Is an Endoscopy essential? Seeking further information. Pathology included - based in Australia

[Gracej22]

Hello everyone,

So i have been having some symptoms since February 2022.

I had a baby Jan 2022 and a month later my symptoms started.  6 weeks ago i went to see my GP and she ordered heaps of tests.

symptoms: Nausea, Constipation, Itchy Skin, Anxiety, headaches, migraines - had lots of testing done and my Coeliac test came back positive.

Anti-Gliadin IgG: 49 U/mL Ref <7

t-Transglutaminase IgA: 118 Ref: <7

So my Dr said you have Celiac numbers are very high, gave me some information sheets and said i must have an endoscopy and biopsy to confirm as its gold standard.

I didnt have a chance to ask further questions. Im going back in 3 weeks to talk again.

My thoughts:

I really dont want an Endosopy. I have severe health anxiety and going into a hospital gives me panic attacks. I find it to be invasive and simply dont want it.

I want to take control of my own health and stop eating gluten now. I feel miserable, nauseous every single day. My dr said i cant stop eating gluten until i have this biopsy which may be 6+ months away on the public wait list. My test seems to be very high numbers? Is this enough to confirm and stop eating gluten now?

Can anyone help me with some questions.

1. Is there any other way i can confirm Celiac without an Endoscopy? Repeat testing once stopping gluten to see if its gone down?

2. Can the blood results indicate any other diseases other than celiac?

3. How can i talk to my Dr about this? and ask her to diagnose me alternate way?

4. If i dont have the biopsy will i still be able to be tested for follow up testing? For example iron levels, thyroid etc?

5. Any advice welcome 

Thanks for reading and looking forward to responses

 

 

[cristiana]

2 hours ago, Gracej22 said:

Hello everyone,

So i have been having some symptoms since February 2022.

I had a baby Jan 2022 and a month later my symptoms started.  6 weeks ago i went to see my GP and she ordered heaps of tests.

symptoms: Nausea, Constipation, Itchy Skin, Anxiety, headaches, migraines - had lots of testing done and my Coeliac test came back positive.

Anti-Gliadin IgG: 49 U/mL Ref <7

t-Transglutaminase IgA: 118 Ref: <7

So my Dr said you have Celiac numbers are very high, gave me some information sheets and said i must have an endoscopy and biopsy to confirm as its gold standard.

I didnt have a chance to ask further questions. Im going back in 3 weeks to talk again.

My thoughts:

I really dont want an Endosopy. I have severe health anxiety and going into a hospital gives me panic attacks. I find it to be invasive and simply dont want it.

I want to take control of my own health and stop eating gluten now. I feel miserable, nauseous every single day. My dr said i cant stop eating gluten until i have this biopsy which may be 6+ months away on the public wait list. My test seems to be very high numbers? Is this enough to confirm and stop eating gluten now?

Can anyone help me with some questions.

1. Is there any other way i can confirm Celiac without an Endoscopy? Repeat testing once stopping gluten to see if its gone down?

2. Can the blood results indicate any other diseases other than celiac?

3. How can i talk to my Dr about this? and ask her to diagnose me alternate way?

4. If i dont have the biopsy will i still be able to be tested for follow up testing? For example iron levels, thyroid etc?

5. Any advice welcome 

Thanks for reading and looking forward to responses

 

 

Hello Grace, and welcome to the forum.

Firstly, I would say your tTG numbers look strongly indicative of coeliac disease.

I do understand your not wanting to have an endoscopy.   Whilst it is normally seen as the gold standard for diagnosis, in the UK over the various lockdowns I understand that the rules regarding an endoscopy were relaxed.  

This from the Coeliac UK website explains things further:

"...an endoscopy might not be needed to diagnose coeliac disease. Guidelines published in June 2020 in response to the Covid-19 pandemic recommend that some adults can be diagnosed without the need for a biopsy if they:

are 55 years or younger

don't need an endoscopy to rule out another condition

have symptoms of coeliac disease

have very high antibody levels (if IgA tTG is at least 10 times the upper limit of normal)

and have a second positive antibody blood test (EMA or IgA tTG if EMA is not available)"

https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/

You could perhaps show this information to your doctor and see what they say about it?

However, if this forum is anything to go by, it seems that British hospitals are offering endoscopies again.  That said, with COVID cases rising rapidly in the UK again this may not last...

I know that in this country there are considerable benefits of having a proper diagnosis, which normally entails an endoscopy: A follow-up appointment with a nutritionist, DEXA bone scans, annual blood tests and reviews with a gastroenterologist.   I suspect Medicare in Australia will be similar.   

Whether you can have access to this or not without an endoscopy I cannot say.  We do try to help as much as we can on this forum, but not being conversant with the Australian system I think it might be best to contact Coeliac Australia for their advice on where you stand with an endoscopy and whether you must have one in order to be entitled to such follow-up.

https://www.coeliac.org.au/s/coeliac-disease

For what it is worth, I wasn't at all keen on the idea of having an endoscopy but now, having had three in total, I can't say it is my favourite way to spend an afternoon but they don't faze me anymore.  🙂

Do come back to us if you have any more questions.

Cristiana

Edited July 18, 2022 by cristiana

[trents]

3 hours ago, Gracej22 said:

Hello everyone,

So i have been having some symptoms since February 2022.

I had a baby Jan 2022 and a month later my symptoms started.  6 weeks ago i went to see my GP and she ordered heaps of tests.

symptoms: Nausea, Constipation, Itchy Skin, Anxiety, headaches, migraines - had lots of testing done and my Coeliac test came back positive.

Anti-Gliadin IgG: 49 U/mL Ref <7

t-Transglutaminase IgA: 118 Ref: <7

So my Dr said you have Celiac numbers are very high, gave me some information sheets and said i must have an endoscopy and biopsy to confirm as its gold standard.

I didnt have a chance to ask further questions. Im going back in 3 weeks to talk again.

My thoughts:

I really dont want an Endosopy. I have severe health anxiety and going into a hospital gives me panic attacks. I find it to be invasive and simply dont want it.

I want to take control of my own health and stop eating gluten now. I feel miserable, nauseous every single day. My dr said i cant stop eating gluten until i have this biopsy which may be 6+ months away on the public wait list. My test seems to be very high numbers? Is this enough to confirm and stop eating gluten now?

Can anyone help me with some questions.

1. Is there any other way i can confirm Celiac without an Endoscopy? Repeat testing once stopping gluten to see if its gone down?

2. Can the blood results indicate any other diseases other than celiac?

3. How can i talk to my Dr about this? and ask her to diagnose me alternate way?

4. If i dont have the biopsy will i still be able to be tested for follow up testing? For example iron levels, thyroid etc?

5. Any advice welcome 

Thanks for reading and looking forward to responses

 

 

Answers in order of your questions:

1. Technically, no. Endoscopy with biopsy is indeed the gold standard. However, in the UK doctors are assigning an official diagnosis of celiac disease when the tTG-IGA antibody score is 10x greater than normal range, which yours is. There is not doubt in my mind that you have celiac disease given those numbers and your classic symptoms.

2. Technically, yes. But usually, when it's something else besides celiac disease the numbers are only slightly above normal. Not applicable in your case.

3. There is no other "alternate way" to diagnose celiac disease. Antibodies and biopsy are the only two. You can always refuse any test a doctor wants to do. They can't force you to do anything. Share with the doctor how they often skip bipsies in the UK when test results are 10x normal.

4. Yes.

5. In the US, you would likely have conscious sedation for the endoscopy and you would not even remember the procedure. I don't know if the do that where you live but you could ask for sedation.

[Scott Adams]

Please see this article, and your numbers are definitely in the 10x tTg positive level that should exclude you from needing a biopsy, however, not all doctors are on board with this newer concept in diagnosis: