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Member Since 04 Jan 2011
Offline Last Active Nov 16 2012 02:44 PM

Topics I've Started

If Your Doctor Won't Order Testing...

28 January 2012 - 11:10 AM

My mom decided to go ahead and get screened, finally. But she has Kaiser and they had to be convinced. Finally they used their screening protocol and ordered only the anti tTG IgA, despite the detailed list I had given her, with specific info on how important it was to also get total IgA for any tests that look at IgA.

Apparently, their protocol also does not allow for running the EMA, or anti-Gliadin Deamidated Peptide IgA or IgG. First they do genetic screening and take family history IF the tTG comes back positive before they will approve those tests. How much do you want to bet their genetic screening only looks for DQ2 and DQ8 and doesn't even look at HLA-DQ alpha?

Genetic screening is more expensive than the blood work. My kids were covered by their insurance for the genetic screening and we couldn't put our son back on gluten, so we did it. I did not get mine done because I was paying out of pocket and was able to extrapolate my results from theirs. I can't remember the cost, now, I think it was something like $360.

What I do know is that I paid only $169 plus a $15 blood draw fee for a combined celiac panel including Total IgA, anti-tTG IgA, EMA, and anti-Gliadin Deamidated Peptide IgA and IgG!!!

These tests can be ordered online (in most USA states) without permission from your doctor, without insurance, for a bit more than I paid through my doctor. http://www.ineedlabs...?keyword=celiac

This might be very worth doing if you can't get in to see your doctor or can't get your doctor to approve your blood tests. A couple hundred bucks is plenty, especially if you are poor like we are right now. But the costs of staying on gluten longer in hopes of a doctor finally ordering the tests could be much higher. I was surprised at how reasonable the cost was to get a full standard screening.

I have a friend who is very concerned about the cost and only wants to order the tests if she first uses up her high deductible/health care savings account and can get her doctor to order it and insurance to pay. What is her deductible being consumed with right now? A slew of medications that attempt to control symptoms which could be caused by celiac! I'll definitely be sharing the low cost of getting blood work with her, now that I know!

Questions About Cyrex

25 January 2012 - 10:07 AM

As some of you know I've been doing a gluten challenge after being gluten free for a year (on GAPS for most of it). My doctor did order a standard panel for me, but now I'm considering getting the cyrex array 3 instead.

My doctor ordered:
Total IgA
Anti Gliadin IgA
Anti Gliadin IgG
Anti tTG IgA
Anti EMA IgA

She couldn't order the Deamidated Gliadin Peptide test.

Looking at the cyrex array, I see that there is
Deamidated Alpha Gliadin 33 MER IgG ( CPT CODE : 86001-59 )
Deamidated Alpha Gliadin 33 MER IgA ( CPT CODE : 83516-59 )

Are these the same as a Deamidated Gliadin Peptide test? The array also offers other tests which I would find interesting as part of the array - the gluteomorphin, for example. However, the Anti-endomysial Antibody test and the total IgA do not seem to be included.

I KNOW that gluten is a problem for me. The main reason I want the celiac screening is so that I can be aware of whether I have autoimmune gut damage going on as a part of my intolerance, for family reasons and emotional reasons. A smaller side-note... if I don't have indications of autoimmune issues, I may be ok with eventually basing my level of allowable cross-contamination on symptoms rather than absolute avoidance, as I do for my son.

I am leaning toward going with the cyrex array 3 and then if all my IgA numbers are low, getting the total IgA tested, if Deamidated Alpha Gliadin is the same as the Deamidated gliadin peptide test.

But I did want the EMA test. I have a call out to my doctor to find out the cost of the tests ordered, since I have to pay for everything out of pocket. Doing the tests in a phased approach is not possible because I need to stop eating gluten ASAP!!!

What do you think?

My Boy Went On The Radio About Celiac

29 December 2011 - 07:40 PM

My son has been part of our local public access radio station's youth collective for a couple years now. Every month, the kids pick a theme and do a show. This month, the theme was "The Letter C." My son decided to do his piece on celiac disease and cross contamination. He wrote it up and recorded it himself :) http://kboo.fm/node/32879

This was a big deal, as no one at the youth collective except one friend knew that he had celiac disease. He's sat there and watched them all eat snacks he can't have every week all year and not said anything. In fact, the night he decided to do this piece, there was even a surprise pizza party half way through the meeting. (The group facilitator went and found him some clementine oranges for him when she realized of course the pizza wouldn't be ok.)

Anyway, I'm proud of him.

Steroid Use (Even Topical) And Testing

19 December 2011 - 09:20 AM

We got follow up testing done for our son, since he's been gluten-free for over a year now, and the lab sent us back info I'd never seen before!

We actually got this on the sample submission guidelines for celiac testing from a different lab, to which we were submitting samples for something else (instructions in the same booklet). The instruction book had this info in it. The lab results from the celiac testing (at another lab, submitted by our doctor) did not say anything about this.

Did you know that steroid use, even topical use a month prior, can cause false negatives on celiac testing?

"Immunosuppressive drugs such as oral or intranasal corticosteroids (prednisone, beclomethasone, fluticasone, triamcinolone), and topical cortisone suspensions and creams, may affect test results for antibody assessment. The suggested time period to abstain from these is 4 weeks."

Does Anyone Else Stink?

10 December 2011 - 08:56 AM

So I am a couple weeks into a gluten challenge after a year of being gluten free and 9 months of GAPS. By changing my diet, I had eliminated what had become terrible chronic bad breath, BO, and gas. Uncultured dairy causes it and gluten causes it, I know that for sure.
I am trying to do the challenge for at least two months but this is so embarrassing. Does anyone have coping skills for these symptoms? Brushing teeth/mouthwash/gum etc don't touch my bad breath. Deodorant doesn't cut my BO. Charcoal helps gas some.

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