Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Help Celiac.com:
    eNewsletter
    Donate

Ttg Not Lower 3 Months After gluten-free


DadCares

Recommended Posts

DadCares Newbie

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.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



NewGFMom Contributor

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.

Link to comment
Share on other sites
DadCares Newbie
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.

Link to comment
Share on other sites
Darn210 Enthusiast
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.

Link to comment
Share on other sites
ang1e0251 Contributor

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.

Link to comment
Share on other sites
DadCares Newbie

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.

Link to comment
Share on other sites
cruelshoes Enthusiast

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.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jmjsmomma Apprentice

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!

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,458
    • Most Online (within 30 mins)
      7,748

    RUTHANN BRANOFF
    Newest Member
    RUTHANN BRANOFF
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      And the fact is, no two celiacs will necessarily respond the same to gluten exposure. Some are "silent" celiacs and don't experience obvious symptoms. But that doesn't mean no harm is being done to their gut. It just means it is subclinical. 
    • AlyO
      Thank you, Trents.  I appreciate your helpful and friendly reply. It seems more likely to be a bug.  It has been a pretty severe bought. I feel that I don’t have enough experience to know what signs my little one shows after exposure to gluten. 
    • trents
      Hannah24, be aware that if you are on a gluten free diet, you will invalidate any further testing for celiac disease (except genetics) and would need to go back to eating significant amounts of gluten for weeks or months to qualify for valid testing.
    • knitty kitty
      Hello, @Hannah24 Have you had a DNA test done?  Celiac Disease is genetic.  You must have at least one gene to develop celiac disease.  You don't have to be consuming gluten for a genetic test.   Anemia, diabetes and thiamine deficiency can cause false negatives.  Some lucky people are seronegative, but still have celiac disease.  Peripheral neuropathy, tingling in hands and feet are symptoms of vitamin deficiencies.  Vitamin C, Thiamine B1, Niacin B3, Pyridoxine B6, and Cobalamine B12 can each cause peripheral neuropathy.  These same vitamins are needed to produce blood cells.  Most undiagnosed Celiacs suffer from nutritional deficiencies. The DNA test would be helpful.
    • trents
      We do hear of cases of remission but they generally eventually revert back. I wouldn't push your luck.
×
×
  • Create New...