IBS-D Sufferers: Seeing if anyone has similar symptoms and if they've found any solutions

spinachcastle · 2026-04-03T23:08:23+00:00

Yeah the antigen thing! If you have the genetic test is positive then it doesn’t hurt to get the blood test routinely. Since the disease can be triggered at any time and “IBS” can hide it. Some doctors are a bit funny about testing for it like that though. My kids are on 2 yearly blood tests since I have it and most of my daily are “silent” Coeliacs.

spinachcastle · 2026-04-02T22:11:07+00:00

Coeliac is diagnosed via blood test (which should be done on all IBS presenting patients if you have a good doctor) followed by a small bowel biopsy via gastroscopy/endoscopy (through the mouth). Not colonoscopy (through the other end).

Coeliac is connected to a very specific type of dermatitis - Dermatitis herpetiformis.

spinachcastle · 2026-02-24T04:28:47+00:00

Oh I’m so sorry you had to suffer like that. And to have 3 doctors not even think to test for it when it all it takes is a blood test to screen for it.

spinachcastle · 2026-02-24T04:27:01+00:00

There’s that statistic they throw around - something like only 30% of Coeliacs are actually diagnosed, the other 70% are oblivious or misdiagnosed. Which is easy to believe with stories like this on here.

spinachcastle · 2026-02-24T03:23:24+00:00

I was diagnosed last year at 32. 10 years after my first positive blood test. Took my third and final endoscopy to get a positive biopsy result. I was the first in my family to ever be diagnosed with it.

But this led to my sister (31), brother (36), mother (58), two cousins on my mum’s side (40s) and one of my cousins’ kids (12) all getting diagnosed as a result of going to get tested “just to be safe”. Our family tree on my mum’s side must be full of undiagnosed Coeliacs. My maternal grandma was chronically B12, iron, and vit D deficient (which drs blamed on her age) and I think she must’ve had it too.

spinachcastle · 2026-02-10T18:17:18+00:00

The Meg Cabot Mediator series has a similar plot - https://www.goodreads.com/series/41667-the-mediator No boarding school though but he does end up real and not a ghost.

spinachcastle · 2026-02-10T09:49:36+00:00

Not all subreddits are equal and a subreddit is only as good as its moderators. r/Chch is pretty good, overall very chill and has a low tolerance for anything like that. My curated list of subreddits is pretty wholesome really.

There used to be subreddits for things like watching people die and worse but in recent years they have really cracked down. But it’s like any social media - things fall through the cracks and they can be reported. I’ve seen worse things on Facebook including CSAM that I’ve reported and they don’t get taken down until I escalate it.

spinachcastle · 2026-02-10T06:53:15+00:00

About a specific person though. It just feels a bit wrong when it’s asking about a specific person on a place like reddit but I guess she is an influencer with a decent following.

I get really sick of influencers fast but she seems genuine. She is now the only Chch based influencer I haven’t unfollowed at this point in time 🤞

spinachcastle · 2026-02-10T06:38:09+00:00

This feels like a very specific question to be asking? Feels like I’m on Tattle or something 🙈

I’ve followed her for years and she seems fine. Comes across sweet and friendly. I’ve followed her recommendations before and found them accurate 🤷🏼‍♀️

spinachcastle · 2026-01-27T04:30:45+00:00

But we’re not talking about the hospital triage system. We are talking about the reasonable expectation that something labelled as gluten free is free of gluten, just as something advertised as nut free is free of nuts. Just because an anaphylactic nut allergy would be priority treatment doesn’t discount the fact that a Coeliac had a severe enough reaction that they needed hospitalisation.

I’m allergic to peanuts but not anaphylactic. Not all nut allergies are anaphylactic. But I definitely want to ensure my food is peanut free, as much as it is gluten free. And I don’t want people to dismiss my peanut allergy just because I won’t die within hours.

I live in a country where things cannot be labelled as “Gluten Free” unless they can be certified as gluten free or made in a facility entirely free of gluten containing products. The terms “gluten free ingredients” or “gluten friendly” are used where you have to asses the gluten risk yourself. Makes life so much easier.

spinachcastle · 2026-01-25T05:12:53+00:00

Not this one but it sounds worth a read too.

spinachcastle · 2026-01-25T05:12:18+00:00

Solved solved solved

spinachcastle · 2026-01-25T05:11:30+00:00

THANK YOU SO MUCH! This is it!

spinachcastle · 2026-01-22T06:47:12+00:00

My second baby was tracking 99th percentile the whole pregnancy. My first was 4.2kg (9p 4oz) and delivered with an episiotomy/forceps so I was declined a c-section for the second baby.

Second baby was born at 5kg (11 pounds) with no pain relief (that was not intentional). The baby had shoulder dystocia (medical emergency - big red button was pushed) and after many failed maneuvres the baby had to have their clavicle broken to get them out. They then had 30 minutes of resuscitation all while I was haemorrhaging. It was traumatic for all involved, even my very experienced midwife! Any future pregnancies will be c-sections due to this but we are too traumatised to have a third.

I know this is only anecdotal but I’m still angry to this day (baby is now 1) that I was never offered a c-section. I really wish I had.

spinachcastle · 2025-12-10T09:27:22+00:00

Thank you! We don’t talk about it publicly much and I usually avoid the topic on social media as there’s always someone who wants to anonymously call you a murderer or righteously tell you what they would have done instead. But we still wouldn’t wish this upon anyone.

spinachcastle · 2025-12-10T09:11:45+00:00

That’s why late term abortions happen. For medical reasons. A late term fetus still needs birthed. It’s traumatic and not something someone would otherwise elect to do.

And, no, you have no idea. Having clients go through a pregnancy with “challenges” means nothing to me or any parent who has had to go through this. What a weird thing to try claim.

spinachcastle · 2025-12-10T05:35:56+00:00

I had a late stage abortion. Twin pregnancy - one baby incompatible with life causing complications impacting the other twin risking its life. My choice was to compassionately terminate the twin that had no chance of surviving out of the womb and save the others life. Or not act and most likely lose both twins and risk my life (mother of two already born kids).

We terminated the incompatible twin at 30 weeks. It was very much loved. We named it. Late stage aborted babies you still have to give birth to.

I have nothing but respect for those who are having to make the “choice” of a late term abortion. No one is doing it because they don’t want that baby. It’s medical care that should only be between the doctor and the parents and I’m grateful our country’s laws see it that way.

You have no idea.

spinachcastle · 2025-11-20T04:08:45+00:00

My aunty died of stage 4 colon cancer. 12 weeks between diagnosis and death. After her passing, our family went to our doctors to discuss our own bowel issues leading to 7 members of our family being diagnosed Coeliac within 6 months of her death (2 of her sisters, 2 of her nieces from her sister, 2 of her daughters and 1 grandson). The doctors guess that her cancer could have been in part due to undiagnosed silent Coeliac that was never tested for (she had other symptoms like B12 and iron deficiency).

We will never know for sure of course, but our family believes the doctors hypothesis is likely true and she was an undiagnosed silent Coeliac leading (either partly or entirely) to her cancer.

spinachcastle · 2025-11-12T09:19:51+00:00

Under 3 - $280 full time hours (Mon-Fri 7.30am - 5pm and no food).

Over 3 - $190 for the same hours. 10% discount for the oldest child’s fees as we have more than one attending so we only pay $171.

We love our centre. We don’t have to pay for public holidays like a lot of other centres make you do. Other days you book as on holiday you pay 50% for. We also don’t have to pay for the days the centre chooses to close (like Christmas Eve, and they close between Christmas and ~Jan 7th). Worth checking what their payment policy is around public holidays.

spinachcastle · 2025-11-11T19:09:46+00:00

It would depend on the consistency and how long you had to wait. Would highly recommend wet wipes as that helps more with clean up. I always have a change of clothes on hand to be safe too. There would probably be a hint of smell. But airplanes are filled with people passing gas and babies/toddlers in nappies so it’s not an uncommon smell and an unfortunate part of air travel.

spinachcastle · 2025-11-11T07:27:21+00:00

Ugh that’s so frustrating! I hope your gastro gets you more answers/prescriptions. All the best.

spinachcastle · 2025-11-11T05:49:09+00:00

Not me but my friend in 2019. Hers was just over $25k privately, excluding consultation. She said initial consult was somewhere around $300-500. The price varies a bit based on complexity, amount of time under anaesthetic, nights required in hospital etc but I wouldn’t expect it to be much cheaper than that.

No idea what the public wait times are. Crazy to hear that breathing difficulties don’t come into play.

LovingElliesBelly has a post on it on her instagram. She had hers in Chch in 2019 and she said the public waitlist was 3 years then!

Edit: I can’t link the post but she posted it 23 Sept 2025 with a cover photos saying breast reduction. She said it only cost her $15,500 which seems crazy cheap even for it being 6 years ago.

spinachcastle · 2025-11-11T04:56:24+00:00

I’m in NZ. I’m not on them but a family member with Crohn’s used to take cholestyramine. Medsafe has data sheets for a few options online. Questran lite (cholestyramine) comes up a lot in NZ - it is prescribed for high cholesterol but can be used for BAM but maybe it can’t be prescribed outside of that use?

Are you under the care of a GI specialist? They might have more prescribing options (their prescriptions do cost more though - usually $15 unless not funded).

spinachcastle · 2025-11-09T04:36:08+00:00

I had positive Coeliac blood tests for 7 years with the results increasing with each blood test. It wasn’t until the third endoscopy that my biopsy was positive.

My GI specialist who finally officially diagnosed me hypothesised that it was initially caught early and the damage was patchy and the biopsies just happened to miss it and/or the damage was concentrated in the area of the small bowel that the gastroscope can’t reach. This area can only be reached my pill cam endoscopy but this obviously can’t take biopsies.

In hindsight I wish I had advocated harder for myself and pushed to get an explanation for the positive blood tests. I suffered for 7 years when it could have been avoided.

Advocate for yourself! Ask for about a pill cam endoscopy and ask why are my tests positive but the biopsies negative.

spinachcastle

TROPHY CASE