Type1CDE

Sorry for the typos! My fingers are too big for the iPhone keyboard /:

Just last night since being gluten-free for a couple of weeks, I was telling DH how much better I feel!! Today I got some beef jerky but they were out of my regular kind do I bought teriyaki not even thinking about it... Sure enough after I ate half of the bag it occurred to me that I hadn't checked the ingredients and there it was(from the soy sauce) I wanted to kick myself! I read up online a but and picked up some digestive enzymes so am taking those... Anything else (aside from Drinking lots of water) I should do? I just don't want to feel crappy all weekend ):

Yikes! I will be watching this closely b/c I want my sons tested too... Sorry I don't know of any for you.

I second the idiot doc comment (: mine was clear that it is very specific to celiac and that it wouldn't be caused by anything else...

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!

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....

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

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 ):

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- 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 feel so much the same!! I am definitely mourning the change....

Not to hijack the thread but skylark you seem so knowledgable about the labs... Why would my DGP-IGA be over 100 but my DGP-IGG be negative (16)? Any ideas?

Well the IgA test I had (ttg)was negative but the DGP-IgA was positive at >100. Just got my IgG results back- both negative with the ttg <3 and the DGP-IgG at 16. I am so confused! Still waiting on the EMA-IgA results...

Thoughts???? Please explain these to me! Thanks in advance!

Cari

Total IgA being high probably doesn't mean Celiac....but I am not well versed on the differences between kids/ adults IgA... Mine was only 106 which according to the reference range from the lab was "normal" but most info out there says the average adult is around 200.... So my pcp dis some more labs (my ttg-iga was begative but my deamidated gliadin -IgA wa over 100 so very positive)

While lookinf for my own answers, I found this chart in the reference ranges for kids:

Table. IgA Reference Ranges in Children and Adults

Age mg/dL

Cord blood 1-3

1 mo 2-43

2-5 mo 3-66

6-9 mo 7-66

10-12 mo 12-75

1-3 y 24-121

4-6 y 33-235

7-9 y 41-368

10-11 y 64-246

12-13 y 70-432

14-15 y 57-300

≥16 y 81-463

I just got mine back and had the same high lab as you- mine was >100. /: I am assuming from what I've been reading that it is some sort of immune response to gluten...just not sure of the nature (celiac disease or not). I requested some more tests and my NP obliged so I had the IgG labs drawn today...my total IgA was only 106- "normal" by the labs but compared to average adults it is low so I thought I'd better get the IgG labs too...thanks in part to the other members who suggested that (:

I guess I am of no real help b/c I am still trying to figure out exactly what it means too...(; Nice to know you aren't along though, huh? Do you have a follow up appt soon?

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

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!):

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!

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

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 ....

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