Welcome to the board.
I think I have a problem with gluten. I had a baby in February. Shortly after his birth I started having sulfer burps that would start between 6 to 9 pm followed by diarrhea until 10 am the next day. At first I thought I caught some stomach bug but after a few times noticed a pattern. This problem has gotten more frequent and now I'm experiencing bloating and pain when eating and drinking. I found a thread about nocturnal diarrhea on this site one night. As I read the posts I almost started to cry. I could have written any of them. I decided to cut out gluten the next day. All my symptoms went away within a few days. Then I read that you need to eat gluten for the tests to come out accurate. I began eating gluten again. That is when I started having a lot of pain when eating anything with gluten. It actually took about 3 days for the symptoms to come back. I don't know what tests my doctor will order but I stopped eating gluten again because it hurts so much and I can't take very good care of my children with the symptoms. I also passed a kidney stone about a week ago and have another still there. I don't know if this could be related or not.
What I need to know is this:
How long before testing do I need to eat gluten?
What tests are important to have?
Is there any way to eat gluten and calm the symptoms of gas, pain and diarrhea so I can function well enough to care for my children?
Is there a problem with nursing a baby with Celiac Disease?
Congratulations on your little one. Many celiacs find their disease is kicked off by a traumatic or major health event - pregnancy and childbirth has done that for more than one person around here.
To answer your questions:
For the most accurate tests, you need to be eating gluten (equivalent of 1-2 slices of bread per day) in the 8-12 weeks prior to blood tests, or the 2-4 weeks prior to an endoscopic biopsy. Since you have mostly been mostly eating gluten, get tested immediately. As you have found, it can be difficult to next to impossible to reintroduce gluten after being gluten-free for a time. Get tested now.
The available tests are:
tTG IgA and tTG IgG - most common tests
DGP IgA and DGP IgG - newer tests
EMA IgA - detects more advanced disease
total serum IgA - a control test
AGA IgA and AGA IgG - older and less reliable test
To calm symptoms, do not overdo the gluten. 1-2 slices of bread is all you need - that could be half a sanwich, a muffin, or a small serving of pasta. Some find eating gluten at night is helpful as it doesn't wreck your day... just your night. A gluten challenge is needed to make you sick so the tests will detect celiac disease, if you are well they won't work... It's a bad system.
There is no problem nursing a baby with celiac disease, as far as I know. Babies who have celiac disease may have issues with breast milk (gluten) if the mother is consuming gluten though. Be aware that celiac disease is genetic and if you have it your little one has about a 1 in 10 chance of getting celiac disease. If she is consuming gluten, you will need to test her every couple of years or immediately if she shows symptoms. Young children are harder to get an accurate test from so if tests are negative, and you see signs of celiac disease, she might have the disease in spite of what the tests say.
Here is some good reading: