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

4 Year Old Celiac Panel Test Results - Help Understanding

NHMom1016

Recommended Posts

NHMom1016 Rookie
NHMom1016
Posted

My 4 year old recently had a celiac panel blood test done due to his ferritin not going up.

These are the results I was given:

IGA – 123 – Not High

 

Gliadin IGA – 179.62 – Super High – Positive

 

Gliadin IGG – 55.03 – High – Positive

 

TTG IGA - <300 – Positive

 

TTG IGG - <300 - Positive

 

I was told the last 4 are specific to celiac disease.

 

Does anyone have the ranges for each test?  I was given these over the phone so I do not have.  We have an appt coming up with the GI,

so I am trying to understand these results as best I can before I go so I am prepared with my questions.

 

Is it likely that my child has celiac disease with these results?  Could he just have an intolerance?

 

Will they want to scope him?  Can these results mean something else?

 

Any information is greatly appreciated :)

 

Thank you so much!

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Different labs could use different units of measurement.  But " high positive"  " super high"  - sounds like Celiac to me.  When the tests are slightly positive, they can be from other things.  They may want to scope him to make sure there are no other problems and see how bad the damage is.

ravenwoodglass Mentor
ravenwoodglass
Posted

Those are some really high results. As Karen said the doctor may want to do an endoscopy  but they may diagnose without one with results that high.  If you do think you will want to have them do an endoscopy do be sure to keep him eating gluten until that is done. Then you can get him gluten free. Do check out the Newbie 101 thread at the top of the Coping section for some good info on what you need to do to kepp him safe. You should also consider getting other family members tested even if they don't have tummy issues as celiac has many different symptoms. This can be very important for children and teens since celiac can affect mood and learning.

Hope you see good results quickly with the diet but it can take some time to heal.

ironictruth Proficient
ironictruth
Posted

Those are high. Wow. Do you live in NH?

NHMom1016 Rookie
NHMom1016
Posted
  • Author
On ‎5‎/‎7‎/‎2017 at 7:15 PM, ironictruth said:

Those are high. Wow. Do you live in NH?

Yes, we are in NH. 

 

NHMom1016 Rookie
NHMom1016
Posted
  • Author
On ‎5‎/‎7‎/‎2017 at 2:52 PM, ravenwoodglass said:

Those are some really high results. As Karen said the doctor may want to do an endoscopy  but they may diagnose without one with results that high.  If you do think you will want to have them do an endoscopy do be sure to keep him eating gluten until that is done. Then you can get him gluten free. Do check out the Newbie 101 thread at the top of the Coping section for some good info on what you need to do to kepp him safe. You should also consider getting other family members tested even if they don't have tummy issues as celiac has many different symptoms. This can be very important for children and teens since celiac can affect mood and learning.

Hope you see good results quickly with the diet but it can take some time to heal.

Thank you for your reply!!  We went to the GI and he strongly thinks it is Celiac Disease based on the high positive test results but wants to do the biopsy to make diagnosis.  I don't want to put my son through this if we can do a gluten free diet and re- test him in a few moths to see if it helps.   I was told twice now that doing a biopsy is the gold standard of testing for celiac disease but I keep reading that this is now being debated?  Thank you again for responding :) 

CeliacMommaX2 Enthusiast
CeliacMommaX2
Posted

Here's our story:  2 years ago, our 3 and 4 1/2 year olds (at the time) were diagnosed with celiac.  We were convinced to put them both through a biopsy after having positive labs.  Our 4 year old's small intestine was clearly and significantly damaged and she was quickly diagnosed.  Our 3 year old's biopsy only showed a little damage, but not enough to diagnose.  Shortly after, we had a new GI doctor who actually knew celiac disease and diagnosed our 3 year old as well because he had elevated TTG and EMA which went to zero after starting a gluten-free diet.  There was nothing else that could have explained the elevated labs...  He was either too young to have had much damage done or they biopsied an area that was not damaged (yet).

I believe there is new research that is saying the biopsy is not necessary to diagnose children with elevated celiac labs.  However, after your son is put on a gluten-free diet and heals, there is no way to assess what damage is/was there at a baseline upon diagnosis.  We have been struggling to get improved labs on our daughter for 2 years now and are sort of grateful to have a biopsy when she was diagnosed, so we can know if she's healing should we choose to re-biopsy.

Good luck with your decision!

 

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

Celiac.com Sponsor (A8-M):


ironictruth Proficient
ironictruth
Posted
2 hours ago, NHMom1016 said:

Yes, we are in NH. 

 

Mass General in Boston has a pediatric celiac institute. 

Victoria5289 Apprentice
Victoria5289
Posted
On 5/7/2017 at 1:47 PM, NHMom1016 said:

My 4 year old recently had a celiac panel blood test done due to his ferritin not going up.

These are the results I was given:

IGA – 123 – Not High

 

Gliadin IGA – 179.62 – Super High – Positive

 

Gliadin IGG – 55.03 – High – Positive

 

TTG IGA - <300 – Positive

 

TTG IGG - <300 - Positive

 

I was told the last 4 are specific to celiac disease.

 

Does anyone have the ranges for each test?  I was given these over the phone so I do not have.  We have an appt coming up with the GI,

so I am trying to understand these results as best I can before I go so I am prepared with my questions.

 

Is it likely that my child has celiac disease with these results?  Could he just have an intolerance?

 

Will they want to scope him?  Can these results mean something else?

 

Any information is greatly appreciated :)

 

Thank you so much!

Yea he as celiac to me too 

NHMom1016 Rookie
NHMom1016
Posted
  • Author
On ‎5‎/‎10‎/‎2017 at 3:44 PM, CeliacMommaX2 said:

Here's our story:  2 years ago, our 3 and 4 1/2 year olds (at the time) were diagnosed with celiac.  We were convinced to put them both through a biopsy after having positive labs.  Our 4 year old's small intestine was clearly and significantly damaged and she was quickly diagnosed.  Our 3 year old's biopsy only showed a little damage, but not enough to diagnose.  Shortly after, we had a new GI doctor who actually knew celiac disease and diagnosed our 3 year old as well because he had elevated TTG and EMA which went to zero after starting a gluten-free diet.  There was nothing else that could have explained the elevated labs...  He was either too young to have had much damage done or they biopsied an area that was not damaged (yet).

I believe there is new research that is saying the biopsy is not necessary to diagnose children with elevated celiac labs.  However, after your son is put on a gluten-free diet and heals, there is no way to assess what damage is/was there at a baseline upon diagnosis.  We have been struggling to get improved labs on our daughter for 2 years now and are sort of grateful to have a biopsy when she was diagnosed, so we can know if she's healing should we choose to re-biopsy.

Good luck with your decision!

 

Thank you for your post!  I'm still trying to decide on the biopsy.  I am currently trying to find a doctor who will diagnose on the blood tests.  We just had his blood re-tested because his results were very high before and it was mentioned that it "could" be a false positive?  Waiting on the new results now.

alioubba Apprentice
alioubba
Posted

Wow - those are some really high numbers. Something definitely has to be going on. It will be interesting to see if the numbers are still high.

My  7 year old has one positive celiac test - the TTG IGA and it's just barely positive (20-24 is weak positive and over 25 is positive - she is 27).  Her GI appt isn't til September but I hope the doctor will re-run the bloodwork and then if it's still positive, we will do the endoscopy. I am tempted to run her bloodwork sooner because September is a long wait.

I understand that some doctors will diagnose children without endoscopy if you meet 4 out of 5 criteria:

  1. The presence of signs and symptoms compatible with celiac disease.
  2. Positive serology screening (high serum levels of anti-TTG and/or EMA).
  3. Presence of the predisposing genes HLA-DQ2 and/or –DQ8.
  4. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease.
  5. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.

 

 

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.