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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:
Bushmillsbabe · 20/07/2024 09:31

LoveSandbanks · 20/07/2024 05:40

I can’t tolerate the soy sauce. I can’t even eat marmite anymore. I definitely couldn’t eat spare ribs in sauce or pancakes.

The pancakes are made with rice flour,so are gluten free.
If he has even a may contain he is often in agony. Luckily we know our local chinese well, and they sat down and went through ever dishes ingredients, they make his in seoetate area of kitchen etc

Saltysea2001 · 20/07/2024 09:33

I’d be inclined to jump in “OMG MIL - don’t eat that, it’s got gluten in, you’re going to get terribly ill”.

Tryonemoretime · 20/07/2024 09:42

LoveSandbanks · 20/07/2024 05:40

I can’t tolerate the soy sauce. I can’t even eat marmite anymore. I definitely couldn’t eat spare ribs in sauce or pancakes.

You can have gluten free tamari soy sauce, @LoveSandbanks,. And Tesco Yeast Extract tastes just like marmite (on toast). Both are Gluten Free.

Bluemonkey2029 · 20/07/2024 10:02

LoveSandbanks · 20/07/2024 05:40

I can’t tolerate the soy sauce. I can’t even eat marmite anymore. I definitely couldn’t eat spare ribs in sauce or pancakes.

Tamari soy sauce, Aldi own brand Marmite and rice paper spring roll wrappers as pancakes if you want to make it yourself. All gluten free. Or lots of Chinese takeaways do gluten free if you ask them to.

Bluemonkey2029 · 20/07/2024 10:06

wateringcanface · 19/07/2024 23:29

My friend who has coeliac disease has had to have multiple abdominal surgeries, is on medication for her liver and kidneys, has developed ulcers along her colon, and developed early onset arthritis, possibly needing a knee replacement in her early 30s, all attributed to undiagnosed coeliac basically causing havoc with her organs. Your mil maybe gets a bit bloated and uncomfortable when she eats bread, she doesn't have coeliac.

Except she could have CD. It can 'trigger' at any age so if MIL has been diagnosed quite early she could still be eating gluten and not getting many observable symptoms. It's incredibly dangerous though because the long term consequence of that is what your friend went through as it sounds like she sadly went undiagnosed for a long time.

CrunchyCarrot · 20/07/2024 10:12

LoveSandbanks · 20/07/2024 05:40

I can’t tolerate the soy sauce. I can’t even eat marmite anymore. I definitely couldn’t eat spare ribs in sauce or pancakes.

Try Tamari sauce - it's gluten free and a good soya sauce replacement, I use it. As for a Marmite replacement, you can get GF Vegemite, that's similar (imo nicer!).

helpsoughtplease · 20/07/2024 10:42

irishmurdoch · 19/07/2024 19:37

She could be putting herself at risk of bowel cancer doing this. Coeliacs simply should not eat any gluten at all, as you can't know what silent damage is being done.

She does it v v rarely.

MarvellousMonsters · 20/07/2024 17:54

There is such a thing as Silent Coeliac disease, people with this don't have the classic gastric symptoms from eating gluten, but it's still damaging their intestines.

Some people also really struggle with the change of lifestyle and dietary restrictions and 'cheat' even though it makes them poorly.

Or she's lying.

MarvellousMonsters · 20/07/2024 17:57

nooobeginnings · 19/07/2024 17:22

CD is tested for in a lab. They send your poo away I think and then have to try and culture it over several weeks to see if you have CD. I was tested and didn't have it.

I do however sympathise - a lot of wheat containing foods are highly processed e.g. British bread (its an embarrassment compared to other cultures). Gluten free bread simply contains other highly processed ingredients. Whereas sourdough is usually just wheat and flour. However these options are more expensive.

I've flip flopped into telling people I'm gluten free in the past but now I just buy the more expensive breads like sourdough and Crosta Mollica. Its helped my gut health a lot such that I don't have to super strict at all times as the bulk of my diet is free of ultra processed ingredients.

In short diet is confusing about what we should be eating and it takes a while to figure out what works for you and it may change over a lifetime.

Edited

It's a blood test followed by a gastroscopy& biopsies.

MarvellousMonsters · 20/07/2024 18:00

wilteddandelion · 19/07/2024 17:41

I have diagnosed coeliac and don't eat gf at all because I can't afford it.
What people do/do not choose to put into their own bodies is their concern and nobody else's.

Eating gluten free isn't expensive. Lots of foods are gluten free, you don't have to live on special freefrom foods. You need to stop eating gluten, you are damaging your intestines, and setting yourself up for all kinds of problems, from osteoporosis to increased risk of bowel cancer.

Hillarious · 20/07/2024 18:01

To be fair, all those with gluten intolerance or just being faddy about gluten have done wonders for my coeliac friend, as gluten free food is so much easier to come by now.

TheSquareMile · 20/07/2024 18:38

wilteddandelion · 19/07/2024 17:41

I have diagnosed coeliac and don't eat gf at all because I can't afford it.
What people do/do not choose to put into their own bodies is their concern and nobody else's.

@wilteddandelion

Is anything available to you on prescription via your GP?

It will depend on the Trust in your area, but you may be able to get at least bread or flour.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/once-diagnosed/prescriptions/

niffynickers · 20/07/2024 19:25

As someone who's gluten intolerant I can risk the odd item as long as I don't overdo it. Gluten intolerance is far more common now yet still misunderstood by many including some of the medical profession.

PUGMEISTER21 · 20/07/2024 19:26

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.

Has she had a stomach biopsie, if she hasnt then it has not been comfirmed. There is a blood test that hints at Coeliac disease but has to be confirmed with the biopsie. My ex wife IS a coeliac and even the smallest amount if Gluten (even on things like soy sauce) would make her unwell for six weeks.

Liferiddle666 · 20/07/2024 19:34

I'm a coeliac and i react really harshly to tiniest amounts of gluten. However my uncle can consume gluten with no reaction at all. It still does damage to the body though. He's now battling bowel cancer so eating gluten "cause he doesn't react" has caught up with him. It's an autoimmune disease, it eats the body from the inside :(

Theunamedcat · 20/07/2024 19:42

I've never been able to be tested for celiac disease as it makes me so ill eating gluten so it's on my records as a gluten intolerance my friend however is a diagnosed celiac she still eats wheat then sobs all over Facebook when she gets ill she has recently been up and down medically and posted all her recovery dishes on her page they contain gluten so she is nearly hospitalised again "for tests" and "let's see if they can get to the bottom of it this time" she has even threatened to change Dr's what she hasn't done is cut gluten out of her life completely

my point is If she was a genuine celiac she would know about it

macandcheeseforthewine · 20/07/2024 19:52

Forgetting about the op and her mil for a minute (apologies!), I'm shocked at the number of Coeliacs on here who don't seem to have heard of the term 'silent coeliac' before.

Yes, the majority of Coeliacs exhibit some horrible side effects when eating gluten, such as sickness, diarrhoea, fatigue, brain fog, joint pain etc. But there are others who don't get any of the symptoms, hence the term silent coeliac.

It doesn't mean that they're not causing damage to their insides, of course they are. But just because you as a coeliac throw up when eating gluten (accidentally or on purpose), it doesn't mean that everyone does. And I can only imagine how much more difficult it is for someone who doesn't display any of those symptoms and is struggling with their diagnosis to actually stick to a gluten-free diet.

Just thought I'd throw that in there, as I've been genuinely shocked at some of these replies.

CormorantStrikesBack · 20/07/2024 19:59

@macandcheeseforthewine my GP told dh he didn’t need to be tested for coeliac disease after I sent him to ask for a test (after what looked,like a possible coeliac rash, and Dd has coeliacs). The gp declined the blood test as she said if dh didn’t have any stomach issues he couldn’t possibly have it. 🙈. I had to send him back!

Disuf · 20/07/2024 20:37

This reminds me of something my MIL did a few years ago:

she’s claimed to have coeliac disease for longer than I’ve known her, however, when pushed on the subject it transpires that this was not diagnosed during a colonoscopy that investigated for this, or in a blood test. She makes a big song and dance about everything having to be gluten free everywhere she goes but occasionally you’ll catch her eating something very gluteny and she’ll pretend she hasn’t.

So, she was hosting a family party and got the fish and chip shop down the road to deliver fish and chips for everyone. Her SIL is diagnosed with coeliac disease and brought her own food with her because MIL said that they couldn’t cook the fish and chips on separate oil so it wouldn’t be gluten free. MIL was raging about this and said “I just pick the batter off my fish - I don’t understand why she can’t do the same, she’s making a fuss about nothing.”

FFS. No. The poor woman is genuinely coeliac and would likely be extremely ill for days if she did that!

Greenshed · 20/07/2024 20:48

My understanding of coeliac disease is that you cannot eat anything with gluten at all or it will make you very ill indeed. I don’t think you can be “a little bit coeliac”. My friend, certainly, can’t have anything containing gluten or it will make him very unwell.

Tbry24 · 20/07/2024 20:49

She’s probably intolerant to gluten and probably dairy and other things. I’ve had problems over the years, stop eating things for a year or so for example milk, bread, pasta all at different times in my life and then my body would be ok again with small quantities.

she’s probably just avoiding any foods that make her feel really ill.

Ailbhe123 · 20/07/2024 20:59

My MIL is a coeliac. Likes to tell everyone she's 100 percent coeliac and demands gluten free foods when she visits anywhere. Truth be told, when she's at home she devours chocolate bars and crisps that aren't gluten free and then puts on the pity me act. She doesn't work so can spend her days in bed after eating gluten.

FeetLikeFlippers · 20/07/2024 21:34

Well she is obviously bullshitting and as for the wedding list thing - just wow! That tells us everything we need to know about her and I wouldn’t be standing for her nonsense any longer. I’d be really tempted, next time I saw her about to eat a biscuit, to snatch it out of her hand in horror while exclaiming “Oh my god Barbara (don’t know why but I’m imagining her as a Barbara) you can’t eat that it’s going to make you really sick”. But then I am a grumpy old woman who is increasingly intolerant of other people’s bullshit! Also, her not coming to your wedding sounds like an ideal outcome but I do realise it’s not that simple with family. Sorry, did I even answer your question? No she bloody well doesn’t have CD she’s just a self-obsessed attention seeker.

Miserytubs1993 · 20/07/2024 21:53

I have coeliacs disease. I suffered terribly for years until finally after blood test & endoscopy it was confirmed I had CD. Anyone who seriously has it and cares would not risk it. It’s not only about having tummy trouble for a few days after and feeling unwell, but also the long term health implications.. bowel cancer being one of them. I highly doubt she has it

FeetLikeFlippers · 20/07/2024 21:56

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

That’s exactly what I thought. I’d be taking everything she said with a shovel of salt! That and the fact that she keeps eating gluten tells me she’s gluten intolerant but has not been diagnosed with CD. Digestive problems like gluten intolerance are pretty common in older women as it’s one of the many fun side dishes that come with the menopause.