Coeliac plus this — the protein problem

Started 9 December 2024 · 19 replies · 222 hearts · read 1.6k times

PosyChichester, UK · 9 December 2024

1.6 years ago

Something I have been sitting with: Coeliac plus this — the protein problem Not looking for advice so much as other people's experience.

Something is going on with my body and I would like to know whether it is ordinary.

Something is going on and I would like to know whether other people have had it, mostly so I know whether to raise it or wait it out.

This started at the same time as two other things, which is why I cannot attribute it to anything with any confidence.

Thanks in advance. Even a one-line "yes, me too" would help more than you would think.

NyalaAddis Ababa, ET

My consultant was cautious rather than opposed, which turned out to be the right posture, and we went considerably slower than the standard schedule.

BettinaGraz, AT

What helped was keeping a log that recorded both, separately, so that my two teams were not each hearing a summary of everything.

GethinMerthyr Tydfil, UK

The hardest part was working out which symptoms belonged to which thing. After twenty years I knew my usual pattern, and this was a new pattern layered on it.

TomásFacilitatorLisbon, Portugal

Holding a boundary: we do not swap remedies in this circle as though they were prescriptions. Describing what happened to you is welcome; telling somebody what to take is not.

AleksLjubljana, SI

What I needed and could not find was somebody with my specific combination. This circle is the closest I have got and it has been worth a great deal.

BrackenHexham, UK

What Aleks described happened to me too, in a slightly different order.

The flare I had at month three turned out to be my usual condition doing its usual thing at its usual time of year, and I had blamed the medication for a fortnight.

BibiRabat, MA

Picking up Bracken’s point rather than starting a new one.

Something that surprised me: my long-standing symptoms improved rather than worsened. That is not everybody's experience and I did not expect it to be mine.

EphraimBrooklyn, NY

I would say get the two sets of clinicians talking to each other if you possibly can. Mine were not, for a year, and I was the messenger and I got it wrong twice.

14me too 8

BryherIsles of Scilly, UK

What Bracken described happened to me too, in a slightly different order.

I would gently say that a previous diagnosis is a reason to have the conversation carefully rather than a reason not to have it.

NoraDublin, IE

#10

That is a very clear way of putting something I have never been able to put clearly.

ÖzlemIzmir, TR

#11

Mine required one pause and one restart in eighteen months and both were planned rather than emergencies. That is a good outcome for a complicated gut.

PosyChichester, UK

#12

Reading this properly rather than skimming, which is all I have to offer today.

NyalaAddis Ababa, ET

#13

Coming back to say we found a workable arrangement, slowly, with two teams and a lot of notes, and I have been stable for a year.

BettinaGraz, AT

#14

Posy has already said most of this and I want to add the one part that was different for me.

My gut was already complicated before any of this and the general advice mostly did not apply to me. Bringing it to somebody who knew my history was the only thing that worked.

7me too 6

GethinMerthyr Tydfil, UK

#15

Gently disagreeing with Bettina, or rather adding the other half of it.

I had my existing condition reviewed before starting rather than after, and my gastro team were much more involved than I expected them to be.

BramberSteyning, UK

#16

I take other things for my gut and the timing of them relative to everything else needed working out properly with a pharmacist. Worth an appointment of its own.

AleksLjubljana, SI

#17

My history meant I was watched more closely, which I resented at first and was quietly grateful for later.

TomásFacilitatorLisbon, Portugal

#18

Thank you for writing something this unglamorous down. Half this circle has had it and almost nobody says so, and you have just made the next thread easier for somebody.

BibiRabat, MA

#19

Recognition rather than advice, if that is any use at all.