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Even More Confused After Gi Appt!?

mmcc54

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mmcc54 Contributor
mmcc54
Posted

We had the GI apt yesterday for our one year old...she had a pos IgG and a neg IgA I was under the impression that a positive was a positive and ment celiacs but he said he wasn't confident yet that she had celiacs since the blood test was was 50/50..her IgG was 16.1 which he said wasn't too high but high for a baby who just started eating solids 3 months ago...we are doing the biopsy on tueday..so some questions why would he want to do the biopsy on a baby if he doesn't think its celiacs? was he maybe just saying he wasn't sure until he had solid proof in front of him? also does the biopsy check for other things? and do you get the results right away?

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kpw31 Rookie
kpw31
Posted

Good questions, we have our endoscopy on Wednesday and I'm wondering the same things!

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

just posted this on your other thread:

 

sometimes it helps me to hear others say, I can understand your frustration.  I am not IgA deficient, but the only test that was positive for me was the DGP IgG, and it was a strong positive.  I had the endoscopy done, and it was negative, but even the doctor said the damage could have been farther down.  In the article Spectrum of gluten-related disorders of which Dr. Green and Dr. Fasano were contributors it lists celiac being diagnosed if 4/5 criteria are met:

Open Original Shared Link

1. Typical symptoms of celiac disease

2. Positivity of serum celiac disease IgA class autoantibodies at high titer 

3. HLA-DQ2 and/or HLA-DQ8 genotypes

4. Celiac enteropathy found on small bowel biopsy

5. Response to a GFD

The DGP IgG test has the highest specificity of any of the celiac tests with a 99-100 percent accuracy according to the World Gastroenterology Celiac Guidelines as found on p. 12 of this report Open Original Shared Link

Yet, the Fasano/Green article says the antibodies have to be IgA based  :( IgA antibodies are concentrated in the GI tract and make-up about 10-15% of the bodies immunoglobulin.  IgG antibodies are the most abundant immunoglobulin in the body that account for 75-80% and are found in all bodily fluids.  With the current definition of celiac needing to create villi damage with the IgA antibodies, it doesn't seem to matter if you have an adverse reaction happening throughout the rest of your body with IgG antibodies if you're not IgA deficient  <_<

I don't think the medical field has figured out what to do with positive IgG results in a person that is not IgA deficient, so you've got to take it into your own hands.  I think future research will lead to more clarification, but you don't want to wait for that future research for your daughter to feel better.  The EGD will be able to rule out others things like reflux and ulcers, and please make sure they take at least 6 tissue samples from her small intestine.  In the end even if the biopsy is negative a gluten-free diet is the only true test.  Good luck!

ravenwoodglass Mentor
ravenwoodglass
Posted

It will take a little while, maybe a week or two for the biopsy results to get back to the doctor from the lab. Don't take your child gluten free until after the biopsies are done but since you have had your blood work done you can have her go gluten free after the test. You don't need to wait on the results.  Since there can be false negatives for many reasons with the biopsies she would need a gluten free trial no matter what the results are. You may even see some resolution of symptoms before the biopsies are back.

Also,did they test the total IGA? If the total IGA is low that can cause a false negative on the IGA test.  

mmcc54 Contributor
mmcc54
Posted
  • Author

It will take a little while, maybe a week or two for the biopsy results to get back to the doctor from the lab. Don't take your child gluten free until after the biopsies are done but since you have had your blood work done you can have her go gluten free after the test. You don't need to wait on the results.  Since there can be false negatives for many reasons with the biopsies she would need a gluten free trial no matter what the results are. You may even see some resolution of symptoms before the biopsies are back.

Also,did they test the total IGA? If the total IGA is low that can cause a false negative on the IGA test.  

Im not too sure if they did a total Ill go ahead and type what the results say...

 

Tiss Transglutam AB, IgG 16.1 (over 9 pos)

Tissuse transglutaminase IGA AB <1.2

 

Fat Qual, Stl Tissue transglutaminase IGG and IGA (see comments)

Comment says: Below find your daughters recent blood work results the main significant finding was that the tissue transglutaminase test was positive suggesting emma may have celiacs disease

greenbeanie Enthusiast
greenbeanie
Posted

An endoscopy can be used to check for other things too. If it is celiac, my understanding is that in some cases they can see the damage right during the endoscopy itself, though in most cases they can't see it until looking at the biopsy samples under a microscope. My daughter's GI told us in advance that he wouldn't expect to see any damage that day, especially in a young child. And he didn't, but her biopsy still clearly confirmed celiac.

In terms of getting the biopsy results, I imagine that varies a lot by facility. My daughter's GI came and talked to me briefly right after the procedure, basically just to say that it went fine and he was able to get all the samples he needed. He gave me a copy of the procedure report, which didn't say much except that the mucosa in all the different regions looked normal upon visual inspection. The actual pathology/biopsy report came in five days later, and the doctor himself called us with the positive results. We had already gone gluten-free immediately after the endoscopy (and were going to stick to it regardless of the biopsy results, with the doctor's blessing), and she was already improving by the time we got the final results.

Right before the procedure, the GI did mention that his hospital has a pathology review board that meets once a week so that a whole panel can discuss any pathology results that are unclear. I don't know if that's common or not. Anyhow, it was nice to know that if the biopsy had been inconclusive there still would have been a bunch of experts looking at the results before reaching a diagnosis.

momma bee Rookie
momma bee
Posted

I think he is not ruling it out yet or he wouldn't be doing the biopsy. Fantastic they can get it done so quickly! The scope itself can show other issues she is having if there are other issues so it is useful for more then celiac.

We were also told with our daughter being one year old the damage is less likely to be visual and after the scope the GI doc had thought it had looked fine, he said he might have noticed a "thickening" in one spot but it was very subjective. We were to call in after one week and get the results which us what we did. In our case we hadn't suspected celiac before the scope so when the scope was poaitive we went for blood after the scope and her blood all came back negative. So then they were perplexed as well but the scope showed many markers for celiac (there are several things they look for in the tissue to confirm diagnosis not just one). Then they sent us for the genetic tests to verify and they were positive for our daughter.

Our pediatrician has said that at this young of an age it is quite tricky to diagnose celiac and the paths to diagnosis will vary!

So i would anticipate they are still suspecting celiac and looking for it and you may also find they do the gene tests hla dq2 and dq 8 if my memory is right to confirm. And as you said, with her only eating 3 months now there may not be as much damage yet... Our GI was surprised there was given she had also only been "eating" a few months and I would say the term eating loosely as 95percent of the intake was bottles, we.could barely get her to eat food.

Hood luck with the scope Tuesday and hope it gives you a clear cut answer! Tough enough having a sick little one but so much harder not knowing why nor what to do!

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powerofpositivethinking Community Regular
powerofpositivethinking
Posted

for some reason I was under the impression that her total IgA was normal, but I would definitely find that out!  

 

my lab report for total IgA stated the following:

Immunoglobulin A, Qn, Serum 240 mg/dL    ref. range 91-414 mg/dL  so I do produce enough IgA antibodies for my results to be valid

 

From what you typed below, it looks like a total IgA was never run.  You might be able to call the doctor to see if they can call the lab to have that test run if the blood sample isn't too old.  Total IgA is important to know because maybe that's why she had a negative result, if so, then the previous post I made doesn't really apply to her  :P

 

good luck!

 

It will take a little while, maybe a week or two for the biopsy results to get back to the doctor from the lab. Don't take your child gluten free until after the biopsies are done but since you have had your blood work done you can have her go gluten free after the test. You don't need to wait on the results.  Since there can be false negatives for many reasons with the biopsies she would need a gluten free trial no matter what the results are. You may even see some resolution of symptoms before the biopsies are back.

Also,did they test the total IGA? If the total IGA is low that can cause a false negative on the IGA test.  

 

 

Im not too sure if they did a total Ill go ahead and type what the results say...

 

Tiss Transglutam AB, IgG 16.1 (over 9 pos)

Tissuse transglutaminase IGA AB <1.2

 

Fat Qual, Stl Tissue transglutaminase IGG and IGA (see comments)

Comment says: Below find your daughters recent blood work results the main significant finding was that the tissue transglutaminase test was positive suggesting emma may have celiacs disease

GottaSki Mentor
GottaSki
Posted

Im not too sure if they did a total Ill go ahead and type what the results say...

 

Tiss Transglutam AB, IgG 16.1 (over 9 pos)

Tissuse transglutaminase IGA AB <1.2

 

Fat Qual, Stl Tissue transglutaminase IGG and IGA (see comments)

Comment says: Below find your daughters recent blood work results the main significant finding was that the tissue transglutaminase test was positive suggesting emma may have celiacs disease

 

Welcome MMCC!

 

This is not a complete celiac antibody panel.  Request that they run a the rest of the panel while you are in for the endoscopy.

 

Total Serum IgA

DGP - both IgA and IgG

AGA - Older Gliadin tests - but are still run quite often -- the DGP is more important.

 

Also, nutrient testing can help indicated malabsorbtion and let you know if any supplementation is needed while your little one heals.

 

I agree with Ravenswood -- wait until the day of the endoscopy/biopsies to remove gluten -- and yes the younger of us usually heal very quickly, I would not be surprised if you see an improvement before the pathology report gets back to your doctor.

 

Oh -- do request a written or electronic copy of both the doctor's procedural report AND the pathology report and be sure to ask the doctor what he right after the procedure -- sometimes doctors will describe inflammation, etc...better in person right after they saw it.

 

Hang in there :)

nvsmom Community Regular
nvsmom
Posted

i believe, in your daughter's other lab work that you posted in another thread, there was an Iga and she was below normal in it... I think.  If that is the case, it makes her tTG IgG test that much more accurate.

 

Her doctor sounds like one  who likes a LOT of evidence before he diagnoses so he exaggerated the 50/50 cahnces. that's not right as far as I've seen. This journal article says the tTG IgG is is 98.6% specific to celiac.... that means she has a 1.4% chance of it not being celiac. With all her health problems, I would agree that an endoscopy is probably a good idea, but even if they miss biopsying the damaged intestinal areas (the small intestine is the size of a tennis court in an adult) she should probably go gluten-free because I doubt that tTG IgG test is wrong.

 

Good luck. I hope her biopsy is soon and she feels well as soon as ahe can go gluten-free. If the biopsy isn't for a while, you may need to be the squeaky wheel again.  (((hugs)))

mmcc54 Contributor
mmcc54
Posted
  • Author

Thank you so much everyone! This board has been so helpful to us! We really appreciate all of your answers! It makes this seem much less scary!

mmcc54 Contributor
mmcc54
Posted
  • Author

Hey so she had the biopsy yesterday!! Now waiting on results...and a call back from the dr she woke up covered in watery stool this morning...and shes been having them ever since :( her discharge paper work says vomiting is common but nothing about this..Im pretty concerned!

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