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

Confusing Lab Results

roshimaximom

Recommended Posts

roshimaximom Newbie
roshimaximom
Posted

Hi All,

I've been reading here a long time but not posting. Very quick background on us: my 3 year old son has had a myriad of health issues since he was tiny and had his first celiac tests a year and a half ago. At that time he had a positive genetic screen (I am not sure which) and he had low IgA (14) so the other test wasn't valid, but didn't show active celiac. He has been having increasing diarrhea and tiredness lately so I convinced (hard to do for some reason) our pedi to re-do his celiac panel last week. He got:

his tTG Ab, IgA is 31, with a positive being over 8

his total IgA is 40 with the normal reference range being 24 to 121

his Gliadin Ab IgA is 3 with the positive being over 17.

We're going to be referred to a pediatric GI doc (he has seen them once before actually).

Thoughts? I guess if he's going to have a biopsy, I should *not* take him off wheat yet, right? I guess my confusion is how can his tTG be in the "moderate to high" celiac range when his Gliadin is low? I appreciate the opinions of those who know more than me ;)

Thank you!

Larissa and Macky

P.S. Will be reading about experiences doing biopsies on 3 year olds. I admit to not looking forward to it, assuming that is where we're headed.

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

Celiac.com Sponsor (A8-M):


roshimaximom Newbie
roshimaximom
Posted
  • Author

talking to myself a little, but in case someone else reads this later with a similar question, the Ped GI Nurse Practitioner called and said yeah, its a very strong positive for celiac and we need to biopsy, and I decided to go for it, they're calling to schedule within 24 hours.

Hi All,

I've been reading here a long time but not posting. Very quick background on us: my 3 year old son has had a myriad of health issues since he was tiny and had his first celiac tests a year and a half ago. At that time he had a positive genetic screen (I am not sure which) and he had low IgA (14) so the other test wasn't valid, but didn't show active celiac. He has been having increasing diarrhea and tiredness lately so I convinced (hard to do for some reason) our pedi to re-do his celiac panel last week. He got:

his tTG Ab, IgA is 31, with a positive being over 8

his total IgA is 40 with the normal reference range being 24 to 121

his Gliadin Ab IgA is 3 with the positive being over 17.

We're going to be referred to a pediatric GI doc (he has seen them once before actually).

Thoughts? I guess if he's going to have a biopsy, I should *not* take him off wheat yet, right? I guess my confusion is how can his tTG be in the "moderate to high" celiac range when his Gliadin is low? I appreciate the opinions of those who know more than me ;)

Thank you!

Larissa and Macky

P.S. Will be reading about experiences doing biopsies on 3 year olds. I admit to not looking forward to it, assuming that is where we're headed.

Tallforagirl Rookie
Tallforagirl
Posted
...his tTG Ab, IgA is 31, with a positive being over 8

his total IgA is 40 with the normal reference range being 24 to 121

his Gliadin Ab IgA is 3 with the positive being over 17.

We're going to be referred to a pediatric GI doc (he has seen them once before actually).

Thoughts? I guess if he's going to have a biopsy, I should *not* take him off wheat yet, right? I guess my confusion is how can his tTG be in the "moderate to high" celiac range when his Gliadin is low? I appreciate the opinions of those who know more than me ;)

Thank you!

Larissa and Macky

P.S. Will be reading about experiences doing biopsies on 3 year olds. I admit to not looking forward to it, assuming that is where we're headed.

The tTG is the one that counts as far as diagnostic accuracy, and being positive it seems there's a good chance it's celiac disease.

The endoscopy and biopsy is a very straightforward and quick procedure, as it's performed under sedation. He won't feel a thing.

happygirl Collaborator
happygirl
Posted

The reason that one may be positive and one negative (or variations thereof) is that none of the tests are perfect, and they do not correlate 1:1. If that were the case, then they would only need to run one test - but none of the tests are perfect.

Do not go gluten free until all testing is completed.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

The biopsy has been the "gold standard" of diagnosis since the 1960's--but nowadays, the blood tests available are far, far more accurate ind informative than what was available 50 years ago!

Most doctors would consider your child's blood work to be a definitive diagnosis of celiac. Now, it's possible that there might be something else that your doctor wants to look for--but he can look for it later if a gluten-free diet doesn't eliminate symptoms.

An endoscopy/biopsy IS one of the less intrusive surgeries--not like open-heart surgery, for example. Yet, it DOES carry major risks--infection, reaction to sedation, puncture, etc. These risks are obviously greater in a small child.

If it were my child, I would try the NON-invasive option (the gluten-free diet) first, and only opt for an endoscopy/biopsy if after, say a couple of months, I saw little or no improvement in symptoms. And I DO have a child who has been through open-heart surgery.

I think it's great that your doctor ordered--and correctly interpreted --the blood tests for celiac. But my experience, and the experience of many here, has led me to believe that the only reason that the biopsy is still being touted by many doctors as the "gold standard" of diagnosis is that they get a lot of money from it. Obviously, they don't make a penny from a diet change.

Whatever you decide, best of luck, and please keep us posted.

Oh--and until those intestinal issues are resolved, I would delay any further vaccinations, and do some research on www.nvic.org. With those intestinal issues, your little one is at risk for serious vaccine reactions.

roshimaximom Newbie
roshimaximom
Posted
  • Author

Thanks for the feedback, everyone. I've struggled with the risk of the biopsy. My son has not been under general anaesthesia before but my daughter has - she has hypomineralized molars and had to have dental surgery (yes, she is getting a celiac panel done this week). the GI wants us to do a biopsy on Feb 17, and to stay on gluten until then. I am mixed on it. I feel like well, he has it, I know he has it. But, I've worked with this GI nurse practitioner a lot (again for his sister), and I think she has his best interest at heart, and based this and on other stuff in our family (history of structural anomaly in digestive tract that is genetic, and a lab he had that shows low pancreatic enzymes) I am leaning toward doing the scope.

We are already limited vaccinators - but I will keep this in mind. I a not planning any new vaccines for him in 2009.

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. Celiac.com Sponsored Post
      0

      An Inclusive Valentine's Day: Easy Tips for a Celebration Everyone Can Enjoy

    2. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    3. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    4. 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...
    5. 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...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,337
    • Most Online (within 30 mins)
      7,748
    Susan1001
    Newest Member
    Susan1001
    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

    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • 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?
×
×
  • 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.