ESR increasing, symptoms decreasing

Hello,

I wondered whether anyone might be able to shed some light on something that's puzzling me?

I've been following the LOFFLEX diet for several weeks now and just lately have been feeling fairly good with minimal symptoms. A couple of weeks ago I had a blood test which showed that my ESR level had increased from 40 in May to 44 in June, despite the fact that my symptoms have decreased in that time. I don't know the exact numbers but there's been a mostly upward trend in my ESR level over the last few months whilst I've been on the elemental and LOFFLEX diets despite the fact that generally my symptoms have improved. I say generally because I have had lots of ups and downs, but on the whole I feel massively better now compared to the period just before starting the elemental diet.

So my question is, if my symptoms are improving is there a good explanation for why my ESR level is still high and increasing?

Thanks,

Sarah

ESR is an indication of general body inflammation, not just indicative of gut inflammation. Do you have arthritis or anything pain related? These types of things can bring up your ESR rate as well.

Thanks Paislee. I was wondering if there could be another (non Crohns) cause for the high reading too but I feel ok, no aches and pains other than some fairly mild Crohns pain. My abdo pain has always been my indicator for how well I'm doing, so it doesn't seem to make sense that the pain is reduced but the inflammatory markers are still increasing.

Hi Sarah!

There's a variety of possibilities. The first that comes to mind is you could simply be falling under the test's variance. What I mean by this is if you took 10 different vials of blood and asked them to test ESR on each, you'd probably get back many different numbers. The numbers should be close, but they will vary. Looking it up, one study found variances of 2.91% and 7.04% between ESR tests.

The second is maybe your diets aren't working as well as we would hope. But I wouldn't call them off based solely on a 4 points increase in ESR. I hope (and don't think) this isn't the case but felt compelled to mention the possibility.

Another thought is increased ESR can be caused by anemia which is common in Crohnies. How's your iron intake on these new diets?

We could probably list possibilities all day long. But if you're feeling better then stick with it and continue to monitor things closely.

Sed rate is only used as a general indicator of inflammation as many, many things can cause it to be varied - including technique used to draw it.

I think the C reactive protein level is much more sensitive and a better one to judge by.

Thanks David, those suggestions are really helpful. I did wonder about test variability but thought that the increasing trend in my result probably means it really is increasing, but the difference between my last two results was small and possibly not significant. I am also borderline anaemic, so this could possibly be interfering with the result too.

My fear is that the diet is helping my symptoms but somehow masking the inflammation that's going on inside. I hope that isn't the case.

Kllyeve, thanks for your suggestion. My CRP levels have been normal throughout, even during my worst flare, though I think for most people CRP tends to more useful the ESR. It's strange how it differs between people!

Two results don't make a trend

I think your concern about the masking of inflammation is a valid one and love that you're not only aware of that possibility but keeping an eye on it. Good for you! That's one of my biggest concerns when people want to try to control their disease with diet alone. Of course, it's also a concern of mine when they try to treat it with meds as well. Close monitoring is so important as you're obviously aware

Out of curiosity, have you had fecal lactoferrin or fecal calprotectin testing done? One of those could be utilized as an additional marker for you and they're not very expensive.

Hi David,

The trend has been over the last few months, not just those two measurements :wink: My doctors usually just tell me whether it's high or normal, it's always harder than it should be to get an actual number out of them. Because of this I don't know the exact values, but it was in the mid-high 20's a few months ago, so 40 or 44 seems like a big jump from that. I've been keeping a food and symptom diary so I'd really like to find out the dates of my blood tests and see how they correlate with my symptoms at the time.

I've not had a fecal lactoferrin or calprotectin test done, they don't seem to be commonly used in the UK but I will ask my consultant at my next appointment later this month. I agree this might be a useful test for me to have, particularly since ESR doesn't seem to reflect how I feel. I wish I'd have known more about these two tests prior to starting my diet as it would have been useful to have a baseline measurement to compare back to.

Thanks for your input!

Sarah

Ah, my apologies

Please do report back when you find out if you can get either of those tests done so I don't keep telling UK folks about them if they're not doable.

Thank you!

I think they are doable here - I've read of others in the UK that have had them done - they just aren't used routinely. I get the impression that some gastro departments use them quite a lot whilst others hardly use them at all. It's not something that my doctor has ever mentioned to me.

I am also one of those people that the CRP stays normal, but lot of people can use it to track their disease. I am left with monitoring pain in the RLQ as it was really my only symptom besides chronic C.

And yes, it is very hard to get the actual numbers from lab results from some doctors. I am trained to do the tests and have a hard time getting the results. They want you to beleive that only doctors have the secret decoder ring to understanding these tests.