Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Results From Bloodwork And Dna Testing - Questions


nasalady

Recommended Posts

nasalady Contributor

My test results from Prometheus are in, and I have some questions. I would be very grateful if some of the experts can answer them. Please bear with me as I provide some background first.

Here are the Prometheus celiac panel results:

*****************************************************************************

AGA IgG: Result=1.1 U/ml; Reference Range <10.0 U/ml

AGA IgA: Result=1.2 U/ml; Reference Range <5.0 U/ml

TTG IgA: Result=0.4 U/ml; Reference Range <4.0 U/ml

EMA IgA: Result=negative

Total IgA: Result=191 mg/dl; Reference Range = 44-441 mg/dl

Alleles Detected: HLA allelic variants associated with celiac disease detected --> DQ8 heterozygous

Summary Interpretation: Results do not exclude a diagnosis of celiac disease

*****************************************************************************

My doctor said that since I'm currently on high dosages of prednisone and Imuran, he's not surprised that the bloodwork is negative.

Since I apparently have celiac genes, he now wants to do both a colonoscopy and an endoscopy....on November 21st. Which means that I must stay on gluten until then! :(

I'm on those immunosuppressant meds (prednisone and Imuran) because I have autoimmune hepatitis. I also have Hashimoto's thyroiditis, psoriasis, rheumatoid arthritis, asthma, and fibromyalgia so severe I'm now in a wheelchair. I've had a number of weird neurological symptoms for some time now, including peripheral neuropathy and ataxia, plus visual disturbances. I had an MRI recently which virtually ruled out MS...but it showed that my brain has atrophied more than it should have for my age (I'm 52).

According to a medical article I downloaded recently (Hadjivassiliou, Grunewald and Davies-Jones 2002, J. Neurol. Neurosurg. Psychiatry, "Gluten sensitivity as a neurological illness", 2002), neurological symptoms and even brain atrophy may be associated with celiac disease or gluten sensitivity.

I suspect that I'm at least gluten-sensitive, even if it turns out that I don't have celiac disease, because when I went off gluten I felt better, and when I went back on gluten, my mouth broke out in sores and I felt terrible. All of my "IBS" symptoms came back with a vengeance.

OK, so there are the facts as I know them.....

Now for the questions:

1. If the prednisone and Imuran have suppressed my autoimmune diseases as they are SUPPOSED to, why should the doctor expect any damaged villi to show up in my intestines during a biopsy?

2. Has anyone else had an MRI that showed brain atrophy? Has that reversed itself since you've been gluten-free?

Thanks in advance for your help....

JoAnn


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



nasalady Contributor
Now for the questions:

1. If the prednisone and Imuran have suppressed my autoimmune diseases as they are SUPPOSED to, why should the doctor expect any damaged villi to show up in my intestines during a biopsy?

2. Has anyone else had an MRI that showed brain atrophy? Has that reversed itself since you've been gluten-free?

Thanks in advance for your help....

JoAnn

Note: I'm using the term "brain atrophy", but maybe that's an exaggeration. I looked again at the MRI report and the term they use is "mild diffuse volume loss". I guess I thought that "volume loss" = brain shrinkage = atrophy. I don't know if these phrases are actually equivalent.

sick-of-being-sick Newbie
1. If the prednisone and Imuran have suppressed my autoimmune diseases as they are SUPPOSED to, why should the doctor expect any damaged villi to show up in my intestines during a biopsy?

2. Has anyone else had an MRI that showed brain atrophy? Has that reversed itself since you've been gluten-free?

Thanks in advance for your help....

JoAnn

Hi,

I just asked almost the exact same question as your question #1 about prednisone and azathioprine (Imuran) and got several replies. Check out the topic if you haven't done so already. It seems that prednisone may induce some healing of the villi and make it harder to diagnose celiac disease. I too will be having a biopsy in the near future. Good luck with yours!

Unfortunately I don't know anything at all about question #2.

Take care,

rissa

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,163
    • Most Online (within 30 mins)
      7,748

    Estee
    Newest Member
    Estee
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...