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5 year old's TTG level not going down- 1 year gluten free

CeliacMommaX2

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CeliacMommaX2 Enthusiast
CeliacMommaX2
Posted

My 5 year old's TTG level is not dropping.  It was 69 when diagnosed a year ago.  At 6 months gluten-free it was 73, and now a year later is 84!  We are a strictly gluten-free household, don't eat out, and bring food with us everywhere we go.  I'm trying to figure out where to go from here...

Should I just be patient and wait?  Cut other foods (can gluten-free oats and/or milk keep TTG elevated somehow?)  Should I cut all grains?

I'm trying to figure out how extreme to go.  Any thoughts/suggestions would be wonderful!

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GF-Cheetah Cub Contributor
GF-Cheetah Cub
Posted

My 12 year-old was diagnosed with celiac 2 years ago.   Her TTG is still not back down to normal.   It did came down slowly, our TTG was over 100 when diagnosed, but our last TTG was 54, normal needs to be 20 or below.

We too are a gluten-free household, so we don't contaminate her food.   This has been a frustrating experience.   We are scheduled for another TTG blood test in May, if our TTG is still above normal, our GI doctor wants to do another endoscopy.   This is to see if her TTG numbers are falsely high for some reason, or if there is indeed still damages in her stomach linings after two years of going gluten-free.

cyclinglady Grand Master
cyclinglady
Posted

You might find this of interest:

Open Original Shared Link

Basically, adhering to a whole foods diet might help.  

rehh05 Apprentice
rehh05
Posted

Could your child be being exposed at school? Maybe sharing snacks? Or crumbs from someone else's lunch getting into your child's lunch? Exposure from play dough? I teach pre-k and know I have to be super super careful with myself with all the crumbs from the children's wheat based snacks all over the place. And play dough gets into everything once it gets on to a shoe. All it takes for sensitive people to be exposed is for some of those traces left by wheat eaters/users to get onto our hands and then accidentally into us. 

  • 2 weeks later...
frieze Community Regular
frieze
Posted

hmm, preschool? day care?  grands?

GFinDC Veteran
GFinDC
Posted

Some people react to oats also,.  Last I checked they say it is small percentage of celiacs who react to them but react they do.  Have you checked all medications and pills for gluten?  Drinks like tea etc?

Gemini Experienced
Gemini
Posted

Is the GI doctor also running her DGP, along with the tTg?  The tTg is not supposed to be run alone upon re-test, you also need to run the DGP to see if she is actually getting gluten into her diet.  tTg can be elevated, and not falsely, with other auotimmune diseases which often present with Celiac.  Either screen for those tests also or do the most obvious thing and re-test her DGP.  That way, you will know if she is getting gluten into her diet somehow or whether or not she needs to be screened for other AI diseases.  A re-scope is the last thing you want to repeat as it is so invasive. 

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CeliacMommaX2 Enthusiast
CeliacMommaX2
Posted
  • Author

We are crazy extreme (or so we think) on her diet.  She is homeschooled and is sent with her own food when at activities with snacks.  How can I figure out what we're missing?!

The other lab that they did was the EMA.  1:320 on diagnosis, 1:80 at 6 months & still 1:80 at a year.  

cyclinglady Grand Master
cyclinglady
Posted

How much of her diet is proceessed -- even counting the certified gluten free items?  Avoiding oats, even gluten-free, is good advice. 

Mimi42988 Newbie
Mimi42988
Posted

It depends how bad the intestinal damage was and it depends how long each individual's body takes to fully get rid of the gluten in their body. Some people go 8 months before they even start to notice a difference, some people change in weeks. I would personally cut out all oats because my nutritionist said absolutely no oats even if they claim to be gluten free. Have you asked the doctor why the levels may still be elevated? 

Gemini Experienced
Gemini
Posted
13 hours ago, CeliacMommaX2 said:

We are crazy extreme (or so we think) on her diet.  She is homeschooled and is sent with her own food when at activities with snacks.  How can I figure out what we're missing?!

The other lab that they did was the EMA.  1:320 on diagnosis, 1:80 at 6 months & still 1:80 at a year.  

I think it is still essential to see if her DGP is elevated because if it is, then you know she is ingesting it somewhere and can try and tackle that.  It has happened to people before and you just will not know for sure until that testing is repeated.  They are supposed to be doing that anyway, with the yearly blood work.  I am not implying that your daughter is cheating or you are somehow making mistakes but sometimes things you would not think of can be overlooked.  If the test comes back negative, then you should be looking at screening for other AI diseases.

cyclinglady Grand Master
cyclinglady
Posted

Read this link about a mom (celiac.com member)  struggling to find out why her kid still had elevated antibodies.  It might be useful.  

 

nmlove Contributor
nmlove
Posted

So sorry you're having to deal with this! 

My boys took awhile to go down - year and a half. For the most part it was a gradual trending down. However, they spiked back up and had symptoms return. Like you, we homeschool and we're strict. My kids don't react much to one glutening so to have symptoms return was so frustrating. I looked at what they ate daily and it ended up being one particular item that was labeled gluten-free. Crazy. 

I do agree about dropping the oats for now. Try again after they are "healed" if you want and no more than half cup per day. Everyone has different tolerance to it and as stated above, some have similar reaction as gluten! 

Good luck!  

StephanieL Enthusiast
StephanieL
Posted

We are strict here.  It took almost 6 YEARS to get a "normal" test.  One Dr. wasn't overly concerned as he wasn't having symptoms but that didn't sit right with me.  We went on a long journey (testing foods at home, retesting blood levels, flying to see a specialist who's 'Top of the List' and other things).  There were some obvious things we changed early on but those didn't change things.  Finally this year we had a normal tTG because no Dr would order a DGP but we finally had his allergist send for one and it was fine.

I would push for the GDP first and foremost and go from there. There are other conditions that may be at play or it could be bum blood work.

Just a question, were all the labs drawn and sent to the SAME facility? That can cause inconsistencies too. 

  • 2 weeks later...
CeliacMommaX2 Enthusiast
CeliacMommaX2
Posted
  • Author

We have cut oats and are also doing some more testing in case of any other autoimmune diseases.  Hoping it's just the oats!  I had always thought that oats were not safe because of cross-contamination.  I didn't realize they had similar proteins to gluten!

Thank you for all of the thoughts & input!

  • 1 month later...
CeliacMommaX2 Enthusiast
CeliacMommaX2
Posted
  • Author

Update:  we ended up drawing more labs about 1 month after cutting oats.  TTG is down to 50 and no sign of other AI diseases!  :)  Is this thanks to cutting oats?  I wasn't sure if the TTG would drop that quickly from that.  They wouldn't order a DGP since we don't have a baseline anyway... maybe I should start requesting that one? 

After reading some of the other posts, I've been minimizing grains in general (still do a lot of rice).  I read somewhere that Bob Red Mill's gluten-free flours can be contaminating with oats (even though gluten-free). 

Thanks for everyone's thoughts on this!  I hope we're now heading in the right direction!  It's been so discouraging to make such little progress and we just want her to grow!!!

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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