Confusing symptoms

[Sabrine]

I’ve only just had a diagnosis of coeliac from a blood test and I am awaiting a referral for a biopsy presumably to ascertain the level of damage to my intestine. I don’t seem to have the usual symptoms which I have read about on this site. I’ve never had diarrhoea, but I’ve had constipation on and off for the last three years. Unfortunately, as I’ve had MS for 25 years and a faulty hip replacement, I take a low level painkillers and osteoporosis medication both of which can cause constipation so it never occurred to me I had coeliac. Especially as I don’t seem to have any of the other symptoms that people describe here although I do have dry eyes and I was amazed to read that that can be a symptom of coeliac. I’m seeing a doctor on Monday and I will ask for a copy of my blood test results.  Could somebody tell me what questions I should ask the doctor about my blood test results and what I should look for in the biopsy result as a lot of it is very confusing. Apparently my blood test was 8.9.  Is that an antibody score?  I know they call it a weak positive but only just. Hoping that that score is reasonably good news or is it meaningless without the biopsy?

 

 

[Scott Adams]

Can you also provide the reference range that should be with your test result?

We've done some research summaries on MS and celiac disease that you may find interesting:
https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/multiple-sclerosis-and-celiac-disease/

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

[Sabrine]

Our wonderful NHS has become rather slow of late so I am still waiting to find out more about my test results. I have recently had more blood tests taken which seem to be for vitamin deficiencies and I have my endoscopy next Wednesday. I will definitely ask what scale is used and then I will post my results. I am very grateful for the advice I have been given on this site. 

[Scott Adams]

I hope you have been eating gluten daily, lots of it, for your endoscopy. Some people mistakenly go gluten-free before all testing for celiac disease is completed, and doing that can cause false-negative results.

[Sabrine]

I have been making sure my gluten intake is as high as possible eating loads of bread and pasta. The strange thing is, it’s not making me feel ill at all.  It never has. And yet I definitely tested positive positive for coeliac on my antibody test. Very strange.

[Scott Adams]

Many people with celiac disease are asymptomatic, but unfortunately if they keep eating gluten they still run the same health risks as those who have symptoms.