Borderline blood test result, Help!! ?

[KJDx]

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.

[SLLRunner]

KjDx,

What were your results to the celiac tests? 

I would demand further testing. 

[cyclinglady]

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]

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]

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]

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]

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.