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Hello and welcome! I'm glad you found us!
What CindyTW told you is true. You need to be actively eating gluten in order for the tests to be accurate. Without eating gluten, your body won't make the antibodies that the blood tests screen for, and without a positive blood test they won't do a biopsy of your small intestine to see if you have the damaged villi that true Celiacs have. Be aware though, that you can't test for Gluten Intolerance, they just don't know what to look for. :(
If eating GF makes you feel better, stick with it. I'm self-diagnosed and, like you, my symptoms got better once I was off of gluten. I also know when I eat it by accident, I get sick for a full 48 hours. I don't need tests to know that gluten makes me sick. :)
I have two daughters (ages 8 and 11), but neither of them are bothered by gluten so I don't make them eat a GF diet like mine. Of course, when I cook dinner, I cook only ONE dinner (I'm not a short order chef!) so dinner is GF for the whole family. But if my girls want toast with their breakfast, I keep wheat bread on hand for them. I just have to keep my own stick of butter separate so they don't get crumbs into my butter. :)
I like your idea of having your son be tested, but be sure to not change his diet in any way before having the tests done. Even then, he might test negative for Celiac Disease but still be gluten intolerant, so be aware of that. Watch out for symptoms like yours, and let him know why you switched your diet. My kids know why I switched mine and what happens when I am glutened. Hopefully this will help them if/when they start having symptoms... and hopefully all that I've learned since going GF will help them to transition easily if/when that day comes.
Please be aware that you have to be eating gluten regularly for anything to show up, and testing is not 100% accurate.
Welcome to the team.
Glad you are better after a half day. Yes it is genetic.
Christian Living Sister's group
Christian with Celiac
I am deciding to go gluten free because #1 a while ago my SIL suggested me to be tested and I balked at it (she has it) and recently I googled my recent symptoms and this popped up! I have no health insurance but when I went to the health dept the refused to test me for it. (too expensive) So, I am just going to go for it. I have been 1/2 a day gluten free and - this may sound crazy but I am feeling a bit better already (I have itchy scalp for 20 years - yes -20 years and ihave not itched ALL DAY)
One thing I do have a question about - is this genetic? I have a 8 year old son? should I have him tested?
but I plan on sticking with this and in a month when I go back to the doctor letting them know what I've done and making them test me!
working my way down slow but sure