Full Celiac Disease Panel?

[TruePrep]

Hello, 

 

I finally decided to get screened for celiac disease after many years of suspecting I have a gluten intolerance or sensitivity. Over the last year I have become much more intuitive in my eating, and have scaled way back on gluten because of how I felt after eating it. Still, I did not strictly avoid it or completely eliminate it -- I simply didn't make it a staple in my diet.

 

But after finding out I have a family history of celiac disease, I decided it would be better to know for sure if I really need to fully eliminate it. If I'm simply sensitive or intolerant, I will keep on eating like I was, but if I have celiac disease I would not want to be unwittingly damaging my body. Since I wasn't consuming a ton of gluten, I decided to up the ante for the 2 weeks prior to my blood test and eat a bagel every morning and a sandwich or pasta every night. Well, after a week of this challenge I feel absolutely terrible: tired, bloated, foggy. I can't wait to go back to the "gluten-life" diet (or, gluten-free if necessary) I was consuming before I undertook this endeavor to be tested.

 

I saw my doctor today and she ordered "Celiac Disease Panel, Adult - Q15980" through Quest Labs and I am going on Monday for the blood draw. But a friend who has celiac told me to make sure they test all 47(?) markers, not just the 2 main markers? I am not sure what that means, but now I'm worried the doctor didn't order all the possible tests, and this screening process will drag on and on...

 

So my questions are:  

 

1. What tests specifically do I need to ask my doctor to order for a COMPLETE blood screen? 

 

2. How much gluten do I need to be consuming daily until testing is complete? I was not on a gluten-free diet, but it was sort of "gluten-lite" in that I did not consume gluten every single day or in large amounts. So for the last 2 weeks in preparation for the test I have been eating 4+ pieces of bread a day -- and feeling like hell  Is this much necessary? I don't know if I can keep it up until a possible endoscopy. 

 

3. Should I just schedule an appointment with a gastroenterologist now anyway? If I don't have celiac, I have some sort of gastrointestinal problem that is causing me symptoms, so I would need to see one anyway I would think and perhaps then it will speed up this testing process...

 

Thank you in advance to whoever has the time or expertise to answer any or all of my questions! This forum has been tremendously helpful during this often confusing and (sometimes terrifying) process

[cyclinglady]

Welcome!  

 

Here are the desired tests:  

 

tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA 

-total serum IgA and IgG (control test to ensure tests are not false negatives)

 

Oh, I tested positive on only one of the DGP's yet I had severe intestinal damage!  That's why it is important to take the complete panel!

 

 

-AGA IGA and AGA IgG - older and less reliable tests largely replaced by the DGP tests

 

 

-endoscopic biopsy - make sure at least 6 samples are taken as damage can be patchy

 

Here is a link to the University of Chicago's celiac website regarding gluten consumption prior to the blood tests:

 

Open Original Shared Link

 

It sounds like you were pretty gluten light.  Not sure how it will impact your blood tests.  

 

Go ahead and get a GI referral.  Keep eating gluten until all testing is complete.  Talk to your doctor if you can not withstand a gluten challenge.  Your other option is to go gluten free, but the best case is of course, is to get a firm diagnosis.

 

I wish you well....

[squirmingitch]

I Googled Quest Labs Celiac Disease Panel, Adult - Q15980 and came up with these two links. BTW, when I entered the test # Q15980 on their search bar it came up "not found".

Open Original Shared Link

 

Open Original Shared Link

 

I can't imagine what 47 markers your friend is talking about.

[TruePrep]

Thank you very much for the testing info cyclinglady! I sent a message to my doctor requesting all of those specific tests you listed, so we will see what she comes back with... I really don't want to drag this testing process out any further than I need to, so I'm really hoping she orders them all on the first go. I am still a little worried about my previous low-gluten diet and whether 2 weeks of massive gluten consumption is enough for the blood tests, but I am going to hope that it is. If they come back negative I want to see a gastroenterologist anyway to try to get to the root of my intestinal issues, so perhaps I'd have an endoscopy anyway... Two weeks of gluten consumption is sufficient to see intestinal changes if you have celiac, correct? squirmingitch, I think my friend must have been referring to testing for all 3 antibodies and the different panels they can run, as opposed to just the one main one many doctors do! I have a PPO and don't need a referral to see a gastro so I'm thinking of initiating that appointment now so I can get this gluten challenge over with already...  

[jbeilfuss]

For what it's worth, before my blood test, I quit eating gluten for close to two weeks because I had some days in there where I felt horrible. In spite of that, two tests came back positive (ttg iga and dgp IGA). I also went to my GI doc and shared my blood test results and I am on the gluten challenge preparing for an endoscopy now three weeks away (thank heavens - I have been doing it for six weeks already). He wanted me to do that since had stopped eating gluten at the time of the blood test.

Some members of this forum told me to eat my gluten at night so I can be asleep for part of the time it's making its way through my body. That has definitely helped. I have had some pretty bad days doing this, but am sticking it out in the hope of getting a real diagnosis.

Good luck to you as you go through this!

[TruePrep]

Thanks jbeilfuss, I appreciate the encouragement... I've decided to just continue with this challenge until my blood test and then maybe take a break. I read that you only need to be consuming gluten for 2 weeks before an endoscopy, so depending on whether that's necessary or how long it will take to get one, at least I will have a little reprieve... I feel really sad that I don't feel like myself (so tired and bloated) but I am also really curious about the blood tests and I'm halfway there so I will just try to power though. It's strange, but I'm almost hoping it's positive because it would explain so much! But I have learned really quickly through this process that celiac disease or not, gluten is certainly not good fuel for this body. Man, thank god for this board--although I am definitely spending an inordinate amount of time here lol 

[TruePrep]

Well, my doctor got back to me regarding the specific blood tests I wanted to have run... she said she ran a celiac panel, which includes all the major ones and it's pretty thorough. If it were to come back negative and we still have a very high suspicion for it she said she will send me to a gastroenterologist for further evaluation. So to me it sounds like she ran the standard test which only includes tTG IgA and iTG IgG and total serum IgA and IgG... *sigh* I was really hoping to get the other ones included on this first go because I have no intention of continuing with this gluten challenge, because I feel terrible. So I guess I will just have to see what the initial tests come back as and take it from there...  

[jbeilfuss]

Bummer - wish the doctor was more thorough on the blood testing for you! At any rate, you can't ignore what your body is telling you and after you power through this, if you're like me, gluten won't be consumed going forward. I feel so much better without it and thankfully there are plenty of gluten free choices these days.

[cyclinglady]

Wait for the test results. If negative, ask for the other tests on the celiac panel. Keep eating gluten though and ask for the GI appointment/referral. That doctor can reorder the panel (all or a portion). Again, if you go this route, keep eating gluten!

Or you can go gluten free now and forget about a formal diagnosis.

I wish you well!

[TruePrep]

Thanks cyclinglady... How much gluten do I need to be consuming roughly? Right now I'm eating the equivalent of 4+ slices of bread a day, and I'm miserable. All I want to do is go back to my low gluten diet the minute I have this blood draw. But then if I need additional tests I'll be back to square one... It's really just so frustrating as I'm sure many of you know. I do really feel like I want a diagnosis either way though, so perhaps I will continue but with less gluten. I wonder if 2 slices of bread a day would suffice?? Thanks for everyone's input, I know you've probably heard all these questions and complaints a million times! 

[LauraTX]

Open Original Shared Link 

 

The University Of Chicago Celiac Center recommends a half slice of bread per day for 12 weeks before blood tests.  So you can definitely cut down from those 4 slices.

[TruePrep]

Thanks Laura... I had been on a pretty low gluten diet previously which is why I did a pretty gluten-heavy challenge. But perhaps I can just drop down to the UC's recommendations now, especially since this may continue for a bit longer!

[TruePrep]

Well, I go for my initial blood tests tomorrow morning... Should I eat a bagel right before the blood draw?? JK

 

Once I take the blood test tomorrow I am going to cool it with this high-gluten diet, because I feel so bloated, tired, and "puffy" 

 

But I am going to continue consuming one slice of bread a day in the event I need more thorough blood testing and/or an endoscopy. Hopefully that will be enough gluten, and not have me feeling like such a miserable whale lol Then if I ever get an endoscopy scheduled perhaps I will up the ante again for a few weeks prior...

 

I am so anxious to get the results back, but I'm sure it will take longer than I expect... As soon as the results come in I will post them here. I am so grateful to everyone who chimed in on this thread with advice, support, and information! I really feel for how hard this screening process is now that I'm in it