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
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
I wish I had been diagnosed at 19. In retrospect, I was having symptoms as a 16 year old, and didn't get diagnosed until I was almost 30. That delay created a lot of havoc, and other problems that are now permanent (an aggressive case of rheumatoid arthritis and violent reactions to contamination). You want to be non-compliant? Your choice... but the symptoms will most likely get worse... and you could end up like several other non-compliant celiacs I knew... none of the ones who decided to be non-compliant (as opposed to those of us who occasionally get poisoned) lived more than 10 years past diagnosis, and their deaths were ugly (cancer was bad, pernicious anemia and complete malabsorption were even worse).
From the Chicago Celiac Disease Center which is one of the premier celiac disease research & treatment centers in the world:
Are you scheduled for a biopsy? Are
you eating gluten?
Any changes in your diet can affect the accuracy of your biopsy results. It is necessary for you to be eating gluten every day for at least 4-8 weeks before the procedure. If you are scheduled for a biopsy and are not eating gluten, talk to your doctor about what is necessary to obtain accurate results. If you have
a biopsy and have eaten gluten only a short time before the test, you and your physician will not know if a negative test result is accurate or due to your diet.
Here's a link:
Also, you might want to read this:
My panel was the same as yours........all tests positive by large numbers so you can consider yourself a Celiac. Are you very symptomatic?
I will add that I did not eat Whole Foods exclusively when healing. I needed to gain weight badly so ate gluten-free bread and a few other things that seemed to agree with me. Never had a problem once I went gluten free, except to discover that I had a problem with dairy also. But I healed well and all is good. You'll be fine now that you know what the problem is. Good luck!