Weak Positive, Negative Biopsy

[Teetee]

Hello,

First time posting - hoping for help/opinions/support

I have a long standing history of digestive issues, namely constipation and bloating, a family history of coeliac (my mother was diagnosed in 2012), positive gene test, vit d &b12 deficiencies and past hx of thyroiditis and miscarriage.

In December 2013, during routine bloods done by my doctor, I received the following results:

Deamidated gliadin iga - 14 (

[1desperateladysaved]

I am not sure exactly what all you wanted to know.  If you did a blood test and than endoscopy, it is time to learn to be 100% gluten free.  Than you can see if you will respond to the diet.  That would be the real gold standard test, a reponse to the gluten free diet.  This is a good place to learn about the diet and what to do.

 

D

[GottaSki]

Welcome!

 

What was the range of the DGP IgA?  Did you have a complete celiac antibody panel?

 

A positive means your body is creating antibodies to one of the peptides in gluten protein.

 

With symptoms, genetic link, nutrient deficiency and a positive antibody test - if all testing is complete it is time to remove all gluten to monitor symptom improvement and re-test the DGP-IgA along with deficient nutrients 3-6 months later to compare results.

 

Good Luck

[Teetee]

Sorry - it doesn't appear that my whole post posted. Maybe cause I'm new.

Dgp iga 14 (>15)

Dgp igg 55* (>15)

Ttg iga 22* (>15)

Ttg igg 11 (>15)

Endomysial not detected

My GP was of the opinion that it was very likely, with my family history and predisposition that I had coeliacs. She said you'll goo get your biopsy, go gluten free and hopefully feel better.

I went to the GI and he said I only had a weak positive, he didn't think my constipation and bloating was coeliac and because I was not privately insured, if I wanted the biopsy I would need to pay upfront. It was at this point that I asked whether the biopsy was warranted at this time - should we wait and see what my numbers do. He said no, with my factors I should have the test. It would tell me once and for all, it's definitive and gold standard etc.

Long story short, it was negative - I received a phone call to advise. Gluten is not he cause for my symptoms. And whilst he isn't abandoning my case - case closed. I don't have coeliac.

I'm frustrated, I'm unwell, I'm bloated, and out of pocket $1200. I guess what I want to know is what you think I should do - what do you think my numbers mean. We are planning on starting a family in the next 12 months - which my GI said I would need yo put off if I had coeliac. Sorry - I did post all this in the first post but it didn't come up. Hope this makes a bit more sense.

[moosemalibu]

Sorry - it doesn't appear that my whole post posted. Maybe cause I'm new.

Dgp iga 14 (>15)

Dgp igg 55* (>15)

Ttg iga 22* (>15)

Ttg igg 11 (>15)

Endomysial not detected

My GP was of the opinion that it was very likely, with my family history and predisposition that I had coeliacs. She said you'll goo get your biopsy, go gluten free and hopefully feel better.

I went to the GI and he said I only had a weak positive, he didn't think my constipation and bloating was coeliac and because I was not privately insured, if I wanted the biopsy I would need to pay upfront. It was at this point that I asked whether the biopsy was warranted at this time - should we wait and see what my numbers do. He said no, with my factors I should have the test. It would tell me once and for all, it's definitive and gold standard etc.

Long story short, it was negative - I received a phone call to advise. Gluten is not he cause for my symptoms. And whilst he isn't abandoning my case - case closed. I don't have coeliac.

I'm frustrated, I'm unwell, I'm bloated, and out of pocket $1200. I guess what I want to know is what you think I should do - what do you think my numbers mean. We are planning on starting a family in the next 12 months - which my GI said I would need yo put off if I had coeliac. Sorry - I did post all this in the first post but it didn't come up. Hope this makes a bit more sense.

 

 

How many biopsies did he take? Sometimes the damage to the villi can be patchy and if only one or two biopsies are taken then it can miss the damage. Were you eating gluten prior to your biopsy? If you were gluten free that can also affect your results.

 

If you have a family history,have multiple deficiencies and symptoms -- I think now would be the time to cut gluten from your diet and see how you do. Sometimes a formal missed diagnosis is not your fault - sometimes the doctors fail you. But if you are strapped for cash and running out of options I would just try the gluten free diet and see if your symptoms and blood values improve.

[GottaSki]

You have numerous symptoms, the genetics, nutrient deficiencies and TWO positive antibody tests.

 

Forgive me if I question this GI's conclusion.  From your description he is practicing based on outdated information.  Do be sure to request written or electronic copies of both the procedural and pathology reports which will show how many samples were taken and if there are any indications of early celiac damage.

 

It is time to remove ALL gluten to watch for symptom improvement or possible resolution.   Let your primary know you are doing so and will only need follow up antibody and nutrient tests after you have been gluten free for three or six months.  Ask if they can prescribe necessary vitamins to bring your D and B12 to optimum levels or if over the counter supplements would be sufficient.  Are you currently on thyroid medication?  If so, add monitoring the need for adjusting these if your symptoms improve gluten-free.  

 

Miscarriage is one of the most heartbreaking results of undiagnosed celiac.  Your desire for children alone is a valid reason to remove gluten.  I can only suggest that you give your body some time gluten free before becoming pregnant....because if you do indeed have Celiac...which I strongly suspect....giving your body a chance to heal can only help both you and your future children.

 

Let us know what you decide and if you have any questions.

 

Hang in there

[Teetee]

How many biopsies did he take? Sometimes the damage to the villi can be patchy and if only one or two biopsies are taken then it can miss the damage. Were you eating gluten prior to your biopsy? If you were gluten free that can also affect your results.

 

If you have a family history,have multiple deficiencies and symptoms -- I think now would be the time to cut gluten from your diet and see how you do. Sometimes a formal missed diagnosis is not your fault - sometimes the doctors fail you. But if you are strapped for cash and running out of options I would just try the gluten free diet and see if your symptoms and blood values improve.

Hi moose, thankyou for your reply.

I am not sure how many biopsies were taken - throughout the entire process, I wasn't comfortable with my GI - I found him to be really dismissive ( just my opinion) and when I received the phone call, I did not feel comfortable asking him. I will however consult my go and talk through the report with her. I assume she would have received a copy with the GI's report.

I was definitely ingesting gluten at he time of the testing. I was consuming it prior to my bloods and increased my consumption when I found out I was referred to the GI. Prior to my mum's diagnosis, I cut down on a lot of gluten - mostly bread and pasta. I wasn't hopping on board with the fad - I didn't even know what coeliac a was - but I noticed that I felt better when I wasn't eating it. I started back on it when mum was diagnosed, knowing that I would need to be tested at some point.

From my point of view - I was pursuing a diagnosis not only to feel better, but also for the future of my health - I'm well aware of the implications of untreated coeliacs and I wanted to be in top health to get pregnant - I guess a previous miscarriage rattles you a bit and I wanted to remove any risk. I had a two rounds of negative bloods following mum's diagnosis and it was a relief - for myself, my mum and my gp that it had finally shown up.

Does anyone know if my results are weak positive? They didn't supply the ranges - only that >15 was an elevation or abnormality.

[GottaSki]

Positive is positive.  Your DGP-IgG is a very strong positive and your tTG-IgA is well into positive. You mention having other negative antibody tests within the past couple years.  Have your symptoms worsened between these rounds of tests?

 

Edited to add...don't assume your primary will have copies of these reports...call to verify they have both procedural and pathology reports.  If not, request copies yourself.

[nvsmom]

I agree. That DGP IgG is 3X theupper normal limit - that's not a weak positive. And then to have two positive tests? That's pretty much a sure thing.  Your GI sounds uninformed.

 

Take a look at pages 10-12 of this report. Open Original Shared Link  As you can see from the chart, the DGP IgG test is 99-100% specific to celiac disease. That means that out of 100 positive tests, 99-100 of them are caused by celiac  it doesn't get much more positive than that! The tTG IgA is also another great test.

 

My guess is that they missed the damage in your intestines. The surface area of the small intestine is that of a tennis court - that's a lot of area to cover.

 

Good luck with the gluten-free. I hope you have a speedy recovery and are able to expand your family in the future.

[Teetee]

Thank you all for taking the time to reply. 

 

I will definitely let my GP know - I am hoping that she will support my choice and take my results seriously - i don't know if she would be willing to "diagnose" based on this - i felt it was important to be diagnosed for family and friends to take all of this seriously. I know i may never get a "diagnosis" as such. I know many others struggle with this but I find people more understanding and compliant with dietary needs if you have the "label" of being a coeliac.

 

You have numerous symptoms, the genetics, nutrient deficiencies and TWO positive antibody tests.

 

Forgive me if I question this GI's conclusion.  From your description he is practicing based on outdated information.  Do be sure to request written or electronic copies of both the procedural and pathology reports which will show how many samples were taken and if there are any indications of early celiac damage.

 

It is time to remove ALL gluten to watch for symptom improvement or possible resolution.   Let your primary know you are doing so and will only need follow up antibody and nutrient tests after you have been gluten free for three or six months.  Ask if they can prescribe necessary vitamins to bring your D and B12 to optimum levels or if over the counter supplements would be sufficient.  Are you currently on thyroid medication?  If so, add monitoring the need for adjusting these if your symptoms improve gluten-free.  

 

Miscarriage is one of the most heartbreaking results of undiagnosed celiac.  Your desire for children alone is a valid reason to remove gluten.  I can only suggest that you give your body some time gluten free before becoming pregnant....because if you do indeed have Celiac...which I strongly suspect....giving your body a chance to heal can only help both you and your future children.

 

Let us know what you decide and if you have any questions.

 

Hang in there

 

Thanks GottaSki - following my bloods - i did a lot of reading up on the condition and I did feel that my GI's approach was a little "old school". His approach was very black and white and I was shocked that a diagnosis was ruled out given what has now been revealed about patchy damage and the unreliable nature of the biopsy. The new way of doing things seems to be to have a more pragmatic approach - considering all the factors. The fact that he discounted all of mine based on the biopsy floored me. 

 

I feel exactly the same about the possibility of further miscarriage and infertility. Coeliac was not thought to be the culprit for my previous M/C - it was felt that maybe the thyroiditis was and this is how that issue was identified. I am not medicated for my thyroid. My gp monitors the function and antibodies every 6 months or so, but its not severely failing so we have left it for the time being. My next review is in April - in anticipation for getting pregnant. 

 

My digestive/fatigue symptoms did not deteriorate prior to my positive bloods - I can't say that i noticed a difference between the negative and positive tests. Things have just been all round not good for a while now. 

 

I agree. That DGP IgG is 3X theupper normal limit - that's not a weak positive. And then to have two positive tests? That's pretty much a sure thing.  Your GI sounds uninformed.

 

Take a look at pages 10-12 of this report. Open Original Shared Link  As you can see from the chart, the DGP IgG test is 99-100% specific to celiac disease. That means that out of 100 positive tests, 99-100 of them are caused by celiac  it doesn't get much more positive than that! The tTG IgA is also another great test.

 

My guess is that they missed the damage in your intestines. The surface area of the small intestine is that of a tennis court - that's a lot of area to cover.

 

Good luck with the gluten-free. I hope you have a speedy recovery and are able to expand your family in the future.

 

Thank you for providing that report Nvsmom. I was lead to believe by my GI that if I had a negative biopsy - the bloods were a false positive. I am feeling like less of a fraud now - I think this is just something I need to get my head around and accept - not having a formal diagnosis. 

 

Thank you again for your comments and support - much appreciated. 

[Cara in Boston]

Your second doctor is just plain wrong.

 

A negative biopsy only means damage was not found . . . not that it is not there.  There could be lots of reasons they didn't find damage.  The biopsy only CONFIRMS a diagnosis of Celiac, it does not rule it out.  

 

There is no such thing as a "weak" positive.  A positive blood test is a positive blood test.  You've had two.

 

The "final test" is the diet.  Start it right away and see if you feel better.  

 

You have family history, classic symptoms, and two positive blood tests.  A biopsy isn't even needed.  What is needed, is an informed doctor.

 

I had all the classic symptoms and a positive blood test.  My biopsy was negative.  After going gluten free, all my symptoms (and some I didn't even realize!) went away.  My son was diagnosed with Celiac (positive blood and biopsy) and I was "technically" diagnosed with "gluten intolerance"   even though all my doctors agree that I have celiac too.

 

You don't need a doctor's permission to eat gluten free.  Trust your instincts on this.

[Teetee]

Hi Cara,

Thank you for your reply - appreciate your comments.

This is not the first time I have heard that "there is no such thing as a weak positive". In he situation where you are consulting a reputable specialist - you just assume that what he is saying is correct.

I have been gluten-free for 1 week now, since last Wednesday. I can't believe the change in how I feel and the resolution of my digestive symptoms. I wouldn't say I'm 100%, but I'm on the road to getting there and I feel great. I used to have 1 good day, then 4-5 bad ones. I've now had 7 good days in a row. I am going to stay gluten-free for 6 months and then I would be keen to challenge it for a few days, just to see if the symptoms return. But overall, this is me now, gluten free.

I will consult my Gp next month to fill her in on my current status and see what she thinks. My only annoyance with not having an official diagnosis is the lack of after care and monitoring. Hopefully my Gp will continue to do this for me irrespective of a diagnosis.

[GottaSki]

I am going to stay gluten-free for 6 months and then I would be keen to challenge it for a few days, just to see if the symptoms return. But overall, this is me now, gluten free.

I will consult my Gp next month to fill her in on my current status and see what she thinks. My only annoyance with not having an official diagnosis is the lack of after care and monitoring. Hopefully my Gp will continue to do this for me irrespective of a diagnosis.

 

Good plan...be sure to have your celiac antibody panel drawn again before you trial gluten again in 6 months.  Really the only follow up needed is annual antibody panel/nutrient levels after the first six month check as long as you improve gluten-free....your GP should be able to do this for you.

 

Oh and make sure you obtain written copies of the endoscopic reports....there may be information on either the procedural or pathology report that helps put the puzzle together.

 

Glad to hear you have already had some improvement...great news!