Please Help Me Interpret My 4 Yr Olds Celiac Panel Results

[Brandee]

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?

[Kate129]

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]

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]

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.

[Lfrost]

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]

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]

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?

[frieze]

Do you have a link to this announcement?

Open Original Shared Link

[VydorScope]

Open Original Shared Link

Thanks!!

[frieze]

Thanks!!

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