Suggestive but not conclusive…now what?

[musicalmummy]

My daughter tests came back to say they are suggestive of coeliac but not conclusive so we need to see the dr and he’ll discuss what we do from there. 

[cnazrael89]

I am in no shape or form an expert, as I am just learning about Celiac as I go by reading on here and other links that are posted. However, in my opinion if your daughter had celiac symptoms, positive blood screening and an EGD/biopsy with results "suggestive of Celiac", I would think it would be safe to say she has Celiac disease? My endoscopy is tomorrow and I can honestly say if the results say in any way "suggestive of Celiac", I am taking that as gold for me as I had both ttg-iga and dgp-igg positive. That is my personal opinion, and it sounds like you will still be having an appointment to discuss your results with your doctor. Honestly, I am going gluten free regardless of the EGD biopsy results simply because I had 2 different positive blood tests that are highly specific to Celiac. Just my two cents for what they are worth. I'm sure you will get some good responses from moderators on here. They have such helpful information to help guide your thinking!

[cnazrael89]

Also, maybe the results of the biopsy aren't blatantly obvious and the villi aren't too damaged yet because your daughter is young and you got a diagnosis early? Just another thought...

[jordan-fre]

Imo from my own experience, suggestive should be treated as conclusive. I was given the suggestive diagnosis 13 years ago and just last week got news that my celiac disease is not in control (Marsh 3, active celiac). While I have been gluten-free, I was not diligent about cross-contact. In the back of my mind, this suggestive diagnosis I think gave me some unspoken permission to not be as serious as I should have been. This is just my story and yours may be different, but if I could go back in time, I would really press my doctor to explain how something can be suggestive and what follow up tests I need to make sure I stay in a healthy range. 

[trents]

11 hours ago, musicalmummy said:

My daughter tests came back to say they are suggestive of coeliac but not conclusive so we need to see the dr and he’ll discuss what we do from there. 

Specifically, what blood tests were suggestive of celiac disease? What is the name of the test or tests that must have been in the positive range and what were the actual numbers, including the reference range for negative vs. positive. Do you have that information and can you post it? Has there also been a biopsy done? You don't mention that in your first post but other responses in this thread indicate a biopsy has been done. Is this covered in another thread?

[Scott Adams]

Please share your daughter's test results here if possible. I find this middle "suggestive of celiac disease" diagnosis rather odd, but to me it sounds like a positive diagnosis, and she has celiac disease.

[musicalmummy]

I’ve attached her initial blood results.

I am unable to attack the notes we got back about the gastroscopy. These were the notes given the day of the procedure not her actual results of course. These are what led to the suggestive but not conclusive..

 

the notes say

”the oesophagus was normal

the stomach was normal

mildly atrophic mucosa was found in the duodenal bulb”

[trents]

musicalmummy, try attaching those gastroscopy results in a fresh post. You have a limited time windows where you can edit posts or add attachments. This is to discourage scammers who try to get an innocent looking post approved and then try add malicious material to it.

Did you notice the note suggesting that "first and second degree relatives get screened"? A recent study by the Mayo Clinic found that 44% of first degree relatives of those with confirmed celiac disease also had it when tested, even though most of them probably had no clue.

Edited October 24, 2022 by trents

[musicalmummy]

32 minutes ago, trents said:

musicalmummy, try attaching those gastroscopy results in a fresh post. You have a limited time windows where you can edit posts or add attachments. This is to discourage scammers who try to get an innocent looking post approved and then try add malicious material to it.

Did you notice the note suggesting that "first and second degree relatives get screened"? A recent study by the Mayo Clinic found that 44% of first degree relatives of those with confirmed celiac disease also had it when tested, even though most of them probably had no clue.

Still won’t let me, says file too big.

I did see that section. I was screened after her as I was sure I would’ve had it given symptoms but mine are negative. I will also do the rest of the family. 

[Scott Adams]

The two blood test results you posted for celiac disease are strongly positive, and it looks like the biopsy results are positive as well, as "mildly atrophic mucosa was found in the duodenal bulb" is the area where damage from celiac disease occurs. 

[trents]

52 minutes ago, musicalmummy said:

Still won’t let me, says file too big.

I did see that section. I was screened after her as I was sure I would’ve had it given symptoms but mine are negative. I will also do the rest of the family. 

There are freeware apps that will remove pixels from pictures to reduce the data size of the file without dinging quality much. Irfanview is one I'm familiar with.

Edited October 24, 2022 by trents

[RMJ]

Was the “suggestive of coeliac” from visual observation of her duodenum?  Or the pathology results from the biopsy? Was it written by a different doctor than the one who ordered the blood tests? It may just be “doctor speak” from someone who just has partial information.

My guess is that when her gastroenterologist puts together the blood results and endoscopy results she will have a conclusive diagnosis of celiac disease. 

[musicalmummy]

1 minute ago, RMJ said:

Was the “suggestive of coeliac” from visual observation of her duodenum?  Or the pathology results from the biopsy? Was it written by a different doctor than the one who ordered the blood tests? It may just be “doctor speak” from someone who just has partial information.

My guess is that when her gastroenterologist puts together the blood results and endoscopy results she will have a conclusive diagnosis of celiac disease. 

It was the result from the biopsy and the gastroenterologist admin passed  on the message by phone call to us. The gastro also has her blood results 

[RMJ]

In that case, it sounds like the sort of thing a pathologist would say in a biopsy report. My biopsy report included other disorders that could cause the change in villi that was seen, even though the pathologist was aware of and mentioned the blood test results. 

Please let us know what the gastro says when you see him/her!