Diagnosis

[Kmorley]

Hi 

I had a positive coeliac ttg result of 205 back in February and due to covid only recently had a biopsy.

My biopsy came back normal but my consultant isn't happy with that he is adamant I have coeliac due to having all the symptoms and a positive ttg. I now have to undergo more tests and he doesnt want to do the biopsy again unless necessary due to my reaction when under sedation.

He has now told me to start on a gluten free diet until I get my letter to book in for more tests.

I dont know what to think now do I have it or do I not and what are the chances of having a false positive result with a ttg level of 205.

 

Sorry for the long winded question im just very confused.

[trents]

False positives on both the blood tests and endoscopy do happen and a number of our forum members can attest to that. Not every GI doc seems to do a good job of taking the biopsies in the right place to show the disease. The proof is in the pudding, so to speak. If you feel better after a few months on the gluten-free diet that is all you need.

[Scott Adams]

I think the chances of a false positive blood test is rather small compared to the chance of a false negative biopsy result. Any chance you can share the details if your blood test results, including the scale they use?

[Kmorley]

On 11/16/2020 at 2:56 AM, Scott Adams said:

I think the chances of a false positive blood test is rather small compared to the chance of a false negative biopsy result. Any chance you can share the details if your blood test results, including the scale they use?

I am not to sure to be honest. Alls I know is my ttg result was 205, I was slightly anemic and have vitamin D deficiency. Doctors in the UK are very vague with what information they share with you and could not give me an explanation as to why my ttg result was so high but my biopsy was normal.

[trents]

High antibody scores with negative biopsy is certainly not a rare phenomenon. Several forum posters have shared the same experience. I would likely attribute that to the skill/experience (or lack of it) of the one doing the biopsy. It's not uncommon for the physician doing the biopsy to miss the affected area of the small bowel and take the samples instead from unaffected areas.

[Kmorley]

14 minutes ago, trents said:

High antibody scores with negative biopsy is certainly not a rare phenomenon. Several forum posters have shared the same experience. I would likely attribute that to the skill/experience (or lack of it) of the one doing the biopsy. It's not uncommon for the physician doing the biopsy to miss the affected area of the small bowel and take the samples instead from unaffected areas.

Thank you, I've got to undergo more tests when I finally receive my letters through the post that I am still waiting for 6 weeks later. I have been put on a gluten free diet now so just got to see what comes of everything.

[trents]

Being on a gluten-free diet will likely invalidate any tests done for Celiac Disease.

[Kmorley]

12 minutes ago, trents said:

Being on a gluten-free diet will likely invalidate any tests done for Celiac Disease.

My consultant said the tests I will be having will not be affected by me going on a gluten free diet

[trents]

Can you be more specific about the tests? I am not aware of any testing for Celiac Disease that would not be affected by going on a gluten-free diet for any length of time.

"Consultant?" Is this person a physician? 

If you research this question I don't think you will find this consultant's advice to be true.

[RMJ]

If the TTG result goes down on the gluten free diet that would be another indicator that you have celiac disease.

[Kmorley]

I have no idea i have to have more blood tests and he said we will take it from there. I think that is why I have to start the diet to see if the ttg levels drop. The doctor specialises in coeliac. He says I have all the symptoms the ttg result to back it up he just doesn't want to repeat the biopsy as I didnt do well with the first one.

[frieze]

Perhaps checking for genes, as well?

[Kmorley]

I finally received my letter and some of the tests I have to have are HLA DQ2 & DQ8, antigliadin test, they are redoing my TTG and there was something else but I can't remember what it was.

[Scott Adams]

Let us know how it turns out!

[Kmorley]

38 minutes ago, Scott Adams said:

Let us know how it turns out!

I will do, thanks for everything had my bloods done Monday so hopefully should get my results after Christmas.

[GFinDC]

Hi Kmorley,

the HLA tests are the gene tests.  They don't require you to be on a gluten-free diet.  Anybody can take the gene tests at any time.

The antibody tests do depend on eating gluten for a while before them.  But if your doctor is trying to verify the antibodies have declined since starting the gluten-free diet, then you don't need or want to eat gluten before them.

Did you feel any difference on the gluten-free diet?

[Kmorley]

12 minutes ago, GFinDC said:

Hi Kmorley,

the HLA tests are the gene tests.  They don't require you to be on a gluten-free diet.  Anybody can take the gene tests at any time.

The antibody tests do depend on eating gluten for a while before them.  But if your doctor is trying to verify the antibodies have declined since starting the gluten-free diet, then you don't need or want to eat gluten before them.

Did you feel any difference on the gluten-free diet?

There was about 8 different tests and when my nurse contacted the pathology lab one of the tests that was requested was for transfusions so she was just as confused as me. 

I do feel a lot better to be honest I don't feel bloated anymore and a few other symptoms seem to have settled. It is just the cost of the foods now lol.

[GFinDC]

15 hours ago, Kmorley said:

There was about 8 different tests and when my nurse contacted the pathology lab one of the tests that was requested was for transfusions so she was just as confused as me. 

I do feel a lot better to be honest I don't feel bloated anymore and a few other symptoms seem to have settled. It is just the cost of the foods now lol.

Feeling better is great!

Your body must be having some kind of reaction to gluten if you feel different after stopping eating gluten.  There are multiple antibody tests that they do for a complete celiac test panel.  DGP IgA, DGP IgG, EMA, total serum IgA, ttg IgA,  All these different antibody types are relevant and a positive on any of them can indicate celiac disease.

If you concentrate on eating  meats, veggies, eggs, nuts and fruit your diet won't be any more expensive than any other person who eats those naturally gluten-free foods.  Also, eating naturally gluten-free foods it is easier to avoid accidental gluten consumption.  Processed foods are always more risky than naturally gluten-free whole foods.

You may find it better to avoid oats and milk for  few months too.  Our intestinal villi make an enzyme called lactase that helps digest the sugar called lactose in cow dairy.  So dairy can be hard to digest  for a few months during healing.  After the villi grow back they may start making that lactase enzyme again.

Some 10% or so of people with celiac also react to oats.  So it's not a bad idea to avoid the oats for a few months just in case you are one of those 10%.  If you are one of those 10% you'll have a hard time recovering while eating oats.

Edited December 17, 2020 by GFinDC

[Kmorley]

22 minutes ago, GFinDC said:

Feeling better is great!

Your body must be having some kind of reaction to gluten if you feel different after stopping eating gluten.  There are multiple antibody tests that they do for a complete celiac test panel.  DGP IgA, DGP IgG, EMA, total serum IgA, ttg IgA,  All these different antibody types are relevant and a positive on any of them can indicate celiac disease.

If you concentrate on eating  meats, veggies, eggs, nuts and fruit your diet won't be any more expensive than any other person who eats those naturally gluten-free foods.  Also, eating naturally gluten-free foods it is easier to avoid accidental gluten consumption.  Processed foods are always more risky than naturally gluten-free whole foods.

You may find it better to avoid oats and milk for  few months too.  Our intestinal villi make an enzyme called lactase that helps digest the sugar called lactose in cow dairy.  So dairy can be hard to digest  for a few months during healing.  After the villi grow back they may start making that lactase enzyme again.

Some 10% or so of people with celiac also react to oats.  So it's not a bad idea to avoid the oats for a few months just in case you are one of those 10%.  If you are one of those 10% you'll have a hard time recovering while eating oats.

Thanks for that honestly, I dont know when I will get my results back. Had a mistake of having the Christmas Dinner at work yesterday and having a very bad day today so it just show that gluten is affecting me.

[GFinDC]

Hi K,

The first 6 months or so of the gluten-free diet are the hardest IMHO.  After that people generally learn the basics and have made enough mistakes to learn to eat less riskily, if that's a wurd.

 The holidays are a bit disturbing to some people who are gluten-free because of all the holiday foods they can't eat.  Other people may have reason to be depressed around the holidays but we have reason to be downright grouchy.  

It all gets easier with time and experience though.  There are gluten-free holiday cookie recipes that float around the web some near Christmas.  There may even be gluten-free cookie recipes on this forum.  Flour free peanut butter cookies comes to mind, but I haven't made them in a while.

For the baking adverse there are Enjoy Life brand gluten-free cookies and others.  And gluten-free breads are available and dairy free ice cream subs.  Etc, etc.

There was a what's for dinner tonight thread a while back with lots of ideas in it.  And a microwave bun thread too.

You'll be an expert in no time!

 

Edited December 17, 2020 by GFinDC

[Kmorley]

1 hour ago, GFinDC said:

Hi K,

The first 6 months or so of the gluten-free diet are the hardest IMHO.  After that people generally learn the basics and have made enough mistakes to learn to eat less riskily, if that's a wurd.

 The holidays are a bit disturbing to some people who are gluten-free because of all the holiday foods they can't eat.  Other people may have reason to be depressed around the holidays but we have reason to be downright grouchy.  

It all gets easier with time and experience though.  There are gluten-free holiday cookie recipes that float around the web some near Christmas.  There may even be gluten-free cookie recipes on this forum.  Flour free peanut butter cookies comes to mind, but I haven't made them in a while.

For the baking adverse there are Enjoy Life brand gluten-free cookies and others.  And gluten-free breads are available and dairy free ice cream subs.  Etc, etc.

There was a what's for dinner tonight thread a while back with lots of ideas in it.  And a microwave bun thread too.

You'll be an expert in no time!

 

Thank you so much, you don't understand how much this is all helping at the moment. 🙂

My health isn't doing to good at the moment as well as dealing with ceoliac so listening to others is helping. So thank you honestly. 🙂

[Kmorley]

Hi everyone so..........

This is where I am at now, I have had more blood tests but not heard anything back yet. I have had a telephone call with the dietician as our current lockdown restrictions won't allow use to go into a doctors surgery or hospital. She has said there is a lot of confusion with my results and the consultant is trying his best to find your diagnosis as my ttg levels are 205.

I am still on the gluten free diet but just getting very frustrated as I don't have a diagnosis yet after a year.

Anyone any ideas? 

[Scott Adams]

Many doctors are now diagnosing celiac disease based on blood tests alone, especially if your results are 10x the celiac level range. If you can find the celiac disease cut off level for your ttg test and share it, it would be more helpful. For example, if it were 20, then you'd be 10x the celiac level.