Asking for strength! And anyone in London who has... - LUPUS UK

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Asking for strength! And anyone in London who has had gut tests.

LilyMistri2 profile image
19 Replies

hi everyone,

The resilience for which I’m known for in my clan and amongst friends is failing me! I’ve been ill with post viral syndrome and gut health issues, tight muscles, tremor, weakness and stubbornly staying put depression on top of the post pandemic depression I already suffer from, for 4 months now. I have an appointment with talking therapy coming up, I’m contacting and am in contact with my gp, neurologist, rheumatologist and haematologist about all these.

What I’m asking for on this thread is for your strength and if any of you have been to an amazing functional medicine doctor nutritionist, in London and it’s outskirts, who does gut testing, I would be most grateful for recommendations. Please help, I’m desperate and just don’t know who to turn to.

Wishing you all a great day!

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LilyMistri2 profile image
LilyMistri2
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19 Replies
Treetop33 profile image
Treetop33

You could try Zoe, who do a gut test. Also lots of online tests available.

LilyMistri2 profile image
LilyMistri2 in reply toTreetop33

thanks

Star13 profile image
Star13

Hi I was listerning to a talk today over on Thyroid UK by a person called Melissa Cohen who is a nutritionist. From what she was saying I would think she would be able to help or at least point you in the right direction.

melissa-cohen.com/contact

LilyMistri2 profile image
LilyMistri2 in reply toStar13

Thank you. I will look her up.

HowNowWhatNow profile image
HowNowWhatNow

I did the low FodMap diet when having similar and felt much better on / after it

LilyMistri2 profile image
LilyMistri2 in reply toHowNowWhatNow

Thank you

CecilyParsley profile image
CecilyParsley

sorry LilyMistri I cannot help but just wanted to send you a big cwtch and hope that you can find a clinician who can help you lovely xxx

LilyMistri2 profile image
LilyMistri2 in reply toCecilyParsley

Thank you for the support! I appreciate it x

CecilyParsley profile image
CecilyParsley in reply toLilyMistri2

Bless you I think most of us get gut problems but I know sone here can give you excellent advice. Be kind to yourself xx

Suvi8901 profile image
Suvi8901

Hi,

Gut problems?🥹

Check out whether you’ve got gluten intolerance/coeliac’s disease (AI gut disease).

There are loads of different symptoms stemming from intolerance/allergy to gluten a protein found in wheat, rye and barley products:

nhs.uk/conditions/coeliac-d...

There are also loads of gut testing clinics for food allergy online.

Some obviously better than others.

Here’s just one:

mayoclinic.org/diseases-con...

I’m not persuaded by the expensive ZOE, heavily marketed nutrition/dietary program which is just a healthy eating low carb plan for ALL, dressed up as an individualised programme!Very popular amongst rich, celebrities though!👆

GOOD LUCK!

KnitSewPurl profile image
KnitSewPurl

Hi lily ,Just want to know are you keeping a dairy of your food intake and output?

Intake - what you consume - type of food, drink , veggies,fruits,tea coffee even the smallest item that is consumed is very important anyone with gut issues.

Output - how frequently you are going to the loo? Consistency & Colour ? They need to be noted each time. Also if there is blood at any one time? Even if there is non in one episode but present in another.

If you have diarrhoea all the time or gut issues your body nutritional will start to be depleted very fast much faster than your body able to replace.

You can get dehydrated easily as well when you are passing loose stool. Whilst you don't realise this but it does it to our body. Which is something you need to take note how frequently you are going and how much you are peeing to how much you are drinking. Especially when you are passing it through your stool.

Back to nutritional, have you looked at cutting back or stopping certain foods ?

Because gut issues normally means the gut becomes irritable and unable to tolerate what food that is eaten and digested. Anything that is fatty/cheese/dairy or highly processed or the other one is gluten. Has anyone of the consultants suggested this?

Have you been adviced to take high doses of Vit D and multi vitamins to help with your current issue? To give you a boost of energy. Also Vit D has alot of benefits. Do read them up on medical pages on Google. Make sure you calculate the total amount you take on Vit D and that you don't exceed the highest you can take That is 3000- 4000iU.

Hope this helps.

Btw , I have long standing gut issues 25 years , Dairy and Gluten intolerance. Still do get the occasional diarrhoea for no apparent reason not too sure why whether if it is because hubby is on gluten diet with his bread and we use 2 differents board for bread . But I have been very careful of cleaning the boards and reusing them for mine if they have been used for gluten purposes.

The change has been good and made a huge difference to my SLE certainly made a huge difference to my inflammation markers and my joints though I still get joint pain but they are certainly not as bad as they were before . I can get about and do things but within reason. Still requiring rest after a while they hurt like mad.

I hope you get it sorted out . Also hope that they check you out with a Dexa Scan as well if you are having so much diarrhoea your body would have no chance to absorb any nutrients. If you want to message privately if you have any questions . But I take a while to reply .

LilyMistri2 profile image
LilyMistri2 in reply toKnitSewPurl

Thank you so much for your in depth reply. I appreciate the time you’ve taken to suggest all the things I should try to help map out what’s going on. It’s a lot of work but I will try to figure it out. Thanks again. But I still definitely need all my levels checked for sure. I just wish I knew where to go to get that done.

KnitSewPurl profile image
KnitSewPurl in reply toLilyMistri2

Yes , setting out a diary is alot of work but it is needed when you are ill. If you are any good with Spreadsheets it is a good way to do it . It is also quick as well.

You might find one even on Google, but bear in mind they might not be compatible to your needs. It will also give the Consultants / Doctors some ideas how I'll you are and what foods effects you, also it will give you an opportunity to try to cut the food that is effecting you and see if it helps.

Your GP or your consultants should have done those bloods levels results, if they have not suggested those I am really surprised ? If you are already seeing them already.For example I have always showed good amount of Vits D in my body but I have always been having diarrhoea but took vit D after which means body is able to digest that and absorb it but it is still not enough for me because I was still exhausted even doing a small task like doing washing load or any other smaller tasks at home. My housekeeping task load is getting better.

All your blood levels should or be able be seen on your NHS app if it is taken by your GP. You can ask your GP to display all your doctors letter and blood results on the app. If they are tech savvy 😳😆😅 unlike mine which deleted my app lol.

If it is taken by your consultant you can ask them for a print out of the results when they send you the clinic letter.

LilyMistri2 profile image
LilyMistri2 in reply toKnitSewPurl

Thank you so much for your help. I went to the dietician today and she had some ideas to implement. So progress is being made. I’m keeping a food diary. Thank you!

KnitSewPurl profile image
KnitSewPurl in reply toLilyMistri2

That is great news , hope they have given you some guidance ,help and good advice as well as to how to go about using a food diary chart. Take care ,hope you will be able enjoy the weekend xx

LilyMistri2 profile image
LilyMistri2 in reply toKnitSewPurl

Thank you very much! You too! Xx

MusicalFurbaby profile image
MusicalFurbaby

Hi LilyMistri2, sorry to hear about your troubles. Gut issues are the worst! I’m dealing with my own gut issues at present, so I feel your pain.

I can’t help you with London recs as I’m in Australia, but I’m sending you strength, and well wishes, and hope too. Keep breathing, keep hanging in there. Let us know how the talk therapy goes, and good on you for reaching out, that’s often the hardest step. We’re here for you 🌻🌈✨

LilyMistri2 profile image
LilyMistri2 in reply toMusicalFurbaby

thank you for kind reply and words of comfort. I’m feeling a bit better. However I’ve just found out I have no iron in me and making enquiries as to whether this might be helpful in diagnosis. Thanks again! Xxx

MusicalFurbaby profile image
MusicalFurbaby in reply toLilyMistri2

Glad you’re feeling a bit better. That’s interesting about the iron, I wonder how that’s having an impact on your system. Let us know what the doc says.

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