Anxious about Biocard test results

[maverickuk]

5 years ago, I did 4 home tests using Biocard. All were positive. I went to my doc and she dismissed me instantly, stating that the home tests cannot be accurate and that because I am a normal weight, I cannot possibly have Celiacs, ALL celiacs are underweight. I now know that is not true.

I have been exhausted for 20 years now. To the point I could no longer get out of bed until noon. I took a cortisol saliva test, which showed my cortisol levels were extremely low. Way below the range, so I now take hydrocortisone, which has given me my life back. I am still tired, but I can function.

I was/am convinced that the adrenal issues are related to an underlying illness, that will explain my other symptoms. Immense brain fog, super sensitive skin, photosensitivity, gut issues such as D and C etc.

I then randomly read that adrenal fatigue can be caused by untreated celiacs, because of the stress it puts on your body. So I read up some more about Biocard and found evidence that suggests it is just as accurate as the lab tests. I went out and purchased another card, which was positive. Not convinced, I purchased another, which was also positive.

The line was not as dark as the test line, but a very clear line. 

I booked an appointment with the doc on Thursday, but feel sick at the thought of going. I literally cannot bear the thought of having to fight for the test, for it to them be negative. 

This bloody line, how dark does it need to be? It seems to me, any line would be positive. But I am so used to hitting dead ends, I am convinced this is somehow wrong. I am at the point where I'm about to cancel my appointment.

Any advice would be wonderful. Thanks guys! 

Please see attached my 2 results.

[maverickuk]

I aslo had my partner do the test, which showed no line at all. Ugh, I am literally driving myself insane over this! It almost feels easier to just stay sick.

I have had positive tests for ANA several times, Lupus Anticoagulant, lifetime of symptoms and yet never a diagnosis, just brick wall after brick wall. The test I did for cortisol was paid for privately, my doctor then refused to acknowledge the test and said they will only use the blood tests, which aren't accurate. It is beyond bewildering when you're sick and no doctor will take you seriously. 

[cyclinglady]

I am so sorry that you are struggling to get a diagnosis!  It is all too common.  I do not know about the Biocard, but we have had some members use it, and hopefully they'll respond today.  I can give you the complete list for the celiac blood panel:

 

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA 

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

 

-endoscopic biopsy - make sure at least 6 samples are taken

 

(Source: NVSMOM -- ?)

 

Has your thyroid been tested?  

 

Welcome to the forum and let us know how it goes! 

 

 

 

[maverickuk]

Thanks a lot. 

I am going to go to my appointment and see how it goes. If it's a negative test, I am going gluten free anyway. 

When I do go gluten free, many of my symptoms go away. Though I have never stuck to it long enough. These positive tests however will give me the motivation. 

[cyclinglady]

If you are considering the celiac blood panel (convince your doctor), you must be consuming gluten daily for 8 to 12 weeks or chances are, your test will be negative.  Research the University of Chicago's celiac website.  They are one of the leading researchers in the U.S.  Also check the Gastroenterology's organization in Great Britain for symptoms and protocol for testing.  Print that out and take it to your MD.  Find evidence (there's plenty) on the internet where weight is not a factor (and it is not).  Pick credible sites that are researched based. 

[nvsmom]

I did the Biocard test.  Mine was positive too although not as dark as your line.  I took my result to the doctor and he tested me too. He ran the exact same tests as the Biocard: the tTG IgA (tissue transglutaminase Immunoglobulin A) and the IgA serum (which is the control line).  My result was >200 with a normal range of 0-20.  I may have been 201 or 567, but it was very positive.  He then did the EMA IgA (endomysial antibodies) which confirmed the result with a positive titre.

A positive biocard test is a positive tTG IgA test.  I'm afraid your first test should never have been dismissed. That doctor did you a grave disservice.    Chances are that you have celiac disease.

I also had slightly low cortisol for no obvious reason beyond being worn down by untreated celiac disease.  I was on hydrocortisone and fludricortisone (for low blood pressure) for about a year.  The steroids did seem to raise my cortisol (it's no longer low) but it helped with weight gain and I became prediabetic while on them (steroids can cause insulin resistance).

Also, be aware that steroid use can cause falsely negative celiac disease tests.  I think going gluten-free no matter what the tests say is a good idea for you.

The gluten-free diet can take many months or a few years to heal you.  Be patient once you go gluten-free.  I had lupus symptoms which I had a hard time believing were caused by celiac disease because I was still getting them a good year after going gluten-free.  The symptoms eventually left, but it took a couple of years.

Let us know how it goes with the doctor!

[maverickuk]

I did the Biocard test.  Mine was positive too although not as dark as your line.  I took my result to the doctor and he tested me too. He ran the exact same tests as the Biocard: the tTG IgA (tissue transglutaminase Immunoglobulin A) and the IgA serum (which is the control line).  My result was >200 with a normal range of 0-20.  I may have been 201 or 567, but it was very positive.  He then did the EMA IgA (endomysial antibodies) which confirmed the result with a positive titre.

A positive biocard test is a positive tTG IgA test.  I'm afraid your first test should never have been dismissed. That doctor did you a grave disservice.    Chances are that you have celiac disease.

I also had slightly low cortisol for no obvious reason beyond being worn down by untreated celiac disease.  I was on hydrocortisone and fludricortisone (for low blood pressure) for about a year.  The steroids did seem to raise my cortisol (it's no longer low) but it helped with weight gain and I became prediabetic while on them (steroids can cause insulin resistance).

Also, be aware that steroid use can cause falsely negative celiac disease tests.  I think going gluten-free no matter what the tests say is a good idea for you.

The gluten-free diet can take many months or a few years to heal you.  Be patient once you go gluten-free.  I had lupus symptoms which I had a hard time believing were caused by celiac disease because I was still getting them a good year after going gluten-free.  The symptoms eventually left, but it took a couple of years.

Let us know how it goes with the doctor!

I actually found a post of yours, pretty much saying the above. Thank you. So many on the Facebook groups state that the Biocard tests aren't reliable, yet they have be basis for their opinion. Yet I still allow it to cast more and more doubts over my positivive results.

I had the blood tests on Thursday and hoping to get the results back soon. 

Despite numerous positive home tests, I've convinced myself that the result from the doctor is going to be negative. I just cannot imagine a phone call with a yes, an answer to all of this. I guess hitting so many dead ends, I can't imagine anything else but. 

If the results are positive, it looks like the next hurdle will be an endoscopy, with huge waiting times. 

[nvsmom]

I know of one woman that happend to. A positive Biocard and a negative doctor test (both tTG IgA).  It appears that she had Lyme disease. A serious infection can sometimes cause a false positive tTG IgA test, as can diabetes T1, liver disease, hashimotos, crohn's, and colitis.  False positives are thought to happen only about 5% of the time though.

I hear you about the waiting times. I'm in Alberta and the waiting time to see a Gastro about celiac disease was 9+ months, back when I was tested.  Who knows how much longer it would take for the endoscopy.  I chose to skip it.  I had a positive EMA IgA, tTG IgA, other autoimmune diseases, and celiac disease in cousins on both side of my family. Along with my symptoms, I had no doubt that it was celiac disease.

Let us know how it goes!

[maverickuk]

Just got my results back today. 

I called the surgery and asked if my results were back. The receptionist said yes, but the doctor hasn't checked them yet. I asked if she could give me the result, to which she replied no. 

So after work, I went in to the surgery and asked for a copy of my results, as I was anxious and couldn't wait. The receptionist said she couldn't print them off, until the doctor had seen them. However, she said she will go and speak with the doctor. 

10 minutes later she come back and said "the doctor said nothing to worry about, but she needs to see you to go over your results. But don't worry about it tonight". 

To which I explained I'm not worried about a positive  diagnosis, I'm worried about another dead end. I've been exhausted for 23 years and have been trying to find answers for that long. 

To which she replied "oh, I see, then you've finally found some answers then" and she smiled. 

I cannot explain the wave of emotion that ran through my body. I instantly almost burst in to tears. I was certain this was going to be another dead end. I walked out and found it difficult to keep the tears at bay. 

I have an appointment tomorrow after work to go over my results and next actions. I am hoping I can get a diagnosis without the biopsy. I guess I'll know by tomorrow. 

[cyclinglady]

Sounds strange for me to type this.....but I am happy for you!  Now you can take action and get well!  Keep us posted on your progress and never stop advocating for your health!  ?

[nvsmom]

  Yeah!  It is so incredibly stressful not to know and have to wait for testing.  I'm glad you know for sure!!

Some doctors won't push the biopsy if you have a couple of negative tests and symptoms. Dr Fasano says a celiac should meet 4 out of 5 of his criteria to get a diagnosis.  That would include genetic tests and a positive response to the gluten-free diet (over many months). Open Original Shared Link

My doctor let me skip the biopsy, and there was no genetic testing available.