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.
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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
Where can I buy gluten-free stuff?
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Ask them for a copy of your results and find a good gastroenterologist in your area. Go there and give them the results. That's what I did. I didn't even bother with my GP. I got the results from the health fair and called a GI in Denver. My insurance didn't require a referral. My GI was the one who put me on the track to being accurately diagnosed. And regardless, you need to be hooked up with a good GI if you've got Celiac so that they can follow you.
Also, I had my bones checked a few months back (In January), and they were awesome. I'm still shocked at how well my body did with Celiac. I hear about all of my friends on here who had crazy horrible symptoms and I never did. I'm grateful. Because those ugly things would come eventually.
I work out regularly and I would say NO to working out if you have been glutened or are really tired. You know what happens to people who work out when they are really fatigued? They suffer injuries. I was not well enough to work out until I had been gluten free for 4 years but I am much older than you so I doubt it will take 4 years for you. Drop the work-outs for now and just go for walks outside when you feel better. The fatigue has to be better before you try to do gym work. I know you didn't want to hear that but I don't want you to end up injured, on top of everything else.
Take care of yourself for now and let yourself heal!
They say you should not work out if your sick or dealing with such issues. I on the other hand do the opposite I will work out even if running a fever, I feel lost if I do not, and the endorphins help me feel fullfilled and relaxed......I have a few other issues as well >.> sitting still causes me to have mini panic attacks. I actually have to be on a stationary bike while on the computer lol. I swear it originates from being stuck in bed for days in the past unable to move, I fear being stuck unable to move my body like it used to sometimes. Got to admit the scariest thing in life is when your own body does not do what you want it to and it turns on you.
As for steps, etc....I personally do about 24-30k steps a day or 11-14miles, Most of it pacing lol, anyway everyone is different so I can not tell you what to do just my own exp. Make sure you eat plenty, drink plenty of water and tea, and supplement anything your body might need. I eat constantly throughout the day to keep me going and enough protein and fats that it seems like a body building diet. Be careful and do not push yourself too hard, if you start feeling dizzy, tired or odd lay down for 15-20mins for a power nap. I do this twice a day at least just out of habit.
Ok, two things:
1. I never had symptoms either. I'm 29 and I've always been healthy. Never had bad blood work. Never had any issues. I had two healthy pregnancies and never in a million bazillion years thought I had celiac. Last September I got a weird stomach bug and it just wouldn't get better. After about 3 weeks I started wondering what the heck was going on. So I went to the health fair and got tested for Celiac, because my mother has 3 siblings who have it. My numbers came back high. I had an endoscopy in November to confirm. My toddler has it too. My damage was pretty significant, but normal for someone with Celiac. So, while that weird stomach bug may have been the beginning of my symptoms (I still don't know if had anything to do with my Celiac), I had Celiac for a while before I found out. There's no way that I could have developed the damage I had in 3 weeks. So I think it's totally possible to be a silent Celiac. I have always wondered how I'd know if I were glutened. All I've heard is that after not eating gluten for a long time I'll know. That's always made me a little nervous.
2. You doctors gave you really crappy advice. They should have told you that your numbers were high, to remain on a normal diet, and make an appointment with a GI specialist. That way you could have had an endoscopy and a biopsy to confirm your diagnosis. Telling you to stop eating gluten was really stupid of them. Because after 9 months you're probably not going to show much damage in an endoscopy. That said, I think it's likely you have Celiac. The tests they run are very sensitive. In fact, I asked my GI what he'd recommend if my endo came back normal, and he said, you wouldn't have numbers like this if you weren't reacting to gluten, so I'd still want you to be on a gluten free diet.
To be honest, I don't feel much different either. I'm still tired like I used to me. My anxiety hasn't gone away. My stomach seems much better. I never realized it wasn't stellar until I stopped eating gluten. Now I'm not bloated, I rarely have intestinal cramping, I don't really have gas pains. That weird bug I had went away.
So I was kinda in your situation. I didn't have signs. I was shocked when I got the test back. Shocked. I never had the GI issues, the rashes, etc. I grew up with Celiac and never thought I had it. My parents don't have it. But it's a super common AI disorder. My biopsy confirmed it for me, so I never second guessed it. And I had a family history to give me more proof that I could have it.
If you don't mind the thought of eating gluten again you could always start eating it again for a few months so that you can do an endoscopy and a biopsy later. A lot of people do these gluten challenges so that they can actually be TOTALLY tested. Like I said, I think you probably have it. Those Celiac tests are pretty sensitive. My doctors were sure I had it. The rates of false positives are pretty low. And other AI disorders can raise them, but it's not likely.
Being gluten free sucks. It sucks bad at first. Eating out has gone out the window for me. The inconvenience sucks. I can't take part in pot lucks or work functions. I have to eat first or bring my own food. It sucks. But, I'm lucky that if I have an AI issue I can control it with my diet and feel ok as long as I don't eat gluten. And I've learned to adapt. I guess I didn't have a choice.
And then there are the folks who know they have Celiac and don't care, and they eat gluten anyway. And that's their choice, but they're poisoning their bodies. To each their own.
I know it sucks. I get it. I was shocked too. But chances are, you'd have developed symptoms eventually. You may have had this for a short time or a long time. There's really no way to know. But sometimes our bodies compensate really well. My iron levels were always good. I never in a million years suspected I had this. Never.