Change of diet

[HiveMind]

Hi Everyone,

I thought I would let you know about my change of diet and how much it has helped me with some of my Churg - Strauss Syndrome symptoms. It might help someone else.

I have changed my diet to a gluten free one and it has stopped my upset stomach problem (which was probably caused by my meds & I've had for over 3 years) within a couple of days. It is a surprisingly easy diet to follow as I was worried there wouldn't be much I could eat. I was totally wrong! Most major supermarkets stock all you need, however I would recommend buying a gluten free food directory (£10) from the Coeliac UK website to make things easier.

It has also helped with the pains in my joints (inflammation). Whilst I still have some pain, it does ease it a little and am hopeful it will help more, the longer I am on it.

A gluten free diet is advocated by some doctors as it is said to reduce inflammation in the body as a whole. It might just be coincidence but my recent blood test has indicated that ALL of my inflammatory markers are down this time, which is fantastic as they were all going in the wrong direction (I.e. up!).

It's early days yet (I only started going gluten free a few weeks ago) so I will keep an open mind for now until I (hopefully!) see (or feel) some more encouraging results.

I just thought I would share this with you all in case anyone might like to try it too.

Also, I will keep you informed if going gluten free continues to improve my health (or not!).

[JanetR]

I would endorse this story about a gluten free diet helping the symptoms. I was diagnosed with Polyarteritis Nodosa and at the same time had a positive blood test for Coeliacs. I came off gluten immediately and stayed off gluten even though subsequent bloodtests and stomach biopsies were negative. (I went back onto a gluten diet for three months to see if they could get a positive result). After my Cyclophosphamide treatment and initiai large doses of Prednisolone I was told that there would be no more significant improvement in my symptoms. However, I have in fact had significant improvement in muscle strength and energy over the past 6-9 months while taking the "holding drug" methotrexate and lowering doses of Prednisolone - now at 5mg per day. Having been unable to walk more than 100metres without pausing, I can now walk 5 miles at a moderate pace with some pauses, even uphill and downhill.

[JanetR]

I would endorse this story about a gluten free diet helping the symptoms. I was diagnosed with Polyarteritis Nodosa and at the same time had a positive blood test for Coeliacs. I came off gluten immediately and stayed off gluten even though subsequent bloodtests and stomach biopsies were negative. (I went back onto a gluten diet for three months to see if they could get a positive result). After my Cyclophosphamide treatment and initiai large doses of Prednisolone I was told that there would be no more significant improvement in my symptoms. However, I have in fact had significant improvement in muscle strength and energy over the past 6-9 months while taking the "holding drug" methotrexate and lowering doses of Prednisolone - now at 5mg per day. Having been unable to walk more than 100metres without pausing, I can now walk 5 miles at a moderate pace with some pauses, even uphill and downhill.

[Chris-Bromsgrove]

My daughter has coeliac disease so I know a bit about it (auto immune diseases, which this is of course, seem to run in our family). It only effects the small intestine and some of the symptoms are very similar to vasculitis (fatigue, abdominal pains and weight loss). I noted that Wikipedia also says “ these (symptoms) may be absent, and symptoms in other organ systems have been described”. It could be you both either have a gluten intolerance or coeliac disease as well. A formal diagnosis can only be given through a biopsy of the affected are of small intestine.

The good news is that a gluten free diet actually works for you, whatever the reason.

[HiveMind]

Hi Everyone,

Thanks for all your kind comments and suggestions.

Hopefully being gluten free will continue to help with my symptoms.

[KathyW]

Well done for finding anything that helps with the pain and inflammation. I guess what works for one doesnt work for another but it certainly helps to hear what others have found.

[AndrewT]

You may have gluten 'intollerance', on top of everthing else! Sorry but..... Anyway if the diet helps stick to it and good luck!

AndrewT

[bargibar]

I've been reading how a gluten free diet has helped with your symptoms. I've been diagnosed with churg strauss and it affectes my muscles I will look into a gluten free diet to see if it can help me too thanks.

[HiveMind]

Dear All,

Just to give you an update about my health whilst going GF.

I feel a whole lot better than even when I posted last time and the reason is (I suspect) that I'm not only GF but I'm taking a very good Multi vitamin and Omega 3 fish oil. (My consultants don't have any objections to me taking these alongside my meds)

I've cut out as much sugar as I possibly can and eat organic when I can. I read every label of every foodstuff/drink that goes into my mouth to avoid, added sugars, trans fatty (hydrogenated) oils, carrageen (bad) and any other "nasties" that manufacturers add and are BAD for my health.

I also scour the Internet to bone up on information on health & nutrition as I want to help myself as much as I can.

It seems to be working! Why I haven't done all this before is a mystery to me!

The other added bonus is I've lost 2.5 stone in weight! (bearing in mind I'm off all steroids which helps enormously).

If anyone wants info on anything I've just written please contact me.

Stay well people! X

[Skipper55 in reply to HiveMind]

Berkshirebird I would be most appreciative if you could send me your diet as I believe it is a critical component to living with CSS

I am in a bad way at the moment with this rotten disease.

Thanking you Skipper 55

[HiveMind in reply to Skipper55]

Hi Skipper,

I'm so sorry to hear that you're not very well. I know how rotten it is when this condition isn't stable.

I too, feel diet is a very important factor in gaining good health.

I can definitely let you know what I do to keep well but please bear in mind I am NOT ADVOCATING that you do this. This has worked for me but may not work for you.

The trick to good health, I think, is getting your gut healthy, which is the absolute basic starting point to good health. Eat probiotics (Yakult) and fermented foods (sauerkraut, pickles, pickled gherkins etc). It will encourage good gut bacteria. A good product for healing your gut is bone broth, either make your own (recipes are on the internet or you could try a cookery book from the library) or buy it from the supermarket.

No.1 (most importantly I think) I cut out gluten from my diet. There are lots of things you can eat without gluten and I don't just mean processed gluten free pre-packaged foods (these are quite expensive anyway, for what they are). If you can find a gluten free bread that you like (Waitrose do some acceptable gf bread), that's a good start. Read the back of every can, jar, packet, bottle etc so that you can avoid wheat/gluten. It may sound difficult but believe me, if you stick with it, it will pay off.

Also I cut down on sugar, as much as I could, from my diet. I still eat chocolate etc but in small quantities. Actually if I do overindulge in high sugar foods, I feel absolutely awful for days later. So I keep away from it as much as I can.

Eat "clean" (non processed foods), as much as you can and organic if you can. You don't want to overburden your system with toxins if at all possible.

Eat lots of fruit and veg, preferably organic, at least until your health improves.

I take a good multivitamin from Nature's Best called Multi-Max Complete. It's a multi vitamin and mineral tablet that I take (1 tablet twice a day). I also take Pure Fish Oil (1100mg per capsule) also from Nature's Best (2 x capsules a day). In the past, if I was still struggling with energy levels I'd take a Magnesium supplement.

BEFORE you take anything though I'd consult your Dr. just so they know exactly what you're taking and whether they will react with your other meds.

Get as much sleep as you're able to. I can't function without lots of sleep!

Just so you're aware I don't drink regularly (very very occasionally) and I've never smoked.

Keep away from anything that stresses you out (even family/friends!). learn how to relax and be good to yourself, in all ways.

I hope I've helped you in some small way Skipper and that your health improves over the coming months. Get your health professionals involved with your recovery because you will still need your meds, just as I do.

Take care and the best of luck.