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. Me,Sue
      - Me,Sue posted a topic in Introduce Yourself / Share Stuff
      0

      Knowing what to do when feeling unwell.

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed...
    2. Francis M
      - Francis M replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    3. Scott Adams
      - Scott Adams replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      3

      Stomach burning and neuropathy

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The...
    5. Scott Adams
      - Scott Adams replied to Me,Sue's topic in Related Issues & Disorders
      2

      Nausea

      Welcome to the forum. Is the nausea associated with eating certain foods, or anything else in particular? Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,852
    • Most Online (within 30 mins)
      7,748
    LG2
    Newest Member
    LG2
    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

    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
    • Scott Adams
      Nausea

      By Scott Adams · Posted

      Welcome to the forum. Is the nausea associated with eating certain foods, or anything else in particular?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
×
×
  • 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.