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Coeliac condition in 18 y old gd diagnosed as late onset at 16 y

(15 Posts)
Pebbles101 Tue 06-Apr-21 11:06:16

Anyone any experience of late onset diagnosis of coeliac? My gd is still struggling with this after a year of being gluten free - she seems to feel sick all time after she eats and generally struggles to feel well. And is tired all the time. Any help welcome - not with the diet and food as she is vg at sorting that out and cooks a lot for herself - but with experience of whether it affects the rest of ones health. .?

hazel93 Tue 06-Apr-21 11:23:27

I'm not medically qualified but I do think your GD should make an appointment to see her GP as this seems way too long to feel unwell.
My DIL is coeliac, diagnosed in her early teens - now 32 and no problems at all.
Sorry if this is not much help but if she is, as you say, not having gluten in her diet, maybe something else she is allergic to. Just a thought.

cornergran Tue 06-Apr-21 11:29:26

I agree with haze, a friend was diagnosed in her 50's, changing her diet made her feel better than she had for years. More recently she did experience bouts of nausea which were were traced to diverticulitis. It would seem sensible for your granddaughter to consult her GP, there could be another condition previously masked by coeliac. Hope she feels much better soon.

EllanVannin Tue 06-Apr-21 11:39:08

There's bound to be a level of anxiety thrown in as well which would account for her feeling unwell ( sick ) for a lot of the time. Anxiety can affect the gut which also has a bearing on your overall health, but a visit to the GP would be in order.

lemsip Tue 06-Apr-21 12:02:07

My son was diagnosed with coeliac disease in his 40s he has to have annual bone scans after first one showed he had Osteopenia, the start of Osteoporosis through not getting the nutrients from his food because of undiagnosed coelic disease. He has to take calcium and vit D each day.
He is into sport and running so fit and well otherwise.
fortunately your gd dianosed early.

Pebbles101 Tue 06-Apr-21 14:31:31

Thank u all - it’s been hard for her to actually see a gp or indeed her consultant ( who recently changed from children to adult services) and she finds it difficult on the telephone. I will talk to her mum again tho.

Oldbat1 Tue 06-Apr-21 14:47:03

Just wondered if she has regular blood tests? GD is coeliac and has her bloods checked at least once a year. Diagnosed aged 7. She takes liquid iron when required. She is now 13. Always looks very very pale though.

Thistlelass Wed 07-Apr-21 22:27:05

As far as I am aware, there can be variations in how badly one is affected.

Callistemon Wed 07-Apr-21 23:37:58

She should have regular tests to check her haemoglobin levels as she may have difficulty absorbing iron and other nutrients from food because gluten can destroy the villi in the small intestine.
They may well grow again if she sticks absolutely to a gluten free diet but it does take time.

It's surprising which foods contain gluten in some form or another.
People who are coeliac often have an intolerance to avenin which is found in oats - even gf oats contain avenin.

Perhaps the GP could run some blood tests to check her nutrient levels.

rascal Thu 08-Apr-21 00:40:34

I was diagnosed with Coeliac in my early fifties. My tummy has never been right on a very strict gluten free, lactose free & yeast free diet for twenty years. I have to take a loperamide if going on a journey as I can't rely on not having diarrhoea. Last year gp said test came back I had a high level of colprotectin which indicates inflammatory bowel disease. So I've found after many years that being on a gf diet isn't the full solution. I hope your gd finds out how to settle things and feels better soon. thanks

vampirequeen Thu 08-Apr-21 11:55:57

DD was diagnosed in her thirties. They discovered it when they were trying to find out why the thyroxine they were giving her for another condition didn't seem to be working. It turns out that she was not only lacking in thyroxine but in virtually every vitamin and mineral you can imagine as the Coeliac disease was preventing absorption. It would be worth your GD asking for a blood test to check that's not happening to her.

Pebbles101 Thu 08-Apr-21 12:39:47

Very interesting points thanks all - gd is having blood tests next week so maybe helpful.

PernillaVanilla Thu 15-Apr-21 12:15:33

My husband was diagnosed in his 50's. he suffers from vitamin deficiences, particularly vitamin D and struggles to keep on weight. There seems to be far more to it than not eating food containing gluten and leading a normal life.

Sarnia Fri 16-Apr-21 09:34:30

My 21 year old GD had an endoscopy this week to look for signs of coeliac disease. She has been suffering for a couple of years now and had to wait 11 months for this procedure. Her GP stressed the importance of a food diary and she has found it surprising the foods that agitate her tummy. It is a painful condition so I would urge her and her Mum to contact the GP for some tests to be carried out. I wish her well.

JaneJudge Fri 16-Apr-21 09:38:16

It is really interesting to see how many late dx there are of coeliac disease. My very close friends was dx in her 40s too after years of being ill (also with a thyroid problem) I thought it was unusual but obviously it isn't.

Sorry I can't be more helpful. I think at 18yo they are such a worry anyway without having to cope with health issues. The GP should be working, so I agree with others, get in touch with them x