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What I did differently about food this time

Started 10 April 2025 · 22 replies · 235 hearts · read 3.9k times

NikolaiSofia, BG · 10 April 2025
1.3 years ago

What I did differently about food this time Writing it down partly to work out what I actually think.

Long one, sorry. I have been chewing on this for a fortnight.

My prescriber has been fine, genuinely. The problem is that I get nine minutes twice a year and there is no version of nine minutes that covers this.

The thing that has surprised me most is how much of this is about other people rather than about me.

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.

Anyway. Thank you for reading this far. Any experience gratefully received, and I promise to come back and say what happened.

78

MableBolton, UK
#1

The phrase that unlocked my appointment was asking what specifically she wanted me to watch for. It moved us from reassurance to a plan in about thirty seconds.

10

BobbieRochdale, UK
#2

Different experience here, for balance. Mine did not improve and in the end I stopped, and that was the right call for me. Both outcomes exist.

7

BenediktFacilitatorVienna, Austria
#3

Building on what the opening post wrote rather than answering the original question.

If any of this has landed close to home for you while reading, our support resources page lists the kinds of services worth finding. No obligation and no drama.

20

OttilieCheshire, UK
#4

Two things that helped me, neither of them clever: small amounts more often, and drinking a lot more than felt necessary.

12

InêsPorto, PT
#5

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

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

9

AurelBucharest, RO
#6

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?

13

NerysRhyl, UK
#7

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

7me too 2

ZoraSarajevo, BA
#8

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

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

12

NikolaiSofia, BG
#9

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

I asked my nurse the same question and she said something I have repeated ever since: that the aim is to keep you on treatment, not to get you up the schedule.

14

MableBolton, UK
#10

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

7

BobbieRochdale, UK
#11

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.

8

Gwen DAberystwyth, UK
#12

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

11

OttilieCheshire, UK
#13

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

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

11

InêsPorto, PT
#14

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.

7me too 1

AurelBucharest, RO
#15

I would take that to a clinician rather than to us, and I would do it this week. Not because it is definitely serious — because it is the sort of thing that is much easier to rule out than to worry about.

14

NerysRhyl, UK
#16

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

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.

10

ZoraSarajevo, BA
#17

Yes. All of this. I had the same in my third month and I remember thinking there was something specifically wrong with me, which there was not.

13me too 6

NikolaiSofia, BG
#18

Mine lasted about seven weeks and then lifted over a few days. I cannot tell you why. I can tell you it lifted.

8

MableBolton, UK
#19

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

Similar here, and mine turned out to be a completely unrelated deficiency picked up on bloods.

8

BobbieRochdale, UK
#20

I have been in this circle a year and this question comes round every few months. It is not a silly question. It is the question.

10me too 4

BenediktFacilitatorVienna, Austria
#21

I will leave this open for a few more days and then add it to the circle's resources, because the answers here are better than anything I would have written.

18

OttilieCheshire, UK
#22

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.

6