Wonky Blood Tests Esp. Liver Enzymes Tests (Or Liver Function Tests In The Uk)

[cristiana]

Having read this forum for a while I have come to understand that Celiacs often have odd blood results, which quite often, although not always, normalise after the adoption of a gluten-free diet.

 

In my own case before diagnosis I had abnormally low blood iron, borderline B12 and slightly elevated total blood protein (globulins were responsible for this).   I remember my doctor saying, "I need to send you for more tests", which they did, including electrophoresis, to rule out nasties.  When the results came back they showed nothing in particular, just generalised inflammation.  My blood normalised in the end, with one or two wobbles en route.  But the whole thing was stressful and as I have shared before here, I have quite a phobia of blood tests these days.  Couldn't care less about the needles - it is the results I don't like!

 

What I would like to know is did anyone else ever have this particular blood protein problem?

 

Also, why does this happen?  i.e. why are the LET/LFT affected?

[flowerqueen]

I wish I had the answer to this and hope someone on here is able to throw some light on it. I also feel the same way about the blood tests and am always apprehensive while waiting for results. The tests they carry out in UK seem different to the ones in US, I don't know whether it's because we call them something different or what.

Having read this forum for a while I have come to understand that Celiacs often have odd blood results, which quite often, although not always, normalise after the adoption of a gluten-free diet.

 

In my own case before diagnosis I had abnormally low blood iron, borderline B12 and slightly elevated total blood protein (globulins were responsible for this).   I remember my doctor saying, "I need to send you for more tests", which they did, including electrophoresis, to rule out nasties.  When the results came back they showed nothing in particular, just generalised inflammation.  My blood normalised in the end, with one or two wobbles en route.  But the whole thing was stressful and as I have shared before here, I have quite a phobia of blood tests these days.  Couldn't care less about the needles - it is the results I don't like!

 

What I would like to know is did anyone else ever have this particular blood protein problem?

 

Also, why does this happen?  i.e. why are the LET/LFT affected?

[cristiana]

Hi flowerqueen.  

 

Thanks so much for taking the time to reply ... I find the UK system quite odd as my celiac friends have all had different follow ups.  One has barely seen a a doctor, just a nutritionalist, two of them have had tests just tracking the Celiac numbers.  Why am I the only one having Liver Function Tests/Liver Enzyme Tests?  It makes me paranoid.  My gastro says just one more round that if I pass, that will be it.  I am wondering if it is to do with the dodgy presentation in my blood at time of diagnosis that is making them follow me in this way.

 

Have you had blood protein problems too?

[Gemini]

Hi Christiana!

 

I have been diagnosed with celiac for almost 10 years and I had elevated blood protein when diagnosed.  I had other wonky blood work also, like elevated liver enzymes. All resolved on a strict gluten-free diet.

 

Celiac makes the liver angry and it is very common to have elevated enzymes for awhile after diagnosis.  It can take quite awhile for these things to normalize. Doctors are just going to run other blood work to make sure it is nothing more serious, which can happen with long undiagnosed Celiac.  You were eating food that was totally detrimental to your health so "stressing" out your internal organs happens.  I was 46 when diagnosed and went a LIFETIME with symptoms but I am fine today and I am no spring chicken, either! 

 

The blood protein issue was the same with me.  I had elevated protein, not bad, but out of range of normal.  So, off to the hematologist I went.  I did a lot of research on it beforehand and had a good conversation with the doc about it.  I actually found research which stated that Celiac Disease can raise protein levels and the electrophoresis test is important because elevated protein levels can signal Multiple Myeloma.  I also have 3 other AI diseases from going so long without a diagnosis so it was pretty much a foregone conclusion my blood work would be wonky.  (I really love that word!)  It took quite a while, around 4 years from diagnosis, for that to normalize but I think it was the combo of 4 AI diseases which made it that way.  I am an optimist to the core who hates going to any doctor for anything so I did not let it phase me after doing the research.  I felt good at the time so didn't worry unnecessarily about any nasties happening. 

 

The immune system is made up of proteins so when this goes haywire and your immune system starts to attack various body parts, it is more or less hyperactive.  It would make sense that it could raise overall protein levels due to all that inflammation.  As long as you don't cheat and eat a healthy gluten-free diet, the inflammation calms down over time and levels normalize.

 

I still have some wonky results like low white cell counts and my red cell counts will never be stellar (low end of normal) but I feel good, exercise and eat right so don't worry about it.  Low white cell counts are normal for people with AI disease and it is only a problem if a person is getting sick all the time.....which I am not.

 

I do not know how long you have been diagnosed or on a gluten-free diet but have patience. If your levels normalized, it is highly likely they will stay that way...if you follow the diet as you should.  The reason you had more testing is because you went to a GI doc and they tend to be more thorough, but that is not always true.  I never went back to a doctor, except my thyroid doc, for any testing because I did not have a PCP at the time, just my thyroid doc.  I had her run the Celiac antibody re-check yearly.  It's a long story but I got screwed over like many people did over the years and still have trust issues with the medical profession.  I found a great PCP about 3 years after diagnosis and she ran a slew of tests and found the elevated protein.  I think it all depends on a persons experience in diagnosis on why some have more testing done than others.  I personally just do testing that I think is important because I am not spending the rest of my life running off to doctors.  Now that I am healthy, I have a life to live! 

 

 

[cristiana]

Gemini - that is an amazing reply, it must have taken an age to do all that typing so I really do appreciate it.  Thank you so much.

 

Thank goodness I am not the only celiac with this!  I must admit I did find one other article that linked gamma globulins to celiac disease, but it took some searching.  It was to do with why this protein might be elevated in people with Downs Syndrome and the doctor who wrote the piece gave quite a few instances of why this might be true, including the possbility of celiac disease.  

 

My protein came down by nine points after observing a very gluten-free strict diet, from 41 to 32.  'Normal' in my lab is 35.  It was up one point last test and that sent me into a spin worrying if it was on its way up again to its record level.   Mind you, when it was at 41 before diagnosis I felt dreadful, absolutely awful.   The only reason I think it might have gone up for the last test was that I have begun to risk eating out again, maybe CC issues?  I will avoid that until my next test I think!

 

I totally understand why you don't want to run off to doctors all the time. My gastroenterologist is such a nice person, but I sincerely hope I pass the next tests and never have to see him again..

 

BTW - thanks for the white blood cell explanation as mine are just on normal. Just.  I was wondering about those too.

 

A doctor once said I had Raynauds. And boy do I get aches and pains .... maybe there is more than one AI thing happening too with me.

 

Anyway, thank you again.

[Gemini]

Christiana...it did not take me that long to type all that out. I type fast.  Those typing lessons in school as a child must have paid off....who knew there would be this thing called the internet. 

 

One of the other AI diseases I have is Reynaud's.....although they call it a syndrome and not a full fledged disease.....whatever.  It has improved on the gluten-free diet and I no longer have to wear gloves when reaching into the freezer section at the grocery store.  Thank goodness for small miracles, huh?  But I still have it....it's just the symptoms that have toned down.

 

I highly doubt that the small blip upwards on your protein test has anything to do with eating out.  You would have to be cc'd continually to raise protein levels in the blood (if that is even possible) and it would take a long time so you would probably know by then that you have been glutened.  If you have Reynaud's, then that's 2 AI diseases for you so protein levels may vary a bit if you are having a flare.  Don't get too panicky about it.  The aches and pains might just be from the fact that you are still healing or you could have another AI disease brewing.  That is always a possibility for us.  However, I have been gluten-free 10 years this April and since I was diagnosed and went gluten-free, I have had no more AI diseases rear their ugly heads so there is always hope! 

 

Something for you to think about and realize that this is all connected.....people with Down's Syndrome have higher rates of Celiac Disease. Just having Down's is a good reason to be screened for it.  So the research you did paid off and you see that out of range blood protein can be caused by many AI diseases including Celiac and it's all because of that pesky inflammation.  I would say you have done a good job of bringing that down as much as you did!  Mine was only out of range by a couple of points at the time.  Keep up the good work but don't worry if you want to dine out sometimes. I know good gluten-free meals can be had in Britain as I have been there many times.  Just choose wisely and enjoy! 

[icelandgirl]

Hi...I just have to chime in and say how much I love Cristiana's use of the word wonky too! I need to figure out ways to incorporate it into my life.

[flowerqueen]

Hi Cristiana, I don't recall having elevated protein levels, (or not that I've been told), but have had other abnormal results, one in particular is liver enzymes (waiting for an appointment with doctor as I write this).

Gemini, where did you go in Britain? In my neck of the woods, there's not many that specialise in gluten free

[cristiana]

Girls... thanks you all so much for your various contributions.  Gemini, I just have to say it again that it is good that someone else has travelled down this route with me.  

 

Elevate blood protein has not been my only other weird symptom over the years, my health insurance call advisor actually laughed when I was ringing up about cover - he said he had never dealt with anyone with such a peculiar medical history!  He was very nice and he certainly didn't mean it in a nasty way.... but it did bring it home to me what a weirdo I was.  Of course now I realise all these peculiar symptoms were all part of being an un diagnosed celiac.

 

Glad you like the word 'wonky' Icelandgirl.  But I must admit, I saw it somewhere else on this website, don't recall where.

 

Now, flowerqueen, my elevated protein levels appeared on a sheet of findings printed out under the title, Liver Function Tests.  Which I believe to be Liver Enzyme Tests, same thing.    It could be that one or more of your readings are slightly out of range.   I have certainly seen on line that lots of celiacs have wonky liver enzyme test results but posters aren't always very specific about which of those readings is out of range.  So if you find out that it is globulin that is making things go out of range, at least you know you are in good company on this thread!   Let me know how you get on.   

 

xx

[flowerqueen]

Thanks Cristiana,

So I'm now a member of the wonky blood test results brigade . I will be speaking to my doctor on Monday, so hopefully I will find out then if it's the same as elevated blood protein.

It seems we all learn from each other when we pool our resources. I would have hoped that by now though, my test results would have improved, being diagnosed in November 2011, but there again, it might be that I was misdiagnosed with IBS in 1983 and my gut has not fully repaired. All in all, the posts on this thread are quite enlightening.

[cristiana]

Thanks Cristiana,

So I'm now a member of the wonky blood test results brigade . I will be speaking to my doctor on Monday, so hopefully I will find out then if it's the same as elevated blood protein.

It seems we all learn from each other when we pool our resources. I would have hoped that by now though, my test results would have improved, being diagnosed in November 2011, but there again, it might be that I was misdiagnosed with IBS in 1983 and my gut has not fully repaired. All in all, the posts on this thread are quite enlightening.

 

Hope all goes well on Monday.  I remember after my diagnosis my own gastroenterologist saying it was not common to have strange liver function tests but it did happen.  He had just seen someone else with odd blood readings but they had come back down in line in response to a gluten-free diet.  But he never had the time to explain why - this is why Gemini has been such a help to me with these posts, esp. as she had the same offending elevated protein.

 

Oddly enough I have been talking to a distant aunt whose own sister has been diagnosed (I think it took 70 years!)  but before that happened 'all her bloods were out' (not quite sure whether she really meant all... ). Anyway, this lady had D so they tested her for celiac - et voila!

[Gemini]

Hi Cristiana, I don't recall having elevated protein levels, (or not that I've been told), but have had other abnormal results, one in particular is liver enzymes (waiting for an appointment with doctor as I write this).

Gemini, where did you go in Britain? In my neck of the woods, there's not many that specialise in gluten free

Sorry to take so long to answer your question, flowerqueen!  Specifically, this past year was the easiest at finding safe gluten free dinners in the UK.  I was diagnsoed in 2005 and with each trip, it has become easier and easier.  I usually rent a flat and eat breakfast in and do one meal out, per day.  I was in London, where finding great places to eat is very easy, and then we stayed in a flat in Kendal, in the Lakes District. We found some fantastic cafe/restaurants within walking distance from the flat and I never had any problems with the food and it was outstanding.

 

Overall, I have had very little trouble anywhere I went.  I ate more upscale but even in the pubs, I found people to be very accommodating and careful and I did not get sick once in 2 weeks.  There are some good websites that cater to gluten free dining in the UK and I used those to find places to eat safely.

[cristiana]

A quick update for anyone who gets these odd readings with their coeliac disease.

My ttg was elevated - significantly - in November (86) and the LFT/LET they ran showed my immunglobulins are up yet again - three points above normal.  So it seems to be that my liver gets angry when I get gluten in my diet. Two gastrenterologists didn't even mention it to me.

Now I'm going to be ultra careful after a few slips this summer in the hope it comes down again.