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

Please Help Me Interpret My 4 Yr Olds Celiac Panel Results

Brandee

Recommended Posts

Brandee Newbie
Brandee
Posted

I'm looking for some help interpreting my 4 yr old sons Celiac Panel results from 2 yrs ago. I'm currently waiting on new test results as we speak. His GI said he tested + for Celiacs through blood work so he performed a biopsy. The biopsy was negative and his GI Dr. said biopsy is the "gold standard" for diagnosis and since that was negative then he doesn't have celiac disease. He doesn't really have any GI problems but he has severe short stature (3-5 percentile), low weight, diagnosed failure to thrive as infant, developmental delays, speech/language delays. He will be 5 in October and he's the size of a 3 yr old and weighs 29lbs. Since his biopsy was negative they never had me go gluten-free but for some reason last week his Endo wanted to run the Celiac Panel again. I'm assuming if his IGG is elevated again that we will be told to go gluten-free.

These are the results from when he was 2.5 yrs old:

[ Reference Interval: Gliadin Peptide Ab, IgG ♦ ♦ 19 Units of less: Negative ♦ 20-30 Units: Weak Positive ♦ 31 Units or greater: Positive ♦ ♦ Reference Interval: Gliadin Peptide Ab, IgA ♦ ♦ 19 Units of less: Negative ♦ 20-30 Units: Weak Positive ♦ 31 Units or greater: Positive ♦ ♦ Reference Interval: IgG Tissue Transglutaminase ♦ ♦ Less than 20 Units: None Detected ♦ 20-30 Units: Weakly Positive ♦ Greater than 30 Units: Positive ♦ ♦ Reference Interval: IgA Tissue Transglutaminase ♦ ♦ Less than 20 Units: None Detected ♦ 20-30 Units: Weakly Positive ♦ Greater than 30 Units: Positive]

GLIADIN IGG ABS: 5 Units (<_20) GLIADIN IGA ABS: 2 Units (<_20)

05/07/10 12:40OtherSerol[ Reference Interval: Gliadin Peptide Ab, IgG ♦ ♦ 19 Units of less: Negative ♦ 20-30 Units: Weak Positive ♦ 31 Units or greater: Positive ♦ ♦ Reference Interval: Gliadin Peptide Ab, IgA ♦ ♦ 19 Units of less: Negative ♦ 20-30 Units: Weak Positive ♦ 31 Units or greater: Positive ♦ ♦ Reference Interval: IgG Tissue Transglutaminase ♦ ♦ Less than 20 Units: None Detected ♦ 20-30 Units: Weakly Positive ♦ Greater than 30 Units: Positive ♦ ♦ Reference Interval: IgA Tissue Transglutaminase ♦ ♦ Less than 20 Units: None Detected ♦ 20-30 Units: Weakly Positive ♦ Greater than 30 Units: Positive]

IgA TISS TRNSGLUTAMIN AB: 14 Units (<_20) IgG TISS TRNSGLUTAMIN AB: 38* Units (<_20)

I want to also note that every time they have ran a CBC dating back to 2008, his platelet count has been higher than normal. From what I've read an elevated platelet count means there is inflammation going on somewhere.

I've read that a "close to 0" reading of Gliadin IGA could mean they are IGA deficient. Is this the case here? Based on the blood test results and from your non expert opinion - would you say Celiacs is to blame?

  • 2 weeks later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Kate129 Newbie
Kate129
Posted

Hi, my test results were very similar to your sons. I had very positive blood work and a negative biopsy... What my gi doc said is that he calls it latent celiac disease. I had a family member also diagnosed celiac but with a positive biopsy so the blood work combined with genetics are not a good mix. I have been gluten free for around 6 months and feel 100% better. It can't hurt to try him on the diet even with a negative biopsy. I sure wish my parents had then I wouldn't have been so sick for so long. Oh and my gi doc said that at any point the " latent celiac" could become active and when would I realize it wasn't dormant anymore ? he said I wouldn't be able to feel the damage taking place if I am already having gi issues. So his suggestion go gluten free and don't look back.. Good luck and I hope your son feels better asap! Oh and we are currently waiting for my 4 year old daughters blood results too.

1974girl Enthusiast
1974girl
Posted

My youngest had a biopsy for just random stomach aches. They didn't find anything. Fast forward 9 months and her big sister was diagnosed with celiac (biospy and blood). The doctor literally opened the door still sitting on his stool, and yelled for youngest chart. He looked at me with all honesty and said, "I did not take enough biospies to completely rule out celiac." He was just looking generically for pain. He had taken one biopsy of the small intestines, some of the stomach, and esphagus. Her blood is now weak pos. for celiac. I saw all of that to say this....do you know how many biopsies the doctor took of your son? If not, find out. I can't remember the exact number that they recommend but I know it is at least 6.

VydorScope Proficient
VydorScope
Posted

You state in your post...

"His GI said he tested + for Celiacs through blood work "

This indicates he is reacting to something. Blood work is a purely objective test. It is not perfect, but no test is.

The biopsy measures damage. So the doc looked at a small part of the intestine and did not see damage, that is all the biopsy means. The GI interprets that to mean no Celiac. That part is his opinion. That distinction is important here. The objective result is no Celiac caused damage in the areas the GI looked. The opinion is that he does not have Celiac.

Since all the testing is behind you , I HIGHLY suggest you try the gluten-free diet for a while. See if things change in him. I suggest you do this regardless of the new test results. The diet is not harmful in anyway (so long as you make sure he is still getting a good variety of food) and will give you an answer. You might not get the official label of Celiac, but in the end the label is only that, a label. If the gluten-free diet makes him better, then it makes him better. So the objective result of this test is he is either improving or not on the gluten-free diet. IF he is improving that means he has a problem with gluten. That is not an opinion, that is an objective observation. Does that make sense?

The biopsy is a great test, but no test is perfect. The accuracy of it is dependent on the amount of damage the subject has. The worse of the patient is, the better the test.

I am not a doctor, just a parent of an 8 year old. :) My claim to expertise is that one of my degrees is in Statistics which gives me a better understanding of testing, and interpreting test results then the average person. I do not have any medical training, my official training is in math, and statistics. :D

Lfrost Explorer
Lfrost
Posted

This information is straight out of the book "Living Gluten-Free for Dummies" by Danna Korn. In this section, she talks about blood work and biopsy tests and how to read the results:

"tTG (anti-tissue transglutaminase)-IgA: This test is very specific to celiac disease, meaning that if you have a positive tTG, it

MitziG Enthusiast
MitziG
Posted

Dr Fasano is a world renowned celiac specialist. He is the one who initially proclaimed biopsy to bee "the gold standard." Within the last year or so, he has retracted that opinion and now has publicly stated that the bloodwork is so accurate, positive labs + resolution of symptoms on a gluten-free diet is the new "gold standard."

Your GI is not up to date on the most current info about celiac. Few are.

That said, there are a number of reasons his biopsy could be faulty. Given his symptoms of delayed growth + the positive labs, the possibility that he DOESN'T have celiac is extremely slim. Do the diet. When he starts growing and his antibody levels drop, you will likely get the diagnosis. You will at least get your answer.

VydorScope Proficient
VydorScope
Posted

Dr Fasano is a world renowned celiac specialist. He is the one who initially proclaimed biopsy to bee "the gold standard." Within the last year or so, he has retracted that opinion and now has publicly stated that the bloodwork is so accurate, positive labs + resolution of symptoms on a gluten-free diet is the new "gold standard."

Do you have a link to this announcement?

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

Do you have a link to this announcement?

Open Original Shared Link

VydorScope Proficient
VydorScope
Posted

Open Original Shared Link

Thanks!!

frieze Community Regular
frieze
Posted

Thanks!!

LOL, most welcome. Pubmed is your friend....

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.