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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This is really tough.
There is still a lot of research needed in diagnosing (or dismissing) celiac disease. It shouldn't be months/years of misery and uncertainty. A couple of years ago Dr. Marsh (THE Dr. Marsh of the Marsh biopsy rating system) criticized the US celiac community for not recognizing an increase in IELs as early celiac disease. He asked if these doctors would like to be responsible for the oseoperosis or lymphoma of the undiagnosed patients.
I have also seen that it can take months for antibodies to rise. There was a paper (2015) that looked at gluten challenges in diagnosed celiac patients. These are folks with confirmed celiac and for some it took over 3 months for blood tests to show anything.
I hope the strict gluten-free diet works for you. I hope to hear you report back in a couple of months. I'm undergoing my gluten challenge right now. Week 2. It's just really tough.
My 13 and 7 year old have Celiac Disease and my 4 year old has the genes. I have a double dose of the genes so no matter what my children will get a gene that could develop into the disease. I hope that my youngest son doesn't ever develop the disease, but his dr said it could activate later in life. My kids are thriving, they have normal lives, they are smart and have gained knowledge about food that they can carry with them throughout their life. They really don't let anything stop them from living a normal life. I think you'll have the upper hand if you choose to have kids. You'll have the knowledge of what to do to keep them safe if they do have Celiac Disease. You'll be able to relate since you were young when you were diagnosed. How was it for you growing up?
My 7 year old son has this happen. I too get highly angry, like could flip a vehicle kind of angry. It's hard for the little ones to understand what is going on at the time, only knowing that they can't control themselves.... The glazed crazy look in his eye are always a tell. Sleep helps, along with lots of water the following day. The next day we talk about everything and try to figure out what could have glutened him. We've had talks with our school and teachers letting them know that our son is to not eat anything unless we bring it. I think the last time this happened to him was from using shared supplies after a treat party. Now he's very cautious of putting his hands to his lips or mouth.
Now as far as chips, my kids stick with Kettle Brand Chips. They are certified. Potatoes aren't my friend so I can't really say if they taste great.
Wow - those are some really high numbers. Something definitely has to be going on. It will be interesting to see if the numbers are still high.
My 7 year old has one positive celiac test - the TTG IGA and it's just barely positive (20-24 is weak positive and over 25 is positive - she is 27). Her GI appt isn't til September but I hope the doctor will re-run the bloodwork and then if it's still positive, we will do the endoscopy. I am tempted to run her bloodwork sooner because September is a long wait.
I understand that some doctors will diagnose children without endoscopy if you meet 4 out of 5 criteria:
The presence of signs and symptoms compatible with celiac disease.
Positive serology screening (high serum levels of anti-TTG and/or EMA).
Presence of the predisposing genes HLA-DQ2 and/or –DQ8.
Histological evidence of auto-insult of jejunal mucosa typical of celiac disease.
Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.