My BIGGEST message: go immediately to the very best CELIAC specialist you can find. This is such a tricky disease and even the experts are very humble about what they know of the disease (in a very good, inquisitive way).
My next big message is this: part of our jobs as parents is to teach our children how to take care of themselves health-wise. We have to sometimes endure uncomfortable things (bloodwork) in order to make good, healthy decisions for our bodies. We have one daughter who was a screaming nightmare to draw blood from (it took me and four other adults to do her second blood draw a year ago). Now she just sits on my lap and is brave. I trust both of my six year old girls to make healthy decisions independently now, even when I'm not around--not that the last 12 months were easy by any stretch of the imagination.
A couple of points I echo:
- Make a thorough list of all bloodtests to be drawn and get it done at once
- Yes, do the blood genetic testing
A gigantic reason to intervene (test) is that if you catch Celiac when the kids are young, their likelihood of developing an additional auto-immune disease. This is from the Celiac Disease Foundation facebook post this week:
Early diagnosis is beneficial! "Children who are diagnosed
between the ages of 4 and 12 have a 17% risk [of developing an additional autoimmune disorder]; from 12-20 years of age the risk goes up to 27% and an individual diagnosed above the age of 20 has a 34% chance of developing another autoimmune disorder." - The University of Chicago Celiac Disease Center
You and I, diagnosed in our 40s have an even higher likelihood of developing other diseases (because our systems have been taxed for so long).
Go get 'em! You're a great Mom and it's going to take lots of energy and hard work--and you're doing the right thing!!!