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Many thanks to all the kind folks who responded with suggestions and support. Some asked for a summary so here it is.
Several people pointed out that if lab work was done in different labs the reference numbers may be different and so results may be not comparable. I checked our two labs and the reference numbers were different, but it turned out to only make his increased tTG IgG numbers even worse than at first glance.
According to information presented to one group by a speaker from the U/Chicago celiac clinic, it takes ~6 weeks for antibody levels to return to normal after a gluten encounter. Testing in a couple of months should be lower. Others suggested waiting 6-9 months, and others said annual testing helps prevent undue emphasis on lab numbers. Several suggested that we should be encouraged by the growth of our child since going GF a few months ago, and save our concern for when he demonstrates symptoms in order to identify unexpected sources of gluten exposure.
Hordes of folks said it is common for a celiac to have increased reactivity to gluten once on a GF diet for awhile (one said after 3-4 months GF). The reason is unproven, but some believed it is because pre-diagnosis the celiacs have some tolerance for gluten, but after a time on a GF diet, the body seems to reset itself for zero tolerance. Then even a tiny exposure will trigger symptoms. I’m told Hans Selye's explanation of adaptation to physical stress explains this very well. An overview is given in Dangerous Grains, but for an in-depth discussion you might look at one of Selye's books on the topic of stress.)
Someone said it takes at least 6 months for the gut to heal and another said it can take from two weeks to five years for the villi to recover and start working.
Potential sources of ongoing exposure that were pointed out include lip balm/lip stick, toothpaste, shampoo (that drips into the mouth) and hand lotion (on my hands as I prepare my son’s food, or on his hands that go into his mouth), the celiac’s toothbrush could contain microscopic crumbs if he has just demonstrated symptoms of accidental exposure so put through dishwasher or replace, airborne gluten containing crumbs from someone opening a box of cereal, etc…, the kitchen sponge can spread contamination (so recommend dishwasher as much as possible and preparing his food on a clean plate) and the dish towel, licking stickers, stamps, and envelopes (some experts say not to worry, but other people are concerned about products from overseas), foods manufactured in facilities that also manufacture gluten containing items, check all medications, check with pharmacy each time filling a generic drug to be sure they haven’t changed ingredients, other children dropping crumbs on the floor/furniture/tables, child handling pet food that may not be gf, Playdough, cross-contamination at school, should use a separate colander for draining gf pasta and a separate toaster.
People reported significant changes in the immune system of celiacs; one child now has extreme reactions to things like vaccinations that didn’t bother him much before. A doctor at Mayo told the family that the years of constant inflammation pre-diagnosis predisposed him to be more reactive to things that in other kids would generate only a small immune response and it may take years for his immune system to “relax” before it would stop being so sensitive.
Other problems people recommended looking into included food allergies or sensitivities, either via keeping a food diary or by getting testing that includes soy, millet, sorghum, amaranth, mango, lactose/casein/dairy, egg, chocolate, corn, yeast, coffee, sesame, quinoa, and buckwheat, spices, colorings, chemical additives; untreated problems with fungus or yeast can also interfere with gut function; and one person said prescription pancreatic digestive enzymes finally cleared up his problems, after years of dashing for the rest room. Celiac children diagnosed late may have a short window to do catch up growing and may need human growth hormone injections.
As far as the IgA deficiency,someone heard Dr. Michelle Pitzak speak at the Internation Symposium in NYC in 2006. She mentioned that she does see kids up to age 7 whose immune systems aren't developed enough to make sufficient IgA antibodies. Elevated IgG antibodies are sysmptoms of celiac in those kids. He may not necessarily be IgA deficient when he gets older.
Other resources that were recommended include:
www.theglutensyndrome.net
http://www3.interscience.wiley.com/journal/117987639/abstract?CRETRY=1&SRETRY=0
http://www.pharmaceutical-int.com/categories/coeliac-disease/coeliac-disease-and-pancreatic-exocrine-insufficiency.asp
ROCK (raising our celiac kids)
Local support groups
Hiring a knowledgeable nutritionist.
Thank again to all.
Dawn Pilney
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