Looking for A Good Dietitian in the UK

[Noodler]

Hi, I'm new to the board and I'm based in the UK.

I am really suffering badly and have been told I have lymphocytic colitis and striking lymphocytic duodenosis. I can hardly find any food to eat as I have very severe food allergies and am moving to living on protein shakes.

I am looking for a good dietitian or doctors that understand this immune disease and are based in the UK or Europe. I have had a look around the site but there seems to be a lot more guidance for people in N America.

Grateful for any advice that can be provided and many thanks!

Al

[tex]

Hi Al,

Welcome to the board. Your current situation sounds a lot like mine, when my symptoms were initially developing. Sadly, we seem to have surprisingly limited participation among UK residents on this board. We have a fair number of members from the UK, but very few regularly post. I'm not sure if the health care system influences that trend, or not, but at any rate, we have virtually no data on doctors or nutrition experts in the UK who might be well informed about treating this family of diseases. Hopefully, that will change in the future, as more people contribute useful information based on their personal experiences within the UK health care system.

Regarding your lymphocytic duodenosis. That might be associated with your LC, or it might be associated with the early stages of celiac disease. If you have a celiac gene, lymphocytic duodenosis will almost certainly eventually develop into diagnosable celiac disease, if you continue to ingest gluten. If you don't have a celiac gene, then you will probably never be diagnosable with celiac disease, (by they classic celiac diagnostic criteria), but you will be just as sensitive to gluten as any celiac, despite the lack of a diagnosis.

This board contains all the information you need to treat your condition without the need for medical intervention, if you are interested in treating it by diet alone. Many of us on this board have the same sensitivities as you, and if you look at the old posts, you will see that many of us here are in remission by diet alone. We have many forums here that contain information on foods to avoid, suggested meals, safe recipes, etc., to accommodate virtually any dietary needs.

We have members who are Doctors, and nurses, (of course, they aren't here to practice medicine, but to share ideas and personal experiences), and at least one member who is a licensed dietitian, (of course, she isn't licensed to practice anywhere in the UK, but safe foods in the UK are the same as safe foods anywhere else), and we have many members who have been successfully treating their symptoms for many years, by customizing their diet, so as a group, we have a lot of experience in treating this disease, and living with it. The disease has no cure, but the symptoms can certainly be controlled, so that you can get your life back.

Again, welcome aboard, and feel free to ask any questions that might come to mind, and we shall try to help in any way we can.

Tex (Wayne)

[Gabes-Apg]

Welcome to the group

there is a bit of a Nth American focus to the forum, but the information and suggestions work world wide! (i am based in Australia)

my suggestion is to contact the local crohns/colitis society and see if there are medical professionals they recommend.

when you ring to make an appointment ask them if they have treated a Microscopic Colitis (CC or LC) before.
It may be a bit of a hunt to find one, but definately worthy of the time and energy to do so.

using google search try to find medical professionals that mention colitis on their webpages or have printed articles on it.

Quite a few of us here have not always been lucky to find good medical professionals to support the condition, i can attribute most of my success to this forum and the support and information it can offer

good luck

[natythingycolbery]

I'm from the UK. There is a good G.I. at York hospital (called Dr Robbins) in terms of dieticians I have no idea tbh

[Noodler]

Thanks for the very helpful response to my post everyone with some really helpful info and reassurance.

I'm definitely someone who has a huge amount of IgE to the great majority of foods including wheat but the lymphocytic duodenosis although very high (60 lymphocytes per 100 enterocytes) was not typical of coeliac disease and I have been eating gluten free for a long while. Also my blood tTg was not positive on several tests over the years. My theory is that I have a huge amount of delayed reactions to food proteins and this involves the lymphocytes.

Gabes, I used to live in Melbourne which is where the beginning of the allergy jigsaw began 10 years ago and the Aussie doctors were pretty good. When I got back to the UK I was just told I had IBS and went back to square 1.

Naty, I'm glad you have a good consultant, I actually see one in London who is good but I wanted to know if there were any consultants or hospitals which have a few MC/LC patients and treat them successfully. York is a maybe a long way to go but it could obviously be well worth it.

Tex, thanks for your very knowledgable and informative reply. The next stage is indeed, to begin to get my life back. I lost my job because I had severe duodenosis which was undiagnosed. I'll probably bug a lot of people on here for advice and ideas.

Cheers guys.

Al

[tex]

I'll probably bug a lot of people on here for advice and ideas.

That's never a problem. That's why we're here - we learn together, by sharing our personal experiences and insight.

Tex

[harma]

what really helped me with my diet was a dietician specialized in food allergies/intolerances. I am sure you must be able to find one in the UK too. But than still things depends on how good or bad someone is. Before I was diagnosed I myself already had figured out about the possibility of histamine sensitivity and histamine releasers, she helped with trying a diet. No difference. Later with my food/poop diary she was the first one to make a relation with gluten (really I had no idea).

After the enterolab testing she was very helpful in setting up a daily food plan with all my restrictions CD DEF SF CV etc. Alternatives etc.

although the Netherlands is still a lot closer for you than the US, still I think for a dietician visit a bit to far

But again try to find a food specialist specialized in food allergies and intolerances. Maybe you have to try out some before you find one where you think "yes this one is good" Because when it comes to the field of food intolerances and allergies there is a lot of knowledge but also a lot of BS out there.

good luck with it.

[natythingycolbery]

Naty, I'm glad you have a good consultant, I actually see one in London who is good but I wanted to know if there were any consultants or hospitals which have a few MC/LC patients and treat them successfully. York is a maybe a long way to go but it could obviously be well worth it.

Hey Al, I have actually been discharged from care as my condition was caught in the eaerly stages and is currently in remission.

If your Doctor isn't helping you though, you can ask to see someone else.


Also have you looked at Crohns and Colitis UK? I think they have a list of Doctors who know how to treat the condition