Making Sense Of Labs...

[Type1CDE]

OK- I am brand spankin' new to the site. My name is Cari, I am 36 years old- Diagnosed with Type 1 DM 20 years ago! Also have autoimmune hypothyroidism. I am a RN and also a CDE (though not working in nursing at the time- I also have a photography business and am doing that full time now). I have 2 sons- youngest is on the spectrum (dx'd ASD- Asperger's type last Sept). Anyway, here I am after about every symptom of celiac disease and about every risk factor too (: Got my labs drawn a week ago Monday (by my PCP) and my results are as follows:

TTG Antibody, IGA: <3 (in range)

Immunoglobulin A: 106 (in range)

Gliadin (Deamidated)

AB (IGA): >100 (high)

So my endo says the TTG is the best test and then I read that the DGP- IGA (assuming it is the same as the test that came back high)is more accurate....

I am so confused! My PCP is also perplexed and is researching it a bit before I come in next week but meanwhile my youngest son is also getting tested on Friday...so I kind of want to go in with more of an understanding of these labs. Am I crazy or does my total IGA seem low? It says "in range" but from what I read most adults have a mean total IGA of around 200...so even though I fall

in range" to me the 106 seems relatively low? Everything I read about total/selective IGA deficiency says no....unless I haven't come across the right info.

Is it always so frustrating to figure this out? is my high result even "that high" compared to the usual new Celiac Disease "patient" numbers? Just looking for some support and perhaps for someone who has walked this walk to shed some light on it....never thought I'd be so interested in "immunology". (: On my lab sheet it does say that Patients with early celiac disease with subtle histopathologic change, that the Gliadin IGA (my high value) is a sensitive marker.

Wondering if anyone here that was Dx'd with celiac disease had labs similar to mine?

Thanks in advance, if you made it through my book (:

Cari/TYPE1CDE

[ravenwoodglass]

Welcome to the board. The DGP is the newest, most sensitive and most specific of the celiac tests from what I understand. Your reading was very high and that leaves no doubt about your need to be gluten free. Read as much as you can here and ask any other questions you need to. If you are going to have an endo stay on gluten until that is done. Then the day of the procedure go gluten free. You need the diet no matter what the results of the endo are.

[Type1CDE]

That's what is so confusing.... I have had an endo for the diabetes since I was 16(not the same one as I have moved a few times)....my endo seemed to think if my ttg wasn't off I didn't have to worry about it.... I wish I could speak with an immunologist or maybe a gastro doc? I know I am going in next week but I am sure you know the joys of anticipation (: thanks for your reply.... I also think a gluten-free diet will be the ultimate end to this for me...whether celiac disease or non-celiac disease gluten intolerance is the final dx... I just hope they hurry up and figure it out so I can go gluten-free & start feeling better..... Interestingly enough, I had been soooo sick for about 2 weeks prior to the blood tests and hadn't eaten much at all ( I had influenza) so it would be interesting to see what my labs look like since being back on a regular diet for a couple of weeks ....

[Type1CDE]

Lol! There I go stuck in my DM box! Just clicked that you meant endoscopy (: sorry!!! Guess I have "gluten brain"

[Skylark]

Hi and welcome to the site. Also welcome to the confusing world of celiac diagnosis!

Latest thinking is that DGP precedes the appearance of TTG. DGP-IgA isn't as specific as DGP-IgG but it's still a pretty good celiac marker. Why didn't they run DGP-IgG? If I had your labs I'd be asking for DGP-IgG and if that was positive I'd assume celiac. Otherwise I'd ask for a referral to a GI to get an endoscopy with biopsies. Good luck!

[Type1CDE]

Thanks! I have been combing through the posts and I do intend on having that lab added on...Hoping my doc will call it in so I can have the results when I go there next week (:

Thanks for the advice!

[Vintage River]

I am in the same position as you--so confused by the recommended testing and blood work! I am self-insured and try to keep costs low, so I recently went to a walk-in lab to have the panel run, as I have most of the symptoms, and every female member of my family has been diagnosed with a different autoimmune disease. After getting the tests back today, I was confused, as they did not run a total IgA serum, which I've read is helpful in ruling out IgA deficiencies. I was wondering if the Immunoglobulin A mentioned referred to in your labs above is the technical term for this total serum? I realize that I should find a doctor that could help me navigate this process; however, I've been to two already, and they simply wanted to treat the symptoms, not find the cause for critically low iron, tingly legs, and a host of other problems. I hope that we both find success in navigating this process!

Here are my lab results in case they are relevant. I requested a Celiac panel, but I'm wondering if this panel is insufficient?

Reticulin IgA Autoabs: Negative

Endomysial IgA Autoabs: Negative

Gliadin IgG Abs: <3

Gliadin IgA Abs: <3

[Type1CDE]

Yes immunoglobulin A is the total and what I read is that they include it in the testing for iga subtypes....they didn't do the TTg for you either? Wondering if you have the lab sheet or did you just get the results over the phone? The nurse who gave me the results over the phone didn't mention the total IgA to me.... But I requested a lab sheet and saw that one myself.....I don't know if they save a microscopic "screen shot" of the labs if the test is a different prep for the IgG but I am calling to see if they can add those labs today... Good luck! I feel for you! Feeling cruddy is no picnic and so frustrating!):

[Skylark]

Here are my lab results in case they are relevant. I requested a Celiac panel, but I'm wondering if this panel is insufficient?

Reticulin IgA Autoabs: Negative

Endomysial IgA Autoabs: Negative

Gliadin IgG Abs: <3

Gliadin IgA Abs: <3

You need to find out whether this is the old anti-gliadin test, which is notoriously lacking in sensitivity, or the new deamidated gliadin peptide. It's odd that they didn't run TTG but Endomysial has pretty similar sensitivity.

[Vintage River]

Thank you both for responding regarding my lab work! I did receive a print copy of the results, which reads directly as I had entered it above. The lab work was processed by Quest diagnostics, should I contact them regarding their process to see if it is the old anti-gliadin test or the new deamidated gliadin peptide? I was concerned that they did not do a total serum, as I've heard that can lead to a false negative. I had posted a rather lengthy explanation of my symptoms and family history on the board under "So Many Symptoms, Unsure About Tests" and am hoping to get more advice as to how to proceed. Perhaps I should simply take the plunge and go gluten free. I was hoping to have concrete evidence, so that I could convince other family members suffering with similar symptoms to do the same!

[Type1CDE]

My labs were by Quest as well and it stated demidated gliadin AB-IgA right on the sheet../

[Skylark]

Thank you both for responding regarding my lab work! I did receive a print copy of the results, which reads directly as I had entered it above. The lab work was processed by Quest diagnostics, should I contact them regarding their process to see if it is the old anti-gliadin test or the new deamidated gliadin peptide? I was concerned that they did not do a total serum, as I've heard that can lead to a false negative. I had posted a rather lengthy explanation of my symptoms and family history on the board under "So Many Symptoms, Unsure About Tests" and am hoping to get more advice as to how to proceed. Perhaps I should simply take the plunge and go gluten free. I was hoping to have concrete evidence, so that I could convince other family members suffering with similar symptoms to do the same!

I would call them and ask. I agree that total IgA would have been nice because it's hard to interpret anti-EMA without.

[Type1CDE]

Skylark- Now I see these but for some reason didn't get any alerts that I had replies ):

Anyway my original labs:

TTG Antibody, IGA: <3 (in range)

Immunoglobulin A: 106 (but much lower than average adult numbers- just not low enough to be deficient)

DGP-IGA: >100 (high)

Newer Labs- EMA-IGA- Negative

TTG-IGG <3 (<7 normal)

DGP-IGG 16 (<20 is "normal")

So the only lab I have that was abnormal was the DGP-IGA. And it was really high! The nurse from my PCP's office called to tell me these results and then said "so do you still want to keep your appointment this week since these were negative?" Uh...yes! I am seeing my PCP tomorrow but fear that she will be just as confused as I am...Just wanting to make sure it is indeed celiac and I don't want an endo...I have no problem going gluten-free if I need to just want to make sure there isn't something else that could cause such an elevated DGP-IGA?

Maybe I am slightly in denial? )"

[Type1CDE]

Also I went thru and re-read the whole thread... Somehow I didn't read some of the responses as thoroughly as I should have! Sorry for the reposts.... I am definitely in denial a bit... ): 3 autoimmune diseases now and a kid in the spectrum...oy! What is next!? ):

[Skylark]

I'm confused too. Sometimes people have only DGP-IgA and no damage on biopsy. I haven't seen any studies to explain it.

In celiac, gluten gets processed by TTG to make DGP. Your immune system recognizing DGP is thought to be the first step in developing celiac disease. Thing that's confusing is that most of the studies are focusing on DGP-IgG. I still don't see what could case any sort of DGP reaction other than celiac or latent celiac. It certainly wouldn't be another autoimmune disease. In non-celiac gluten intolerance current thinking is that DGP is not formed at all, but it's hardly a well understood condition.

Hope that helps.

[Type1CDE]

It sure does! Thanks (: I am thinking that my low-ish total IGA could be the reason for the negative ttg-IGA... ? I would like to see emanuel immunologist perhaps to explain exactly what is going in my body... I can't think of anything else it could be ( and I have googled til my fingers hurt-lol) and I just want confirmation.... If it is early stages of celiac wodbt a biopsy be negative anyway? I am feeling pretty depressed about it... Just overwhelmed... At first I was hoping it was positive so I wod have an answer to my feeling so yucky...now I wish the other way ):

[Type1CDE]

Ps... Crazy autocorrect! Lol Emmanuel immunologist was supposed to say an immunologist...

[Skylark]

I had the same thought about low total IgA and negative TTG. The DGP-IgA is something like 85% specific, meaning you have about an 85% chance of having a positive biopsy. It's just not 98% like DGP-IgG or EMA so you don't know for sure what's going on from the bloodwork.

[Type1CDE]

Oh I see... That's if they happen to get a spot from the biopsy that is affected by celiac disease right? (: from what I read it is patchy? Interestingly last night I had to work a fundraiser at school where we were rolling dough out and using flour too and my hands flared up (red knuckles and itching). also I started coughing a lot... I told my Mom who reminded me that when I was a teenager & worked at a pizza place, while making dough I would have the same reaction! Spuds like some allergic process... I am thinking that I will have my PCP refer me to a specialist today....

[ravenwoodglass]

Skylark- Now I see these but for some reason didn't get any alerts that I had replies ):

Anyway my original labs:

TTG Antibody, IGA: <3 (in range)

Immunoglobulin A: 106 (but much lower than average adult numbers- just not low enough to be deficient)

DGP-IGA: >100 (high)

Newer Labs- EMA-IGA- Negative

TTG-IGG <3 (<7 normal)

DGP-IGG 16 (<20 is "normal")

So the only lab I have that was abnormal was the DGP-IGA. And it was really high! The nurse from my PCP's office called to tell me these results and then said "so do you still want to keep your appointment this week since these were negative?" Uh...yes! I am seeing my PCP tomorrow but fear that she will be just as confused as I am...Just wanting to make sure it is indeed celiac and I don't want an endo...I have no problem going gluten-free if I need to just want to make sure there isn't something else that could cause such an elevated DGP-IGA?

Maybe I am slightly in denial? )"

I would be interested to know what the total IGG was. Your high IGA is a significant finding especially since your total IGA was pretty low.

Do give the diet a good strict go for at least a couple months when you are done with testing.

[pain*in*my*gut]

Oh I see... That's if they happen to get a spot from the biopsy that is affected by celiac disease right? (: from what I read it is patchy? Interestingly last night I had to work a fundraiser at school where we were rolling dough out and using flour too and my hands flared up (red knuckles and itching). also I started coughing a lot... I told my Mom who reminded me that when I was a teenager & worked at a pizza place, while making dough I would have the same reaction! Spuds like some allergic process... I am thinking that I will have my PCP refer me to a specialist today....

I has similar blood test results as you....high DGP IgA (89) and neg TTg. My gastro doc did a biopsy and it was negative, and he proclaimed me healed (even though I was still sick). I went to my rheumatologist and he took one look at the DGP and said "this is Celiac" and that biopsies should be outlawed because of how flawed they are for dx Celiac. He then ran a bunch of tests and I also have Hashimotos, sjogren's and RA. You know what they say about autoimmune diseases come in pairs or clusters.....I am a poster child for that statement!!

Get to a rheumatologist! In my case, he knows more about Celiac than any of my other docs. It is an autoimmune disease, after all!

[Type1CDE]

Thanks for the replies! I saw my PCP this morning who referred me on to my regular endocrinologist.... PCP thinks early celiac as well... she says since I don't want a biopsy ( for exactly the same reasons you listed) that the eat thing now is to go gluten-free and see if my symptoms improve....she even checked all of my meds to make sure there weren't any with hidden gluten..... So here I go!

[Skylark]

Good luck!