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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,945
    • Most Online (within 30 mins)
      7,748
    Miyasato
    Newest Member
    Miyasato
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation."   I don't think black seed oil is lowering inflammation.  It's lowering blood glucose levels. Black cumin seed lowers blood glucose levels.  There's a connection between high blood glucose levels and Afib.    Has your husband been checked for diabetes?   Must Read: Associations of high-normal blood pressure and impaired fasting glucose with atrial fibrillation https://pubmed.ncbi.nlm.nih.gov/36750354/  
    • knitty kitty
      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

      By knitty kitty · Posted

      Healthy Omega Three fats.  Olive oil or flaxseed oil, oily fish, fatty cuts of meat.   Our bodies run much better on burning fats as fuel.  Diets based on carbohydrates require an increased amount of thiamine to process the carbs into fuel for the body.  Unfortunately, thiamine mononitrate is used to enrich rice.  Thiamine mononitrate is relatively unusable in the body.  So a high carb diet can further decrease thiamine stores in the body.  Insufficient thiamine in the body causes the body to burn body fat and muscle for fuel, so weight loss and muscle wasting occurs.  Those extra carbohydrates can lead to Candida (often confused with mold toxicity) and SIBO (Small Intestinal Bacterial Overgrowth).   Losing weight quickly is a symptom of thiamine insufficiency.  Muscle wasting is a symptom of thiamine insufficiency.  I lost sixty pounds in a month.   Having difficulty putting weight on and keeping it on is a symptom of thiamine insufficiency.   The AIP diet works because it eliminates all grains and grasses, rice, quinoa, all the carbs.  Without the carbs, the Candida and SIBO get starved and die off.  Easy way to change your microbiome is to change what you feed it.  With the rowdy neighbors gone, the intestine can heal and absorb more nutrients.   Supplementing with essential vitamins and minerals is beneficial.  Talk to your doctor and nutritionist.  Benfotiamine is a form of thiamine that promotes intestinal healing.  The eight B vitamins are water soluble, so if you don't need them, they can be gotten rid of easily.   Night shades are excluded on the AIP diet.  Potatoes, tomatoes, peppers and eggplant are not allowed on the AIP diet.  They contain alkaloids that promote "a leaky gut".  Benfotiamine can help here. Sweet potatoes are avoided because they contain thiaminases, chemicals that break thiamine so that the body cannot use it.   The AIP diet has helped me.
×
×
  • 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.