Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Can we talk about food


  • Please log in to reply
10 replies to this topic

#1 ladyhawke

ladyhawke

    Silver Member

  • Members
  • PipPipPipPip
  • 120 posts

Posted 13 February 2008 - 02:40 PM

I have bad stomach problems. I take Pantoloc with Zantac twice a day as well as domeperidine (motility drug) 2 pills, 3 times a day. I know that I have developed a milk intolerance. But I can tolerate lactose free milk which is all that I buy now. I can do breakfast and lunch pretty good, but can't do supper. My stomach swells up, goes hard and I just have an awful time. I drink Gaviscon by the bottle full on top of the drugs. I now, am trying to have my main meal at lunch (not a big one) and supper just eat very light and nothing before bed. The stomach is bad enough but add the acid reflux on top of it and it makes for a pretty rough night. Anyway, just wondering what you all are doing for diet. If you eat anything special, stay away from anything special etc.

 

Thanks,

 

Lisa


Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

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

Posted 13 February 2008 - 03:43 PM

Hi Lisa,

That's a good question. We have a page on the main site that deals with Diet and Systemic Scleroderma.

A few tips from there include:

"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."

For relief of systemic scleroderma symptoms such as Raynaud's and Heartburn, you may want to particularly avoid:

  • Caffeine (can trigger Raynaud's and Heartburn)
  • Chocolate (can trigger Raynaud's and Heartburn)
  • Peppermint (can trigger Heartburn)
  • Ginger (can trigger Heartburn)

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.

#3 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 13 February 2008 - 06:31 PM

Lisa,

 

I have found that diet has had one of the biggest effects on how I feel day by day. The link that Shelley provides has some great information. Many of the ideas presented there I've tried and found effective for me.

I think a diet that works is based on your symptoms, lifestyles and enjoyability. The reflux issues you are dealing with require more than just diet changes, but also lifestyle changes, especially at night. Here's a section on reflux prevention you might take a look at.

The "diet" that I have found that works best for me consists mainly of protein, fruits and vegetables. I have more energy and less "digestive" problems. When I eat too many carbohydrates I have breathing problems because of the amount of CO2 produced by carbs. (Ido have lung problems). I don't digest heavy grains very well. I replace diary products with soy products. This has reduce a lot of the post nasal drip I suffered from. All of these diet changes were made through months of experimentation on each.

Take any changes slow, as as Shelley mentioned, it's not good to eliminate any food group completely. Try to get your vitamins and minerals in your food. You might also ask you doctor about a referral to a nutritionist. That might help you as well. I hope you find something that helps to reduce your unpleasant symptoms.


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 rlbrussell

rlbrussell

    Senior Bronze Member

  • Members
  • PipPipPip
  • 45 posts
  • Location:Chapel Hill, NC

Posted 13 February 2008 - 10:55 PM

That is so interesting. I do exactly the same thing Janey. I have trouble breathing when I eat a lot of sugar but I didn't know why.

One other thing I do isjuice my veggies which makes the whole digestive thing easier for me.
Rosa
Diffuse Sclero
dx Jan 2006

#5 Clementine

Clementine

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 14 February 2008 - 03:25 AM

I am like Janey, what I eat determines how I feel, in a major way. Forget eating out, even if I choose the healthiest item on the menu. If I don't make it, you can be assured it will make me feel worse. Janey, I feel like I am suffocating when I eat, not to mention the distention. I did not make the connection on gas exchange and carbs. Do you know where I can read more about this?

 

I find this really interesting!

 

I was reading my doctor reports, as I often do before my regular rheumatologist appointment, but something my doctor has never discussed with me is I have signs of mixed restrictive AND obstructive lung disease, like Peanut.

 

Lisa, I can say one thing, stay away from soups and other liquids at the end of the day. I started taking Nexium in the morning and night. I don't know if this makes a difference, but I try to eat foods that don't cause inflammation. My doctor doesn't think it matters, but I do.

 

Good luck with your diet!

 

Tangelo



#6 ladyhawke

ladyhawke

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 120 posts

Posted 14 February 2008 - 03:30 AM

Thank you so much Rosa, Janey and Shelley, I'll go to the link that you listed here and check it out for sure.

 

You know, I was just thinking this morning that "I think" when I eat chocolate, my stomach just bulges up and sugar too and some breads. Oh man, I'm just starting to figure this stuff out. I think I've been fighting it all along as well because I've always been a big eater and eat absolutely everything. There is nothing out there that I don't like! This is going to be very hard. But eating that stuff is definitely not worth what I go through afterward.

 

One more question if you get this. Is there any food that you find will actually settle your stomach? I don't quite know how to say it. Like I can tolerate certain foods, like poached eggs and some soups. I get hungry and my stomach is bloated and hard and I'm afraid to eat but I feel hungry. So is there anything that you can eat that will actually settle your stomach instead of aggravating it more?

 

Thanks again.

 

Hugs,

 

Lisa


Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#7 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 14 February 2008 - 07:55 AM

For those interested, you can find a little information about carbohydrates and gas exchange on our Preventive Care for pulmonary involvementpage.

Quick summaries from a couple of articles on this page:
We breathe in oxygen and exhale CO2. If we have too much CO2 production, we may not exhale it all causing us to inhale less oxygen. (How Our lungs work)
Carbohydrates produce more CO2 than fats and proteins. "People suffering from chronic lung disease may find a low carb, higher fat diet can make a big difference in their life...However, please be aware that calories are needed from each group and no group should be removed from your diet completely." (Nutrition and The Lungs)

My infusion nurse brought in some articles on this when I was complaining about having a harder time breathing this winter than in the summer. After talking I realized that I have been eating more complex carbs this winter (you know that wonderful comfort food). In the summer we grill proteins and vegies mostly. I've done some experimenting in lowering my carb intake (particularly complex carbs) and have found my breathing is much better. Talk to your pulmonary doctor about this on your next visit.


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#8 Sam

Sam

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Delta, Ohio

Posted 14 February 2008 - 09:44 AM

LADYHAWKE, I take nexuim twice a day and sometimes I still have reflux at night and I take what is called Zegrid. My gastro doctor gave me some samplse of it, I told him sometimes I use baking soda water at night. Zegrid is a powder form that you add so much water to it and drink it. then fill the glass up and drink it. It helps alot. I do watch what I eat most of the time. But I know what I can't have or it will trigger it off. But I have to have my coffee in the morning. I hope this helps, Janey and Shelly has given you some good advice too.
Sam

#9 KarenL

KarenL

    Silver Member

  • Members
  • PipPipPipPip
  • 213 posts

Posted 14 February 2008 - 10:02 AM

A year after being diagnosed with scleroderma, I was also diagnosed with celiac disease, or gluten intolerance. It's been so prevalent in scleroderma patients that my rheumatologist is doing an in-depth study of the correlation between the two. He's found four cases just this year of overlaps between the two diseases. You may want to be checked for celiac. Your symptoms sound like it's a possibility.
Karen

#10 ladyhawke

ladyhawke

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 120 posts

Posted 14 February 2008 - 04:41 PM

Hi Stacey

 

Thank you so much for taking the time to email that to me. I haven't heard anything about antibodies but have written this all down and will take to my next appointment as well as do some searches on the net. I'm like you and have always been healthy, never been off work for anything until now. I've always been extremely active and on the go. I keep hearing that I need to rest and take naps. Man, I just can't seem to make myself do that. I made it through this cookie swallow test, actually the barium they use they put marshmallow flavor in so it's not so bad. I got to watch my skeleton swallow the stuff on the screen which was pretty weird. So won't know anything now until I see the gastroenterologist in March.

 

I've gone through tests for cancer twice now. I think they keep a pretty good eye on that. I was told that cancer is an "underlying" disease found in a lot of polymyositis patients. The way they explained it to me is that because of the polymyositis, they go looking for cancer.

 

So is it by chance that they find the cancer or is it because of the polymyositis causes the cancer, they don't know. So what they are saying is that if they looked for it and you didn't have the poly, they'd find the cancer anyway. Anyway, I think there's way more that they don't know than what they do know. They don't seem to know a lot about either one of these diseases. Thanks so much again, I really appreciate all this and Happy Valentine's Day to you too!

 

Hugs,

 

Lisa


Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#11 ladyhawke

ladyhawke

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 120 posts

Posted 15 February 2008 - 03:51 PM

Thanks so much Janey, Karen and Sam. I got all mixed up and replied to Stacey who I was supposed to PM that too. Oh well, I'll get this all straightened up sooner or later.

 

I am gathering so much good information and so much that I didn't know about.  I'm checking out all the links that everyone has passed along to me. And it's just so nice to know there are others out there that you can talk to. I'm going to ask my doctor about the Zegrid, I've looked it up (Thanks Sam!), I use an Ayurvedic product every night but I think the Zegrid would be better and more effective.

 

Karen, I'm also looking up Celiac disease and will definitely ask about it. Thanks again, I can't tell you how much this has helped.

 

Hugs,

 

Lisa


Life is NOT meant to be a struggle. Life is meant to be joyously abundant.