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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think she doesn't *really* have coeliac disease?

160 replies

CookiePookie · 19/07/2024 17:00

Coeliac disease - I understand from other friends who have been diagnosed with this that it's tricky but OK to deal with being gluten-free forever. My MIL has been diagnosed with this a year or so ago. Out of the blue she just announced she cannot have gluten any longer, and has Coeliac disease.
Just a bit of history - my opinion is that she seeks attention in all situations. My husband and my wedding - she demanded my private list of 'to-do' items including such things as 'wax bikini line', and when I did not give it to her she threatened not to come to the wedding until I apologised. Now, she may have CD and we always get in lots of gluten-free foods when they visit. She always asks in restaurants for the GF options. (and bemoans how poor they are). But most times we see her she will eat something containing gluten, like a regular biscuit or a bit of batter off fish and chips my FIL is eating. Can you just have a minor allergy to gluten? But she does insist it's Coeliac disease.

OP posts:
MyOtherWheelchairIsABroomstick · 19/07/2024 18:09

I don't think this is about the gluten. You mention other things that have offended you. Therefore she could say she had anything and you would think it's attention seeking.

FWIW my gastro consultant said I probably have celiac. I got worried after googling and finding out it can cause cancer. I was young and anxious. So I would say "no sorry I can't eat that until I have tests". Waited almost 6 months for the gluten tolerance test and it was inconclusive and I stopped feeling as unwell so didn't follow up. I occasionally get doubters asking why I've eaten some bread and I explain that avoiding gluten is so difficult after a lifetime of eating it that I just take the risk. I just can't have too much wheat or I get really horrible cramps. I'll probably never know what it is but it doesn't mean I was lying.

Shoyden · 19/07/2024 18:09

Some people with coeliac disease still eat some gluten. For many people the damage isn't immediate or even apparent. Many people think it always induces GI symptoms but for many people with coeliac disease that isn't the case. Some people experience neurological symptoms and some get none at all. Some people experience infertility and have no idea its the gluten in their diet causing it. Doctors don't care at all, so if she has actually been diagnosed then she's been lucky. The majority of people with the disease are never diagnosed.

CookiePookie · 19/07/2024 18:09

HesterRoon · 19/07/2024 18:04

I’m gluten intolerant which means I avoid it but if I fancy a bit of bread occasionally, I’ll have it. It’s only a problem if I repeat it. If I had CD I’d avoid it completely as even a tiny amount can cause serious problems. I think she’s embellishing what she’s got.

I feel like perhaps this is true; she's intolerant but doesn't actually have CD. I guess I should mind my own business and continue to purchase GF foods for when they visit. She was kind of put out when I bought GF custard creams last time though! 'they really don't taste very good'

OP posts:
Natsku · 19/07/2024 18:07

Yeah some people don't get bad reactions to gluten, I never did and only got diagnosed because anaemia and mum having it so thought better check. So if she had only mild symptoms when she got diagnosed, and hasn't fully gone onto a GF diet then she'll 'get away' with eating small amounts, as in she won't get bad symptoms but it will be doing damage.

landofgiants · 19/07/2024 18:07

Non-gluten eater here. It’s possible to have gluten intolerance and still be able to handle small quantities, such as a beer or the odd biscuit. If you have been diagnosed with coeliac disease then knowingly eating any form of wheat/gluten seems like a stupid risk to be taking with your health.

The first possibility is that she has been diagnosed with coeliac disease (I think that usually involves intestinal biopsy) and she’s just bad at sticking to the diet. Option two is that she’s either been diagnosed with or thinks she has a gluten sensitivity but she calls it ‘Coeliac disease’ because she doesn’t understand the difference. I feel that’s more likely, regardless of whether there’s an attention seeking element or not.

I agree that it’s annoying but there’s nothing you can do other than eating with her less often!

I sometimes have the opposite problem, when people try to force-feed me some wheat-containing product (usually a bit of cake) saying ‘surely a little bit won’t hurt’ as if them saying it emphatically enough will make it true!

CookiePookie · 19/07/2024 18:07

JamSlags · 19/07/2024 18:06

This. She might not have visible symptoms but she can still be causing internal damage.

I’m Coeliac, diagnosed through blood tests and biopsy of stomach lining, and boy do I react in the worst possible ways to an accidental glutening. My sister is also Coeliac and doesn’t react at all. Go figure!

It sounds very complex and tricky to live with. I'll learn to be more tolerant of her intolerance, and perhaps DH can ask her if she has all the info she needs from her doc to be sure she stays well.

OP posts:
CookiePookie · 19/07/2024 18:06

irishmurdoch · 19/07/2024 17:44

CD is an autoimmune condition - the body's immune system attacks the intestinal lining causing inflammation, malnutrition, and 300-odd other symptoms including neurological/skin issues and bowel cancer. You can't be 'a bit' coeliac - even a molecule of gluten can set off a reaction, snd sometimes even proteins that the body mistakes for gluten, like avenin.
Going by her behaviour, she is more likely to be gluten intolerant, which causes IBS-like symptoms.
Having said all that, some people have silent CD, where symptoms aren't obvious but damage is being stored up for later, so if she does really have CD, she needs to be more careful!

Thank you for this. I guess as others have noted it's not my business anyway, but was just dubious. My DH also wanted to know so I guess he can ask her if he would like to talk about it as she does bring it up an awful lot, so we are better educated about it for her sake.

OP posts:
JamSlags · 19/07/2024 18:06

CookiePookie · 19/07/2024 18:02

Ah OK - so she might just be thinking it's fine but it really isn't. She maybe should double check with her doc then. She said she gets awful stomach cramps if she 'has too much' gluten.

This. She might not have visible symptoms but she can still be causing internal damage.

I’m Coeliac, diagnosed through blood tests and biopsy of stomach lining, and boy do I react in the worst possible ways to an accidental glutening. My sister is also Coeliac and doesn’t react at all. Go figure!

needsomewarmsunshine · 19/07/2024 18:05

I would be more annoyed about her genral bat shittery ie your bikini line wax, wtaf?
If she wants to claim she's got a disease then has little or no evidence of it, let her crack on eatting what she wants. I wouldn't be wasting time, money and energy pandering to it.
I don't know the woman but I dislike her from what you've said OP

HesterRoon · 19/07/2024 18:04

I’m gluten intolerant which means I avoid it but if I fancy a bit of bread occasionally, I’ll have it. It’s only a problem if I repeat it. If I had CD I’d avoid it completely as even a tiny amount can cause serious problems. I think she’s embellishing what she’s got.

CookiePookie · 19/07/2024 18:04

MrsBuntyS · 19/07/2024 17:42

I have been completely gluten free for 7 years after being diagnosed with coeliac disease. (DNA and biopsy) if I eat even a tiny bit I vomit. Horrible. My DS also has it and can eat gluten without any symptoms. My dad who also has it is the same as me, if he eats gluten he is very ill. But dad can eat oats and I absolutely can’t. Everyone is different I think.

Thank you for this, she's likely a person that has less severe obvious symptoms then.

OP posts:
ricecrispiecakes · 19/07/2024 18:03

Lots of people are gluten intolerant, but that's not the same thing as Coeliac disease.

A friend of mine can't have any gluten or she gets really unwell - her whole kitchen is set up to accommodate it - she has her own toaster, for example, so she can't accidentally get "glutened" by her partner using it for regular bread.

But I know lots of other people who can eat gluten but just get an upset stomach for a bit afterwards if they eat too much. They'd never claim to have Coeliac disease but would always go GF in restaurants etc. just to be on the safe side.

CookiePookie · 19/07/2024 18:02

DataPup · 19/07/2024 17:32

You can have coeliac disease and not be violently ill after consuming gluten. It's still doing damage internally but there can be no apparent external symptoms.

Ah OK - so she might just be thinking it's fine but it really isn't. She maybe should double check with her doc then. She said she gets awful stomach cramps if she 'has too much' gluten.

OP posts:
CookiePookie · 19/07/2024 18:01

frankincenseandoranges · 19/07/2024 17:04

No, I don't think you can be mildly coeliac so if your post is the truth then she's lying, or she gets very ill after seeing you!

I find it just so weird!

OP posts:
BarryCantSwim · 19/07/2024 17:59

helpsoughtplease · 19/07/2024 17:53

Actually not everyone feels violently ill if they have CD and eat something with gluten!

DM has full diagnosis of CD. biopsy, the lot. It was diagnosed probably around 20 years ago or so. She didn't have the typical symptoms in that she became constipated (rather than had runny poo) and just comes out in a rash. However, she was fatigued as her body couldn't take up the nutrients due to the disease having damage her intestinal wall.

Nowadays she can get away with having the odd battered fish, maybe a sauce with flour in it but she's otherwise mostly very careful. This doesn't make her ill as such but she may suffer with constipation and get a rash.

I live with someone with a significant gluten intolerance; trace amounts give them bad tummy/lethargy for days. Not CD diagnosed.

I understood coeliac disease is very serious as whatever the symptoms it affects gut villi, making it smoother (not good) over time and therefore an inability to absorb nutrients.

I would be concerned about damage DM is doing irrespective of obvious symptoms?

IcyPenguin101 · 19/07/2024 17:59

Another diagnose coeliac here. I spent many a years in my childhood very ill before being diagnosed. As others have said, it’s an autoimmune disease with no cure - the only treatment is a life-long glutenfree diet. If I’ve been “glutened” I will know within 20-30 mins. If I ate a biscuit I’d be terribly ill and feel the effects for days.

Could she be just saying it’s Coeliac but it’s really just an intolerance?

Destiny123 · 19/07/2024 17:57

BruceAndNosh · 19/07/2024 17:06

Lots of people are intolerant of gluten without actually having Coeliac disease. They might "just" get cramps or pain or diarrhoea if they eat gluten and some might decide that these symptoms are worth it for a treat.
Actual coeliac disease causes damage to the gut lining not just the runs.

Yea it'll be an intolerance prob. For genuine coeliacs it's dangerous to regularly eat gluten

My mum is intolerant of eggs but loves them so much she puts up with stomach cramps and diarrhoea to eat them (mad imho

LizzieBennett73 · 19/07/2024 17:56

I've got two coeliac grandchildren who are incredibly unwell with even the slightest particle of gluten and no sign of them growing out of it. They're both incredibly sensible in asking what's OK to have from adults though, I'm so proud of them. They're old enough to know now how unwell it makes them for 48 hours.

There's a gaping chasm between gluten intolerance and coeliac disease.

FangsForTheMemory · 19/07/2024 17:55

She’s bullshitting. I have a friend with coeliac disease and she’s extremely ill if she eats any grain with gluten in. I on the other hand feel slightly unwell the day after eating a lot of wheat so I assume I have a slight intolerance.

helpsoughtplease · 19/07/2024 17:53

Actually not everyone feels violently ill if they have CD and eat something with gluten!

DM has full diagnosis of CD. biopsy, the lot. It was diagnosed probably around 20 years ago or so. She didn't have the typical symptoms in that she became constipated (rather than had runny poo) and just comes out in a rash. However, she was fatigued as her body couldn't take up the nutrients due to the disease having damage her intestinal wall.

Nowadays she can get away with having the odd battered fish, maybe a sauce with flour in it but she's otherwise mostly very careful. This doesn't make her ill as such but she may suffer with constipation and get a rash.

PToosher · 19/07/2024 17:52

My cousin has coeliac disease and a small amount of gluten makes him very ill. His mum, my aunt, has had ongoing health issues over many years and was recently diagnosed as also having the same condition, although it affects her in different ways and far less severely.

DoneAndNotDusted · 19/07/2024 17:52

@MrsBuntyS Curious about your father - I know some people with coeliac disease can eat oats; others, like you, cannot. Does he have to eat gluten free oats; I know oats are naturally gluten free, but can easily be cross contaminated with other grains? So coeliacs generally have to eat oats which state gluten free on the packet.

DopeyS · 19/07/2024 17:52

It is possible she has coeliac disease. It's unlikely but she might. I have coeliac disease and before diagnosis just ate normally. Every few months I'd be unwell but didn't realise it was a food thing as it wasn't like a lot of people. After my diagnosis I obviously gave up eating anything with gluten, now if I have something by accident I am sick a lot until it's gone and feel knackered. I never reacted like this before because my gut was damaged and since healing is more sensitive to it.

Put together with her other behaviour though it would point towards her not having it. It's the sort of thing that's hard to prove and obviously it annoyingly means having to 'make a fuss' at restaurants. Most coeliacs hate this aspect but for someone who is an attention seeker they may revel in it.

gingercat02 · 19/07/2024 17:50

She absolutely can have coeliac disease but still eat gluten. Lots of people don't follow the GF diet well, because it's really hard, it's very bad to do so as it can cause intestinal cancers. Some people aren't very symptomatic (abdominal pain, diarrhoea,etc) and appear to tolerate some gluten
A GF diet is hard, GF foods as rarely as nice as the gluten versions

Solocup · 19/07/2024 17:50

Plenty of people with CD still eat some. They shouldn’t but they struggle. I have really bad symptoms so it’s easier for ne not to, but you can have CD and have no symptômes (it’s still damaging them internally though). I think it’d harder for those people to always say no.
And then there’s intolerant to gluten people. Who do better avoiding but can have occasional bits without any internal or lasting damage.

She does sound a bit mad, but also gluten intolerances and cd is on the rise, and still quite under diagnosed.

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