3 replies to this topic

[rami]

We just received the 6-month follow-up bloodwork results for my 8.5 year old son and I must say I am so relieved because they are normal. He was diagnosed via bloodwork and intestinal biopsy in August 2012, and at the time his TTG IGA was 66 (ref range <=19), his TTG IGG was 14 (which was a high normal, ref range <=19), and his total IGA was 143 (ref range 29-162). Recent bloodwork revealed that his TTG IGA is now 5, his TTG IGG is also 5 and his total IGA is 142. This is such a relief to my husband and I because his only truly noticeable symptom has been lack of growth and although we are extremely diligent about cross-contamination and following the gluten-free framework we had no way of knowing if what we were doing was working!

While we received the bloodwork results, we have his actual follow-up appointment with the GI next Wednesday so I have a million questions that haven't been answered. Can I assume that since his results are normal that his intestines are healed? Does he need a follow up biopsy to confirm? Does anyone know if the bloodwork results are cumulative over a specific time period or are they more indicative of recent changes?

He has yet to show significant growth, but he was also diagnosed with growth hormone deficiency in November and started growth hormone therapy about three weeks ago. I am hoping that we will see a significant growth spurt now that it appears we are on track with the gluten-free diet. Also, my husband and I virtually banned most processed items that we knew did not have gluten ingredients but were processed on shared equipment, would it be safe to try to incorporate some of these items into his diet to gauge his reaction? There are a few things that he really misses, such as a basil pesto tilapia that we found at Costco that didn't have gluten ingredients but was processed on lines with breaded fish. We have a shared household and while he has his own separate toaster, colander, and utensils, and all of our dinners are completely gluten free can I assume that he is not super sensitive to gluten (or should I make no assumptions)?

Any other specific items I should be sure to ask his GI doctor at his appointment?

I should also mention that his iron and calcium were checked in August and they were both normal and the doctor ordered a check of his Vitamin D when the current celiac panel was ordered and it was also normal although a low normal. It was 24 (ref range 20-100). He currently takes two gummy vites a day and two omega 3 fish oil gummies a day as well.

Thanks so much for your knowledge and support, while I do not post often, I do read many of the posts in this forum and the wealth of information available has made this journey more tolerable!

[Cara in Boston]

I believe the normal blood tests mean that no autoimmune reaction is happening . . . not necessarily that everything has healed. My son took a full year to have normal blood results. The doctor was not overly concerned - she said it is different for everyone. We just went in for our 2 year check-up and his numbers are still good. She did run tests for vitamin deficiencies and thyroid problems but there was no mention of repeating the biopsy. I imagine if he is still not growing they might want to check again? My guy shot up 3 inches in the first month of being gluten free.

Strangely, my son was still having symptoms even though we were super careful. (no eating out, no processed food, etc.) Over a year we were still trying to figure out what we were doing wrong. He still felt sick, had joint pain, no energy. When his 1 year blood tests came back normal, we started looking elsewhere. Turns out the poor kid had Lyme Disease! Now that it has been treated, we are wondering if we need to be as careful as we have been. The doctor said, be a careful as you NEED to be . . . it is easy for us to experiment because he gets a stomach ache fairly quickly after being exposed. Not sure how you would tell if your child does not have many symptoms.

Cara

[kvanrens1]

Wonderful news about the test results. My daughter grew around 4 inches on her first year of growth hormone injections and this was prior to going gluten free.

Kristy

[Mom-of-Two]

My daughter had her 6 month follow up a few days ago! Her ttg went from 78 to 10 (<20 is negative), she tested negative on endomysial antibody (she was 4 times positive 6 months ago), her vitamin D was low 6 months ago at 27 and is now 52! She has gained 6 lbs total, but only about an inch (her growth was not affected though before). Joint pain gone.

I would raise the amount of viamin D you are giving- 24 is low! Ideal is 50-60. I give my 8.5 year old 2000 units a day and her levels are now beautiful.

Glad to hear great news!