Jump to content

  • 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

Follow-up Blood Work

Moondanse

By Moondanse
in Doctors

Recommended Posts

Moondanse Explorer
Moondanse
Posted

When I was first diagnosed, my doctor left me a voicemail regarding the diet that said "You are a smart woman, I'm certain you will figure it out". That was it. I got a letter in the mail with a business card for a local nutritionist (who also stunk). When I asked about testing for vitamin deficiency I was told it wasn't necessary and to take calcium. So, I never went in for my 3 month follow-up because he didn't impress me.

It's been six months now and I decided I'd give him the benefit of the doubt and go one more time. Though my visit with him was a waste of time and a co-pay, he did agree to do all the blood tests that I requested. I was happy about that. He also said he was going to run a Prometheus Celiac Plus panel. When I looked it up it said that it tests for genetic factors as well as the usual serological tests. I'm anxious to get the results back. Is anyone familiar with this panel? I don't know why he's doing this test now and why he didn't do this test initially, but I'm happy he decided to do it today.

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

Celiac.com Sponsor (A8-M):


Piccolo Apprentice
Piccolo
Posted

Moondanse

My Dr. just ran a panel from Prometheus lab. I got a letter if insurance does't cover I'm responsible for the $799.00 tab for the test. Mine came out negative as I have been gluten free for 1 year. I did not have the genetic markers either. My PCP ran all of the tests I requested with pleasure because I am advocating for myself. Yes the medical profession has let me down also.

Susan

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted
Is anyone familiar with this panel?

Yes, I had my blood work sent to Prometheus labs too. Here were my results:

AGA IgG - 11.9 U/ml

AGA IgA - 5.9 U/ml

IgA ELISA (TTG IgA) - >100 U/ml

IgA IFA (EMA IgA) - Positive

Total IgA - 100 mg/dl

HLA DQ2 - Detected

HLA DQ8 - Not Detected

Results of my Biopsy - Inconclusive evidence of Celiac Disease (they did this first, then ran the blood test, they said that it was microscopic evidence)

Who really knows what all this means?

par18 Apprentice
par18
Posted
When I was first diagnosed, my doctor left me a voicemail regarding the diet that said "You are a smart woman, I'm certain you will figure it out". That was it. I got a letter in the mail with a business card for a local nutritionist (who also stunk). When I asked about testing for vitamin deficiency I was told it wasn't necessary and to take calcium. So, I never went in for my 3 month follow-up because he didn't impress me.

It's been six months now and I decided I'd give him the benefit of the doubt and go one more time. Though my visit with him was a waste of time and a co-pay, he did agree to do all the blood tests that I requested. I was happy about that. He also said he was going to run a Prometheus Celiac Plus panel. When I looked it up it said that it tests for genetic factors as well as the usual serological tests. I'm anxious to get the results back. Is anyone familiar with this panel? I don't know why he's doing this test now and why he didn't do this test initially, but I'm happy he decided to do it today.

When you say diagnosed I assume like me you had a biopsy? I had no blood tests done for Celiac prior to my diagnosis because I was so malnourished that the GI went straight for the scope. Anyway back to your question. I responded so well to the diet I did not get any testing done for the first year except for a bone scan. I attended a talk given by Dr. Fasano (U of Maryland) the following year and asked him about follow-up testing. He said I should get the blood tests at least once to check the progress and see if "any" gluten was getting into my diet. I did this and also got gene tested at the same time. All the anti-body levels were the negative number of "1". I did have the DQ2 gene. I don't think I will get these tests done again anytime soon even though my insurance would probably pay because I feel fine just doing the diet.

Tom

Guest Doll
Guest Doll
Posted
Yes, I had my blood work sent to Prometheus labs too. Here were my results:

AGA IgG - 11.9 U/ml

AGA IgA - 5.9 U/ml

IgA ELISA (TTG IgA) - >100 U/ml

IgA IFA (EMA IgA) - Positive

Total IgA - 100 mg/dl

HLA DQ2 - Detected

HLA DQ8 - Not Detected

Results of my Biopsy - Inconclusive evidence of Celiac Disease (they did this first, then ran the blood test, they said that it was microscopic evidence)

Who really knows what all this means?

This is suggestive of Celiac Disease for sure (TTG >100, positive EMA, DQ2). If you have been gluten-free for a while that may explain what seems to be a lower AGA IgA value. You can have an inconclusive biopsy if not enough samples were taken, or your amount of intestinal damage is mild to moderate. Your doctor should still be recommending you follow the gluten-free diet.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. RMJ
      - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea

      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight. My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she...
    2. Colleen H
      - Colleen H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Stomach burning and neuropathy

      Hello I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet. Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I...
    3. sleuth
      - sleuth replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      Of course my son is on a 100% gluten free diet. I wish his symptoms were not debilitating as there are right now. He cannot work, even when a miniscule of cross contamination occurs. It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc. It's literally neurological inflammation. Not to be taken lightly here. We...
    4. Scott Adams
      - Scott Adams replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-F...
    5. Me,Sue
      - Me,Sue posted a topic in Coping with Celiac Disease
      1

      Nausea

      Hi all I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also]. BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,837
    • Most Online (within 30 mins)
      7,748
    Juliane
    Newest Member
    Juliane
    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

    • RMJ
      Nausea

      By RMJ · Posted

      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Stomach burning and neuropathy

      By Colleen H · Posted

      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Nausea

      By Me,Sue · Posted

      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.