I see a couple people are following this thread, and maybe it will be useful to someone else in the future, so I thought I'd update.
I sent a follow up email to the center with my questions, a request for clarification of some things relating to DH, and a request for the full genetic test, and they recommended I come in to see a different one of their doctors - also a Gastroenterologist. Hmmm. Husband& I deliberated, and decided to do it. Second expert opinion, but same place.
In the meantime with help from this board I found two other potential symptoms related to my daughters health that I believe are mediated by an immune response to gliadin (as measured by her strong positive DGP-IgG result): she has mild clubbing of her toenails. They are thickened and curve strongly over the tops of her toes if they grow (like an upside down spoon). It was actually a symptom I found accidentally - I was actually searching to see if her 'weird' toenails might be linked to some other autoimmune condition...and guess what? Celiac is a cause. https://medlineplus.gov/ency/article/003282.htm (it was also discussed by the dad of a pediatric diagnosed celiac in an old thread on these forums.)
I also noticed a patch of depigmentation on her torso. A bright white patch (it's small - about nickel sized, but definitely there.) The area hasn't been exposed to sun, and wasn't the site of a lesion. I suspect it is vitiligo - which is autoimmune, and has been linked in several cases in the medical literature to concurrent celiac.
We went to the half-hour follow up with a new doc. The GI seemed skeptical of me, but said that daughter's initial celiac blood tests should be rerun (TTG-IGA, DGP-IgG), (I guess if it pops positive again we can finally dismiss the 'false positive' idea - I will be curious if this doc will also tell me it is 'meaningless'). This doc also ordered protein allergy blood test, some test to rule out other bowel complication, and we are doing the EMA test too (I requested this be added.)
She told me my kid may be lactose intolerant and to trial 3 days lactose free and said the rashes sound like psoriasis. She looked at white patch and said my kid probably had a rash there and that's why she lost pigment. She looked at toenails (remember - she's a GI) and told me she thinks my kids toes just look like that. (BTW, cant tell if it is happening with fingernails - daughter is a serious nailbiter so they are down to the quick). She recommended we see a dermatologist too. Haven't followed up on that yet.
It was only a half hour follow up, so by the time we went through this stuff I didn't really get any explanation / answers of the genetic test. I asked for print outs of all her full labs including the genetic tests and was told the nurse would take care of it, as doc had other patients. Nurse came in - very nice - gave me computer screen shots with entered results - no actual labs, no info beyond 'negative' or 'positive' (not even reference ranges!) I politely explained that I needed the full labs.
I was told I needed to walk two blocks to a different building, find a specific difficult to access elevator, take it to a basement, and find the medical records office. (Incidentally, on my walk - with two of my daughters aged seven and five, I was sexually street harassed through a truck window / yelling, catcalling, and honking by some ass%$@#. This has never happened to me before when I was with my kids. WTF is wrong with people?? Can I blame gluten for this?? ; ) )
Anyway, I got the full records. (For which, again, I thank people on this board for reinforcing my own basic belief that answers are worth it!) .
Turns out she is a double DQ7.
I can find the DQ7 allele in the med literature linked to celiac all the way back to 1998 studies.
I also found specific studies that had biopsy-confirmed celiacs with the double DQ-7 haplotype.
And I also found this large study, out of University of Naples, published in 2015, http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0138324 that says:
"We diagnosed celiac disease in 666/5,535 individuals, 4.2% of whom were DQ2/DQ8-negative. Interestingly, DQ7 was one of the most abundant haplotypes in all celiac disease patients and significantly more frequent in DQ2/DQ8-negative (38%) than in DQ2/DQ8-positive celiac disease patients (24%) (p<0.05)."
and also this:
"In conclusion, our results obtained in a large Italian cohort of children and adult celiac disease patients lend support to the concept that DQ7 represents an additive or independent celiac disease risk haplotype with respect to DQ2/DQ8 haplotypes. Moreover, our data questions the negative predictive value generally attributed to the absence of HLA-DQ2/DQ8 molecules in subjects at risk of celiac disease. In fact, based on our results a diagnosis of celiac disease should not be ruled out a priori in HLA-DQ2/DQ8-negative individuals carrying the HLA-DQ7 molecule, but this finding should be verified in other large celiac disease populations."
So telling people that it is only DQ2&8 is really bs, which I already knew from you guys. (Apparently - and I found this from an interview link in a different thread on this site) the enterolabs guys, who has a profit motive in getting these tests right, recently said that in his opinion the only excluded haplotype should be double dq4.)
When doc calls me next week to tell me new serology results, I may politely ask if the center is familiar with the myriad of peer-reviewed published medical studies that link DQ7 to celiac, and if so, why they told me (repeatedly) that my daughter is genetically incompatible and can't be at risk.
We took the other two daughters for the blood tests through their pediatrician (They don't seem symptomatic to us outside of irritability (!?) but it is recommended that their risk groups be screened every three years).
So...interestingly is daughter is double dq7 and it means I am dq7 too. I am going to pursue some blood testing too, to be cautious. I've never identified typical GI issues, but I have some other autoimmune-suspicious stuff happening, including peripheral neuropathy. Husband and I agree that if I wind up with positive tests it would be a really surprising outcome! But knowing what I know now, and with two sisters with hashimotos thyroiditis.....hmmmm.)
Husband and I are still debating full gene testing for him. We know he is Dq7 at least, and that he is a biopsy-confirmed celiac, so the only point in gene testing him would be to clarify what else he is in addition to DQ7, which wouldn't change what we are doing for him, and is a bit pricey to satisfy our curiousity.... We may still.
I'll updating again with how all three ds new tests turn out....