Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Autoimmune Diet?

Food diet

  • Please log in to reply
9 replies to this topic

#1 jodip

jodip

    Newbie

  • Members
  • Pip
  • 4 posts

Posted 21 April 2013 - 03:05 AM

I've been reading many things recently about autoimmune diets. Scleroderma is never mentioned in the lists of diseases that are supposedly HELPED by these diets, but I am wondering if anyone here is on a special autoimmune diet? (Forgive me if I just can't find the posts about it)

What can you eat/not eat? Do you feel it helps with your symptoms?

Thanks in advance. :)

#2 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 21 April 2013 - 09:06 AM

Hi Jodip,

 


from our medical page Diet and Scleroderma:

 

The most important thing to know about diet and scleroderma is that all systemic sclerosis patients should have their nutritional status assessed.

 

Systemic scleroderma patients should always consult their doctor(s), especially their rheumatologist, before using any vitamin or herbal remedies or making any significant changes in their diet.  In general, most doctors recommend that scleroderma patients follow a normal, well-balanced diet , without the addition of any herbs, vitamins, or minerals. Do not cut out any food groups from your diet, nor go on any "cleansing" diets, since this may accelerate the disease process.

 

I've never tried any special "diets" to help with Scleroderma; although I'm not a dietary expert I would suggest a balanced, healthy diet is the best way to go.

 

Kind regards,


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 21 April 2013 - 09:44 AM

Hi Jodip,

 

Whilst researching for something else, I've come across another interesting link from our medical pages: Food Guide for Autoimmune Disease and Illnesses.

 

I hope you'll find it helpful and informative!

 

Kind regards,


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#4 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 21 April 2013 - 04:15 PM

Hi Jodip,

 

As you can probably tell by our web pages on the subject, and our Sclero Kitchen subforum, most of us around here are very interested in the role that food might play in the process of disease and/or restoring our health.

 

So, like Jo pointed out, we have that section on Food Guide for Autoimmune Disease and Illnesses and also Supplement Guide for Systemic Scleroderma, In addition, there may be some sort of link between Gluten Sensitivity and Scleroderma, where it says, "Gluten sensitivity and Celiac disease are a known or suspected cause of scleroderma and dozens of other autoimmune diseases. Even if tests for gluten sensitivity and Celiac disease are negative or inconclusive, trial of a gluten-free and casein-free (GFCF) should be considered."

 

But, I should point out that it is not easy to make dietary changes, and sometimes when scleroderma patients go on a health kick, it gives their body more energy to attack itself.  An underlying reason for this might be related to one study, which found that exercise increases inflammation in scleroderma patients.

 

Therefore, discuss any lifestyle changes you are interested in making with your scleroderma expert, and even if they give you the green light, still consider the idea of approaching any/all changes slowly and carefully. If we try to avoid jolting our system with drastic changes, and ease our way into things, we might be more likely to succeed -- or at least we can probably do less damage, and reverse course before a head-on collision.

 

In other words, it is not like the good ol' days when we were healthy, and could get away with all sorts of fun health kicks or crazy diets or exercise, or gobble whatever new supplement hit the market.  To manage a serious illness in a competent fashion takes a lot of research (which you are doing!!), a healthy support system (got it!!), a lot of collaboration with our doctors, and a lot of tedious trial and error as well.

 

And, you might find that giving up milk solves your heartburn issues (at least, for now) but another member might find they can tolerate milk fine, but that gluten is a real problem for them. It won't mean that either of you are wrong, just that everyone with scleroderma is different.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 jodip

jodip

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 4 posts

Posted 23 April 2013 - 03:58 AM

Good info! Thanks. I don't know if changing my diet would change my symptoms at all, but I can only imagine that cutting out alcohol and caffeine, both affect blood vessels, would help. Alcohol would be an easy cut but caffeine? Oy.

I don't know if I am ready mentally to make a big change like cutting gluten or all sugars from my meals. I have been waiting over a month to see my rheumatologist, and that appt is next week. I will make sure to add DIET to my list of questions!!

#6 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 24 April 2013 - 10:56 AM

Hi Jodip,

 

You are handling the whole process correctly by just asking your scleroderma expert for their guidance in the matter.

 

They might not want you to upset the applecart with a lot of changes right now, but then again, they might feel strongly about certain dietary improvements that might make the biggest difference for your particular care.

 

I quit coffee for a very long time, and then I was able to tolerate it again, but in lower doses. Did you know that if you ask for a "small" Starbucks, you will get a Tall, which is 12 oz -- but the serving size for a cup of coffee is 6 oz?

 

So a single "small Tall" is actually two full cups of coffee. To get a smaller serving, you can ask for a SHORT, which is 8 oz.  That's still 2 oz more than the doctor's consider to be a "cup" of coffee. 

 

It's ironic that in order to get a SMALL cup of coffee, you have to ask for a SHORT, but it is a way to cut back a little -- if or when you ever feel inspired to try it. For around the house, we have 8 oz coffee cups for me.  I still feel like I've had my cup of coffee, which I most certainly have, but I might feel deprived if it was served in a usual-size coffee mug. And this way, I am at least able to accurately track my consumption so I don't cross the border into the Land of Raynaud's, unaware.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Auckland, New Zealand

Posted 24 April 2013 - 12:15 PM

Hi Jodip,

Before I was diagnosed in 2003, and had symptoms since 1966!, I decided to try a dairy free regime and I had, prior to that, tried cutting out gluten.   Although I realise now that I knew diddley squat about what cutting out gluten meant!!

 

These changes made no appreciable difference at all except frustration and a feeling that I was missing out on the yummy stuff.   However Shelley's comment that drastic changes might accelerate things may have made the difference to me, because it was at this time I was admitted to the emergency ward and my disease was discovered.

 

The dietary advice I have received since has been to avoid alcohol, spicy foods, chocolate and caffeine.   I follow this regime now and have had no major upsets for a while.

 

Actually, the caffeine avoidance was advised when we discovered I had heart involvement, which on investigation turned out to be Rheumatic Heart Disease rather than Scleroderma.

 

Now I know I have Systemic Scleroderma, Sjogren's, Primary Biliary Cirrhosis and Rheumatic Heart Disease, and apart from listening to my body and getting plenty of rest I really have it pretty goodl

 

Best wishes

Judyt



#8 Jac

Jac

    Bronze Member

  • Members
  • PipPip
  • 20 posts
  • Location:England

Posted 28 April 2013 - 09:22 AM

It's really important to see a dietician or nutritionist.

 

I've always had a healthy diet but have discoverd I am severly anaemic due to this disease and associated complications and also suspected gluten intolerance (waiting for tests for this) and the diet guru helped me tweak my pretty good diet and it has helped.

 

I eat lots of immune boosting foods like peppers, nuts (almonds especially), leafy green vegetables, oatmeal etc. I don't drink and I have cut down tea and coffee and started with herbal and green tea.

 

After just 3 weeks I can see a difference in my joints, they are not as sore (I have rheumatoid arthritis) and a healthy diet keeps my weight down too which also is a good thing

I have also been given an iron supplement for the time being but the diet guru noticed my diet was short in iron because I don't eat a lot of meat and not enough green stuff so I have corrected that and I hope for a healthier future.

 

It was good to get that input - hope that help's you!

 

Am dreading if I have coeliac disease because I love making and eating bread.

 

Finger's crossed it ain't that!



#9 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 28 April 2013 - 06:49 PM

Hi Jac,

For your sake, I hope you pass your celiac testing. But, since you love making bread, you'll do just fine either way, as you can still bake and eat bread, it just would change to baking gluten-free bread. There are lots of excellent, hearty and tasty flours that are not wheat, barley or rye.

 

And you would probably even enjoy grinding your own flours out of things like rice, corn, quinoa, oatmeal, and beans. For bakers, it becomes more of a culinary adventure, but for nonbakers, it generally becomes much more expensive, in fact so much so that they might even toy with the idea of taking up baking as a new hobby.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Auckland, New Zealand

Posted 28 April 2013 - 08:17 PM

Hi Jac,

 

Regarding Gluten  free regime, our daughter has discovered after years of tummy troubles that if she follows a gluten free regime she is much better.   At first she found it hard to get her head around but she loves baking and once we started looking we discovered lots of lovely recipes available in all sorts of places.   Wheat is such a highly hybridised grain these days that a lot of people are finding that their bodies have not evolved as fast as the wheat and that seems to be why so many particularly older folks find it indigestible.

 

In New Zealand we find flours which are gluten free are available in ethnic type stores.   Indian and Chinese  people use other grains as a matter of course in their cooking so these flours are fairly readily available, in larger centres at least.

 

Breadmaking in the traditional western way is not really very successful but all sorts of other baking turns out just as well if not better.   In NZ we now have commercial loaves in supermarkets which are very acceptable so in our daughter's home she makes everything else they eat and keeps a supply of sliced bread in the freezer.

 

Good luck for the results of your test, and it could be that even if you get a negative result you may find that limiting the amount of wheat you consume could be a help to you anyway.

 

Judyt







Also tagged with one or more of these keywords: Food, diet