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misseb

London - Gastro specialist needed

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Hello hello 

I have had a terrible time with a GI specialist in London. She has put all my GI problems down to an eating disorder that I had 20 yeas ago. I just can't get her to agree that there is a relation between POTS and GI problems. She u turns back to the eating disorder. She's a terrible bully in the room too, has me sobbing. In my last notes she wrote "in all my knowledge there is no autonomic disorder that is affected by carbohydrates or meal size."  She has discharged me as she says I am failing to accept the professional advice given and that they can no longer help me. 

I'm really struggling. I can't eat after 4pm otherwise I wake tasting the food and I have terrible autonomic symptoms. I last ate a small meal in the evening a  few months ago and was terrible for 2 days. Have to be so careful what I eat or im in a fatigue state. 

Does anyone know of a good GI Specialist in London that works for the NHS ? 

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If you suspect food allergies then you may have better luck with an immunologist.    Just be aware that MAST cell activation is not yet a recognizable disorder in many medical establishments, most will state that there is no diagnostic criteria under WHO.   I am very careful what I say to specialists, it is easy for some to find an excuse for what is happening to you. 

It is clear that this GI specialist is working within their own silo rather that being multi-disciplinary.   Take a support person with you and ask to record (cell phone) the appointment so that you can listen to educational aspects of the appointment at a later date (mention vaguely brain fog stuff)  this stuff will hopefully prevent such horrible experiences in the future.

I used to have GI emptying issues many years ago, I still get this problem for short period of times.  I asked to be referred to gastro for motility issues, only to end up having an endoscopy with a diagnosis of gastritis and esophagitis - run of the mill stuff.  With treatment some of my GI issues settled.   If you wake tasting food maybe that you have reflux and need some thing  like Omeprazole to help reduce stomach acid and protect your stomach lining.  

It may be a good idea to take photos of the swelling you get post meals to show on your next doctors appointment. 

You state in another post that you drink 4 litres of water, that is quite excessive. increasing your risk of hyponatremia.  (To much water intake decreases your sodium levels which tends to cause a fluid shift).

Best of luck

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@misseb - postprandial ( after eating ) symptoms are a KNOWN AND COMMON symptom of POTS, so are many other GI problems like nausea, vomiting, diarrhea, constipation, GERD, slow or fast gastric emptying … she is wrong and not only misinformed but also rude and ignorant. Here is an article you might want to get to her and also read for yourself  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3737368/

I also used to have terrible problems with eating, especially evenings. I am on proton-pump-inhibitor to minimize stomach acid and used to take Zofran for the waves of nausea and diarrhea from IBS. What also helped me is minimizing intake of carbs in the evening and - most importantly - avoid large meals all together. I snack all day and eat small meals 6 times a day. I tolerate this much better and actually get more nutrition that way. Also elevating the head of your bed slightly can help with night time reflux. 

Hang in there - there are many things you can try until you can see another GI specialist. Be well!

 

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Have you been to the autonomic unit at UCLH? They specifically do a meal test on patients due to the known effects of eating on autonomic disorders. It may be worth it to get this documented then you can present it to the next (hopefully more enlightened GI dr you see). I declined this during my stay as the only advice for it is eat small meals (who with POTS eats big meals?!) & some patients get to try Octreotide which I have already tried and wasn't for me.

Pyridostigmine (Mestinon) can be helpful with GI motility and may be worth asking about. 

I have heard Professor Qasim Aziz is good and knowledgeable re autonomic disorders. He practices privately but may also hold some NHS clinics in London. 

I have no GI issues per se other than reflux and slow transit which were lifelong prior to POTS, possibly made a bit worse by immobility now, but they are still easily managed. 

I still struggle to get enough calories in as being so lightheaded makes you not want to eat and struggle to prepare meals, & supplement with protein shakes to keep my weight up. 

best wishes,

B xxx

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Prof. Qasim Aziz is a professor of neurogastroenterology at Barts and The London School of Medicine and Dentistry, and specialists in disorders of gut function. I researched some years ago and I would have gone to see this man but realised in my case it is Mast Cell Activation/IBS and I am seeing an immunologist next month. 

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Thank you. Responses mean so much.

I did see Prof Aziz. I really like him. He referred me for lots of tests. But my insurers pulled out. I can't afford the tests and he doesn't practise on the NHS. So I had to see another Dr. 

I'll keep pushing for another referral. 

 

 

 

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Changing my diet has been the biggest help with low carbs, vegan, no gluten or sugar or fruit.  I eat low histamine foods and alkaline. 

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Yep. Im dairy, gluten, sugar , fruit, fermented products free, and follow a low histamine diet. And not eating in the evening is a game changer too for me.

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13 hours ago, misseb said:

Yep. Im dairy, gluten, sugar , fruit, fermented products free, and follow a low histamine diet. And not eating in the evening is a game changer too for me.

I was diagnosed with chronic spontaneous urticaria (autoimmune) and progesterone allergy and have been for well over a year on 20 mg loritidine BD (off label)  this helps with skin and gastric issues quite well.   I think for me it would be hard to keep to such a diet, especially as most of the food on the low histamine diet are my favorites. 😀

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I'm back on 40mg of Loratadine and suddenly have a clarity of thought again. It's got to the point where I am so bad for days that the temptation to eat food that are high histamine and triggers just isn't so much a problem. I suffer too much it's not worth it.  It's a shame it's happened the hard way but in a way it makes things easier. 

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