Ttg Not Lower 3 Months After gluten-free

[DadCares]

Our 8 year old daughter was diagnosed with celiac in December. (She has type 1 diabetes also.) Her tTG was > 100 (We don't know how high since they don't measure > 100). A biopsy confirmed her celiac diagnosis as well. Today, 3 months after being on a 100% gluten free diet, we got her bloodwork back and all celiac markers are still present. Her tTG was still > 100.

The natural question is whether we have made a mistake on one of her foods. But the doctor did suggest that in extreme cases a person's villi could be healing, yet the antibodies could always be present and thus never allowing the bloodwork to produce an accurate assessment of whether her body is healing. Only a biopsy would confirm this hypothesis. One more hypothesis is that we have no idea how far above 100 her tTG was when she was diagnosed and conceivably, her tTG is dramatically lower today, yet still above 100 since she could have been much higher in December.

She has gained 2 pounds (from 47 lbs to 49) and grown 3/4 inch in these 3 months. She no longer gets any of the headaches she complained about before diagnosis. She never had the other stomach issues that are common to others. On the surface, she seems more healthy and it seems like our efforts are working. Yet, again, her tTG and other celiac markers look the same which is contradictory.

To the best of our knowledge, she has been on a perfect gluten-free diet since Christmas with zero exceptions. We have researched every food she eats and watched carefully for cross-contamination. We have called manufacturers. Clearly, we need to reexamine everything we are doing.

Could someone please help advise or speculate? Could any of the hypotheses above be possible? We worked to achieve 100% perfection in caring for our daughter. When in doubt, don't let her eat it (including vitamins). Yet today's bloodwork feels so painful because we wonder if our efforts have failed.

[NewGFMom]

Our Ped GI at Children's Hospital in Boston said it takes a year in most cases for the TTG levels to return to normal. If it's way down after 3 months, you sound like you're on the right track.

[DadCares]

Our Ped GI at Children's Hospital in Boston said it takes a year in most cases for the TTG levels to return to normal. If it's way down after 3 months, you sound like you're on the right track.

That is very helpful to know. The point is that her TTG is not way down after 3 months. In fact, it shows zero sign of numerical movement... both times the number has been >100 (but who knows what the real number is... maybe it is moving down but is still above 100 because it started so high?)

I'd be interested in anyone who started with TTG above 100 to see how long it took to show reduced levels.

[Darn210]

She has gained 2 pounds (from 47 lbs to 49) and grown 3/4 inch in these 3 months. She no longer gets any of the headaches she complained about before diagnosis. She never had the other stomach issues that are common to others. On the surface, she seems more healthy and it seems like our efforts are working. Yet, again, her tTG and other celiac markers look the same which is contradictory.

No more headaches sound good. 2 pounds in 3 months sounds good, too . . . but it should really be compared to her wait gain rate prior to her diet change. Was she a slow gainer or had she really slowed down in the last year or so?

Not having an actual number for comparison really leaves that info as useless. I don't see not being "normal" after three months as an issue. However, it's very frustrating to not even know if the numbers have gone down. I don't know if this is possible . . . but could they send her samples to someplace that would give a definative number??

Don't forget to check toiletries and if you're positive about the food she has at home, I would take a serious look at what access to food she has when she is not with you . . . school . . . it's surprising how much stuff gets handed out in classrooms when you thought you only needed to worry about lunch.

[ang1e0251]

I would back up the posters who said it's too soon and you don't have a definate number so who knows? The headaches are significant. There are a couple of kids in the local school who have lost a year's worth of school due to the many absences from headaches. Growth too sounds good.

Another poster at another site found her daughter's numbers higher than expected and called the cafeteria to find her DD had been cheating. They didn't bother to restrict her or report to her parent even though she had a disability report on file. So following up on her eating when she is away from you is good advice.

[DadCares]

Great points. I'll check with my wife on toiletries. Any typical warning areas? I asked my wife if Cascade dishwashing detergent or something similar could be an issue.

We know school lunch isn't an issue because my wife sends a lunch with her every day with the carbohydrates pre-counted (so she can give insulin for her diabetes). We are eliminating eating out for the next 8 weeks although the following are the only places she has food outside our house.

1. On the Border (Tex-Mex) - She only eats the grilled chicken and queso dip since they confirmed those 2 are gluten free. We bring our own chips from home.

2. Fries from Chick-fil-A - but only after confirming with the manager that the frier is dedicated to the fries only.

3. Vanilla Ice Cream scoop in a cup at Braum's

4. Chicken & Fries from a restaraunt (Laura's Bistro) that has dedicated its entire menu to 100% gluten-free.

[cruelshoes]

In addition to what other posters have mentioned, another thing to consider is that Type I diabetes can cause elevated TtG. So it may be that her celiac is improving, but you are getting a false reading on the bloodwork because of the diabetes. It might be prudent to discuss that angle with your daughter's doctor in addition to everything else you are doing.

[jmjsmomma]

Hi DadCares, and welcome.

I won't be much help. My 5 yo son was just diagnosed in January. He also had TTG recorded over 100. We have his follow up testing in two weeks and I am already a wreck over it. I never thought of the "over 100" issue, but you are right. What if initially our children were really high....and now down to say....110 or something? I would be encouraged that she is growing, gaining weight, and that the headaches have ceased.

On a side note, we must be located fairly close to each other. On the Border, Chick Fil A, and Laura's Bistro are some of our only frequent haunts!

I hope you get some answers!