Could it be? Next steps?

[CeeBee1807]

Hi all, 

 

I have been experiencing a whole host of symptoms over the last year or so, with numerous trips to the doctor and i'm not really any further forward. Yesterday I was having a conversation with someone and they mentioned Celiac disease. I spent a while researching and I feel like this could possibly be behind whats going on but i'm not sure. 

My main symptoms were heartburn and chest pain, so the doctors have been focussed on these, which is fairly well managed with PPI's and H2 blockers but not resolved, so i've been put forward for a gastroscopy. 

My other symptoms include bloating, nausea, tingling in feet and hands, anxiety, greasy/pale stools and slight weight loss - although I think this is down to me being cautious about what I eat.  I had a number of blood tests done and these have shown low folate levels and also raised liver enzymes - which looking at it could be attributed?! I also appear to have become somewhat lactose intolerant. 

My nan does have Celiac disease.

Now my main question is, 1, could this be Celiac disease or am I clutching at getting a resolution finally? and 2, Should I be asking my doctor for a blood test, or do I just wait until my gastroscopy? I'm not sure if they will look for that or not? and i'm not sure how long it will take ( I've waited 18 weeks for a tel appointment with the gastric team to tell me I need a gastroscopy). 

 

Thank you 🙏

[trents]

Welcome to the forum, @CeeBee1807!

Essentially all of the symptoms you list are classic celiac disease symptoms. By the way, what eventually led to my own celiac diagnosis was elevated liver enzymes.

Judging by some of the terms you employ (gastroscopy, nan) and the protracted wait times for scheduling procedures within your healthcare system, I'm guessing you live in the UK. If so, you might find it interesting to know that in the UK, doctors will often grant an official diagnosis of celiac disease based on high celiac antibody blood test scores alone. The figure I've heard for that is 10x the normal level. So, it is possible that if you got celiac blood testing done and got high positive scores you could forego the gastroscopy/biopsy altogether.

Having said that, please realize that you need to be consuming generous amounts of gluten for weeks ahead of any kind of celiac testing, whether it's blood antibody testing or the gastroscopy/biopsy in order for the testing to be valid. By generous amounts of gluten I mean at least 10g daily which is about the amount found in 4-6 slices of bread.

So, yes, my suggestion would be to schedule celiac blood antibody testing now if you can get that done relatively soon and don't skimp on the gluten. Make sure you request a total IGA test in addition to the ttg-IGA test. That is important. If you are IGA deficient, it may create a false negative in the tTG-IGA test. The total IGA test determines whether or not you are IGA deficient.

[CeeBee1807]

Hi Trent. 
 

Thank you for the welcome and your response. 
 

That is interesting regarding the elevated liver enzymes, my GP said they had no idea why they may be increased and recommended another blood test in 4 months to see if they were still raised and if so they would look to investigate further. 
 

I am indeed in the UK, so that is positive news and may hopefully speed up the process if it is indeed celiac disease. I’m obviously keen to cut gluten out as soon as possible so if it can be based on the blood test alone that could save me another few months of suffering! 
 

I will definitely get on to my GP and see if they will schedule the tests for me 🤞

As much as I would like it not to be, I’m also hoping that I may have finally found out the cause of the last year of misery.

Thanks again

CeeBee  

[trents]

CeeBee, you might find this interesting and even share it with your doctors: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7868701/

I hope you aren't insulted by this comment, but I have gotten the definite impression from following many postings on this forum that your healthcare system there in the UK is rather inflexible when it comes to ordering diagnostic testing and the patients seem to have little room for input. In part at least, this may be due to the system being overly stressed. When checking for celiac disease, many doctors in the UK will only order the TTG-IGA blood antibody test. Ideally, a more complete celiac antibody panel would be ordered which would include:

Total IGA

TTG-IGA

DGP-IGA

TTG-IGG

DGP-IGG

At bare minimum, at least the first two should be ordered. Please consider talking to your physician about this.

 

[CeeBee1807]

1 hour ago, trents said:

CeeBee, you might find this interesting and even share it with your doctors: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7868701/

I hope you aren't insulted by this comment, but I have gotten the definite impression from following many postings on this forum that your healthcare system there in the UK is rather inflexible when it comes to ordering diagnostic testing and the patients seem to have little room for input. In part at least, this may be due to the system being overly stressed. When checking for celiac disease, many doctors in the UK will only order the TTG-IGA blood antibody test. Ideally, a more complete celiac antibody panel would be ordered which would include:

Total IGA

TTG-IGA

DGP-IGA

TTG-IGG

DGP-IGG

At bare minimum, at least the first two should be ordered. Please consider talking to your physician about this.

 

Thank you, I will have a read through through this. 
 

No not insulted at all, you are completely correct.  It has always been this way to an extent with regards to reluctance in ordering further tests, but with current pressures it seems more difficult than ever. There are not enough GP appointments and I’m aware they are seeing more patients than ever. It’s difficult to explain all symptoms and go through history in 10 minutes, so I can see why we are where we are but, equally frustrating as I believe delving a little deeper could have possibly helped, a lot sooner. 
 

I really appreciate all the information on which tests I should be asking for, I think it won’t be as easy to brush me off if I’m confident in what I’m asking for. Hopefully I get a positive response. 

[trents]

I might suggest taking a bullet list with you to your next appointment with concisely worded symptoms and test requests. That would cut to the chase and economize the time you do have with the doc.

Edited October 2, 2024 by trents

[cristiana]

@CeeBee1807

Forgive the brevity of this post CeeBee as I cannot write a lengthier reply just now, but I have just read your post and wanted to say I think you are onto something. 

Do mention to your GP that you already have a relative with coeliac disease.

Do also take a look at the Coeliac UK website before you see the doctor, they have a whole section on  how to get diagnosed in the UK.

 

Edited October 2, 2024 by cristiana

[Wheatwacked]

Hello @CeeBee1807,

Find out if your gastroscopy will include biopsies for Celiac Disease.  Since the doctors haven't mentioned Celiac Disease to you, I have a feeling they will not.  You'll get an answer like, you have irritation. We don't know what the cause is.

[trents]

Wheatwacked makes an excellent point. Make a point to request that the gastroscopy specifically includes taking biopsies to check for the damage to the villous lining of the small bowel caused by celiac disease.

[AnnaNZ]

Trents and ceebee1807, which of your liver enzymes were elevated? Did they stay elevated long-term or did they fluctuate? 

[trents]

ALT and AST and they steadily increased over a period of seven years until I was diagnosed with celiac disease and went gluten free. Within three months of adopting a gluten free diet they were both back within normal range. They were never super high but, if I recall correctly, like you would see in someone with advanced cirrhosis but were chronically mildly elevated for a period of years and were slowly increasing with time.

[CeeBee1807]

9 hours ago, cristiana said:

@CeeBee1807

Forgive the brevity of this post CeeBee as I cannot write a lengthier reply just now, but I have just read your post and wanted to say I think you are onto something. 

Do mention to your GP that you already have a relative with coeliac disease.

Do also take a look at the Coeliac UK website before you see the doctor, they have a whole section on  how to get diagnosed in the UK.

 

Thank you cristiana, I will certainly mention it.

I will check out Coeliac Uk also, seems like I have a weekend of reading ahead but I want to make sure I go armed with all the correct information. 

[CeeBee1807]

2 hours ago, AnnaNZ said:

Trents and ceebee1807, which of your liver enzymes were elevated? Did they stay elevated long-term or did they fluctuate? 

Hi AnnaNZ.

AST and ALT I believe. I have only had one blood test which included liver function at this point, i'm currently waiting to be retested to see whether they are still elevated - this is due to be done in November.  

[CeeBee1807]

5 hours ago, Wheatwacked said:

Hello @CeeBee1807,

Find out if your gastroscopy will include biopsies for Celiac Disease.  Since the doctors haven't mentioned Celiac Disease to you, I have a feeling they will not.  You'll get an answer like, you have irritation. We don't know what the cause is.

Thank you Wheatwacked, this is very helpful. I wasn't sure if it was something that would routinely be done with a gastroscopy or if it was something they would be able to tell by looking, if you know what I mean. I will definitely ensure that this will be included. 

[cristiana]

@CeeBee1807

This is the webpage you need to look at, I imagine the reading material is building up!  However, I think NHS have some useful info on diagnosis in eh UK on their site.

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

I just wanted to add that I too had odd liver function tests.  Raised globulins, which with iron deficiency, rang alarm bells at my GP surgery.  She was very worried about me.   The levels kept fluctuating and it wasn't until I had gastric symptoms they realised that I should be tested for coeliac.  When I later told my gastroenterologist about my strange liver function test results he said they saw my particular issue with other coeliacs, and he wasn't worried at all.   On a gluten free diet my levels normalised, only if I am in a middle of a flare do they go back up again, usually because I've consumed gluten inadvertently along the way.