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
My daughter was diagnosed at 14 and now at 26 I can tell you she has a full and active social life. She drinks gluten-free beer, wine, Tito's vodka (I'm making her sound like a big drinker, she isn't!) you can drink being gluten-free.
I was diagnosed before anyone knew what it was. There was no gluten-free food and very few restaurants would help me. So I can tell you that in this day and age it's not that hard. Every grocery store has gluten-free food. Many restaurants have gluten-free menus and/or understand it enough to modify their food for you (especially restaurants with a chef as opposed to some teenager cooking!). I almost never get glutened at restaurants anymore. I do however at people's homes so I try and steer clear of that.
You can have pizza, bread, cookies, and so forth it all comes in gluten-free versions and if you ask around here you'll get some great advice on the products that taste the best.
You'll get sicker if you don't follow the diet. You can do this and have a social life.
Did a dermatologist AND an allergist do allergy testing? Derm tests for specific skin allergies. If your skin is coming in contact with substances that you are allergic to, you can get reactions that get the catch-all eczema label. Same goes for allergies to dust, etc. that you may come in contact with.
Years ago I would get deep itchy red areas that would surface; my skin would peel off until it was painful to touch anything. Best diagnosis I could get was dishidrosis. It tended to be mostly on the palm side of my hand. At some point allergy testing revealed an allergy to dust and mold, but avoiding these did not stop these episodes. Many years later I went to a good dermatologist who did skin allergy testing. After finding out I'm allergic to many fragrances and to nickel, I simply avoided these or wore gloves, and had no further flare ups.
I recently went thru what I feared was DH. I had a rash with blisters that itched and burned. I had inadvertently used a hair product containing wheat protein, however it turned out to be the fragrance or dye in a dish soap I'd been using for a couple years. Perhaps they changed ingredients, who knows. After some light treatments, wearing gloves, and switching to a fragrance and dye free soap, my skin cleared up.
If you don't follow a gluten-free diet -- you'll probably start first noticing problems because of vitamin deficiencies -- your body can't absorb nutrients from your damaged small intestine; you will be more likely to get stomach cancer (the figure I remember seeing was 800x more likely), more likely to get colon cancer and other cancers; because it is an autoimmune disease it can trigger other autoimmune diseases (that cannot be fixed by dietary changes) like lupus and ms and certain types of arthritis. WAY more likely to get hard to control diabetes. There are now doctors that test for celiac when people come in with diabetes.
Looking back I had symptoms in my teens, but wasn't diagnosed until I was in my 40's. Already had some bone loss (couldn't absorb calcium), had anemia for about 15 years that they couldn't fix, had lived with suicidal depression for decades that went away the 3rd day I was on a gluten-free diet, and had cancer.
You might not think so now, looking at all the things you feel you'll miss out on, but you are so very lucky to have been diagnosed at 19. Any problems you currently have will be reversible. gluten-free Pizza is great -- you just have to find the places that make it the best. The first couple months are the worst, because gluten seems like it is in everything, but once you figure out your new "go to's" for snacks and meals, it gets easier. Good luck!
A mistake that many of, myself included, made! Don't feel bad about it, feel good that you've at least identified a possible cause.
I was faced with a similar choice a few years ago and opted to go back onto gluten for a 'challenge' to see if I had celiac. I kept a food diary during this time and tracked the reappearance of symptoms, some gastro intestinal but primarily neurological. I tested negative for celiac much to my surprise, but the challenge confirmed gluten as an issue, so NCGS is best diagnosis I'm likely to get for now at least.
Your question re fructans is a good one and not easy to answer. The fact you've asked it suggests you've done some research and are aware of the unclear science once celiac is excluded. For what its worth I think that what may happen is that some people who get IBS relief from a gluten free diet are indeed correct to avoid the foods, but incorrect in identifying gluten as the cause. They may actually be reacting to fructans, polyols, or other parts of the wheat,carbs rather than proteins.
However there are also well documented cases where gluten itself is the culprit, some more info on this here and I believe this is where I sit.
You need to decide what level of uncertainty you can live with. Medical assistance will depend on reintroducing gluten. If you do it with a food diary you may learn more about your reactions, maybe even be able to customise your diet to your own body. Most importantly, you would properly exclude celiac as a cause, which is important because its a serious condition and if you do have it, far better to know for both you and your family who may also want to be tested.
Finally, I collected some links and info here some time ago, it may be useful.
Best of luck