Coeliac absorption : I have had coeliac disease for... - PMRGCAuk

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Coeliac absorption

Whatgrange profile image
18 Replies

I have had coeliac disease for many years and adhere to a strict (but probably not 100%) gluten free diet. My villi are still not in a ‘perfect’ operating condition, so their absorption is impaired.

I’m very interested in whether anyone has any experience of probable impaired steroid absorption as I am sure that although I am currently on 20mg my body has to, in fact, manage on much less, which makes tapering more difficult. When I start to taper this time I will definitely adopt DSNS.

Has any research ever been published on this or is it not measurable, PMRpro?

Thank you.

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Whatgrange profile image
Whatgrange
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18 Replies

There does seem to be done evidence that bioavailability of meds may be impacted in some GI conditions. I have linked to an article I found, and I will read fully if I get chance. At the moment I am trying to read things via smartphone.

onlinelibrary.wiley.com/doi...

Some very much older stuff!

pubmed.ncbi.nlm.nih.gov/488...

Whatgrange profile image
Whatgrange in reply to

Thank you very much! Am asking my medical OH to read it!

in reply to Whatgrange

You can just check the relevant section and conclusion for a quick view.

SnazzyD profile image
SnazzyD

Sorry, I’m not PMRPro. I suppose that goes for all of us; we don’t actually know how much we are absorbing. However, we all take Pred at the level that controls symptoms whatever that may be in reality once it gets to the blood. The number on the outside is just a guide with varying degrees of accuracy between people. Absorption ability could also vary from one day to the next. It soon becomes apparent if a dose isn’t enough at times eg when a batch of Pred is either too old, is defective or some sort of intestinal hurry. A slow taper is always good because one can pinpoint a dose that is too low much more accurately and react in a timely fashion. I guess the time when one would like to know accurately how much is being absorbed is if a doctor insists on dropping a dose because it appears too high at a particular point, but I’d hope they would think about this.

In coeliac though, the ability to absorb nutrients efficiently could make the risk of osteoporosis greater and Pred is then added into the mix.

Whatgrange profile image
Whatgrange in reply to SnazzyD

Thank you! My GP is very helpful but is always trying to get me to taper too quickly! I have tried to compromise with him but have now got to the stage of digging in my heels. To be fair he is juggling my other ‘serious’ conditions - our priorities are just a bit different! My quality of life is more important to me than length! So I’m preparing for a phone review I have coming up!

PMRpro profile image
PMRproAmbassador

A lot of people don't absorb by any means all their oral dose of pred - it can range from 50 to 90% bioavailability but most (even medical) people assume it is about 70-80% for everyone so when some of us need more - then it is projected onto us that it is our fault in some way. I also seem to need a fair bit - although I did manage to get down to 5mg for some months a few years ago I do do much better at above 10mg and always have done. nuigini on the forum has also fairly recently been diagnosed as being coeliac - and she also struggles to get below about 12mg, only being able to do so fut how much or relatively short periods. However - measuring the amount you absorb is a complex process and only really suitable in a research environment. I can't even find details of how exactly to do it - presumably administering a known dose and measuring blood levels over a long period, drawing the graph and working out the amount absorbed from the area under the graph.

There shouldn't theoretically be that much effect on gastric absorption - coeliac mainly affects the small intestine and sometimes the duodenum isn't affected - so ordinary pred is absorbed quickly from the stomach but problems may happen with enteric coated/gastric resistant tablets (only applies in the UK) which are absorbed much further down the gut but even so, there probably is a reduction in the amount absorbed overall and anyway - the proof of the pudding is in the eating (so to speak!).

I do wonder why they never seem to suggest trialing methyl pred depot injections in patients like us - no arguments there, 100% bioavailability whatever the state of the intestines. It does amuse me though that, given the factor of bioavailability, they compare oral dose and i.m. dose directly. If you need a higher pred dose because you aren't absorbing it all - you might also not be getting the adverse effects they expect because of such a "high" dose.

Whatgrange profile image
Whatgrange

Exactly! Many thanks as always!

dphu profile image
dphu

I, like you am a sufferer from PMR and a coeliac (24 years). I also have an Ileo-anal pouch (no colon) so I think I suffer from an even greater risk of malabsorption!

My rheumatologist noted this when prescribing Methotrexate but no reference to my Prednisolone yet. I'm down to 15mg daily but symptoms are still hovering. :(

Whatgrange profile image
Whatgrange in reply to dphu

Thank you for your reply! I put myself up to 20 for painful pelvic girdle - mobility poor - have been on that for 5 weeks and might possibly reduce by 1 soon - or not - as my pain and stiffness is definitely hovering!!

Very best wishes!

PMRpro profile image
PMRproAmbassador in reply to Whatgrange

Is it "just" PMR? Could it be myofascial pain syndrome or bursitis?

Whatgrange profile image
Whatgrange in reply to PMRpro

Yes, possibly!! Or even probably!! It improves and then another ‘innocent’ movement can set it off again. My perception of it is changing. It has improved in severity during the last month or so. At first it was a pain to ‘screech’ with!! Not now, but I’m being very careful moving- which doesn’t help stiffness. I am comfortable in bed and in my recliner. Heat is comforting, paracetemol 6 hourly doesn’t seem to do much. My OH is thinking maybe micro tears, taking maybe 4 or 5 days to improve a bit. I’m using a Zimmer at the moment to help my mobility, posture and gait. It does help.

PMRpro profile image
PMRproAmbassador in reply to Whatgrange

I've never got that bad :(

Whatgrange profile image
Whatgrange in reply to PMRpro

Have sent PM

Constance13 profile image
Constance13 in reply to Whatgrange

Ditto! They say "keep moving" - I wish!!🤨

Whatgrange profile image
Whatgrange in reply to Constance13

Hi, I’m always a very positive person, but pain and immobility is hard, isn’t it? I know I have a great deal to be thankful for - and I am, but...........!

I’m trying, but me going up the stairs at the end of my steroid dose is a sight to behold!!!!!

Very best wishes, keep safe!

Constance13 profile image
Constance13 in reply to Whatgrange

It's that "but........" which gets us!😂

Best wishes. 🍀🍀

Constance13 profile image
Constance13 in reply to Constance13

Just read your profile. Ditto! retired 20 years ago, taught English to adults here in Germany. Worked as a CAB advisor in Oundle and Swindon.

Whatgrange profile image
Whatgrange in reply to Constance13

Will pm you!

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