Help required regarding testing

[ROWAN6260]

Hi I am new here and a couple of weeks ago got a positive blood test for coeliac disease. I was having severe abdominal pain prior to blood test. Waiting for endoscopy test and advised to continue eating gluten until then. Once I got the news about the blood test my symptoms seen to have gone! A few questions- do symptoms come and go? Endoscopy test could be 6 months wait, will eating gluten for that period not cause a lot of damage? Can the blood test be wrong? Does anyone get an abdominal pain that feels like a pulled muscle? It's 1 of my symptoms, worried that more going on than coeliac. Worried about it being a tumour? Any advice much appreciated.

 

[cyclinglady]

8 hours ago, ROWAN6260 said:

Hi I am new here and a couple of weeks ago got a positive blood test for coeliac disease. I was having severe abdominal pain prior to blood test. Waiting for endoscopy test and advised to continue eating gluten until then. Once I got the news about the blood test my symptoms seen to have gone! A few questions- do symptoms come and go? Endoscopy test could be 6 months wait, will eating gluten for that period not cause a lot of damage? Can the blood test be wrong? Does anyone get an abdominal pain that feels like a pulled muscle? It's 1 of my symptoms, worried that more going on than coeliac. Worried about it being a tumour? Any advice much appreciated.

 

Welcome!  

Celiac disease symptoms can wax and wane.  There are over 200 symptoms attributed to it.  You might have a few that you would not think could be due to celiac disease.  

Not sure about your pain.  Beside celiac disease, I have gastritis.  It can cause a sharp pain (I call it pinching) under my left side just under my rib when I bend over to say...tie my shoes.  It is enough to take my breath away.  

You might see if you can take a cancelled appointment to speed up the process or talk to your doctor about going gluten free and then going back on Gluten four weeks prior to the endoscopy.  The problem is that once off gluten going back one can cause severe symptoms.  It might be easier to just stay on gluten for now.  You just need a slice of bread or two (or equivalent) per day.

 

[ROWAN6260]

Thanks this is very helpful, hopefully I won't need to wait for long. However I am in the UK and NHS waiting times can be very long. I just don't want to cause any damage. Does it take a long period of time for gluten to cause damage? Is it something that's been going on for years and symptoms only appeared? Sorry I really do not know much and trying to get as much info as possible.

[cyclinglady]

It is hard to say how much damage you may have now or later.    Sometimes basic labs result can give you a clue to damage.  For example, if you are iron deficient (low hemoglobin or ferritin).  Your celiac disease could have been going on for years or just “turned on” recently.  I think you need to do more research to help you make the correct decision.  Read up in on the celiac websites or head to the library.   Then talk to your GP.  He or she has your complete health history and help you with that decision.  

I wish it were easier!