Sarcoidosis and the 5:2 Diet

This topic contains 11 replies, has 7 voices, and was last updated by Grinham 10 years, 7 months ago.

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Shiskine

10:16 am
23 May 13
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I am 50 now and was diagnosed with sarcoidosis in 2004 and have been on varying doses of Predisolone ever since. It would appear that, unlike my mother who had it after I was born, I’m in the 10% for whom it won’t go away.

In 2007 I was diagnosed with Type 2 Diabetes. All my doctor friends tell me this is an inevitable consequence of long term corticosteroids. Thankfully the diabetes has been relatively symptom free, but I was particularly interested in the 5:2 diet as it dangled the prospect of shaking off my insulin resistence.

My cousin and his wife, both doctors (a urologist and GP respectively), told me of a patient that had managed to bring his HbA1c under such control whilst on the 5:2 diet that he no longer takes any medication for the condition.

Of course such anecdotal evidence isn’t very reliable, but it gave me hope. However, two months in to the diet and whilst I’ve lost over 10 kilos, my HbA1c has gone up (95 mmol/mol) as has my blood pressure. Very puzzling and disappointing.

I’m currently on 10mg/day of Prednisolone and 10mg/week of Methotrexate as this dosage seems to be the optimum in terms of containing my (active) sarcoid and avoiding the worst of the steroid side effects, most particularly weight gain.

Might my meds be affecting my diabetes control and blood pressure, or do individuals respond differently to intermittent fasting?

And another question. It would have been nice to have benchmarked my IGF-1 at the outset of the diet. I attend regular blood tests as a consquence of being on Methotrexate, but when I asked the practice nurse about an IGF-1 test, all I got was a blank stare. Is the test for this something that normal GP practices should be able to offer or is it quite an expensive test? Probably a moot issue now as any reading won’t be that meaningful without a starting figure.

Finally can I thank you for the book, Horizon doc and the diet. I’ve found it remarkably easy to adhere to and actually look forward to my fasting days so can see me sticking to it for the rest of my days.

saberhagen

7:07 pm
24 May 13
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Well done on losing 10 kg whilst on steroid I am deeply impressed. I am sorry you haven’t had a good reduction on your hba1c but my advice would be to persevere as your hba1c reflects your average sugars over a 3 month period and you have said you have been fasting for only two months…there is still blots of hope.

As a fellow sarcoid sufferer (2000) I am keen to hear how you are getting on. I only started the fast two days ago. Day 1 post fast I feel terrible, as if I am detoxing. Day 2 tomorrow… Hoping it is not so bad. I agree it is a shame you didn’t get a baseline igf but your specialist should be able to give you this information. As a practice nurse I would never do blood tests at a patients request unless there was a clear clinical need. I am surprised you did not discuss your dietary intentions with your doctors given your complex history. Mind you I haven’t discussed it with my doctors either lol

I am lucky I only have the sarcoid in two locations…and I can manage well without steroid but I do have loads of cardiac drugs that keep me going. Sadly my tsh is rising and I think my thyroid is on the way out. Interesting to see what happens. I am still losing post steroid weight (I came off 2 years ago).

Looking forward to staying in contact

Jo x

Shiskine

7:37 pm
24 May 13
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Hi Jo

Good to hear I’m not alone !

As I had reached my joint heaviest ever weight, something which my consultant and GP were fully aware of, I didn’t really think I needed their permission to start a diet !!

I thought the ideal interval between HbA1c tests was six weeks, but if it is three months, then I’ll not panic about that yet. The blood pressure is still a bit of a mystery though, particularly given the loss of weight.

Unfortunately my sarcoid is active, ie. x-rays show it moving about my lungs and, as you’ll be aware, the immune response leaves behind scarring which, and I have to trust my consultant here, reduces lung function appreciably if left unchecked.

I’m doing this diet primarily for its alleged health benefits, with the weight loss a welcome cosequence. I’d love to think that it really does reduce IGF-1 levels and that the body does go into “repair mode”, but I think we need more evidence to support the repair effects of intermittent fasting.

You don’t say where your sarcoid is located but I know my mother’s was in her lymph glands. As I understand it, lungs and lymph glands are the two most common systems to be affected.

Will of course keep you posted on here with my progress … 🙂

David

Saskia

1:45 pm
26 Jul 13
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HI Jo and David,

I am from the Netherlands (42 years old) also have sarcoidosis they found out in 2004 I think I had it longer. A eye doctor were I went when I had flashes asked if I was tiered, trouble breathing etc. I have been on prednisone for 4 times and had Methotrexate for a few years to also been on other medication. I only have pretnisolone eye drops now (never stopped using those) and get injection in my eye around 2 to 4 times a year.

The sarcoidosis in my eyes, my longs have been ok for the last years and sometimes I have it in my joins. And being tiered al the time is a big problem hoping this diet will help with that.

Been taking thyrax for 2 years now because my thyroid s not working well also.

I been doing the diet sins 2 weeks first 3 times I had breakfast, now I only eat in the evening so there is a longer time not eating. I am not noticing any difference yet but will keep going.

I have been on a forum om facebook but have not find anybody with sarcoidosis there yet.

Looking forward seeing how you are doing with the diet

Saskia

Hevskip

6:42 pm
13 Aug 13
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Hi all,
I’m 31 and was diagnosed with sarcoid last year after suffering heart block and having a pacemaker fitted. It’s also in my bones, lungs, liver, spleen, and glands. Joy!
Anyway, I’m on prednisolone and putting on weight and need to get it under control. I was thinking with reported health benefits of intermittent fasting that it might be a good plan to give a go.
I have therefore just done my first week. Have not checked my weight yet but I’m feeling quite positive.
How are you all getting on? It has been a while since your last posts! Hopefully there’s some good news out there!

flitter

11:28 am
20 Oct 13
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Hi all

I was diagnosed with Sarcoidosis (with some neuro involvement) early this year, finally after finding lymph lumps in my neck. There is no evidence of lung shadows but my bronchial function is way down. I don’t suffer two much effect from this as my lungs have 1.5x normal volume. No meds yet.

I had been eating a no meat, mainly (but not exclusively) raw fruit and veg diet for the last 4 years and although overweight had stabilised my weight for the whole period.

After a having a radioactive injection for a gallium scan which confirmed my diagnosis, within 1/2hour I had an upset digestive system particularly my stomach and upper gut. I thought it was temporary and would go away but it didn’t and my hard work of building a great gut system were ruined. I was craving crap and my body was not happy with my regular diet. All of the specialists have denied it was the injection but it was immediate and there were no other factors that could have caused it. With the upset gut my weight has boomed again by over a stone in 4 months.

I tried a version of 5:2 called Eat/Stop/Eat a few years ago, where you fasted for 2-3 x 24hrs a week but ate on all days; missing a lunch, evening meal and breakfast in that order. It was hard but successful but as with most diets I found it inconvenient, socially.

I have high hopes for this diet, as I found this Pubmed study whilst looking around for support with sarcoidosis: Weight-reducing diet therapy in the combined treatment of pulmonary sarcoidosis. The article is in Russian but their conclusion was “Therapeutic fasting produced maximal positive effect in patients with PS stage I, II and duration of the disease less than 1 year. Patients with PS stage II, III and the disease duration more than 1 year should be treated with fasting in combination with corticosteroids.” In view of this I am going to give 5:2 a good go.

Slightly worried about the patchy results the girls of ‘a certain age’ have been posting though as I am 53 and had early menopause.

Starting point, 16st 1lb Please keep posting your results!

TheReremouse

12:10 pm
23 Feb 14
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Hi All,

Just joined the forum, did a search on sarcoid and found this thread. I also have sarcoidosis, since 2009 in my eyes, lungs, lymph and sinuses. Luckily not on steroids at the moment (lungs have granulomas/nodules but my blood oxygen is ok, but ACE is over 260 right now). I have been trying to control my symptoms with anti-inflammatory diet (high omega3 / low omega6, about 80% organic, no meat or dairy). I’m just about to embark on the 5:2 so will let you know how I get on!

Nice to know there are a few fellow sarkies on here!

Grinham

2:42 pm
2 Mar 14
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Hello To you all. Have just started the routine last Monday, and noticed how parts of my body had improved re Keloid and Iritus.So amazed to find it mentioned on site, and fellow Sarcoid sufferers. My Sarcoid was diagnosed through my eyes when I had a bells palsy.it has ravaged through my body, but luckily only have steroids for eyes when they flare up. Do feel much better when on the fast days? and am monitoring the results. Good to read about other peoples condition as was so rare in 1986. I am 53 and hoping this will help my body. All the best to you all Trish

TheReremouse

4:05 pm
2 Mar 14
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Hi Trish,

My sarc was diagnosed through my eyes too, and like you, just have pred eye drops when I flare up. (although my eyes are soooo dry all the time!).

I have only had two fast days so far, (Monday and Thursday) as I have just started 5/2. Its Sunday as I write this and I’m finding myself strangely looking forward to tomorrow. I must be weird. 🙂

I certainly feel like it is doing me good – and it is a real sense of accomplishment so far. I also don’t seem to have over-eaten on my ‘normal’ days, which is a relief. I guess I don’t want to ruin all the previous day’s hard work!

Reading the fast exercise book at the moment but unsure of how my ridiculous levels of fatigue are going to affect HIIT training.

Let me know how you get on – nice that we’re starting at the same time!

-Morgan 🙂

Grinham

9:03 pm
2 Mar 14
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Hello Morgan

How funny am looking forward to my fast day tomorrow as well. Felt so ill today having eaten, not able to walk, dizzy, just bad all over. So have prepared my red cabbage carrots tuna and
sprinkle of tiny bacon crunchy things, with a teaspoon of ceaser dressing…love this crunch..the crunch is so important in feeling sated. Will eat a two egg omlette with mushrooms tomorrow night so that, every thing crossed will be 500 cals. My advise is get into hospital mode of water and nil food, and switch to crunchwhen starving.

Will report back on Tuesday. T

Tell me what you are eating Morgan, am interested.
Righteous Monday tx

TheReremouse

10:20 pm
2 Mar 14
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Your salad sounds lovely! Breakfast is 40g of organic jumbo porridge oats in 240ml soya milk with 100g of blueberries (254 calories). Well I say breakfast, but I hold off on eating until 12pm, then eat dinner around 8pm. Porridge keeps me full for ages!

I have the organic soya milk because it doesn’t have any added calcium or vitamin D (supposed to avoid it with sarcoid)

Dinner is 1/2 carton fresh soup (covent garden or glorious skinny soup) and some fruit (tomorrow is 1/4 galia melon) and a low calorie hot chocolate. (234 calories)

And lots of black coffee. 🙂

I’ll report on Tuesday too! Have a great day x

Grinham

2:56 pm
4 Apr 14
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Hello Reremouse

Well all going o.k have managed to get of the steroid eye drops, and feeling alot better. The strange skin conditions have improved as well. Have proudly say I have lost 9 Lb….The strange thing is have lost my love affair with Carbs? With really helps through rest of week. Doing a 36 fast twice a week, and loving it. Treat yourself to Perrier water and drink plenty to stop the headaches. Saving money as not really interested in shopping,if this life style becomes routine the supermarkets will be in trouble!
Those Covent garden soups can be quite filling, and too salty. Black coffee yes indeed. Am keeping to the same food every week as I enjoy it, it fills me up, and as it’s a non eating time why bother to worry about what to eat. So
Pink lady apple with Black Coffee
Red Cabbage and Grated carrot with those sprinkles
2 egg omelette with mushrooms alot
Apple again if hungry
So boring but it works for me. How are you feeling,have you had weight loss to make you happy?
Regards
Grinham