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

Prometheus Lab Test


mommyof2

Recommended Posts

mommyof2 Newbie

Hi folks, Newbie here - I have visited the board for info but this is my first time posting. I have been followed by a GI for over a year for reflux disease and a swallowing problem. Once we got those symptoms improved I brought up some other digestive problems I had been having with him and had tried gluten-free for a few weeks and had some improvement. He ordered blood tests - one out of the three were positive and did a biopsy with my last endo which was negative. At my last GI visit I told him I was staying mostly gluten-free because I felt better but when I cheat (which I seem to do at least once a week) I can have problems for several days. This time around he ordered the tests by Prometheus Labs which include a 5 marker serology with genetics reflex. He said I didn't have to be consuming gluten because the genetic marker will not be affected by that. I am wondering if it will be a more conclusive test if I am actually eating more gluten. The original blood tests may have been negative because I was mostly gluten free at the time - I had a sandwich the day before thinking I should eat some in case he did the blood test. So the question is should I be eating gluten and for how long before the test? I just took the lab referral home with me so I could post and get some input before I go. 2 of my mom's sister's had celiac's and I think my mom does too so the genetic test will be helpful to convince my mom to be tested.


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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast

Hi Im Kaiti and I am 17 and I was actually just diagnosed with Celiac this year. When I first got the test done he said to eat the foods I would normally eat and dont change it because that will affect the outcome of the test. I ate wheat and foods containing gluten for about a week and then after the testing I went off it to make sure. If you are already cheating once a week you will have wheat already in your system so you would be fine to go get your testing done now if you wanted. It does not get out of your system for a while so I think you are fine to get it done now if you need any more info id be happy to help the best I can. :)

mommida Enthusiast

You don't have to consume gluten for the genetic test.

My daughter was diagnosed through this test. My test was negative. Do you have a skin rash of any kind as a symptom of gluten consumption? The doctor is still checking if dermititus herpetiformis is detectable through the gene test.

( It seems the test was supposed to be at least 90% accurate, but now they are saying it can have a 30% failure rate. If that makes sense to you can you explain that to me?)

Laura

Archived

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

  • 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. - Scott Adams replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      how long does it take for the genetic blood test for celiac to come back?

    2. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Pain in the right side of abdomen

    3. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Pain in the right side of abdomen

    4. - Scott Adams replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Pain in the right side of abdomen

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,666
    • Most Online (within 30 mins)
      7,748

    S.Aulman
    Newest Member
    S.Aulman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Genetic testing for celiac disease (the HLA-DQ2 and HLA-DQ8 genes) usually takes about 3–10 days to come back, depending on the lab your doctor uses, though some places may take up to two weeks. The test itself doesn’t diagnose celiac disease—it only shows whether you carry the genes that make celiac possible. About 30–40% of people have one of these genes, but only a small percentage actually develop celiac disease. However, if the test is negative for both genes, celiac disease becomes extremely unlikely, which is why your doctor mentioned possibly canceling the endoscopy if the result is negative. If it’s positive, it just means celiac remains a possibility and further testing, like a gluten challenge followed by endoscopy, helps confirm it. Since you have an identical twin, it’s definitely useful information to share if the genes are present, because twins share the same genetic risk. It sounds like you found a very thorough GI doctor, which is great, especially since she’s also monitoring nutrients and looking at the whole picture.
    • knitty kitty
      @Heatherisle, You're not a bother at all.   What "Vitamin B medication" is she taking?  Is it just B12 and folate?   All eight B vitamins, Vitamin D and other vitamins and minerals need to be supplemented because the malabsorption of Celiac disease affects all the nutrients.  All the B vitamins work together.  Just supplementing one or two can throw the other B vitamins out of balance causing worsening deficiencies in other B vitamins.  Doctors are undereducated about nutrition.  Heavy sigh. This is worrisome.  These are all symptoms of Gastrointestinal Beriberi caused by Thiamine deficiency.   An Erythrocyte Transketolace Activity Assay needs too be done to check her Thiamine level.  But because this test is so expensive and takes so long for the results to come back, it's much simpler to administer 500 mg Thiamine Hydrochloride several times a day for several days and look for health improvement (WHO recommendation).  Doctors can administer Thiamine Hydrochloride by IV along with a "banana bag" with all the B vitamins in it.  (Riboflavin gives it the yellow color.).  I've experienced vitamin deficiencies which my doctors didn't recognize.  When thiamine and B12 deficiencies started affecting my brain function, my doctors wrote me off as a depressed hypochondriac.  I had Gastrointestinal Beriberi myself.  I took over the counter thiamine hydrochloride at home and had health improvement within an hour.  High doses (500 mg) of Thiamine are needed to "jump start" the body into proper functioning.   Apologies if I was curt.  I get very frustrated because the nutritional deficiencies that occur with Celiac disease are not addressed properly.  All I can do is tell people about what I learned on my Celiac journey.  Have you visited my blog?  Tap on my name, look for pull down menu Activities and go to blog.   I do hope your daughter can get the nutritional support she needs.  I'm very worried.  Please keep us updated!
    • Heatherisle
      Hi  Thank you, will tell her to do that
    • Scott Adams
      I think a key thing here would be to ensure that the prescription(s) she started taking are actually gluten-free, as some contain wheat starch. In the USA we have a site you can check, not sure about the UK, but possibly. 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/   
    • Heatherisle
      Hi again Sorry to be a pain but my daughter started on her Vitamin B medication a week ago, not sure what dosage as she hasn’t said. However she has been feeling much worse the last couple of days with back pain, bowel and tummy problems, blurry vision, tingling. Had GP appointment after work and has been sent to hospital for scan of head and bloods. She should have had other bloods done when she had her B12 and folate done but GP didn’t put them on the list, ie Vitamin D levels, ferritin, thyroid function tests, glucose. She phoned us this morning very upset and worried. Told her it was probably the body’s reaction to the medication and that it might get worse before it gets better. My husband and I live in the Western Isles and she’s in Glasgow so we can’t exactly jump on a bus and be there at the moment. Hoping you have some words of wisdom for me and sorry again for annoying you. Thanks
×
×
  • 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.