Long story short my ds2 was not dx'd until he was 3 1/2. I had gone to doc after doc with his symptoms since birth. I knew something was wrong, but I had no idea what. The stomache pain I was told was colick, yeah, right, he was in pain and I knew it, but could not figure out how to fix it. The mucousy, green, frothy poos I knew were not normal, the acid burn rash on his bottom following the frothy poos, it all was not normal and yet, I really had no idea what was wrong. And the pedi we saw then didn't, the FP doc later didn't, the allergist even later didn't...
It makes sense now -- the mucousy poos were his intestinal lining being ripped from his body, the frothy poos were pure pile which is why he had acid like burns on his butt, and the constant crying and screaming every 15 minutes (no joke) b/c it had to hurt like hell to have your intestinal protection removed and then pure bile pass through!
And yet, not 1 doctor in this town I live in thought anything was wrong with him. It was not until I took him out of town and his growth charts were studied, the food list was actually looked at (my list of irritations as a toddler), that a young doctor dx'd him and we were sent to specialist.
I went dairy free the entire time nursing him, he DID have issues with dairy. Those resolved at age 3 1/2 on the GF diet and using raw dairy, but he still does not like milk.
My ds3 at 9 days old started to have the poos like his brother. I gave it 24 hours which I should not have, he got the acid burn rash on his tender tushie and I went GF. It's been 5 days and he is better now. The night of day 9 of his life he was very cranky and unhappy. I won't make the mistake twice.
None of my children have had HepB at birth, 2 of them had it at 3 months or so. So I really can not make a connection between my children's Celiac status and vacinations. I myself have not been vaxed since the mid-nineties. I thought maybe it was the stomach flu virus I had during my pregnancy with ds2, but I was not sick with anything more than a long lingering cold with this pregnancy. And certain glutenous items made me sick during this pregnancy! I sort of knew, but was in denial...
I guess I should add we've all been tested, except the youngest 2. The test we had included the gene testing through Prometheus Labs (which is the only lab that is credible IMO, Mayo screwed up my ds2's first set of labs). My dh is the gene carrier, my 2 older boys have the gene as well, I do not. The actual blood test for Celiac are 29% effective in absence of total villi atrophy and totally ineffective if you happen to be IGA deficient. The biopsy is 33% effective at catching Celiac in the absence of total villi atrophy. So, really, my ds2 was positive meaning he had serious damage, his other blood test showed muscle wasting, as in burning muscle to live -- scarey. My ds1 also shows muscle wasting, but does not come up positive on the Celiac test, but after he lost weight this summer and is already below the growth chart, I made the decision to try the GF diet on him (fwiw - weight gain has not happened yet, so it might be something else). My dh was negative on the test for Celiac, but he can not eat oatmeal without having intestinal upset -- I think he should be GF. Actually not 1 of my solid consuming children can tolerate oats which DQ2 gene carriers with Celiac may be reacting to separate from gluten (small study in a journal I read).
Bottom line, doctors don't know much about Celiac, even those researching it. The test for it are simply a hit and miss IMO. If you have the gene, you might have Celiac, you might not. If you don't have 1 of the 2 genes they know are responsible for Celiac, you could still have Celiac. 4% of Celiacs have neither known gene.
Anyone confused yet? I've had a lot of time to research for my own family's sake. My mother calls me a poop engineer! LOL