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Original poster

15yo dd has lost so much weight, I'm worried

201 replies

Ddhealthworry · 21/01/2024 19:43

As per the title really, she has been feeling sick every time she eats anything sweet for a while now.

She has lost probably about 2-3 stone in the last 3 months (I don't keep scales in the house so not sure exactly).

She is eating, definitely, she isn't making herself sick, I'm 100% sure of that.

Her mood is quite low, she is really pale, the weight loss is very concerning, she feels sick when she eats anything sweet, she has absolutely horrendous periods, but has been on the pill for around 9 months (could this be the reason for the weight loss).

We are waiting for some blood tests to come back next week, but I have stupidly, spent the evening googling and am now terrified.

I'm hoping the test comes back and actually finds something, as mad as it sounds, just so it can be fixed, if it shows up with nothing then where do I go from there? What further tests should I be asking for.

Any help or words of advice or thoughts would be so appreciated.

OP posts:
XelaM · 22/01/2024 04:26

Hope your daughter is ok x

Newchapterbeckons · 22/01/2024 06:15

Hope you have been seen op

Oneearringlost · 22/01/2024 06:58

Have been thinking of you. X

Gcsunnyside23 · 22/01/2024 07:53

I immediately thought thyroid as symptoms match my friends but could be anything. Hope you get to the bottom of it soon

alivio · 22/01/2024 08:36

hope you're ok, op

ghrubnide · 22/01/2024 09:40

I can't believe the GP didn't do a finger prick test to rule type 1 out if nothing else.
My DC was diagnosed by the simple finger prick test in the gp's surgery and within 30 mins had been admitted to hosp with their first dose of insulin administered.
Hope everything goes ok at hospital and you get some answers

alivio · 22/01/2024 17:03

any news, op?

Original poster
Ddhealthworry · 22/01/2024 19:20

Hi everyone,

There was a hell of wait at the hospital last night, then my other dd had some difficulties because my friend was here instead of me so it's been a bit of a time of things. Everyone has settled now mainly which is a relief.

They ruled out diabetes, thankfully. They have sent a test away for coeliac, which will take a couple of weeks to come back (thanks to those who suggested that, as they werent going to but i requested it). They think it's more likely to be some type of autoimmune disease of the gut, there are a few it could be, she can't be tested at the moment because she was prescribed omeprezole, and she needs to be off that for a couple of weeks first. So the hospital did all they could last night.

Her bloods from the doctor today came back absolutely fine, not even anemia, no thyroid problems, she isn't deficient in any vitamins or anything like that. Which is good in a lot of ways, but if there was something there then it could be fixed we are a bit in limbo again now.

She has a lot of rib pain, which the lovely doctor I saw is sending her for an xray for this week, and is also arranging a scan due to her periods (not that she has them now) but she took me very seriously and is doing everything she can to rule out even the most random of stuff.

Dd was weighed when she started on the pill, she's down 3 and a half stone now.

She isn't buying anything online for weight loss or anything like that, whatever this is definitky isn't dd deliberately losing weight.

So basically night further forward, but being taken seriously, and the doctor is doing all she can, unlike the first one.

Thanks for all your help, I was worried sick last night, still worried, but things are moving in the right direction now.

OP posts:
x2boys · 22/01/2024 19:25

Agree it could be Diabetes my son was diagnosed last year after going into severe DKA, he lost a,it of weight hes,17 now ,so diagnosed at 16

x2boys · 22/01/2024 19:26

x2boys · 22/01/2024 19:25

Agree it could be Diabetes my son was diagnosed last year after going into severe DKA, he lost a,it of weight hes,17 now ,so diagnosed at 16

Ah sorry should have rtft!

Andthereyougo · 22/01/2024 19:33

I’d suggest getting a copy of all your DDs blood results from the GP ( they might charge for printing but you’re entitled to see them) Check that all vitamin levels are in the top quadrant of the range. I was told by my GP that my B12 was “ normal” I found it was one point into the normal range. A month of B12 injections and I could walk more than a couple of hundred yards without getting out of breath. Another month of them and I could walk up a hill again.

I hope you get to the bottom of it soon, OP.

Lastminutebride · 22/01/2024 19:35

Sorry edited as I’ve read the update. So glad she’s been seen and investigated. It’s such a worrying time for you and her

Rarewaxwing · 22/01/2024 20:08

Really glad to hear that the hospital is taking it all so seriously. And good news that diabetes has been ruled out.

Just to warn you, the blood test for coeliac is not always definitive: you can have a negative result, but still have coeliac. The correct course of action, if coeliac is suspected because of the symptoms, is to take a biopsy even if the blood test is negative. Coeliac UK can provide more on this. (I'm not saying I think your DD likely has coeliac - I just want you to be aware of the facts. Lots of doctors don't know this either, btw!).

I'm glad there are still investigations ongoing and I hope the doctors get to the bottom of it soon.

CormorantStrikesBack · 22/01/2024 20:17

Glad they’re doing lots of tests, though unlikely to be coeliac if she’s not anemic as malabsorption is a big feature of it.

dd though she’s much improved since going gluten free still struggles with digestion, feels bloated a lot, feels sick, can’t eat. She’s a size 4, actually size 4 is too big sometimes. She does have Ehler Danlos syndrome which can cause a sort of gut paralysis but the GP said this wasn’t it and refused to refer her to gastro 🤷‍♀️. She is also being investigated for endometriosis which can cause nausea and heavy periods which I know you said your Dd gets.

Mirabai · 22/01/2024 20:23

I’m glad it’s not diabetes. But autoimmune gut issues is not great either. I’m sorry you don’t have an answer yet.

They will likely do a colonoscopy at some point. That will differentiate Coeliac from Crohns and UC.

whatisheupto · 22/01/2024 21:42

Oh interesting. Good to rule out diabetes, but frustrating not to know what it is yet.

You can also have a genetic test for Coeliac which is very helpful. It is very accurate... so if it rules it out then you know she definitely isn't coeliac. If you get a positive it doesn't mean that she definitely has it, it means she is carrying the genes that mean she could have it. If she didn't have these genes, she definitley couldn't be coeliac. Hope that makes sense.

Also don't forget even if she isn't coeliac she could still have a strong gluten intolerance.

Also I have read of links between rib cage pain and gluten intolerance.

MumofCrohnie · 22/01/2024 21:50

Rarewaxwing · 22/01/2024 20:08

Really glad to hear that the hospital is taking it all so seriously. And good news that diabetes has been ruled out.

Just to warn you, the blood test for coeliac is not always definitive: you can have a negative result, but still have coeliac. The correct course of action, if coeliac is suspected because of the symptoms, is to take a biopsy even if the blood test is negative. Coeliac UK can provide more on this. (I'm not saying I think your DD likely has coeliac - I just want you to be aware of the facts. Lots of doctors don't know this either, btw!).

I'm glad there are still investigations ongoing and I hope the doctors get to the bottom of it soon.

I asked about this - desperately hoping my DD had coeliac and not Crohn's, despite her ttg test being ok - and the GI consultant said to me that a) it's very rare for the ttg test to be negative but the person to be coeliac and B) they can tell pretty much from the bloods that it's Crohn's/UC and not coeliac. Apparently it presents differently.

Have they referred to the gastro team?
Sorry to hear DD is so poorly, but once they work out what it is the support is so much better.

Rarewaxwing · 22/01/2024 23:01

More on coeliac testing here: www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/

You can have a false negative coeliac blood-test result if you a) haven't been eating gluten or b) have IgA deficiency.

Rarewaxwing · 22/01/2024 23:13

Apologies for banging on about coeliac - it's just that my son was dangerously underweight before he was diagnosed. He was on the verge of going into hospital. I knew nothing about coeliac and the doctors didn't consider it at first.

Once diagnosed and following a gluten-free diet, my son was finally able to gain weight.

Coeliac can be triggered at any age if you carry the gene. So you can be OK consuming gluten for years, then start getting mysterious symptoms because your body has started producing antibodies to gluten.

CormorantStrikesBack · 23/01/2024 07:43

Rarewaxwing · 22/01/2024 23:13

Apologies for banging on about coeliac - it's just that my son was dangerously underweight before he was diagnosed. He was on the verge of going into hospital. I knew nothing about coeliac and the doctors didn't consider it at first.

Once diagnosed and following a gluten-free diet, my son was finally able to gain weight.

Coeliac can be triggered at any age if you carry the gene. So you can be OK consuming gluten for years, then start getting mysterious symptoms because your body has started producing antibodies to gluten.

Dd was admitted to hospital. She was getting sicker and sicker while on a 6 month wait for endoscopy. We couldn’t wake her properly one morning. Hospital said she was about 24 hrs from dying with chronic malnutrition. Really deranged bloods, low potassium, etc. it can be dangerous. A&e assumed eating disorder at first and I had to be quite firm that I knew it wasn’t.

LyricalGangsta · 23/01/2024 08:02

Have not read the whole thread but see you have been to the hospital etc.

At 14/15 when I was put on Microgynon the weight absolutely fell off me.

Once I'd finished having children at 28 and requested to be put back on it it had the opposite effect, much to my dismay.

Just my experience

3luckystars · 23/01/2024 08:07

I hope you get some answers soon.

Rarewaxwing · 23/01/2024 10:30

@CormorantStrikesBack - that's terrifying. I'm so glad your DD was diagnosed and is now GF.

Original poster
Ddhealthworry · 23/01/2024 17:46

You're not banging on about coeliac at all, this is all really helpful.

Usually when one of my kids has a health issue I know roughly what it is, and what to start researching, and get answers on how to help, but this has just been a nightmare and I didn't know what direction to go in at all.

I've decided to keep a food diary, I haven't until this point just because it seemed to be sugary things that made her feel like this, but a diary will be better to see if there's other things that trigger it.

The pill dd is on is Levest, which doesn't have weight loss as a side effect at all.

It is frustrating not to have answers yet, but good to have diabetes ruled out, she has the same doctor again in a couple of weeks when her coeliac test comes back and the scan results come back and she's been off omeprozole for a couple of weeks for the next tests.

I don't know what would be worse at this point, nothing coming back, or something coming back from these tests.

Thank you all so much for sharing your experiences, it means a lot that you've taken the time to help another scared mum out by sharing that difficult part of your lives.

OP posts:
CormorantStrikesBack · 23/01/2024 17:54

If you’re keeping a food diary check all labels for BROW, including may contains. Barley, rye, oats and wheat. For instance galaxy chocolate is ok to eat but Dairy Milk is a may contain…….so if she’s always sick after eating a bar of dairy milk don’t assume it’s not coeliac because it’s not a slice of bread.

edited to say if stuff is in the ingredients it will be in bold which helps. But a may contain warning is generally not in bold, it’ll be below the ingredients. I still get caught out occasionally by a may contain.