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Melany Sealy
Site Owner
Posts: 22
Sarcoidosis can affect everyone differently and cause many symptoms which makes it difficult for not only the patient but doctors as well. When you first get diagnosed you look high and low for answers to questions which can lead you to many different places with many different answers. As we all know there is no cure but many treatments out there help with the symptoms you experience. I would like everyone to post here any useful information as to what they have found and if it has helped them in anyway. It's great to have knowledge along with the ability to share it.
July 21, 2012 at 1:28 AM Flag Quote & Reply

Paul M
Member
Posts: 9

My Sarcoidosis Diet Plan.....

Below is my comprehensive list of foods, fluids and supplements I believe are beneficial to my condition. I am not taking any prescription drugs or supplements as yet, so this is purely a natural way for me to help my body at this stage. I'm simply trying to eliminate foods that I believe may aggravate my Sarcoidosis.

 

As with all things that are good for us, it is important to note that all "good" foods should be consumed in moderation.

It is also imperative to review your choices with your Doctor before adopting any new dietary or exercise regimen.

 

Tailor your intake to maintain acceptable blood levels. In other words, take in such things as Vitamin D respectively if your D1.25 is below normal. Monitor Blood levels often and adjust accordingly (with Doctor supervision)

 

The list below is more of an "avoid list", given that it was shorter than listing all the "acceptable" products:

 

Avoid sunlight and any Vitamin D products

No Calcium rich products

No Sugar (limit fruit high in Fructose)

No Aspartame or the like

No sodium

No caffeine (Decaf coffee that uses Swiss water method should be fine)

No Wheat products (totally Gluten Free is best)

No white rice

Eat all nuts (unsalted)

Eat all Vegetables (except for Eggplant and eat only boiled potatoes, limit calcium rich vegetables)

Eat all Fruit (especially those high in antioxidant values such as berries)

Only drink pure water such as spring water, distilled, etc.

No carbonated beverages

No alcohol

No oils other than extra virgin olive oil.

No fatty meats or fish

 

Supplements:

Omega 3 (anti-inflamatory)

Turmeric (anti-inflamatory)

Essiac Tea (daily detox).

 

Try to have 4 to 5 smaller meals a day versus only 3 traditional meals a day.

 

Try to sleep a minimum of 8 hours per night.

 

Try to exercise 30 minutes every day.

 

Be careful to read labels, many products may be fortified with Vitamin D or contain ingredients which should be avoided.

 

Most of the above began with the "Norwegian diet for Sarcoidosis". As I learn more about Sarc and my particular condition, I imagine that I will tweek things as deemed necessary. No one has the definitive diet plan, but there is some commonality to the things that are good and bad for us. Do your homework and work with your Doctors to promote a better living with Sarc!

 

Good luck and God Bless...

July 26, 2012 at 8:19 PM Flag Quote & Reply

Paul M
Member
Posts: 9

A helpful link for typical Sarcoidosis Treatments...

 

http://www.stopsarcoidosis.org/sarcoidosis/treatment.htm

July 26, 2012 at 9:36 PM Flag Quote & Reply

Lorraine
Member
Posts: 3

Paul M at July 26, 2012 at 8:19 PM

My Sarcoidosis Diet Plan.....

Below is my comprehensive list of foods, fluids and supplements I believe are beneficial to my condition. I am not taking any prescription drugs or supplements as yet, so this is purely a natural way for me to help my body at this stage. I'm simply trying to eliminate foods that I believe may aggravate my Sarcoidosis.

 

As with all things that are good for us, it is important to note that all "good" foods should be consumed in moderation.

It is also imperative to review your choices with your Doctor before adopting any new dietary or exercise regimen.

 

Tailor your intake to maintain acceptable blood levels. In other words, take in such things as Vitamin D respectively if your D1.25 is below normal. Monitor Blood levels often and adjust accordingly (with Doctor supervision)

 

The list below is more of an "avoid list", given that it was shorter than listing all the "acceptable" products:

 

Avoid sunlight and any Vitamin D products

No Calcium rich products

No Sugar (limit fruit high in Fructose)

No Aspartame or the like

No sodium

No caffeine (Decaf coffee that uses Swiss water method should be fine)

No Wheat products (totally Gluten Free is best)

No white rice

Eat all nuts (unsalted)

Eat all Vegetables (except for Eggplant and eat only boiled potatoes, limit calcium rich vegetables)

Eat all Fruit (especially those high in antioxidant values such as berries)

Only drink pure water such as spring water, distilled, etc.

No carbonated beverages

No alcohol

No oils other than extra virgin olive oil.

No fatty meats or fish

 

Supplements:

Omega 3 (anti-inflamatory)

Turmeric (anti-inflamatory)

Essiac Tea (daily detox).

 

Try to have 4 to 5 smaller meals a day versus only 3 traditional meals a day.

 

Try to sleep a minimum of 8 hours per night.

 

Try to exercise 30 minutes every day.

 

Be careful to read labels, many products may be fortified with Vitamin D or contain ingredients which should be avoided.

 

Most of the above began with the "Norwegian diet for Sarcoidosis". As I learn more about Sarc and my particular condition, I imagine that I will tweek things as deemed necessary. No one has the definitive diet plan, but there is some commonality to the things that are good and bad for us. Do your homework and work with your Doctors to promote a better living with Sarc!

 

Good luck and God Bless...

Hello, I was recently diagnosed with Sarcoidosis so I am of course trying to figure out exactly what I have to do to stay healthy and off medication. I have come across adds for purchasing an e-book that outlines something called the Aden Protocal. It was written by Danielle May. Do you know anything about it. I would like to get some info before I purchase it. Thanks, Lorraine

August 15, 2012 at 11:19 AM Flag Quote & Reply

Paul M
Member
Posts: 9

Hi Lorraine,

Sounds like you're motivated to do something about your condition, that's a very good start!

Forget Aden Protocol...its a bit of a scam. I've learned to stay away from any sites that have a fee or sell products. If you want the best information, try Inspire.com (search sarcoidosis). This Community is very helpful. You'll still need to weed through the posts for good relative information, but give it a try. All the best....

August 16, 2012 at 6:13 AM Flag Quote & Reply

Lorraine
Member
Posts: 3

Hello again,

I thought that maybe it was too good to be true. I will check out Inspire.com and keep looking. I am quickly realizing that the specialists don't know much about how to help with the day to day things. I saw two dieticians and neither focused in on staying away from foods that caused inflammation. Makes sense though! Have you had any experience with yoga to try to improve lung function. I have tried a few sessions of hot yoga and wonder if it helps or hinders. Thanks so much for your help. I am already cutting out some of the things that I did not realize I should stay away from. Lorraine

August 16, 2012 at 10:46 AM Flag Quote & Reply

Lorraine
Member
Posts: 3

Hello again,

I thought that maybe it was too good to be true. I will check out Inspire.com and keep looking. I am quickly realizing that the specialists don't know much about how to help with the day to day things. I saw two dieticians and neither focused in on staying away from foods that caused inflammation. Makes sense though! Have you had any experience with yoga to try to improve lung function. I have tried a few sessions of hot yoga and wonder if it helps or hinders. Thanks so much for your help. I am already cutting out some of the things that I did not realize I should stay away from. Lorraine

August 16, 2012 at 10:46 AM Flag Quote & Reply

wanda
Member
Posts: 10

Paul M at July 26, 2012 at 9:36 PM

A helpful link for typical Sarcoidosis Treatments...

 

http://www.stopsarcoidosis.org/sarcoidosis/treatment.htm

hello paul;

would you be able to e-mail me the list of foods to eat and the ones to stay away from i enjoyed read your topic thanks so much we all need help..steelwife46@hotmail.com..i have no ideal how to copy this ..i am allso on face if you would like to add me ..

god bless you ...wanda davis

--

;) wanda 

August 23, 2012 at 4:29 PM Flag Quote & Reply

wanda
Member
Posts: 10

Melany Sealy at July 21, 2012 at 1:28 AM

Sarcoidosis can affect everyone differently and cause many symptoms which makes it difficult for not only the patient but doctors as well. When you first get diagnosed you look high and low for answers to questions which can lead you to many different places with many different answers. As we all know there is no cure but many treatments out there help with the symptoms you experience. I would like everyone to post here any useful information as to what they have found and if it has helped them in anyway. It's great to have knowledge along with the ability to share it.

hello melany

just a short note to see how you are doing ..i am seeing a new doctor in toronto now he has me on a inhaler.breathing is not to bad now the only thing is i am so trier all the time ...

god bless you melany

--

;) wanda 

August 23, 2012 at 4:32 PM Flag Quote & Reply

Cathy S
Member
Posts: 1

Hi Everyone.  I am posting to look for support as my fiance has been diagnosed with Sarcoidosis.  He started getting sick 6 months ago, but didn't tell me that his legs were sore.  He really was a mystery to the doctors.  First we thought Gout or Rhemetoid Arthritis.  Then another doctor put him on allergy pills and then the vomitting started.  After 5 days of this we went to urgent care.  He also had really bad headaches daily so they did a cat scan of the brain looking for tumours and then did a chest xray.  That was when we first heard of this illness.  Any pain meds he was put on just made him vomit.  The headaches were not easing up and he was daily on tylenol.  Finally after another bout of vomiting and no energy, from a man who has never been sick as long as I've known him it was hard to watch him loose weight and seem like he was wasting away.  We went to the ER this time and insisted that something be done.  They did the ct scan of his chest and then told us that the lung specialist was going to see him.  Another new sympton at this point was that he was very jumpy and sensitive and his left hand was twitching.  Most of the summer he stayed indoors as the sun was too much for him.  He had to reduce his hours at work, thank heavens he is his own boss.  We got word that they thought it was sarcoidosis and needed to do a biopsy which would be in a week.  After that we waited and waited for what seemed like an eternity.  He wasn't getting better and we were not going to see the specialist for another month.  After another bout of vomitting and headaches and visits to two eye doctors we ended back at the ER as his breathing was getting worse and he had fevers every night.  At this point he was finally put on prednisone.  The fever was not pnemonia but probably just a cold.  Scary though.  I would love to hear from those who have dealt with this and what they find supporting and those caregivers who have been frustrated as well.  It has been a hard time as well as dealing with teenagers a move but we keep going strong.

--

Cathy Sundby

Caregiver

October 3, 2012 at 11:02 PM Flag Quote & Reply

Martin Baker
Member
Posts: 3

Is it true, some doctors  that those obese and over weight persons are prone to this and that even taking wrong medication for weight loss can lead to it as well? Are there no any limitation of age for this to have? Thanks for the possible answer


Regards,

Martin James Baker

August 17, 2013 at 9:40 PM Flag Quote & Reply

Dawn Smith
Member
Posts: 6

Hi,

Obesity is not a pre-disposition to become ill with sarcoidosis. No cause is known for the onset of the disease. The typical age that a person will become sick is between 20 and 40 years of age, however, that is just the majority, there are always some older and younger who will, unfortunately, become sick.

I hope this answers some of your questions.

Dawn 

September 1, 2013 at 2:13 AM Flag Quote & Reply

Roberta Capell
Member
Posts: 1

Hi, I joined this site to help my dad who was diagnosed with Sarcoidosis almost a year ago, he is still having a hard time breathing, most recentley he has been having trouble swallowing, his sarc is in his lungs, has anyone had difficulty swallowing? And if so what did u do to help it or stop it? Thanks, Roberta

November 27, 2013 at 7:39 PM Flag Quote & Reply

Martin Baker
Member
Posts: 3

When it comes to this kind of deseases, do you think generic mdecinal stuff is also worth compare to any brand name product? What are the benifits of suing generic over brand name except that of prices.?

--

check link for eatmywords.com

May 22, 2014 at 10:53 AM Flag Quote & Reply

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