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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Hello and welcome
I don't have celiac. I do have several symptoms in common with you and I do have a problem with gluten, so NCGS for want of a better term.
A celiac response to gluten involves the immune system so there certainly can be a delay between ingestion and the body producing the antibodies. That would correlate with your tongue aching progressively through the week. Some of the weirder symptoms of celiac occur because those antibodies that have identified gluten proteins as a problem then attack different parts of the body, maybe that's the more delayed reaction in your case. Last time I was glutened definitely I noticed some reaction in a few hours but it was a couple of days before I was certain. After effects can last for weeks or months even.
Wheat allergy is the one with the instant response, it's IGE mediated and so you can have an immediate surge in histamines and in extreme cases anaphylaptic reaction. NCGS is less well understood, some dispute it's existince or question if gluten is the cause. The symptoms however are similar to celiac as far as I know and that includes response time.
You've been through a miserable time but your still young and you need to decide whether you want to pursue a diagnosis or not. If you do, then it will require a gluten challenge of probably 6-12 weeks. See the links below for more details.
If you don't I suggest you go strictly gluten free, keep a food diary and see if the improvements you noted before continue. I think you've probably found your answer.
Best of luck!
This is why many of us stick to our own "Trusted Brands" of things we know are safe, and only buy stuff with the offical certification for gluten free. NOTE also in the US they do not HAVE to tell you their facility also processes wheat on the label, just if the actual product contains it in the ingredients. But many will just to avoid legal mumbo jumbo if they somehow have CC issues. Saying the facility also contains/processes wheat is just them covering themselves if people get sick from it.
I make my own mini loafs of a simple almond,coconut,apple sauce blend for dense, bland bread gluten free, and have my pastor bless them. I then keep them in the freezer and bring a piece with me for communion.
I don't have milk in liquid form any more, so I switched to coconut flavoured milk (rice based) for cereal, really like it. Then I take coffee black which I've also adjusted to. For an occasional treat I'll have a soy latte, tastes a bit nutty but I'm used to it now and it's as much about the visual treat of sitting in a coffee shop with a big milky coffee anyway. The last time I had a real milk latte I got some huge spots a day or so later on my chest and that was the clearest signal that milk and my skin weren't a good mix.
What I haven't done is stop eating products that have milk listed as an ingredient. If I do that I lose so many of the nice gluten-free replacements biscuits ice cream etc. I know I could try and get dairy free, but it's expensive and difficult to find. So maybe I should try doing that and see how I go...
It's funny, a few years ago I used to have a 'healthy' breakfast of porridge, milk, with a big spoon full of wheat bran for fibre which I convinced myself I needed for digestion. I used to feel pleased with myself for having a good start to the day when I subsequently found it was the worst combination of foods I could possibly have devised. I think If I ate that right now I'd explode!
I and many others here have been there and sympathise! Keep on keepin' on, it won't be long now before you can start feeling better. In the meantime, if there's a cheesecake, pastry etc that you want to say goodbye to, now's the time...