Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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?

Link to comment
Share on other sites
  • 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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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

Link to comment
Share on other sites
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

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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?

Link to comment
Share on other sites
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

Link to comment
Share on other sites
VydorScope Proficient
VydorScope
Posted

Open Original Shared Link

Thanks!!

Link to comment
Share on other sites
frieze Community Regular
frieze
Posted

Thanks!!

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

Link to comment
Share on other sites

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. trents
      - trents replied to Vickey Matteson's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Celiac diagnosis

      So, you did have symptoms: vomiting and diarrhea. They are classic symptoms of celiac disease. That must be why they checked you for celiac disease. A colonoscopy cannot be used to diagnose celiac disease. The scope can't reach up into the small bowel from the lower end. The kind of scoping they do to check for celiac disease is called an endoscopy. The go...
    2. Vickey Matteson
      - Vickey Matteson replied to Vickey Matteson's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Celiac diagnosis

      I had a colonoscopy and they went up to the small intestine and saw something. Prior to this I was having episodes of vomiting. It would be months apart and diarrhea would come too but always started with vomiting. Just out of the blue I would be attacked. They don't know what that is from.
    3. knitty kitty
      - knitty kitty replied to BadHobit's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Help! I have to eat gluten :(

      Welcome to the forum, @BadHobit Were you tested for H. Pylori infection? Sometimes this infection can cause stomach irritation and even ulcers. H. Pylori infection can trigger Celiac Disease. H.Pylori infection is frequently found in celiac disease. Ask for DNA testing to see if you have any of the genes seen in Celiac Disease. Having the genes...
    4. trents
      - trents replied to Nielskii's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Unusual high levels

      Check with your doctor to find out if he/she wants to refer you to a GI specialist for an endoscopy/biopsy to confirm the results of the blood antibody testing or whether or not the tTG-IGA levels are high enough to grant a celiac disease diagnosis without further tests being done. If further testing is expected, you need to refrain from starting a gluten...
    5. trents
      - trents replied to BadHobit's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Help! I have to eat gluten :(

      Welcome to the forum, @BadHobit! For the biopsy they only took one sample from the stomach and one from the small intestine? They should take several samples from the small bowel as the damage from celiac disease can be patchy. Sounds like you were the victim of poor timing with regard to each of your celiac testing experiences in the sense of...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      125,113
    • Most Online (within 30 mins)
      7,748
    Christine Garland
    Newest Member
    Christine Garland
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Celiac diagnosis

      By trents · Posted

      So, you did have symptoms: vomiting and diarrhea. They are classic symptoms of celiac disease. That must be why they checked you for celiac disease. A colonoscopy cannot be used to diagnose celiac disease. The scope can't reach up into the small bowel from the lower end. The kind of scoping they do to check for celiac disease is called an endoscopy. The go down into the small bowel through the mouth and the stomach. The small bowel starts where the stomach ends. During the endoscopy when checking for celiac disease, they will biopsy the lining of the small bowel and send it off to a lab for microscopic analysis. Celiac disease is an autoimmune disorder in which the ingestion of gluten causes inflammation to the lining of the small bowel. This inflammation wears down the millions of tiny finger-like projections that make up the lining. This lining is where all the nutrition is absorbed from the food we eat. As the lining becomes more and more damaged with time, the efficiency with which it can absorb nutrients becomes more and more impaired, often resulting in other medical conditions that have a nutritional deficiency cause. Osteoporosis would be a classic example but there are many others. It's important to realize that whether or not consuming gluten makes you feel ill, if you have celiac disease, damage is happing to the lining of your small bowel, however small it might be and however slowly it might be progressing. This is why it is so important for you to take gluten free eating seriously. Believe me, every celiac in the world sympathizes with you in not wanting to have to go there. Not only does it mean giving up many foods you enjoy but it also has a social cost and can even put a ding in your budget if you rely heavily on pre-prepared gluten free foods.
    • Vickey Matteson
      Celiac diagnosis

      By Vickey Matteson · Posted

      I had a colonoscopy and they went up to the small intestine and saw something. Prior to this I was having episodes of vomiting. It would be months apart and diarrhea would come too but always started with vomiting. Just out of the blue I would be attacked. They don't know what that is from.
    • knitty kitty
      Help! I have to eat gluten :(

      By knitty kitty · Posted

      Welcome to the forum, @BadHobit Were you tested for H. Pylori infection?  Sometimes this infection can cause stomach irritation and even ulcers.  H. Pylori infection can trigger Celiac Disease.  H.Pylori infection is frequently found in celiac disease. Ask for DNA testing to see if you have any of the genes seen in Celiac Disease.  Having the genes for Celiac shows you have the potential to develop Celiac Disease.  Infections, physical trauma and stressful events can trigger the Celiac genes to become active.  Symptoms appear once activated.  If you don't have any genes for Celiac Disease, then it can be ruled out, and another reason for the ulcer and Gerd should be pursued.   Stick with 4 - 6 slices of bread for the Gluten Challenge. Keep us posted on your progress!
    • trents
      Unusual high levels

      By trents · Posted

      Check with your doctor to find out if he/she wants to refer you to a GI specialist for an endoscopy/biopsy to confirm the results of the blood antibody testing or whether or not the tTG-IGA levels are high enough to grant a celiac disease diagnosis without further tests being done. If further testing is expected, you need to refrain from starting a gluten free diet or you risk sabotaging the tests.
    • trents
      Help! I have to eat gluten :(

      By trents · Posted

      Welcome to the forum, @BadHobit! For the biopsy they only took one sample from  the stomach and one from the small intestine? They should take several samples from the small bowel as the damage from celiac disease can be patchy. Sounds like you were the victim of poor timing with regard to each of your celiac testing experiences in the sense of being tested while being off gluten. One thing to be aware of is that once you remove gluten from your diet for a significant period of time, when you return to consuming it your reactions may be much stronger than when you were consuming it consistently. Experts in the field have recently issued revised guidelines for the "gluten challenge" as they realized that their previous advice for amounts of gluten consumed daily during the gluten challenge was not intense enough to produce valid test results consistently. They are now recommending at least 10g of gluten daily (roughly the amount in 4-6 slices of bread) for at least 2 weeks prior to either blood antibody testing or the biopsy. The rash you describe, do you think it could have been dermatitis herpetiformis?
×
×
  • Create New...