Jump to content

  • 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:
    Support Our Content
    eNewsletter
    Donate

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

CeliacMommaX2

Recommended Posts

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!

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

Celiac.com Sponsor (A8-M):


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. 

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

Celiac.com Sponsor (A8-M):


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!!!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.