New. Tired and Overwhelmed.

[workingk9]

3 hours ago, Jmg said:

One potential source of confusion here. I believe that Cyrex do both stool and blood tests:

Open Original Shared Link This is their wheat gluten one:

I think I've read or heard similar discussions to you Carey about them, where people are saying they're more comprehensive. I've no idea whether that's true or if the 'additional' tests have any clinical value. I know when I was stressing after testing negative on the UK's more limited test I considered sending a sample to them but in the end I had a (negative) biopsy in any case based on symptoms.

I think GfinDC has said it perfectly.  I recognise some of those symptoms from my own experince, as soon as you've had your blood test result, I would start a food diary and then go gluten free for a few weeks and see what happens. If you're like me you'll never go back to it, because no wheat gluten product tastes as good as how feeling healthier feels (to paraphrase Kate Moss :P)  But do make sure you've had that test result first in case the Dr's change their minds about the endoscopy based on its results. 

All the best,  I hope you find the answers and relief you need!

 

That was the test! The Array thing. I'm going back to my regular doctor for my monthly b12 so I'm going to request he run the celiac panel again and will hopefully have the results by the end of the week and then I'll go gluten-free no matter the results to see if I feel any better. Like you (and Kate Moss!) said-- I'd MUCH rather feel better than eat gluten!

 

Carey

[workingk9]

2 hours ago, Jmg said:

I meant that Carey should wait for the result, not just the test and if negative (and the doc is apparently opposed to endo) then go gluten-free. However you're right I phrased it badly!

Good points. I'm definitely holding off until after testing, but I am preparing my kitchen (and mind) for a gluten-free trial. 

 

Thanks!

[Jmg]

1 hour ago, workingk9 said:

That was the test! The Array thing. I'm going back to my regular doctor for my monthly b12 so I'm going to request he run the celiac panel again and will hopefully have the results by the end of the week and then I'll go gluten-free no matter the results to see if I feel any better. Like you (and Kate Moss!) said-- I'd MUCH rather feel better than eat gluten!

 

Carey

Except, if the results are positive, or even marginal, then they may want an endo for confirmation - so do make sure that you discuss with doctor to make sure they've finished all tests first.  If gluten is a problem for you its much worse removing then adding again for testing. 

If/when you do remove gluten you should keep a food diary, just note what you ate, when and how you feel. It's a good way to track any affects of removing gluten, or dairy etc etc.

Best of luck

Edit: Sorry, just read your earlier post and realised you already know this. It's worth repeating though trust me!

[workingk9]

1 hour ago, Jmg said:

Except, if the results are positive, or even marginal, then they may want an endo for confirmation - so do make sure that you discuss with doctor to make sure they've finished all tests first.  If gluten is a problem for you its much worse removing then adding again for testing. 

If/when you do remove gluten you should keep a food diary, just note what you ate, when and how you feel. It's a good way to track any affects of removing gluten, or dairy etc etc.

Best of luck

Edit: Sorry, just read your earlier post and realised you already know this. It's worth repeating though trust me!

Thank you! I do appreciate all the feedback :-) I actually have several months worth of food diaries that I kept when I was trying to figure out what was triggering all my symptoms. I never could pin anything down since celiac was off my radar due to the negative test 2 years ago. I will actually get those back out just to see if they are helpful at all, in retrospect.

Carey

[workingk9]

I went for my B12 shot this morning and they took blood for the celiac panel. I should have results in a week or so. 

Thanks for all your help!

 

Carey

[squirmingitch]

Good deal. Please keep us posted.

[workingk9]

Well, I got my results back today. I guess I do not have Celiac. My results from 2 years ago were

DGA, IGA  2

DGA, IGG  2

TTG, IGA <2

TTG, IGG  2

EMA IGA  negative

IgA QN  60

and today:

DGA, IGA  3

DGA, IGG  3

TTG, IGA  <2

TTG, IGG  2

EMA IGA  negative

IgA QN  56

 

My IGA keeps dropping (from 60 to 59 to 56), and I have no idea what that means, but I am going to cancel the appointment with the GI now. Back to the drawing board. 

 

Thanks for all your help. I am still going to try a gluten-free diet for awhile to see if it helps my fibro symptoms. 

 

Carey

[squirmingitch]

We can't tell anything without the reference ranges Carey.

 

[workingk9]

1 hour ago, squirmingitch said:

We can't tell anything without the reference ranges Carey.

 

Sorry, I had posted the reference ranges in a previous post--  

 

2 years ago I had these tests and results--

Deamidated Gliadin ABS, IgA, result 2. range 0-19 for negative

Deamidated Gliadin ABS, IgG, result 2, range 0-19 for negative

TTG, IgA, result <2, must be 4 or more for a positive result. 

TTG, IgG, result 2, must be over 5 for a positive result

Endomysial Antibody, IgA, Negative

IgA, QN, Serum, result 60 LOW , range 91-414

 

 the ranges are all the same for today's test.

 

Carey

[squirmingitch]

Okay then. I surely hope you can find the source of what's going on. Yes, do give the gluten-free diet a good solid 6 month try.