Biopsy And Genetic Results

[suzyq63]

My daughter, Alison, is 11. She was just diagnosed in January with Type 1 Diabetes, which increases her risk of celiac. We had a gastro appointment today and I now have copies of the genetic results and biopsy results.

AGA IgG - 18.2

AGA IgA - 1.1

TTG IgA - .1

EMA IgA - negative

Total IgA - 124

Alleles Detected: DQ2 heterodimer (HLA DQA1*05/DQB1*02) and DQ8

Biopsy, small bowel:

Duodenal mucosa with an intact villous architectural pattern showing a mild chronic inflammatory infiltrate within the lamina propria. No villous atrophy is noted. LCA immunostain does not demonstrate a signficant increase in intraepithelia lymphocytes.

Gastric biopsy:

Benign gastric mucosa showing minimal chronic inflammation. Thiazine stain is negative for helicobacter type organisms.

So biopsy is considered negative for celiac. What would the inflammation be? Could it be very early stage celiac? Alison's symptoms come and go and have never been really bad. How horrible would it be to wait and see what happens? I'm still learning the ropes of diabetes care and not sure I'm ready for gluten-free also. But then I feel guilty about waiting to see what happens. The gastro said he will do a TTG every 6 months to monitor.

Does anyone have any insights or suggestions? Thank you.

Paula

[Ursa Major]

She has the genes, and she has symptoms. The inflammation is caused by something, obviously. Villous atrophy starts out with inflammation. Plus, of course, there may be villi damage after all, and the biopsies were taken from spots that weren't too bad yet. The fact is, that a positive biopsy confirms celiac disease, but a negative one can never rule it out.

If I was you I would try the gluten-free diet to see if your daughter's symptoms resolve. If they do, then you have your answer.

[ravenwoodglass]

I agree totally with Ursa. In addition in folks with both celiac and diabetes it can make the diabetes easier to control when they are compliant with the diet.

[suzyq63]

Thank you. I spoke with Alison's endocrinologist today regarding something else and she asked how the biopsy results were. I told her that I was seriously wondering if the inflammation was just very early stage celiac. She asked a couple of questions and I read her what the report said. She completely understood my concerns and suggested that maybe it would help me to get a second opinion of both the report and the actual slides. I don't know why I didn't even think of that. So we have an appointment at Boston Children's Hospital on August 15 for a second opinion and I will bring the slides for their pathologist to look at.

They may still be of the same opinion but maybe they'll be able to give me more information. I am definitely leaning more toward trying the diet now anyway. It will be hard to tell if it makes a difference because Alison's worst symptoms seem to have gotten better over the last couple of weeks.