Son undiagnosed for almost a year, would really appreciate some advice

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Hi there,

My 19 year old son has been suffering with debilitating nausea, upper abdominal ache (sometimes lower), indigestion, bloating, weight loss, extremely low energy levels, very low blood pressure for the past 10 months. Before this he was extremely active and happy, now he can barely leave the house. he was referred to a gastroenterologist and has been tested for Addisons disease, infection and celiacs (although it doesnt seem related to his diet). The results of barium follow through, abdominal ultrasound,MRCP and CT scan on brain all came back clear. It's months between gastro appointments and so frustrating not to have a diagnosis. He's tried PPIs, IBS medications, anti depressants as well, but nothing seems to help.

Cant stand seeing him like this and becasue of his age the doctors don't take it seriously when it's completely ruining his life. I' ve had to fight and complain to get every test he's had done carried out, as left to their own devices he'd have had two appointments with the gastro in 10 months. Not sure where to go from here though, the next appointment with gastro is in 4 months time, meanwhile he's still so ill.

Any advice appreciated

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  • Posted

    hi there. has he had an endoscopy? have they checked his gallbladder? also get a full vitamin check through blood test low vitamin levels could cause a number of issues. ask for a full blood panel as well.

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    • Posted

      The MRCP checked pancreas, gall bladder and kidneys, all fine, and full blood count and vitamin levels have been checked too. He won't have an endoscopy as

      he doesn't think he could cope with it.

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    • Posted

      he should really think about trying one i was put to sleep for mine but im in the US gastritis causes a ton of the symptoms you described i have gastritis and have to follow a strict diet other wise i flare up and am miserable for weeks at a time.

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  • Posted

    Hi Sandy3

    Press your doc for a vitamin and minerals blood test. Low Vit D will cause stomach issues and low B12 extreme fatigue, lethargy and low mood. levels of Vit D should be 60+ and B12 for his age 200-300. Also get magnesium checked low levels cause anxiety and stress, also get Vit C and all Vit B's tested there are quite a few B vits.....Also, ask doc for a print out of the blood tests results under 'Freedom of Information Act' you can request them....

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    • Posted

      I know he's had a vitamin levels test and that they said everything was fine, didn't know you could ask for a print out though, will get onto them so I can have a look myself, thanks.

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    • Posted

      Hi Sandy39

      Yes, do get a print out of the blood results and say your requesting them under the Freedom of Information Act. Check the results yourself, because i asked for a print out and my B12 was way lower than the normal levels and they told me it was fine. My problem of extreme fatigue was the result of low B12. I pointed it out to my doc and said what normal levels should be for my age which is 300-500 for people 55 years plus. I now get regular 3 moths B12 injections.....keep us posted...

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  • Posted

    Curious, about how long has he been on anti-depressants. They are not good for our systems. They can cause nausea and mood changes and a slew of symptoms. He has no food allergies? Its good that the tests came back normal. This could all be stress related too.

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    • Posted

      He's tried a few different anti depressants but not for too long because he really doesn't feel as though it's a psychological problem. It doesn't seem to be related to food but he's only been tested for celiacs, although gastro seems to have ruled out crohn' s and IBS from barium meal due to lack of inflammation. He's now on a nutritional supplement drink 3 times a day and recently started Amitriptyline to help him sleep as the stomach ache was keeping him awake at night.

      He was in a really good place in his life when the symptoms started, but obviously that doesn't necessarily mean it's not stress related.

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    • Posted

      Hi Sandy39

      I noticed in one of your posts you stated 'he was in a really good place in his life when the symptoms started' what was the good place and what was your sons life style eating habits etc like...

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    • Posted

      Sorry, I really meant that there was nothing particularly stressful going on his life at the time. He was enjoying running a small business, was in a good relationship, had a good appetite and was healthy and happy. His symptoms came on overnight, although he had been complaining of a feeling of pressure in his upper abdomen when walking for a few weeks before, but just a niggle, nothing major.

      He's never smoked, doesn't touch alcohol and has a pretty healthy diet, we cook from scratch mostly (with the odd takeaway here and there) he drinks lots of smoothies, and used to get lots of exercise.

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    • Posted

      You cannot rule out IBS from a barium meal or any other test because IBS doesn't show up on any test because it is a functional condition rather than one affecting the structure of the bowel. Ask again about IBS. My IBS stomach ache kept me awake at night. While IBS can cause more inflammation than someone without IBS, it doesn't always cause inflammation. Perhaps see someone else for another opinion.

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    • Posted

      Even though he was enjoying running a small business, this in itself can be stressful and he might not have been aware of any pressures or stress because he may have been too busy to notice it My symptoms happened overnight too and although I had had stress for six months prior to my IBS and was aware of it, I didn't realise how much it was affecting me or that it could affect my gut.

      An online doctor asked me if I had noticed any triggers such as stress or food and I said I hadn't noticed anything like that. It took eight visits to several doctors before stress was identified as the cause of my IBS. I hadn't thought to mention it because I didn't know it was relevant. It is possible to have hidden stress. Perhaps consider that. Gut disorders involving abdominal pain can be very hard to diagnose. I had to wait 3 and a half months for diagnosis while experiencing severe, multiple health anxieties. I had to find my own antispasmodic because a previous doctor tried me on one that made me far worse.

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    • Posted

      Hi Sandy39

      What kind of exercise was he doing? was it very strenuous exercise? Too much strenuous exercise can cause gut problems as over exertion can release high levels of cortisone from the adrenals that will upset the gut. A test can be carried out oir high cortisone levels. Also, does he drink a lot of smoothies the high fibre, in excess, can give rise to stomach problems....

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    • Posted

      Exercise was lots of walking and cycling. He had cortisol levels checked when they suspected it was Addisons disease, but they were fine.

      He probably had 2 smoothies a day, now just when he can tolerate them. With the more varied diet and nutritional supplement drinks I would expect his energy levels to have increased, but it's as though he's always running on empty. His BMI has increased to 17 and his weight was up slightly at the last appointment, so at least that's going in the right direction, but his symptoms remain the same and it's another 4 months till his next appointment.

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    • Posted

      Hi Sandy39

      Well he sounds ok regarding cortisol levels and smoothie intake. The only debilitating causes i know of from people who have suffered fatigue and weakness is low iron, B12, Vit D, Vit C and thyroid problems. There are other causes i am sure. Has your son had his thyroid levels checked. Also, there is a SIBO test which involves checking for stomach candida which can also cause stomach problems and lethargy...

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    • Posted

      I'm pretty sure he hasn't had his thyroid levels checked, he's has so many blood tests, especially at the start, that I'm not 100% sure. Though I'm going to get a print out of all results, so I should have a better idea then. Thanks so much for all your suggestions and input, sometimes you just feel like you're going round in circles and nothing's changing.

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    • Posted

      Hi Sandy39

      I know what you mean feel like your on a roller coaster getting nowhere, but keep going back to your doc if you need to after all that's what they're there for, that's their job! I know waiting four months is an age when you need to know what's going on with your son. I am sure all will be resolved and things will turn out good for him and you for being a wonderful caring mum....👍🤗

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