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Undiagnosed for nearly 4 years, need some quality of life back!
Digestive Health | Last Active: Aug 25, 2022 | Replies (38)Comment receiving replies
Thanks for the reply. So sorry to hear you're suffering too. At the start I lost a huge amount of weight, about 2.5 stone, so I was put on liquid nutrition drinks, which I still take and have gained weight.
I'm in the UK, and the last time I saw a gastro was 2 years ago. I made a complaint against the hospital as they took a year to order a gastroparesis breath test, with no appointments in between, so now they say there's nothing more they can do for me.
I've already exhausted any funds I had going private a couple of years ago, which was just online appointments during Covid, in which the Dr said I could possibly have multisystem dysautonomia, then through them I purchased a parasym to stimulate the vagus nerve, which did nothing. He also prescribed tablets for gastroparesis, not knowing I didn't have it, which led to awful body tremors, diarrhea, and pain.
I did wonder about autoimmune diseases, especially lupus, but not sure how I'd get tested for them when I have no doctor?
Also,.I did have a test for gut inflammation, but it came back negative.
Replies to "Thanks for the reply. So sorry to hear you're suffering too. At the start I lost..."
Sorry you are going through this Sandy1234,
You may want to do a bit of research on Mast Cell disorders. They can affect any system but mostly gastrointestinal, skin, parasympathetic, etc.
Another thing that gets overlooked a lot is Small Intestinal Bacterial Overgrowth. It isn’t tested for a lot and can have a whole host of symptoms.
Unfortunately many doctors are not well versed in rare conditions like Mast Cell Activation Syndrome so it can be tough to get diagnosed and it sounds like you may be without good healthcare coverage at the moment. Unfortunately, due to COVID, there are many more patients out there that may have mast cell disorders that cause multi-inflammatory conditions. Cytokine storms which are a mast cell degranulation situation has been found in those with COVID so more and more doctors are learning about this. There are some relatively safe over the counter treatments like H1 and H2 antihistamines that can help if your doctor were to suspect MCAS. I have also used a lot of steroids over the years which have helped tremendously but also come with risk. Definitely consult a doctor about possibility of MCAS. Testing for it is not easy either, but favorable response to treatment is part of the diagnostic criteria for having it.
Keeping a food diary and list of triggers is very helpful, if you haven’t already.
Again, no doctor here, but I have similar issues like you described and my journey down the rabbit hole started 20 years ago while I was in my 20’s and it has been a tough road. Took me about 20 years and multiple diagnosis to find the right treatments. Doctors threw around lupus, vasculitis, connective tissues disorders, some kind of autoimmune disease, etc. It is frustrating when you don’t know for sure what it is, because you don’t know what to treat it with. It can take persistence to keep going and advocating when you don’t feel heard. You know your body. I hope you can find a doctor that will listen, have compassion, and search for answers.
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I'm also in the UK (Manchester) and fed up of the NHS. For almost a year now I have severe vomiting, abdominal pain, major weight loss, alternating constipation and dighreagh, severe tiredness and more. I was referred to specialist but when things didn't move for months I also went private a couple of times for him to put me on the urgent list in Salford Royal Hospital. Had Colonoscopy, Gastroscopy, MRI, Ultra Sound, Pill Cam, Barium Follow Through, all came back reasonably clear. Had stool test done recently, showed minor inflammation. Dr's still being lazy. I'm now 20 and missed almost complete year of college and no idea how i'm gonna cope in Uni this coming year. Been on Liquid nutrition (Ensure Plus) for 3 months now. Spent a week and a half in hospital mainly due to weight. Dr hasn't considered anything out of the box a bit, seems like there is a major problem in the English health system!!