Hi everyone

[Alan55]

Dr finds it strange that my white blood cell count will not come down and inflammatory markers are still high. Am considering going gluten free for a few days to see if this makes any difference .any views on this would be appreciated. Thanks Alan

[Purpletop]

Why do they find it strange, have they upped the steroids and you didn't respond to to it?

[Alan55]

Hi purpletop ,no they want me to reduce my steroids as have been on 30 mg for a month,just wondered if I had developed a gluten intolerance which was adding to problems. Give it a try for a few days ,see dr again on Tuesday going to ask for blood test for sjogrens and check blood count again. alan

[misty14]

Hi Alan

Is it your GP who finds it strange that your white cell count is staying high?. This can be a sign of infection and it's interesting you've been on 30 mg of steroids for a month which is a high dose for a while. Steroids can cause infections!. If I were you I wouldn't try being gluten free at the same time your going to be reducing the steroids. That's enough for your body to cope with!. I hope they don't want you to reduce too quickly. Good luck for your appointment on Mon .

[Alan55]

Hi misty, seem to be having problems with my stomach at the moment along with everything else,just thought I would try gluten free for a few days to see if it makes any difference .thanks, Alan

[Hidden]

Hi Alan

I can see why you'd like to do everything you can to help yourself. Cutting out gluten is always a good decision (I would read robb wolf's the paleo solution for the science and some knowledge bombs on what to avoid and why - it's written in a really light and accessible way not like a textbook) and I would also consider removing processed and fruit sugars if you are struggling with inflammation (the paleo solution again will explain the biochemistry etc and there's some treats if you have a sweet tooth in Sarah wilson's I quit sugar and I quit sugar for life recipe books) if it were me, I'd do everything I could do. Just a note: the leaky gut gluten creates doesn't heal as quickly as you'd hope in your post about (months rather than days) so stick to it to feel better generally. I'd definitely read wolf's book - knowledge will help you commit to the change in lifestyle (general populace: "you're quitting gluten and sugar? WHAT WILL YOU EAT? YOU'LL STARVE!!!" Hehe)

[Alan55 in reply to Hidden]

Hi The-Bear thanks for your great post will look into it .i am just trying everything to stop this latest flare of symptoms which has been my worst yet. My stomach seems to suffer so am giving gluten free a try and will tell dr on Tuesday .many thanks,Alan

[Hidden in reply to Alan55]

Good luck here's a super fast list of what to avoid:

All grains (wheat corn oats rye etc)

Pulses and legumes (beans)

Peanuts (these are legumes)

Autoimmune related to avoid initially:

Nightshades eg aubergine tomato peppers etc

Egg and dairy

Processed sugar (basically anythingr that's in a packet)

Fructose (fruit - berries are quite low in fructose)

What to eat:

Fish (inflammation lowering omega 3)

Meat

Lots of vegetables

[Hidden in reply to Hidden]

I should say I follow this and I am a national level weightlifter it's a long list of avoids but it's really better to look at the can haves and get cooking

[Alan55 in reply to Hidden]

Thanks TheBear your ideas are very much appreciated ,Alan

[overnighthearingloss in reply to Alan55]

Oh with the stomach thing... I have recently been introduced to Aloe Vera drinks. DONT DRINK TOO MANY as they can cause diarrhoea if you over indulge with them but although it is early days I think that they have reduced some of my acid reflux. I wont state it categorically as it may be something else that I have changed.

[diane1711 in reply to overnighthearingloss]

Aloe Vera really helps my gut and significantly reduced my hair loss

[overnighthearingloss in reply to Hidden]

I agree that any dietary change will not produce instant results. I had seen quite a few people mentioning the paleo diet and thought i knew what it was but didn't actively check it out.

When I did I saw just how much its principles were suggesting that you were actually following a largely alkaline diet. I have read that disease can take hold more easily if the diet is too acidic. Meds are apparently also acidic but you cant dispense with them.

Some people will say that they CANNOT change their dietary habits. And it can be really difficult to do so. But you have to have your eyes on the bigger prize.

A summary of what I have read so far seems to be that if its DEAD, DENSE or DENATURED its probably acidic. So meat/fish stuffs are acid forming. Hard food stuffs such as cheese, biscuits, are what I am referring to as dense. Denatured will be something that is quite highly processed. Flour falls into the category along with sugar so you can see where that leads.

Its not the case that you cant eat things that are acidic. Indeed you need many of them in your diet. But the proportion is the all important thing.

Many of the alkaline foodstuffs are vegetable or fruit based. So a good intake of fruit and veg that is not cooked or covered in copious amounts of oil is beneficial.

[Alan55 in reply to overnighthearingloss]

Thanks overnighthearingloss I really need to do anything that will help me reduce my steroids . alan

[overnighthearingloss in reply to Alan55]

As an add on, I have read that highly alkaline type foods have a higher oxygen content and visa versa. Apparently if the body is not ingesting enough of these types of foods disease can take hold more easily and supposedly visa versa. Oxygenated foods are more easily processed by the gut and energy is not used breaking down hard to digest foods so it can then be rerouted to fight infection. ????

[Hidden]

Hi - I'm gluten free and find it helps me a lot as my gut problems have mostly gone, although they flare up occasionally but I have got gallstones and certain drugs seem to give me a nasty gnawing sensation. I think Misty makes a good point though - it's important to be systematic about this and if you are dropping doses of steroids you need to focus on the effect of this so you know. Dropping gluten just now might be rather confusing as you may assume it's helping your stomach problems when in fact the steroid reduction is? There are tests for Celiacs that your doctor can do but only when you are eating gluten still - why don't you ask before dropping gluten from your diet? Twitchy

[Alan55]

Hi twitchy have tried dropping steroids twice so far, no luck second time took me to A&E, drs only see u for 10 minutes at a time then u r gone , waiting for 3 referrals to come through and my dr said she was going to email a blood specialist for some ideas, cannot get white blood cell count down, celiac seems to run with autoimmune conditions ,if my stomach problems don't improve I will put the gluten back.thanks for your input ,Alan

[Purpletop]

You don't have long to wait until you see a specialist who will hopefully look at your entire health situation, including medication and diet, and advise accordingly.

Meanwhile try not to overburden your system by making dramatic changes. If your tummy bothers you, see if you can give it less stuff to work on - soups and cooked veg and steamed fish would be gentler than say raw vegetables, meat, chocolate, doughnuts, etc.

Also, if you haven't already, try and avoid alcohol - not only because of the impact on the stomach etc but also because by doing so, the liver can focus on metabolising those drugs you take to the maximum effect rather than be distracted by trying to process alcohol first.

When are you seeing your specialist?

[Alan55]

Hi purpletop waiting for referrals to 1 UCH London ,2 eye hospital for my dry eyes,3 to endocrinologist for some hormonal imbalances .i don't drink by the way and stopped smoking in July last year. Thanks,Alan

[Purpletop in reply to Alan55]

You're being really good about your health, well done for stopping smoking and alcohol, both very difficult to do. All the best with the referrals, if you haven't heard anything by mid next week, I'd chase them.

[Alan55]

Thanks purpletop will do ,Alan

[overnighthearingloss]

You will need to educate me on that as I don't understand the term. All i can say is following these practices are what I believe stopped me from needing kidney dialysis 4 years ago. And although my results have fluctuated a bit and are not perfect I have not returned to that place.

I will also say that if i wake in the morning with a white tongue, which is indicative of infection or things being out of balance drinking hot lemon drinks instead of the usual tea coffee and cutting dairy products - acid forming usually has benefits.

Not proof, i know. But we all go with what works for us, or at least seems to.

[overnighthearingloss]

I don't disagree with any of that from my experience and/or what i have read. I am not suggesting that anyone needs to go vegetarian, just that it is important to realise that some foodstuffs take more energy to digest. And if the body is deplete of energy at the time then adjusting the diet accordingly MAY be beneficial.

[Alan55 in reply to overnighthearingloss]

I agree and am trying anything to make me feel better thanks everyone.Alan

[Alan55]

Hi concerned not yet but have to say stomach feels a lot better today .no wind or foul smells or aches ,early days I know but I might have hit on something .Alan

[tracynoe]

It could be that you need more than steroids to reduce the inflammation. taking steroids can increase your white cell count. My general count is high while my lymphocytes are low but they are normal for me on the drugs that I take. I have been on steroids for 8 years and Mycophenolate for 6 years. My blood tests are stable and as I say normal for me, if anyone else at my surgery had my results they would be called straight in and sent for in depth testing.

[Alan55 in reply to tracynoe]

Thanks for that tracynoe my dr is confused by it all, I have been having flares of this illness now for 21/2 years but this last one 6 weeks ago as hit me hard. Have dropped my prednisolone this weekend from 30mg to271/2mg to try to get it down. My dr told me she was going to email a blood specialist on Friday to try to find out what is going on. Hopefully get some answers when I see her again on Tuesday. This sunshine is knocking the life out of me and yet I have worked in the sun all my life. Take care ,Alan

[tracynoe]

Alan that is too big a drop on the pred in one go pred should be tapered slowly ideally you should have dropped to 20mg for a week then to 15 for anther week then to 10 and from ten down to 7.5 just be aware pred is a powerful drug and can not ne stopped abruptly

[Alan55]

Hi tracynoe only dropped by2.5 mg this time tried dropping by 5 mg before and ended up in A&E where they found uveitis in my eyes caused by inflammation waiting to see an autoimmune specialist at UCH London don't think my drs can see it because it is so rare in men .also now developed low testerone level which dr is referring me to endochronologist to look at .another link to lupus but my drs just don't see it .thanks ,Alan