To ask for medical advice

[FoxInABox]

Before anyone flames me (donning my hard hat!) I just want to ask the opinion of those with medical training in here please. I will of course speak to my own Gp but I would like a few opinions so I know if there’s anything I need to ask specifically, or if I shouldn’t be concerned. I have done my own research but I know Dr Google can be a bit of a rabbit hole.

My teenage DD has had bloods done after 2 years of stomach pains, all across her stomach area. We have been back and forth the doctors in this time, and she has tried IBS medication with no joy. It doesn’t affect her bowel movements and she says they’re normal and there’s no pattern with the pains. There doesn’t seem to a pattern related to any particular foods or pain after eating- it is fairly random. She has recently started feeling full quickly also and not being able to finish meals.

The blood results have come in today. Everything was normal - but one seemed the very low end of normal. The serum ferritin was 17.1, with normal range marked as 13.7-78.8. She is 5’6 and I’m pretty sure has finished growing so I think the adult range is a better indicator, I believe the low end of the adult range is 15? It just seems very low to me at 17.1. Everything else seems comfortably within the normal range however.

For those with a medical background, is this something that would be a concern? Are there any further tests or anything specifically I should be asking about? At the moment I feel like we don’t really have any answers about why she is having these pains. I would really appreciate any advice.

Disagree entirely.

Thanks to online groups I realised that I had 3 particular conditions ( EDS, POTS and Sjogrens). Almost every GP I encountered and still do knows next to nothing about this. As a result of the knowledge I acquired, I was confident enough to push and push in the face of gaslighting, ' it's anxiety ' and have testing and conditions diagnosed.

It really is absolutely diabolical out there right now if you suffer with problems that aren't always immediately obvious.

I presume she's been checked out for IBDs like Crohn's or Colitis as well as IBS?

Hi, my daughter is 16 and has Gastroparesis. She feels full quickly, has lost significant weight, always has severe stomach pains. It started off as slight stomach pain about 3 years ago and it's taken until now to get a diagnosis. It's worth looking into as so little is known about it and it's unlikely she'd be offered testing for it. The diagnostic test is called a gastric emptying study.

Yes this is the one the camera pill can help diagnose. I have found this particular condition to be so difficult to get accurate testing for. It's also a condition I've seen many young women in hospital gaslit over.

I have never heard a gastro willingly offer to test for this until one becomes quite insistent upon it. Hope your daughter is managing ok

I have low iron and ferritin and have these symptoms. I never made the connection but maybe the two are connected?

The last year in particular was hard. Her immune system was pretty trashed too so she had hospital admissions for tonsillitis for iv antibiotics when she couldn't swallow another one for glandular fever. She also had chicken pox, the flu, and a few other illnesses all in a 9 month period.
She lost a lot of weight and developed a fear of food after being told that the pain was due to food she was eating for so long. She had a short course of CBT after her surgery for this. So it's important to look after mental wellbeing too

The big problem with gastric symptoms is there are 100s of possible diagnosis and they all overlap in symptoms. My partner had IBS at a similar age and he outgrew it in his mid 20s but the extreme pain stopped after he completed his a levels. His symptoms were very similar to my sister only he had changes to bowels that she didn't have except when given meds just in case it was constipation or loose stools

@FoxInABox when your daughter says both her bowel movements and periods are normal, she may mean they are normal for her.

Could she keep a record of both so that she can easily summarise for the doctors if needed? Sort of x solid bowel movements a day and periods lasting y days heaviest on days z.

This is so so true.

DS10 had stomach pain, weird poo, regurgitation and vomiting for nearly 2 years (as well as rashes, blisters on his eyelids, headaches, dizzy spells which blurred vision or vision turning black and pain through all his joints and in his bones and skin).

• the paediatrician ran the coeliac test, and the allergy tests and the blood count etc- everything came back normal so they shrugged and said ‘autistic people have weird stomachs’ and that was that. No other investigations or referrals were made- EVERYTHING was put down to ‘autism’ (no matter how many times we went back to the gp).

After 18 months where his education was interrupted, he lost 50 percentile points in weight, and he was miserable I took him to a private paediatric rheumatologist who diagnosed him with Ehlers-Danlos and POTS and has ordered another raft of tests she says should have been done already, for things like lupus.

It turns out various things I’d been doing because they seemed right to me (limiting his salt intake like you do with kids/ telling him not to do certain movements if it hurts for example) were the opposite of what I should have been doing and were making it worse- it would have been really bloody useful to know that earlier!

Totally disagree with you too.

Some incredible advice and insight in here and I'm also on the Iron Protocol FB group which is so helpful.

Can't believe you would be so naive as to just nod at everything your GP tells you. 'Normal' in their world can be an extremely low threshold mostly due to financial constraints rather than wilful misinformation.

Endometriosis can mimic a number of gastro diseases and as it progresses you can develop endo lesions throughout the body.
Most people assume that you only experience the pain around menstruation, but the lesions will react to oestrogen mimicked in the diet particularly if you have lesions on the bowel.
As a longterm sufferer I realised that I was having pain episodes throughout my teens although the chronic pain episodes became far more debilitating during my twenties.
Back in the 1970s and 80s most meat contained hormones and some of the food additives were strong oestrogen mimicked, tartrazine was one that was used extensively by the food industry. I couldn’t drink orange juice without being doubled up within 30mins. Fortunately meat no longer contains hormones and a lot of additives are banned but there are still natural hormone mimicked that can cause a reaction.

If your daughter’s problem started when her periods started then I would be inclined to advocate for gyni referral.

Ask her to make a diary and note times dates and how it relates to her cycle.
Ask her to quantify her blood loss. When you are always heavy you assume that it is normal. I used to lose clots that ranged from the size of a 50p to ones that were almost the size of a tennis ball. As a teenager I had no idea that it was not normal to lose large clots. In fact clots are an indicator of abnormal loss.
Also make a food diary you may be able to see a pattern if you compare it to episodes of pain.
In the meantime ask your GP for a gyni referral, having a diary will give clarity and maybe link the problem to her menstrual cycle.

Goid luck and I hope you get some answers.

Sorry my auto correct prefers mimicked to mimickers.

Thank you, you have all given me lots to consider and look into.
I really appreciate you taking the time to give me advice and your experiences.

Will be getting her to keep a diary - we have done a food one in the past but will do a new one with food and her periods noted. Getting her to complete it each day is a bit of a nightmare admittedly!