Tests Back - What's Next?

[domesticactivist]

I'm still going a little crazy because I thought Kimball Labs would tell us exactly which alleles were present but instead they just tested for DQ2 alpha and beta alleles and DQ8 beta alleles.

Even still, we got some good information. My son, (the 10 yo with tummy troubles, anxiety, adhd, bone pain, and surgery for a "septic hip" that didn't turn out to be septic) tested positive for the DQ2 allele: DQA1 *0501 or *0505. The other risk factors were not present.

My daughter (the 11 year old who is extremely small for her age, has Tourette's, and attention issues) came back negative on the genetic celiac screening for all they screened for. She also had bloodwork done (on gluten, about 1 piece of bread a day) and these were the results:

Endomysial AB, IgA <1:5 reference <1:5

Transglutiminase AB IgA 2 reference <20 EU

Transglutiminase AB IgG 5 reference 0-19 EU

IGA 97 reference 45-250 mg/dL

Gliadin AB, IgA 1 reference <20 EU

Gliadin AB, IgG 1 reference <20 EU

Sedimintation Rate was 1 reference 0-20 mm/hr indicating no/little inflammation

On the CBC everything was solidly in the normal ranges

On the Comprehensive Metabolic Profile these values stood out to me:

Alk. Phos. 218 reference 50-136 U/L - could indicate she's growing, a vitamin D deficiency, or ??

Alt (SGPT) 28 reference 30-65 U/L - seems it's ok to be low on this one?

Creatinine .5 reference .6-1.0 mg/dl - could indicate a diet too low in protein or high SIADH? Her BUN to Createnine ratio is 26:1 which is higher than the normal range.

Total Bilirubin .2 reference .2 - 1 mg/dl

The thyroid tests all looked to be solidly in the normal range

TSH was on the low side at .97 reference .34-4.82 uIU/L

Free T4 .77 reference .59-1.61 ng/dl

Free T3 3.60 reference 2.9-5.1 pg/mL

Her Insulin Like Growth Factor was in the normal range but on the low side

IGF-1 147 reference 111-551 ng/mL

Tests we still need to do for daughter:

Bone age

Turner's Syndrome Karyotyping

SIADH

Vitamin D deficiency

Magnesium Deficiency

Other recommendations???

She has an appointment scheduled with a pediatric endocrinologist in April.

Tests we still need to do for son:

???

Considering another ELISA

Would it be worthwhile to do the celiac blood tests even though he's been gluten free (with increasing degree of success) since November?

We're continuing with the gluten free diet and taking our daughter off gluten as well for simplicity's sake. We're also strongly considering doing GAPS in order to hopefully figure out the rest of our food sensitivities and allergies (we know that our son, at least, has many).

I'm relieved with regard to my son, but feel like we still have so much to figure out.

[ravenwoodglass]

You say she has been doing better on the diet since November, when did you have the tests run? If she was gluten free or gluten light that would cause a false negative with testing. One slice of bread a day is gluten light.

False negatives are not uncommon even on a full gluten diet. If you want to have the celiac panel rerun put her back on gluten with a minimum of 3 to 4 slices a day for 2 to 3 months.

Despite the fact that she is negative for DQ2 or 8 she could still have issues with gluten including being a celiac.

[domesticactivist]

Yeah our dr said she couldn't rule out celiac for our daughter but it wasn't as likely. Our son never had the bloodwork for celiac done at all. He had a BUNCH of unrelated bloodwork with his surgery and at the time we didn't know about celiac. Would there be any value in doing bloodwork on him at this point (for future reference)? there is no way we're putting him back on gluten.