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Hello!
I'm wondering if anyone with an excellent understanding of gene testing/ serological testing can give clarity to me on the following:
My family (2 adults, 4 kids) were all tested for Celiac first through Entero Lab, then serological testing through Prometheus Labs and/or U of Md Center for Celiac Research. We have been gluten free for about 3 months and have seen incredible improvement in the kids' health.
Entero Lab showed all of us positive for IgA and all of us had very high fecal fat (on their scale of normal).
Serological Testing revealed the following in IgA, IgG, EMA, tTg, and total serum IgA tests: Husb: IgA elevated, all others neg/normal; I was normal on all counts; 11yo. daughter: IgA elevated, all others neg/normal; 10yo. daughter: IgG elevated, all others neg/normal; 7yo. son: IgG elevated all others neg/normal; 4yo.daughter: elevated IgG, low total IgA.
Genetic tests reavealed: Husb: DQ2 pos., DQ8 neg; I was negative on both DQ2, DQ8; 11yo daughter DQ2 pos., DQ8 pos; 10yo daughter DQ2 pos, DQ8 neg; 7yo son DQ2and DQ8 both negative; and last, 4yo daughter DQ2 pos. DQ8 neg.
The four year old never had any outward symptoms of Celiac except mouth ulcers, husband has a lifetime/childhood of classic symptoms but as an adult he's relatively healthy, diverticulitis, diarhhea, headaches. 11yo daughter had severe and profuse bloody noses, anemia, bone pain, lethargy, moodiness since very young; she's grown 3/5in. since gf, put on 2#, still 10th%ile for weight. Ten yo. daughter extremely thin (10th%ile pre gf and has put on 10.5# since gf), bad stomach aches, severe diarhea when subjected to gluten, severe lethary, malaise, bone pain, lots of learning trouble and eye trouble pre gf (all are virtually gone except some intermittent lethargy). Son had severe headaches which would make him throw up, 5x/wk nightmares which totally stopped 1 wk into gf diet, no more severe bloody noses unless exposed to gluten, cracked toenails healed, no more mouth ulcers.
Overall the general health of the family has improved remarkably and really is amazing. I went gf to be safe and to learn (3mo. before the rest of the family so I'd learn to trouble-shoot for them...feel their pain, etc.) and I felt so incredibly wonderful, no more bloating, gas, brain fog, headaches, lost 10 lbs and keep it off, lots of energy. I figured since I'd been low gluten pre-testing (high protein diet) that maybe I had celiac too and just react mildly.
Anyway....my point is, what do I make of all this? Our son had some of the most worrisom symptoms and yet he doesn't have the genetic predisposition for CD...he CAN'T have CD if the tests are correct...and yet his response to gluten is painful!!!! I can't have it either since I don't carry the genes. The others I don't doubt have a predisposition towards CD but whether they are actually in full CD or not I don't know...I'll assume CD so they don't launch into autoimmune mode.... The EMA and tTg negatives suggest that there is no auto immune response taking place, right? No ARA was ever done.
I'm just wondering if anyone has any understanding of gluten intolerance, wheat allergies since my son and I can't have cd according to the genetic results....I just don't know what to make of it and certainly am not going to go out and snarf down a box of ho-hos and neither will my son. I don't want to let down my guard, don't want to let doubt weaken my resolve...its been so "easy" going gf because they all responded so well and are all so healthy.
My husband is a biologist and will only be swayed by hard scientific evidence...not personal here-say or testimonials...I've given him all that and he knows about the increased risk of adenocarcinoma, lymphoma, and other complications of celiac disease. His mother is a living testimony to that...not diagnosed, but probable celiac and now gf. He's just gone gf in the last month. BTW...my brother's daughter is a biopsy diagnosed celiac...so there's a link on both sides; my side of the family has lots of suspicious health issues reaking havoc. I need a class on genetics!!!
Anyone with expertise or similar experience who can give me some assistance, perspective, advise would certainly be welcome to do so. Sorry to be so long-winded...and thanks for any light-to-be-shed.
Most Gratefully,
Kate, Salmon,kID
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