Bloodwork Results, Input Please?

[KenzMom]

So I had my now 18 month old daughter tested for celiac disease because she has a wide array of symptoms--right down to slow in growth. Many of you may have seen my previous posts. I have type 1 diabetes, my brother has type 1 diabetes, my grandmother has psoriasis and she has questioned whether or not she has celiac disease...so I thought she needed to be tested for celiac disease. After bloodwork and biopsy, we went gluten free and she has done SO MUCH BETTER.

 

Anyways, I got her bloodwork back and it is impressively negative.***How do I post a picture of her labs on here?***

I do not have biopsy notes, but I was told there wasn't any damage indicating celiac. They did tell me she has inflammation in her esophagus (I can't remember what they called it) and she has yeast overgrowth in her esophagus (unknown cause). She has also had microscopic blood in her stool and bacterial imbalance in her stool sample. She has been on Florajen Kids for a few weeks now and she will have to take diflucan for the yeast. Any thoughts on what could be going on? Any similar experiences? 

[nvsmom]

You can post pictures using a photo sharing site like photobucket, or just type in her results with the normal range beside it (in parenthesis).  If you post her results we may be able to comment.

 

You might want to consider getting a biopsy report.  A negative result, without any increased intraepithelial lymphocytes in 6 or more samples, is quite a different negative than 2 samples biopsied with marsh 1 level damage .... Both are considered negative but one could be a false negative or early celiac disease.

[KenzMom]

Ok here are her results-- they look very negative to me-- again my daughter is 18 months old. I am going to call and try to get that biopsy report tomorrow.

 

Endomysial AB: Neg

Gliadin IGG AB: 2 (0-19)

Gliadin IGA ABS: 1 (0-19)

TTG IGA: 2 (0-3)

TTG IGG: 2 (0-5)

IGA, IMMUNOGLOBULI: 21 (20-101)

[nvsmom]

Those do look negative.  There are a few things to consider though:

1. She was given the older gliadin Ab tests (AGA IgA and AGA IGG) which are not very reliable tests; the AGA IgG can miss as many as 83% of all celiacs!  See page 12 of this report for the AGA test sensitivities: Open Original Shared Link Those aren't great tests.
2. The deaminated glaidin antibodies tests (DGP IgA and DGP IGG) were not given.  These are newer tests that replaced the AGA tests.  They are the best ones for detecting celiac disease in the young, or early celiac disease.  You might want to get them done.
3. Her total serum IgA was borderline low.  That test is given to make sure her IgA levels are not deficient (as it is in 1 in 20 celiacs).  Low IgA will cause false negative in all IgA based celiac tests (ttG IgA, DGP IgA, AGA IgA, EMA IgA), so those people will need to rely on IgG based tests and the endoscopy for a diagnosis.  Her IgA was 21, and that is awfully close to the 19 that would declare those tests invalid. I imagine her low IgA could affect her IgA based celiac tests somewhat.

She was eating gluten in the 2 to 3 months prior to testing, right?

 

Hang in there, Mom.  Hug.

[KenzMom]

Those do look negative.  There are a few things to consider though:

1. She was given the older gliadin Ab tests (AGA IgA and AGA IGG) which are not very reliable tests; the AGA IgG can miss as many as 83% of all celiacs!  See page 12 of this report for the AGA test sensitivities: Open Original Shared Link Those aren't great tests.
2. The deaminated glaidin antibodies tests (DGP IgA and DGP IGG) were not given.  These are newer tests that replaced the AGA tests.  They are the best ones for detecting celiac disease in the young, or early celiac disease.  You might want to get them done.
3. Her total serum IgA was borderline low.  That test is given to make sure her IgA levels are not deficient (as it is in 1 in 20 celiacs).  Low IgA will cause false negative in all IgA based celiac tests (ttG IgA, DGP IgA, AGA IgA, EMA IgA), so those people will need to rely on IgG based tests and the endoscopy for a diagnosis.  Her IgA was 21, and that is awfully close to the 19 that would declare those tests invalid. I imagine her low IgA could affect her IgA based celiac tests somewhat.

She was eating gluten in the 2 to 3 months prior to testing, right?

 

Hang in there, Mom.  Hug.

I must say...you are a genius and a gift when it comes to helping others with this stuff! Thank you!

I thought her results looked different than the ones you and others have suggested- so needless to say I am very bummed they ran older, unreliable tests.

I wrote the results out late and noticed that her TTG IGA is <2 (0-3) and her TTG !GG is <2 (0-3). And yes her IGA Immunoglobuli is 21 with 20 at the bottom of the ref range.

 

I will call for the biopsy report today and post that, too. Yes, i have never taken her off of gluten until now. Today will be her 7th day gluten free. Does anyone know if insurance will cover it to have the newer celiac tests run again?

 

I checked her blood sugar twice yesterday (trying to figure out the cause of the candida/yeast overgrowth she has). She seems to have pretty normal blood sugars. She sees the allergist on Friday. If it turns out she is allergic to wheat, is it still possible she could also have celiac? Thank you for listening and helping!

[Brit1612]

Was anxious for you to get the results back.  It is great that you had negative results, but I feel bad that you are now in the same boat we are in.....

 

I feel like I am reading our story each time you post!  My son's IGA at 18 months was a 19 and I was told that it invalidated the IGA based test.  A few months later his IGA was a 9 and just last week (at 28 months) he is an 11.  So he is clearly low in IGA even though he was right around the borderline at 18 months.  Also, my GI said that he should have been around a 24 or higher at that point.  (I guess that is just perspective for each doctor).

 

If you feel the need to get more testing or a second opinion, I would recommend going right back to gluten immediately.  That way you could get any additional testing done, and not have to worry about doing a gluten challenge later down the line.  We did exactly what you have done (made him gluten free immediatly after biopsy), and ended up deciding we want more testing and a second opinion, and had to re-introduce gluten for a few months.  Now.....we are having to start over going gluten free which is seeming harder the second time around.  Just thought I would share !

[Gemini]

I must say...you are a genius and a gift when it comes to helping others with this stuff! Thank you!

I thought her results looked different than the ones you and others have suggested- so needless to say I am very bummed they ran older, unreliable tests.

I wrote the results out late and noticed that her TTG IGA is <2 (0-3) and her TTG !GG is <2 (0-3). And yes her IGA Immunoglobuli is 21 with 20 at the bottom of the ref range.

 

I will call for the biopsy report today and post that, too. Yes, i have never taken her off of gluten until now. Today will be her 7th day gluten free. Does anyone know if insurance will cover it to have the newer celiac tests run again?

 

I checked her blood sugar twice yesterday (trying to figure out the cause of the candida/yeast overgrowth she has). She seems to have pretty normal blood sugars. She sees the allergist on Friday. If it turns out she is allergic to wheat, is it still possible she could also have celiac? Thank you for listening and helping!

You would be correct in saying that Nicole is a genius!  She is sometimes referred to as Dr. Nicole....with good reason.  She's a smart cookie!

 

Having said that......I would not actually say that the AGA testing is unreliable.  BUT...the DGP is newer and more sensitive and when you are trying to test a little girl of 18 months, it does make a difference.  Actually, when I have my re-testing done to check antibodies, they run both the AGA and DGP tests, which I think is about as complete as it gets.  I was 46 when diagnosed and my GI tract was totally trashed so I really tripped the AGA tests, big time.  The DGP was not available 10 years ago.

 

I think with a Total IgA count of 21, the blood work may not be reliable for her anyway.  That is almost off the scale low.

 

I also had a major candida problem years ago and it can happen when gut bacteria are out of whack.  They cannot keep the candida in check if the soldiers are absent!  I think the underlying cause for me was undiagnosed Celiac.  You can also have a candida problem with no blood sugar issues.  I have never had blood sugar issues.  I know docs think only diabetics and those with really compromised immune systems develop candida problems but that just isn't so.  I would recommend that you try and avoid feeding her sugary food or drinks as that will just feed the problem.  Yes, easier said than done. 

 

You can be allergic to wheat and have Celiac Disease.  I think you need to do a strict gluten free trial because it sounds to me like your daughter may be a Celiac.  That should give you definitive answers that testing cannot, at this point.  Skin rashes, bacterial imbalance, candida...these are hallmarks of a food issue.  It won't hurt her to eat gluten free, as you know, because you are doing it.  Easier to train kids on what they can and cannot eat at this age.  You'll get this figured out, don't worry!

[KenzMom]

So here is my question (because I am having a bit of trouble understanding the correlation): If my daughter continues to have a low Total IgA count then will the DGP tests be unreliable too? What would be reliable at that point, just a positive biopsy? If I ask for them to re-check her, I want to be armed with information.

[Brit1612]

Any of the test that have iga after them would be unreliable.  For example the ttg iga, or the dgp iga would be unreliable.  The test with an igg after them could be trusted; for example.....ttg igg or dgp igg.  Although the doctors seem to trust the iga test more, in our case anyway.  We had a positive ttg igg twice and were told it could have been caused by something else, and ironically it has been negative the last two times we have repeated testing.  Hope this helps.  

[Gemini]

When you have a low total IgA, then all IgA based blood testing will be unreliable because your body is not making enough antibody to test accurately for.  I think that is why they throw in the IgG based testing also but that is more body wide, whereas the IgA antibody is GI tract specific.  It is produced in the mucosal lining of the intestines. It is not uncommon for people to be IgA deficient and nothing to worry about....from what I have read.  But it makes testing for Celiac more complicated.

 

The only other way to obtain a proper diagnosis from most GI's would be the biopsy.  However, in children that young..........you know the story.  It can takes years for enough damage to develop to find and feeding your kid gluten when they should be gluten free can be so detrimental to their health. 

 

You know....my brother is a Type 1 and I would bet a month's pay that he has Celiac also.  His health is crap.....he is 60 years old and has had a number of stents put in his heart for blockages and his kidneys are almost at the point where he is going to start dialysis.  I doubt he will live to be 70.  I was reading your family history and both you and your brother could have it also, with your family history you gave here. All of your family's health issues can be connected to Celiac and I know it takes a big leap in faith to understand how important finding out if you have it is.  Doctors seem to really drag their heels when it comes to kids and Celiac.  They err on the side of caution but that can be a killer for some.  All because they think the gluten-free diet is too hard to follow if you don't have to.  Horse pucky.  Just something to think about.....

 

Excuse me if you have already addressed this but have any of you been gene tested for Celiac?  That would be another option to investigate.

 

Open Original Shared Link  Take a look at this page on genetics and see for yourself the close association, genetically, between Celiac and Type 1...and other autoimmune diseases.  It does not mean you have that disease but it pushes up your chances of triggering for them.  I view these as clues to ones health and figuring things out when doctors aren't much help.

[KenzMom]

Gemini- I have been tested for celiac in the past-- neg-- I have never been tested for the gene however. 

 

I got the biopsy report. They did not assign a "marsh" like i was expecting. But here is a rundown of what I received: 

 

1. Secondary Portion duodenum: neg for evidence of celiac sprue or infectious organisms

2. Duodenal bulb: neg for evidence of celiac sprue or infectious organisms

3. Gastric antrum: mild chronic inflammation including a component of eosinophils, and changes consistent with reactive gastrophy. Neg for H pylori

4. Distal esophagus: Fungal yeast and pseudohyphal organisms present in a background of squamous mucosa; findings consisten with esophogeal candidas

5. Sigmoid colon: neg for evidence of celiac sprue or infectious organisms

6. Rectum: Neg for evidence of active, chronic or microscopic colitis. Neg for eosinophils. 

[Brit1612]

Did you get my message reply?  Just making sure it went through since it was so long!  I meant to ask you if she had the gene test done?  If you did that and it was negative, it could at-least let you know it was much less likely.....  We had the gene test and he has both of the main indicators.

[KenzMom]

Brit1612-

 

Yes I got your message! Thank you! Hectic weekend so I haven't logged in until now. 

 

I'm not exactly sure where to go from here...we went to the allergist and my daughter had almost NO reaction to anything. According to the tests, she has no food allergies at all! So far she tested NOT lactose intolerant and NOT allergic to milk, and yet she can't digest milk properly. Cutting gluten out seems to help but she is also taking Diflucan for a yeast infection in her esophagus and it upsets her tummy some so it is hard to tell right now. 

 

She has eosinophils (white blood cells) in her stomach, which now we know is not likely caused by a food allergy...not ruling out Celiac yet as a potential cause or contributor to her issues, but it could be something else. 

[StephanieL]

Have they scoped her for EOE? I do believe dairy is often an EOE trigger.

Allergy testing when there isn't a clear "OMG it's an allergic reaction" isn't recommended.  Basically if you don't see hives, breathing issues or immediate (within 2 hours of ingestion) reaction, an allergy test isn't going to be helpful.  

[KenzMom]

Have they scoped her for EOE? I do believe dairy is often an EOE trigger.

Allergy testing when there isn't a clear "OMG it's an allergic reaction" isn't recommended.  Basically if you don't see hives, breathing issues or immediate (within 2 hours of ingestion) reaction, an allergy test isn't going to be helpful.  

They did the scope and reported eosinophils in her stomach (but not in her esophagus--i posted her biopsy report earlier). They mentioned trying a "patch test" for a delayed allergic reaction. But she was so impressively negative (I mean her skin didn't react at all!) and the allergist told me that the patch testing would just be another shot in the dark...

[StephanieL]

So they did look at her esophagus as well, not just stomach?  You're report doesn't mention anything about anything but the lower end so perhaps they weren't checking the upper?

And patch testing is a long shot and something Dr's do as a last ditch effort. They jury is still out on if it's even helpful so I'm not surprised that they don't see it as something to look further into.

[KenzMom]

So they did look at her esophagus as well, not just stomach?  You're report doesn't mention anything about anything but the lower end so perhaps they weren't checking the upper?

And patch testing is a long shot and something Dr's do as a last ditch effort. They jury is still out on if it's even helpful so I'm not surprised that they don't see it as something to look further into.

Yes, here is the report. It had a diagram that coincided with the numbers. 3- the gastric antrum is in the stomach area and 4. the distal esophagus was the middle to lower esophagus. 

 

1. Secondary Portion duodenum: neg for evidence of celiac sprue or infectious organisms

2. Duodenal bulb: neg for evidence of celiac sprue or infectious organisms

3. Gastric antrum: mild chronic inflammation including a component of eosinophils, and changes consistent with reactive gastrophy. Neg for H pylori

4. Distal esophagus: Fungal yeast and pseudohyphal organisms present in a background of squamous mucosa; findings consisten with esophogeal candidas

5. Sigmoid colon: neg for evidence of celiac sprue or infectious organisms

6. Rectum: Neg for evidence of active, chronic or microscopic colitis. Neg for eosinophils