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.

What I keep tripping on is not the physical bit. It is the not knowing whether what I am experiencing is normal, and having nobody to ask who is not either selling something or frightened for me.

Here is where I am. The medication side has been more or less as described, and the part nobody prepared me for is everything around it: what to say to people, how to plan a week, and how to tell the difference between a thing to endure and a thing to raise.

I have read the guides here, which were more useful than anything else I have found, and I still have a question they do not cover.

Sorry for the length. If anyone has been here, I would very much like to hear it.

NyalaAddis Ababa, ET

My pharmacist was more use than anyone. Ten minutes at the counter, no appointment, no charge.

BettinaGraz, AT

Can I gently push back on one thing? Not the substance, just the framing — you have written twice that you should be coping better. Who told you that?

GethinMerthyr Tydfil, UK

Yes to the burping. It is real, it is unbeautiful, and it does settle.

TomásFacilitatorLisbon, Portugal

the reply above said something I want to sit with for a second.

Thank you for writing this. I am not going to add information to it. I am going to say that what you have described is very common and very rarely said out loud.

AleksLjubljana, SI

For what it is worth, the trial data on this is thinner than the confidence of the internet would suggest. Worth knowing when you read the posts.

BrackenHexham, UK

the reply above — yes, and the bit that took me longest to accept was the next part.

It got worse before it got better for me, which I wish someone had said. About ten days of worse.

BibiRabat, MA

Reading the reply above, I recognised more of that than I expected to.

The thing that changed it for me was going slower, agreed with my prescriber. I am not suggesting you do that. I am saying the conversation exists.

EphraimBrooklyn, NY

Have you got anyone who can be with you when you do it? It made an enormous difference to me and I felt silly asking.

14me too 8

BryherIsles of Scilly, UK

Building on what the reply above wrote rather than answering the original question.

Practical, boring answer: write the three questions down before you go in. I have never once remembered them otherwise.

NoraDublin, IE

#10

I did exactly the same and felt terrible about it. You have not done anything wrong.

ÖzlemIzmir, TR

#11

No advice, just recognition. That sounds exhausting and I am sorry you are in it.

PosyChichester, UK

#12

I keep a two-line diary and it is the only reason I could answer this question about myself. Worth starting even now.

NyalaAddis Ababa, ET

#13

I am about four months behind you and I have been dreading exactly this, so thank you for writing it down before I got there.

BettinaGraz, AT

#14

Reading the reply above, I recognised more of that than I expected to.

Coming back to this a fortnight later to say it settled. Leaving the update because I hate reading threads that stop.

7me too 6

GethinMerthyr Tydfil, UK

#15

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

I am the person who had the frightening version of this. I went in, it was investigated, and it was not what anyone feared. Going in is the whole of my advice.

BramberSteyning, UK

#16

My experience was very boring, which I offer as data. Some of us just get a dull time of it.

AleksLjubljana, SI

#17

What helped was lowering my own expectations of the week rather than trying to hold the week together.

TomásFacilitatorLisbon, Portugal

#18

Before anyone offers a remedy: what has been described here is on the list of things that need a clinician today rather than a thread. I am going to be firm about that, kindly.

BibiRabat, MA

#19

the reply above said something I want to sit with for a second.

Please do not read the comments under news articles about this. I lost a fortnight to that.