Teenager with strange illness.

Bikerman2019

I'm looking for suggestions about what to do next.

I have a daughter, 16, who is a coeliac. She has this puzzling issue of weird bruising and occasional nose bleeds. The doctors have ordered a battery of tests and all has come back clear.

Today she has brusing on her legs, you would think I bent her over and slippered her, big brown bruises on the upper part of her legs.

We will have to go back to the doctor again with photos of the bruises. Its unbelieveable as you would think she was battered. As part of her ordered blood tests, she was told to eat gluten to provoke a detectable response, but all came back clear. I think we are still waiting for the gluten test to come back, but we know she is, just like her mother. When she eats gluten, she is in bits, but she came back off it about 3 weeks ago.

The closest thing online is lukemia, but the brusing is completely different. Anybody any ideas what to do next? Ask for a second opinion perhaps?

RentDayBlues

Can’t help on the bruising but if your daughter is a coeliac what sort of gp would advise her to eat gluten?!?

troyzer

I don't like this second guessing of doctors via the internet.

If you want a second opinion, get it from another doctor. Not the internet.

2xj3hplqgsbkym

RentDayBlues wrote: »

Can’t help on the bruising but if your daughter is a coeliac what sort of gp would advise her to eat gluten?!?

The test won’t show gluten intolerance if she has eliminated gluten from her diet. It is sound advice.

Bikerman2019

RentDayBlues wrote: »

Can’t help on the bruising but if your daughter is a coeliac what sort of gp would advise her to eat gluten?!?

We know she is coeliac, but was never officially diagnosed. After an extended period of illness, upset tummy, the runs, its still a mystery, she was told to eat gluten to try and provoke a detectable reaction. They did a battery of blood tests and found nothing.

The bruising on the back of her legs are large "clouds" of brown brusing.

Bikerman2019

troyzer wrote: »

I don't like this second guessing of doctors via the internet.

If you want a second opinion, get it from another doctor. Not the internet.

I am not silly enough to seek medical advice on the net, I'm wondering what to do next. They cannot find anything wrong.

Former Observer

Bikerman2019 wrote: »

I'm looking for suggestions about what to do next.

Does she have any vitamin deficiences?

troyzer

Bikerman2019 wrote: »

troyzer wrote: »

I don't like this second guessing of doctors via the internet.

If you want a second opinion, get it from another doctor. Not the internet.

I am not silly enough to seek medical advice on the net, I'm wondering what to do next. They cannot find anything wrong.

You just admitted you consider her coeliac even though she was never diagnosed and now you're on the internet thinking she has cancer.

Major alarm bells here. Stop second guessing your doctors. If there's nothing wrong with her, there's nothing wrong with her. Nosebleeds are very common and my missus gets bad bruising for no reason. It happens.

If you're genuinely not happy, go to a second doctor. Googling stuff only makes it worse. But chances are she's fine.

Just to add to this. I've had a range of weird symptoms over the last few years which my doctor couldn't fathom. Recently I had my first panic attack and it's clear now that these symptoms are psychosomatic. They're not actually real. Just knowing that means they're less common.

Bodies are weird.

Bikerman2019

troyzer wrote: »

You just admitted you consider her coeliac even though she was never diagnosed and now you're on the internet thinking she has cancer.

Major alarm bells here. Stop second guessing your doctors. If there's nothing wrong with her, there's nothing wrong with her. Nosebleeds are very common and my missus gets bad bruising for no reason. It happens.

If you're genuinely not happy, go to a second doctor. Googling stuff only makes it worse. But chances are she's fine.

Just to add to this. I've had a range of weird symptoms over the last few years which my doctor couldn't fathom. Recently I had my first panic attack and it's clear now that these symptoms are psychosomatic. They're not actually real. Just knowing that means they're less common.

Bodies are weird.

I said she is coeliac as on a hospital admission, the consultant said if the mother has it, and it is inflamed by gluten, then she is probably coeliac.


I also said the closest with brusing is lukemia, but its not. I dont know how you read I said she had cancer.


I am not second guessing the doctors - again, where did you read that. I said the doctors cannot find anything so what should I do next.


She is not well, the doctor sees this, but cannot find the cause, I am not second guessing anyone. Please stop.

Indeed, bodies are weird and I hope you are right, that whatever it is resolves itself.

SaveTheBees

You really should get a second opinion.
It could be caused by such a simple thing like a medicine but also clotting problem, an infection (Strep B etc.), lupus (very uncommon but my friend was diagnosed with it).
I hope you will get to the bottom of this and hopefully it's nothing too serious

Bikerman2019

SaveTheBees wrote: »

You really should get a second opinion.
It could be caused by such a simple thing like a medicine but also clotting problem, an infection (Strep B etc.), lupus (very uncommon but my friend was diagnosed with it).
I hope you will get to the bottom of this and hopefully it's nothing too serious

Thanks. All blood tests came back clear so dont know about any vitamin deficiencies. I dont know why I am being accused of second guessing a doctor. He has no opinion, he cannot find anything !

I think a second opinion or take photos of the bruising and take it into the doc myself.

zoe 3619

Could she have done anything to cause the bruises?
Not suggesting self harm,but my legs bruise very easily.Carrying a heavy bag that knocks of my legs always leaves bruising even though I wouldn't notice any pain at the time.
Would there be another doctor at the practice you could talk to?
Best of luck and don't be googling too much.

mvl

if not done yet, I would try to get appointments with hematologist or geneticist ...

Bikerman2019

zoe 3619 wrote: »

Could she have done anything to cause the bruises?
Not suggesting self harm,but my legs bruise very easily.Carrying a heavy bag that knocks of my legs always leaves bruising even though I wouldn't notice any pain at the time.
Would there be another doctor at the practice you could talk to?
Best of luck and don't be googling too much.

Good point, I even asked her had she sat on a wall, its about that height on the back of her legs.



Hopefully the docs will eventually find something.

zoe 3619

Bikerman2019 wrote: »

Good point, I even asked her had she sat on a wall, its about that height on the back of her legs.



Hopefully the docs will eventually find something.

Also,not suggesting that this is case,but can you rule out bullying that she doesn't want to talk about?

ger vallely

Hi, this puts me in mind of a condition my mother had many years ago. I still remember the spelling as I used to collect her sick cert from the doctor. Eurethyma Nedosum. Obviously not saying it is this but it sounds very similar. It caused bruising all over her legs, you'd swear she'd been beaten. The condition was not sinister in any way and eventually cleared up, after quite some time to be fair. Hope you get some answers, tis awful worrying about your children. Best of luck.

Bikerman2019

zoe 3619 wrote: »

Also,not suggesting that this is case,but can you rule out bullying that she doesn't want to talk about?

Dont think so as we know her friends well and someone would say something.

ger vallely wrote: »

Hi, this puts me in mind of a condition my mother had many years ago. I still remember the spelling as I used to collect her sick cert from the doctor. Eurethyma Nedosum. Obviously not saying it is this but it sounds very similar. It caused bruising all over her legs, you'd swear she'd been beaten. The condition was not sinister in any way and eventually cleared up, after quite some time to be fair. Hope you get some answers, tis awful worrying about your children. Best of luck.

I guess we will hold on and hope they come up with something. If it continues, will probably have to go for a second opinion (unless anyone has a better idea)

Wesser

I assume you have seen a haematologist?

Former Observer

troyzer wrote: »

If you're genuinely not happy, go to a second doctor. Googling stuff only makes it worse.

Plenty of things you can learn on the internet, including on forums like this.

Plenty of ignorant, borderline stupid doctors out there also. Need to have your wits about you, and ask the right questions, which is where discussing things with others can be helpful.

Graces7

Bikerman2019 wrote: »

I said she is coeliac as on a hospital admission, the consultant said if the mother has it, and it is inflamed by gluten, then she is probably coeliac.


I also said the closest with brusing is lukemia, but its not. I dont know how you read I said she had cancer.


I am not second guessing the doctors - again, where did you read that. I said the doctors cannot find anything so what should I do next.


She is not well, the doctor sees this, but cannot find the cause, I am not second guessing anyone. Please stop.


Feeling for and with you. This is what I lived with for 30 years; ill but no test showed anything. I have CFS/ME, finally diagnosed after all those years. When I accessed my notes way back eg.. "she has many real symptoms that we cannot account for.."

Many very real illnesses are diagnosed by " exclusion" as CFS/ ME is. As is happening with your daughter.

Please do not lose heart. Maybe try some online illness support groups by googling eg bruising.

And yes to seeking a second and specialist opinion, or many..

She is so young still as I was. do not lose heart and do not let folk discourage you. persevere? I got consigned to the psych "bin" ; she is blessed to have you seeking an answer... bravo!

Lillysue99

I have a relative with a chronic gut condition. She had similar symptoms with bruising although not nose bleeds, but gums bleeding.
She was advised by someone ( not a doctor) to take a good quality Vit C.

I got her Solgar ester c 500 mg. If you get the cheap kind or take too much it can cause diarrhoea. She took one a day. She has no bruising now or bleeding.

Maybe start you daughter on 500 mg and if that doesn't work increase to 1000 mg, as long as it doesn't give her diarrhoea. Cut back if it does.

Doctors were monitoring my cousin's bloods regularly. They don't seem to pick up these things. I was telling them for instance that she was so weak and breathless, not to mention ghost-like and she could hardly stand that she must need Iron.

They did a blood test and told me she was fine. Next week she was admitted for a scope and given not only iron but a blood transfusion.

My point is they don't really seem to take nutritional deficiencies seriously, or don't test properly for them. Try the Vit C I suggested. Also try eating some foods with high Vit C if her gut can take it. Kiwis, oranges, raw peppers on salads. Apparently raw peppers are loaded with this vitamin.

Give it a go and if it doesn't work maybe think about a naturopathic doctor. They will advise on diet and check for deficiencies which can cause all sorts of issues. Good luck.

Bikerman2019

Her tummy seems to have settled now but the coeliac blood test still has not come back.


She woke at 3am this morning vomitting badly with a banging headache. Managed to get back to sleep and today the stomach is ok but still a banging headache.


It's frustrating trying to pin this down. Dont think it was gluten as she ate the same as her mum, and she was fine.

Harry Palmr

Lillysue99 wrote: »

I have a relative with a chronic gut condition. She had similar symptoms with bruising although not nose bleeds, but gums bleeding.
She was advised by someone ( not a doctor) to take a good quality Vit C.

I got her Solgar ester c 500 mg. If you get the cheap kind or take too much it can cause diarrhoea. She took one a day. She has no bruising now or bleeding.

Maybe start you daughter on 500 mg and if that doesn't work increase to 1000 mg, as long as it doesn't give her diarrhoea. Cut back if it does.

Doctors were monitoring my cousin's bloods regularly. They don't seem to pick up these things. I was telling them for instance that she was so weak and breathless, not to mention ghost-like and she could hardly stand that she must need Iron.

They did a blood test and told me she was fine. Next week she was admitted for a scope and given not only iron but a blood transfusion.

My point is they don't really seem to take nutritional deficiencies seriously, or don't test properly for them. Try the Vit C I suggested. Also try eating some foods with high Vit C if her gut can take it. Kiwis, oranges, raw peppers on salads. Apparently raw peppers are loaded with this vitamin.

Give it a go and if it doesn't work maybe think about a naturopathic doctor. They will advise on diet and check for deficiencies which can cause all sorts of issues. Good luck.

is a branch of bogus fake medicine. It's dabbling in folklore and applying it with no basis in verifiable science. - works on suggestion not active medicine.

OP

Also do not just assume vitamin C is just vitamin C and harmless esp given your daughters apparent sensitivity

https://www.livestrong.com/article/410822-differences-between-ester-c-vitamin-c/

Ester-C is a pH neutral product which has a different composition from regular vitamin C, which is ascorbic acid. The main component of this product is calcium ascorbate. Other ingredients of Ester-C are compounds known as vitamin C metabolites, which are dehydroascorbic acid and calcium threonate. The manufacturer claims that it possesses superior bioavailability over vitamin C, but available research does not support this, the Linus Pauling Institute reports. Furthermore, The Linus Pauling Institute advises "Ester-C® should not be confused with ascorbyl palmitate, which is also marketed as 'vitamin C ester.'"

and

Go to the emergency room if you experience symptoms of an allergy such as swelling, hives or trouble breathing. Immediately stop taking vitamin C and contact your physician if you have serious symptoms such as painful urination, blood in the urine, profuse diarrhea or feeling faint. Other less severe side effects may occur such as heartburn, nausea or vomiting. Stomach aches, headaches and dizziness have also been noted. Check with your doctor before taking this vitamin and report any adverse reactions to him.

Stick to actual doctors and do not second guess them or start doing things when you have no knowledge to back it up.