from the "usual", except that I was equating "usual" with a long-term average... and in a relatively short period, I was feeling just like I had been in the worst of the worst days. A reminder that I apparently needed.
(If you're wondering why I thought it would be sudden, it's because 1) I had heard horror stories, and 2) early on after going gluten-free, I had gotten suddenly and violently sick one evening, and I figured that was a glutening).
Anyway, so I went back off gluten and have stayed off since. My doctor gave me a "symptomatic diagnosis" or something like that. The GI still wants to do a biopsy and I'm going to let him, because a "gold standard" diagnosis would still be very nice, but I'm past needing it. The only reason left for having it is to make it easier to convince my family to get themselves tested. So I'll let him do it, but I'm only going back on gluten for a week or two, maybe three if I'm feeling daring, and I'm fully aware that this means the results will almost certainly be completely inconclusive, but I'm not letting that worry me.
Something I saw in one of the books I've been reading that was really interesting was this: try to think about your food as special, as in, everyone else wants YOUR special food. It was a tip for raising kids, that if you can get them to think that, you've succeeded; I think it's useful all the time. When I am eating strawberries with whipped cream and everyone else is eating cake, and people keep sneaking some of the extra strawberries... it's because they are jealous of me. At 11 she will probably be cynical if you tell her that directly, but maybe you can try to make her notice that whenever it does happen. And it'll happen more and more often as you get experienced making great gluten-free meals and treats.