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. Scott Adams
      - Scott Adams replied to RDLiberty's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Toothpaste question.

      There is no scientific evidence to suggest that hydrated silica or its relative, silicon dioxide, triggers a celiac-specific immune response or causes intestinal damage in individuals with the condition. The concern you likely encountered online is a common misconception. Here’s the key distinction: the protein in gluten (gliadin) is what causes the autoimmune r...
    2. Scott Adams
      - Scott Adams replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Probiotics

      There is no single "best" probiotic brand universally recommended for celiac disease. The goal of a probiotic in this context is to help support the gut microbiome, which can be disrupted by the damage caused by gluten exposure. The most important factor is not the brand name, but ensuring the product is certified gluten-free, as some probiotics use wheat...
    3. Scott Adams
      - Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Celiac attack confusion and anxiety

      What you are describing, while terrifying and severe, is an experience that others in the celiac community have reported during a powerful reaction. The systemic inflammation triggered by gluten exposure in someone with celiac disease can absolutely extend far beyond the digestive tract, creating a cascade of symptoms that feel like your entire body is in...
    4. Scott Adams
      - Scott Adams replied to nanny marley's topic in Related Issues & Disorders
      2

      Manitol and mri

      The substance you're likely thinking of is "mannitol," which is a sugar alcohol, and it is indeed used as a sweetener in some "sugar-free" products. However, for an MRI, the drink is almost certainly "Mannite," which is a brand name for a laxative preparation used to cleanse the bowel before the scan. Its primary purpose is not to sweeten but to create a...
    5. Scott Adams
      - Scott Adams replied to bombier's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      KATZ CINNAMON DONUTS

      I'm so sorry to hear you're feeling so unwell, and I hope you recover quickly. While your personal experience of getting sick is absolutely valid, there are a few key inaccuracies in the information you've shared that are important to clarify for anyone else reading. The central misunderstanding is about oats and gliadin. Oats do not contain gliadin...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,790
    • Most Online (within 30 mins)
      7,748
    klholt
    Newest Member
    klholt
    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

    • Scott Adams
      Toothpaste question.

      By Scott Adams · Posted

      There is no scientific evidence to suggest that hydrated silica or its relative, silicon dioxide, triggers a celiac-specific immune response or causes intestinal damage in individuals with the condition. The concern you likely encountered online is a common misconception. Here’s the key distinction: the protein in gluten (gliadin) is what causes the autoimmune reaction in celiac disease. Hydrated silica and silicon dioxide are minerals, chemically inert compounds of silicon and oxygen, and are completely unrelated to gluten proteins. They are widely used as abrasives in toothpaste and anti-caking agents in food powders because they are stable and non-reactive. While any individual can have a unique sensitivity to any substance, there is no mechanism by which these silica compounds would mimic gluten or exacerbate celiac disease. Your diligence in using a certified gluten-free toothpaste is the correct and most important step, as it eliminates the risk of cross-contamination with wheat-derived ingredients like starch. Based on current scientific understanding, the hydrated silica in your toothpaste is not an issue for your celiac management.
    • Scott Adams
      Probiotics

      By Scott Adams · Posted

      There is no single "best" probiotic brand universally recommended for celiac disease. The goal of a probiotic in this context is to help support the gut microbiome, which can be disrupted by the damage caused by gluten exposure. The most important factor is not the brand name, but ensuring the product is certified gluten-free, as some probiotics use wheat-derived starches or are produced in facilities that handle gluten, posing a cross-contamination risk. Furthermore, the specific strains of bacteria can matter; some research suggests strains like Lactobacillus and Bifidobacterium may be beneficial, but individual responses vary greatly. Because the supplement industry is not tightly regulated, choosing a reputable brand that undergoes third-party testing for purity and potency is key. 
    • Scott Adams
      Celiac attack confusion and anxiety

      By Scott Adams · Posted

      What you are describing, while terrifying and severe, is an experience that others in the celiac community have reported during a powerful reaction. The systemic inflammation triggered by gluten exposure in someone with celiac disease can absolutely extend far beyond the digestive tract, creating a cascade of symptoms that feel like your entire body is in revolt. The severe pain, neuropathy, muscle and jaw tension, and intense anxiety and confusion are all potential manifestations of this body-wide inflammatory and autoimmune response. It's a well-documented phenomenon that a celiac attack can provoke a significant neurological and psychological component, including "brain fog," disorientation, and panic-level anxiety. While your first step should always be to meticulously re-check all foods, medications, and even cross-contamination sources, it's also possible that a previously safe product has changed its formula or that you encountered a hidden source. 
    • Scott Adams
      Manitol and mri

      By Scott Adams · Posted

      The substance you're likely thinking of is "mannitol," which is a sugar alcohol, and it is indeed used as a sweetener in some "sugar-free" products. However, for an MRI, the drink is almost certainly "Mannite," which is a brand name for a laxative preparation used to cleanse the bowel before the scan. Its primary purpose is not to sweeten but to create a clear image by distending the bowel and stimulating a bowel movement. While the names sound similar, the function and formulation are very different from a small-quantity sweetener. That said, your concern is valid and should be addressed with your healthcare team. The most important step you can take is to call the MRI department or your referring doctor directly. Explain your specific reaction to sweeteners in detail—mentioning the throat and ear sensations is crucial as it could indicate a more significant sensitivity. They can confirm the exact drink they use, check its full ingredient list for you, and determine if an alternative prep is available or if pre-medication is recommended to ensure your safety and comfort during the procedure.
    • Scott Adams
      KATZ CINNAMON DONUTS

      By Scott Adams · Posted

      I'm so sorry to hear you're feeling so unwell, and I hope you recover quickly. While your personal experience of getting sick is absolutely valid, there are a few key inaccuracies in the information you've shared that are important to clarify for anyone else reading. The central misunderstanding is about oats and gliadin. Oats do not contain gliadin; gliadin is a specific protein found exclusively in wheat. The protein in oats is called avenin, which is similar in structure but is a completely different compound. For the vast majority of people with celiac disease or gluten sensitivity, pure, uncontaminated oats are safe. The reason "gluten-free" oats are necessary is because regular oats are frequently cross-contaminated with wheat, barley, or rye during growing and processing. Certified gluten-free oats are tested to ensure they are free from this cross-contamination. It's possible you may have a separate and less common sensitivity to avenin in oats themselves, or the illness could have been caused by another ingredient or even an unrelated virus. Given your expertise and severe reaction, it would be a good idea to discuss this with a doctor to pinpoint the exact cause. This article, and the comments below it, may be helpful:    
×
×
  • 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.