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
What if my doctor won't listen to me?
An Open Letter to Skeptical Health Care Practitioners
IT could be many things, I find I have a gastric dumping issue with some meals, I know some food intolerance I have will trigger it. I know If I do not start my day with a big glass of hot liquid and magnesium and have it before a meal, that meal will sit it my stomach till it makes me sick and vomit it up 4-6 hours later. I know for me meats do not digest. they just sit in my stomach til I vomit them back up. Animal fats and certain oils do not digest same thing. just float in my stomach til I puke them up when they start going rancid in my stomach 4-6 hours later.
I find digestive enzymes are a MUST. I take 2-4 times the suggested dosing, and even extra bromine with heavy protein meals.
There is another issue where some people have weak stomach acid there for the stomach does not digest food nor dump it. If you have this issue then betaine hcl will help this. For me it was not my acid but a enzyme issue.
I am sorry that your daughter (and you) are experiencing this. After diagnosis, celiacs need adequate follow-up care. When was the last time her antibodies were checked? Have they come down? Are they still very elevated? This link verifies what I said:
By testing you can help rule out active celiac disease. It can take most celiacs a year or years to recover from celiac disease and all the collateral damage that can come with it.
Then you might consider a dietician who is knowledgeable about celiac disease. Often going gluten free is not enough. People tend to just find substitutes for their already unhealthy food choices. She should focus on fresh fruits, veggies, meat, nuts, dairy, legumes, rice, etc. and avoid processed foods until she has really mastered the diet. The learning curve is so steep! Read our Newbie 101 thread found at the top of our Coping section. It contains helpful tips.
Autoimmune thyroid is very common with celiac disease. Be sure to have her thyroid checked and antibodies tested for the thyroid as well even if other thyroid lab markers are okay.
Besides the lack of periods, have her other symptoms improved?
I wish you both well! As a Mom myself, I get the worry! We want our kids to be safe and healthy! I am glad you are championing her health!
Oh, did the rest of the family get tested even if symptom free?
This might seem daunting but you will heal, you will be able to eat some foods again soon, but first you have to let go of some extras to speed up healing or your going to develop a few more issues your going to regret. Drop the processed crap, take your time cook whole foods from scratch. No sauces condiments, etc. Drop oats, do not deny it you know you feel edgy when you eat them, While your at it drop all grains, sugars, and carbs. Look up paleo diet, for now you can enjoy meat but if you keep on eating carbs you will loose the ability to eat meat period. You will also develop a corn allergy if your not careful, either the gluten CC or other complications best to limit corn intake and start working on removing it from your diet. Enjoy your grandmothers tamales once a month, learn to make them from her. You have or will develop something called ulcerative colitis, perhaps the paleo diet will prevent this or if you already have it it will save it from getting as bad as I know it did. PS Nunataurals pure powdered stevia, and eyrithrol will be your best friends but got easy on them too much will lead to gastric distress early on. And if you crave deserts like I know you will use nutvia coconut flour mixed with eggs for a base, use ground flax, and chia for thickening also. a little goes a long way and you have to let it set up a bit this will become a base for a lot of your food.
Look at investing in a stone mill nut butter grinder, almond butter will be your best friend. To offset cost and make a road map out of life, develop grain free baked good and sugar free options. Artisan Almond Butters, etc. and sell them at farmers markets. You are meant to be a guiding light and to help others with this disease. Do your research look up Celiac.com,
Get your own cook area, set up a small dedicated table with dedicated cookware else where, either your room or the bathroom. Let your mother have her kitchen and make your own this will ease family tensions. Invite her to learn how to cook in your area and stay safe. Practice with her and perfect your gluten free dishes early on for a successful chef job later on. You will need a small tabletop convection oven, rice cooker/crockpot/pressure cooker, microwave, nordicware cook ware, mixing bowels, spatula, freezer paper for work surfaces, etc. ALL NEW, DO NOT try to clean you old stuff IT WILL NOT WORK (trust me I tried it) Get a new blender and hand blender also took weeks to figure that one out.
Supplement wise go look up lucky vitamin.com will save you tons of money. your probably feeling constipated still right? Get Natural Vitality Magnesium Calm and ease in to the dosing at 1/4tsp and ramp it up over the next few weeks, do not be discouraged if it gets really bad at first. Also look up Liquid Health, Stress & Energy and Neurological support they will be your life savers. Give up smoking now look up CBD oil, you will find it works much better for stress and anxiety attacks.
If you have digestion issues look up enzymes from Jarrow, do not fear take 2-3times the does if you need them.
His diabetes educator is not an expert in celiac. IMHO the lets wait 3 months is cruel and unneeded. Ask his GP if he will give the 'formal' diagnosis if you put him on the diet and those numbers go down with retesting in a few months. Or ask for an immediate referral to a GI doctor knowledgeable in celiac. With numbers like that there really is no doubt about his need for the diet.