Celiac or not

[Meldrewmoanef]

Hi folks,wonder if anyone can explain my concerns. I was diagnosed with celiac in 2020 through a blood test, the endoscopy showed normal upper tract. I had another blood test in August this year, when I was the nurse for my b12 injection I asked her about the results, and she kindly printed them off and Sent through them with me, she came one test that said I had no autoimmune disease, I told her that was wrong and I had celiac disease, she said not according to the test. I am confused, I have no symptoms and have always disputed I have it although I do stick to a gluten free diet. Can anyone explain this problem I am total confused.

[Cooper27]

The blood test can be unreliable, which is why they confirm with a biopsy.

Do you know what your blood test result was? As in the number?

[nellie237 in reply to Cooper27]

The biopsies can be unreliable too. They can take 6 samples on the same day, and some may be positive, and some negative. Now that the waiting times for biopsy are so long they are quite happy to share that the 'Gold Standard' isn't quite so shiny as we were led to believe.

If you haven't got access to online blood results, I would suggest that you ask the surgery to print off last year's results.

I was dx in Nov 20 with TTG blood result 43Um/L (range 0.5 - 3.5), and EMA positive. After 7 months of being on a GF diet my TTG was 1, same range, so your normal result on a GF diet is not unusual. I had biopsies 4 months post diagnosis, which put me at Marsh 2.

It is important that you know whether your initial blood results were >10 X the upper limit of the range, because this is considered 97% (or thereabouts, I can't remember exactly) accurate for dx. With negative biopsy + weak/moderate blood results, I don't think you get a diagnosis, but I would continue to stick with the GF diet if I were you.

More and more asymptomatic coeliac are being diagnosed .

[Narwhal10]

Hi Meldrewmonef

Gosh your doctors surgery sounds in a pickle. Like Cooper27 said ask for a print out of blood results. Plus seeing which blood test was done - TTG is 95 % more reliable. Biopsies, they have to take a number of tiny samples, usually 4 or more from the small intestine which is 6 foot long!!! So, that’s pretty unreliable. Symptoms wise - there’s over a hundred and some don’t affect the the gut (called extra intestinal) like epilepsy and ataxia.

But at the end of the day if you feel better off gluten then do so. Nobody can digest it, it just doesn’t bother some people. Others it does and then it can cause absolute havoc.

Best wishes

[Meldrewmoanef]

Thank you all for replies, looks like I need get more information. Many thanks people.

[Regalbirdy]

Hi Meldrewmoanef

The same thing has happened to me.

Congratulations - it actually means that you have been doing well on your diet.

You say that the two blood tests were many months apart - one last year and the other in August this year. As a result, the gluten antibodies in your blood have dropped to such a healthy level that to an unaware medical professional it looks like you don’t have Coeliac Disease. We both know this is not so (And I actually did correct my doctor at the time! 🙂).

Take it in your stride and use it as physical evidence/confirmation that you’ve got your Coeliac Disease under good control. Although you may have already guessed that last part - because I’d hazard a guess that you’re probably feeling significantly better in yourself too…!

I hope this helps.

[Hidden]

The problem, without being harsh, is the nurse not understanding the concept of coeliac antibodies dropping/reducing when you follow a gluten free diet. Once you eliminate gluten the antibodies will drop as the autoimmune reaction is reducing and your body is repairing so you will get a negative result for coeliac. It does not mean you do not have coeliac - it means you have been diligent on your gluten free diet and your body is showing no gluten reaction/antibodies. If you started to eat gluten again for a period of time you would get a positive coeliac test again. Best to book an appointment with your GP to talk through the difference in your blood results between last year and this year, and what that means from a coeliac perspective. I just wish someone would ensure everyone working in NHS understood how coeliac works as the lack of knowledge is dangerous.

[Saeedi21]

If you really have celiac and you are sticking to a gluten free diet then the result will appear normal.

[Meldrewmoanef]

Hi Folks, again thank you all for your replies, they had help me understand a lot more about how the blood results work. I did think to come off gluten free but having your comments I think I will just carry on being gf.