How soon should I ask for another blood test?

[Whydothis]

At diagnosis in February 2019 my IgA was 128, and my GP said normal was below 10. By last October I was down to 28, and realised I needed to be much more careful about cross-contamination, and got down to 18 in January. I then asked to see a dietician, who told me, politely, that this was still likely to be my fault, and cross-contamination. I asked about oats, and she said they were unlikely to be a problem, and to leave it until June, and try to sort the c-c out until then. Lockdown happened, I ate nowhere other than in my own kitchen, and requested another blood test in June, when the promised dietician appointment did not happen. This time I phoned the receptionist for results, and was told that the doctor had said "no action needed" (different GP). I asked her for the IgA result, and it was still 16.

So - I then cut out oats and any remaining commercial GF food (I was only eating a very little BFree bread and wraps) and I am eating only home cooked proper food. Although I had thought I was symptom free for 6 months, I soon realised the oats had been affecting me, and started to feel even better.

Back to my question! Is it too soon to request another blood test to see whether I have got the level down to normal, or should I leave it until the New Year? No good asking the GP, if they thought 16 was normal!

Any opinions will be welcome (including whether 10 is a low enough target. My sister had a test through the same practice, so presumably the same lab, and her negative result came back at 1.5 so 10 seems high!)

[Regalbirdy]

Hi,

I wouldn’t worry to much at the moment. You said that you feel better by removing oats? (which doesn’t surprise me – I was the same). That’s probably as good an indicator as looking for the last few points.

You’ve put a lot of work into getting it right - so trust your gut (literally!!). Continue doing everything that you’re doing and remember where you’ve come from in terms of the numbers.

Good luck!

[Whydothis in reply to Regalbirdy]

Thank you! I probably am focusing too much on the numbers rather than how I feel, after feeling so frustrated at not getting a negative result before now! I am feeling very well so I will focus on that!

[aikido]

You really need to stop trying to rely on blood tests. I get bloods done with they are requested. This is usually every other year.

Diet is more important with managing a GF diet. At the start it is important to be in contact with a dietitian, even though I know exactly what I needed to do for the first 5 years I attended a dietitian every couple of months.

Though as you suspect you may need to remove Oats from your diet, this really should have been done at the start. It is still not too late to stop eating Oats, it is better late than never.

Also do not go off what your sisters results where. You are two different people even two people with the same medical conditions can still get different results.

[Whydothis in reply to aikido]

Thank you. I know now that I should have given up oats to begin with, but I was given no advice after diagnosis, and no offer to see a dietician, so I had to work it all out for myself. I have had no follow up at all, other than blood tests when I requested them, and one dietician appointment (again, when I requested it, after a year,) when I was told not to give up oats.

I have relied on the tests because I was given the impression to begin with that my IgA should return to "normal" within a year of starting the diet, but this didn't happen and I want to be able to check I am now getting the diet right for me.

I have certainly made good progress, feeling much better soon after diagnosis, and then a big step better again after stopping the oats, so I am getting there!

[threenme86]

I would stay away from oats. Even when you buy "gluten free" oats, oats has a protein that's very similar to gluten. Your body will often react to this familiar protein the same way as it would gluten. I recommend going GRAIN FREE.

[Whydothis in reply to threenme86]

I agree - I have no intention of going back to oats now that I feel better without them. I just felt I would like another test to confirm that I have actually got the IgA down to "normal" levels in case there is anything else I need to think about.