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

Borderline blood test result, Help!! ?

KJDx

Recommended Posts

KJDx Rookie
KJDx
Posted

Hi all,

So after 6 weeks of waiting for blood test results I finally thought i had answers. Found out my vitamin d level was 11 so was very very low and I'm still anaemic. What I'm confused about is one of my tests regarding celiac came back borderline, yet my doctor just shrugged it off and said I don't have celiacs. Should I accept that? Or demand further testing? Any help would be appreciated.

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

Celiac.com Sponsor (A8-M):


SLLRunner Enthusiast
SLLRunner
Posted

KjDx,

What were your results to the celiac tests? 

I would demand further testing. 

cyclinglady Grand Master
cyclinglady
Posted

Well, there HAS to be a reason for you to be anemic.   For that reason alone, your doctor should be investigating as to why you are anemic (and don't let them blame in on your monthly cycle).  

I can only tell you that I went in for a routine colonoscopy (yep, over 50!) and my GI looked at my chart and stated that he suspected I had celiac disease.  I was anemic, but had been my whole life (or at least as long as I had been tested).  I pointed out that I have Thalassemia (a genetic anemia) but he pointed out my low ferritin levels and the fact that I admitted it had been four months since my last monthly cycle.  The Thals is tiny blood cells and has nothing to do with iron absorption.  

My celiac blood tests (thank goodness he ordered the entire panel), had only one positive: DGP IgA and it was "mildly positive".  My endoscopy revealed a Marsh Stage IIIB (moderate to severe damage).  My TTG tests were negative!  The TTG IgA test is now the standard screening test for most doctors to use.  It is supposed to catch MOST celiacs -- but not all!  

I have a new provider and new insurance.  I got glutened in July.  Went in for follow-up testing with my PCP/Internist.  She could not even order the full panel!  So, she ordered the TTG.  Guess what?  Negative.  Referred me to a GI (needed to have one anyway).  The full panel was run and sure enough, my DGP IgA test came back positive -- higher than when I was first diagnosed (it was a bad, bad glutening).  

I would recommend insisting on a full panel.  Get a GI referral to a celiac-savvy doctor (I looked within my network myself and did not rely on my PCP for a referral as I wanted a GI who had celiac patients).  I also have my old GI who I would gladly pay cash to see again for a second opinion (I am saving tons of money by not eating out!) if needed.  I would also use the patient portal and document in writing your request for a full panel.  I have found that I do most of my communicating via the patient portal.  There's less room for communication errors that way and doctors have to respond.  No brush offs!  Be nice and professional.

Whatever you do, continue to advocate for your health.   You have patient rights!    

KJDx Rookie
KJDx
Posted
  • Author
6 hours ago, SLLRunner said:

KjDx,

What were your results to the celiac tests? 

I would demand further testing. 

I don't know them in detail all I know is that one came back borderline :/ I'm going to change my doctors and get a second opinion.

what I'm worried about is I'm taking a very high dose of vitamin d3 as prescribed by the doctor alongside calcium and if it is celiacs that I'm suffering from then surely this won't be absorbed? 

KJDx Rookie
KJDx
Posted
  • Author
5 hours ago, cyclinglady said:

Well, there HAS to be a reason for you to be anemic.   For that reason alone, your doctor should be investigating as to why you are anemic (and don't let them blame in on your monthly cycle).  

I can only tell you that I went in for a routine colonoscopy (yep, over 50!) and my GI looked at my chart and stated that he suspected I had celiac disease.  I was anemic, but had been my whole life (or at least as long as I had been tested).  I pointed out that I have Thalassemia (a genetic anemia) but he pointed out my low ferritin levels and the fact that I admitted it had been four months since my last monthly cycle.  The Thals is tiny blood cells and has nothing to do with iron absorption.  

My celiac blood tests (thank goodness he ordered the entire panel), had only one positive: DGP IgA and it was "mildly positive".  My endoscopy revealed a Marsh Stage IIIB (moderate to severe damage).  My TTG tests were negative!  The TTG IgA test is now the standard screening test for most doctors to use.  It is supposed to catch MOST celiacs -- but not all!  

I have a new provider and new insurance.  I got glutened in July.  Went in for follow-up testing with my PCP/Internist.  She could not even order the full panel!  So, she ordered the TTG.  Guess what?  Negative.  Referred me to a GI (needed to have one anyway).  The full panel was run and sure enough, my DGP IgA test came back positive -- higher than when I was first diagnosed (it was a bad, bad glutening).  

I would recommend insisting on a full panel.  Get a GI referral to a celiac-savvy doctor (I looked within my network myself and did not rely on my PCP for a referral as I wanted a GI who had celiac patients).  I also have my old GI who I would gladly pay cash to see again for a second opinion (I am saving tons of money by not eating out!) if needed.  I would also use the patient portal and document in writing your request for a full panel.  I have found that I do most of my communicating via the patient portal.  There's less room for communication errors that way and doctors have to respond.  No brush offs!  Be nice and professional.

Whatever you do, continue to advocate for your health.   You have patient rights!    

That's all I keep hearing, it's most likely you're monthly cycle making you anaemic :/ I'm sick of answers being a blur.

i too had low ferritin levels, mine were 0.1. I didn't even see my results all he did was go through them briefly, it's like he couldn't wait to get me out the door and no matter what I say they don't listen.

im just so annoyed and life is a nightmare at the minute :( I'm losing hope! 

Im definitely going to get a second opinion from a new doctor.

 

cyclinglady Grand Master
cyclinglady
Posted
22 minutes ago, KJDx said:

I don't know them in detail all I know is that one came back borderline :/ I'm going to change my doctors and get a second opinion.

what I'm worried about is I'm taking a very high dose of vitamin d3 as prescribed by the doctor alongside calcium and if it is celiacs that I'm suffering from then surely this won't be absorbed? 

If you do have celiac disease, absorption of different minerals and vitamins occurs in different sections of the small intestine.  I think taking iron, vitamin D3 and calcium as recommended by your doctor is fine for a while.  I took iron before I was diagnosed.  It would bump up my ferritin level, but it would drop when I got my 30 day periods!  Ugh, that last year of perimenopause!  Please make sure your supplements are the easiest to digest and are gluten free (if before you have a diagnosis). 

Please also get all copies of your medical lab work and other records, if possible.  Actually, if you are in the US, they have to give them to you.  I have been keeping a record for 20 years now and have everything ever done in my personal files.  When I get a new doctor, they love the history I provide (e.g. provided hospital xray report showing fractures and my celiac disease biopsy report so it made it easy for my GP to order a bone scan).  

KJDx Rookie
KJDx
Posted
  • Author
16 minutes ago, cyclinglady said:

If you do have celiac disease, absorption of different minerals and vitamins occurs in different sections of the small intestine.  I think taking iron, vitamin D3 and calcium as recommended by your doctor is fine for a while.  I took iron before I was diagnosed.  It would bump up my ferritin level, but it would drop when I got my 30 day periods!  Ugh, that last year of perimenopause!  Please make sure your supplements are the easiest to digest and are gluten free (if before you have a diagnosis). 

Please also get all copies of your medical lab work and other records, if possible.  Actually, if you are in the US, they have to give them to you.  I have been keeping a record for 20 years now and have everything ever done in my personal files.  When I get a new doctor, they love the history I provide (e.g. provided hospital xray report showing fractures and my celiac disease biopsy report so it made it easy for my GP to order a bone scan).  

Oh okay then, that's good to hear. I have that problem too. They'll go up then drop to 7-8 sometimes :/ with the blame of the monthly cycle being to blame from the doctors point of view.

my iron supplements are in tablet form (ferrous sulphate) and my vitamin d3 is in liquid in the form of an ampoule. I don't know if it's a side effect but the past two days I've had the worst nausea known to man :(

I don't know if I can get copies as I'm from the UK (my spelling of celiacs is a habit now). My plan is to change doctors and get an opinion from them and ask for an endoscopy.

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

Celiac.com Sponsor (A8-M):


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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, ...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're...
    5. Scott Adams
      - Scott Adams replied to Me,Sue's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Knowing what to do when feeling unwell.

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back u...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,871
    • Most Online (within 30 mins)
      7,748
    GR82BNTX
    Newest Member
    GR82BNTX
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      still struggling with cravings

      By Scott Adams · Posted

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Oh my goodness medication causing pain !!!!

      By Scott Adams · Posted

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. 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/   
    • Scott Adams
      Knowing what to do when feeling unwell.

      By Scott Adams · Posted

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, 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.