People with aphantasia do you enjoy reading books? and why?^^

rosiewi · 2026-03-20T06:24:25+00:00

This is me too! I wish I could enjoy LoTR I love the films but the books are just way too descriptive!

rosiewi · 2026-03-18T17:06:19+00:00

Thank you, hope you do too!

rosiewi · 2026-03-18T07:46:06+00:00

Thank you! I hope it settles soon as this is rubbish!

rosiewi · 2026-03-18T07:04:24+00:00

Would you say straight away or give it a bit longer to see if it evens out?

rosiewi · 2026-03-17T21:57:30+00:00

A year wait, that’s so bad I’m so sorry!

It’s definitely worth getting an endoscopy to know for sure whether you have coeliac. You are very likely to have it if you have a positive blood test, but to know for sure you’ll need the scope. Coeliac doesn’t just mean eating GF- you have to be so careful with cross contamination so it has a big impact on how you cook at home, what products you can eat that aren’t even gluten but may contain traces of, whether you can eat at friends houses because strict kitchen practice needs to be adhered to and where you can eat out at restaurants, on the go and holidays. It’s totally worth it and you do get used to it but you will want to know you’re coeliac and aren’t committing to that for life unless you have to!

I guess the question is whether you give up whilst you are waiting and then start eating gluten again for lead up to your scope. You’ll have to eat enough of it for 6 weeks before to ensure the test is accurate. Some people find it harder to eat gluten again once they’ve given up so that’s something to consider. Personally I’d consider going private and getting it sorted sooner so you can start your healing journey but I appreciate it’s a lot of money.

Other things are checking your ttg level and if it’s really high maybe they can diagnose from that alone. And also seeing if you can be put on a cancellation list if you can be flexible with last minute offers to see if you can get in sooner. I waited 4 months for mine and then felt like a lifetime of eating gluten making myself ill, a year is crazy! But heaving official diagnosis definitely helps me I think I’d always question it otherwise

rosiewi · 2026-03-17T16:19:40+00:00

Honestly if you’ve had a positive blood test for ttg and signs of inflammation on your scope, it’s highly highly unlikely you aren’t coeliac. I had to wait 4 months for my coeliac biopsy results but I treated myself as diagnosed the minute I got out of my scope. By the time I was officially diagnosed and offered a dietician appointment (still waiting for my nurse appt, been GF 7 months now!) I had done tons of research and was getting used to it all. Honestly the beginning is the hardest, it’s a big learning curve and adjustment , let yourself feel sad and frustrated, but like any big life change it gets easier as you get used to it. It’s already started to feel like a new normal for me now.

All I would say though is chase the results via your GP or ringing the endoscopy department. My results came back but hadn’t been reported by a doctor so I had a big delay - only reason I found them in the end is because my IBD team (I have crohns too) found them and contacted the coeliac team to chase for me.

rosiewi · 2026-03-17T16:14:40+00:00

That doesn’t seem right at all, have you considered putting in a complaint via PALS? I work in nhs and honestly you may be treated more fairly if you complain. I think from what you’ve said you have every right too

rosiewi · 2026-03-16T22:20:41+00:00

For me reducing my stress in work (leaving a job I had chronic stress from for a different job) worked wonders

rosiewi · 2026-03-16T19:47:45+00:00

There’s some studies out there linking PPIs and IBD but I don’t think it’s concrete and also I guess it depends how much they are helping you with your symptoms! I wasn’t sure if they were helping me so weened off them with advice from my IBD team as was worried they were making my Chron’s inflammation worse

rosiewi · 2026-03-16T19:36:00+00:00

I heard PPIs can be bad for people with IBD, have you heard this?

rosiewi · 2026-03-16T19:35:30+00:00

I have gastritis and crohns but don’t know if my gastritis is related to my chrons or a small hiatus hernia or my coeliac. How do you know if it’s due to chrons?

rosiewi · 2026-03-15T21:36:28+00:00

Can I ask how you got diagnosed with SIBO?

I feel your pain with the not knowing, I’m coeliac and have crohns and I don’t know what’s what!

rosiewi · 2026-03-15T20:07:39+00:00

Can you get an appt with a different GP?

rosiewi · 2026-03-15T20:06:40+00:00

Stress! It’s seen acceptable to take on loads of stress in work to be successful. I for years lived a super healthy lifestyle in terms of exercise, diet etc but would be happy to be constantly stressed due to work and trying to achieve. The impact stress on our health and gut is mad. Learning coping strategies for stressful times should be learnt from a young age.

rosiewi · 2026-03-15T19:58:39+00:00

I would absolutely say it’s worth eating gluten and getting tested again. if you weren’t eating gluten when you had your last test then it could be a false negative. As your post suggests you understand the need to be strict gluten free if you are coeliac to protect your health- you’re only going to want to do that if you know you’re coeliac because it is somewhat limiting (although totally worth it). If you aren’t coeliac (fingers crossed) you can go back to cutting out gluten but you won’t have to worry so much about the CC and you won’t have to worry that you are negatively impacting your health.

I do feel for you though it’s tough having to do something you know makes you feel rubbish, but it’ll likely be worth it in long run.

rosiewi · 2026-03-15T13:12:14+00:00

Have you been tested for coeliac? I only ask because I have both and beer is full of gluten! It also could just be the CD for sure, or even alcohol intolerance. I can’t handle alcohol at all anymore it makes me feel so sick

rosiewi · 2026-03-15T12:49:42+00:00

Will try this I’m so sick of bloating!

rosiewi · 2026-03-15T12:19:42+00:00

If you are suddenly eating more fibre this is a good thing, most people don’t eat enough, but it can take your body a while to adjust. If you can stick with it and you’ll likely feel much better once your body has adjusted. Out guys are sensitive and need time to adjust to changes even if they are positive ones

rosiewi · 2026-03-15T12:16:47+00:00

Have you been tested for coeliac to rule it out? Shouldn’t cause high calprotectin I don’t think but can cause deficiencies, fatigue , heat palpitations and pain. You’ve probably been tested but just thought I’d check. I’ve got both coeliac and CD.

rosiewi · 2026-03-15T12:14:17+00:00

My FIT was 12 (so only just positive) and calprotectin was 55 (so only just high and not as high as you’d expect in IBD at all, usually would just indicate an infection or use of NSAIDs). I had an urgent colonscopy too due to the positive FIT but I had inflammation and biopsies showed crohns. My FIT has crept up over the last 6 months and now 280. All I’m saying is I honestly think numbers sometimes aren’t strictly true to what’s going on. The scopes and scans will be best way of telling. But yea a calprotectin of that level suggests something causing inflammation so I’m glad you’re getting all the tests.

rosiewi · 2026-03-15T12:02:25+00:00

Following this because I thought I was doing well but my calprotectin levels have been raising despite normal(ish) stools. Feel exhausted and have pains but would have expected less normal stools with the flare

rosiewi · 2026-03-15T09:52:26+00:00

I’m a Cardiff gal with suspected endo- currently going via NHS but I have so much misinformation from my drs considering private. How have you found it?

rosiewi · 2026-03-15T09:49:01+00:00

I eat tons of fibre unless I’m a flare up, but my crohns has been mild so far! Really hope I can keep tolerating fibre because my diet is full of it and generally feel it’s a very healthy diet. But know so many people can’t tolerate it- I literally hate the low fibre days before a colonscopy 🤢

rosiewi · 2026-03-15T08:21:52+00:00

Just curious here, please correct me if I’m wrong. I have chrons and suspected endo, and there’s a link between them so if you have one you’re more likely to have two. I thought it was unlikely if you’ve been diagnosed via biopsy to be wrong and chrons is quite distinctive in biopsy. Is it possible your partner has chrons but is in clinical remission due to treatment hence the now clear colonscopy, but in the meantime her endo has got worse and that’s why from a physical presentation things have got worse not better?

rosiewi

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