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Biomarker for Diffuse Scleroderma skin has been discovered!


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Dysphagia/gerd


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#1 Sharonvandee

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Posted 20 June 2007 - 11:37 PM

I suffer from dysphagia and GERD and at times struggle with the adaption and changes this makes to my life. I was wondering if anyone that has these symptoms has any suggestions of recipe or styles of preparation to make foods more palitable.

my home zucchini soup and custard are getting a little boring so I am looking for new ideas to increase my ever decreasing appetite

Thanks in advance
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#2 Elehos

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Posted 21 June 2007 - 02:04 AM

Hi Sharon,

It's weird that I was going to post something this AM about recipes for quick-fix meals, especially for those days when the raynaud's is bad in the feet, and you started the topic! We'll all probably have to do this by PM since there are rules about diet change on the board, but if you could list foods that set off your GERD, I'll avoid those.

For some reason I can add chili pepper to my food or drink a cup of coffee without any trouble most days, but bananas set off the GERD like nothing else. Go figure. Let's see how many creative cooks are out there!

Best wishes to all,

Elehos

#3 Guest_Sherrill_*

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Posted 23 June 2007 - 03:20 PM

The www.sclero.org website has a section on Scleroderma and Diet.

For me I find what I eat is considerably down to "trial and error". Mostly error lately! unsure.gif

I haven't been able to prepare my own food for 10 years now, but I do "supervise" in the kitchen. Trouble is that I can't think of anything I particularly want to supervise lately! Ugh! How many here have problems with lack of appetite? It's become a real problem for me recently.

Warm hugs,



#4 Sharonvandee

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Posted 23 June 2007 - 05:02 PM

Thanks Sherrill for the link I had a bit of a look and will look at it more later.

I too have a lack of appetite which makes things difficult, because I could live on coffee and tea and not want for anything else. I often only eat because I know my body needs it to survive. Problem is the things I want to eat just won't go down and stay down so soup it is.

I did get excited though when I started prednisolone, I got hungry first time in months even craved certain food, though this was short lived (2days) and I am back to not being hungry again.
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#5 WestCoast1

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Posted 23 June 2007 - 06:07 PM

Hi Sharon,
I have gone through this before. It is so rare for me not to have an appetite that it actually scared me! There was absolutely nothing that I could eat or wanted to eat. At that time I remember being so tired that I couldn't get out of bed. This was a while back and before the Plaquenil. I believe that it was a flare up. I am not sure if this is what you are going through right now, but a possibility.

Some easy to swallow and yummy meals that I have been fixing lately are grilled salmon seasoned with lemon(lots of it to make the flakey fish more moist), pepper and salt with well steamed broccoli. Like you, I have soup often and I soak crackers on the top. A yummy treat that has worked for me in the past is a glass of milk to soak graham crackers in!

Some things that I love and always regret eating are ravioli, pasta, rice, steak, thick breads and potatoes.

I hope that you feel better soon. :)
*WestCoast*

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#6 bookworm

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Posted 23 June 2007 - 07:46 PM

Hi Sharon,

I also have dysphagia and GERD, although they seem to be under pretty good control since I started taking Prilosec. Do you take anything for yours?

At the moment, though, I am having a real problem with my stomach and I have almost no appetite. Tonight my family went out to eat at a cafeteria, and I looked at all that good food and didn't really see a thing that I wanted to eat. I agree with you about coffee -- I'd love to live on it but I have to eat something in order to live! I should say that's the way things are at the moment because I do sometimes have a good appetite. Right now with these digestive problems, I don't.

One thing I sometimes like is potato soup. It's pretty quick and easy to make and it's rather bland and I seem to tolerate it as well as anything else.



Mary in Texas

#7 Sharonvandee

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Posted 23 June 2007 - 08:33 PM

Dear Mary

As I am still in the process of the DR learning to manage this I just take somac and adalat for the spasms. I am on prednisolone but that is for the lungs. I am hoping that when I go to the scleroderma specialist for the first time in three weeks that I will get some answers and soloution.

The gastro specilaist wants to tighten the sphincter valve on the stomach but there is up to a six month wait on that procedure here and he says once he has a look at the progression he may decide that it is not in my best interest to carry out the procedure.

So for now we wait and see and watch the damage worsen and in the mean time we find ways to cope.

I will try the potato soup and see if I can tolerate it thanks again
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#8 bookworm

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Posted 24 June 2007 - 09:07 PM

Hi again, Sharon.

My primary care doctor prescribed Prilosec (same as Nexium). At the time I thought I had my GERD under good control. I had acid indigestion often, but a chewable, over-the-counter medicine took care of it. The thing was that when the acid came up in my throat, it was burning my esophagus and then scarring it. This was what was causing me problems with swallowing -- and they were severe problems!!! I almost never got through a meal without having to leave the table to go force food back up because it wouldn't go down.

I didn't really want to go on the Prilosec because I was satisfied with the chewables. My doctor insisted that I try it and told me it sometimes takes a week to kick in. Meanwhile, he said I could also take the chewables, but not at the exact same time as the Prilosec..

What a surprise! I had expected the acid reflux to improve, but the sudden ease in swallowing was an unexpected bonus.

I rarely have any trouble with swallowing now. I don't know, of course, what specific medical problems you may have, and this might not work for you. I have heard of Adalat, but don't know what it is. I am unfamiliar with Somac.

I am on Prednisone, but it's for swelling joints and it also helps my lungs.

I hope you can get some relief before six months passes. That seems like too long to wait.



Mary in Texas

#9 Sharonvandee

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Posted 24 June 2007 - 10:42 PM

Dear Mary,

Somac is similar to nexium and adalat is a calcium beta blocker which is usually used for blood pressure but I use it for relaxation of the esophegus as it spasms alot.

I have extreme acid too with constant regurgitation and choking during every meal that is why I just dont eat with the kids unless it is mashed up like baby food.

I have never heard of prosolec hear but from what your saying it sounds a little promising I may mention that to my dr when I see her. I havent eat normal food for at least six months now but even thick food will get stuck now so hopefully they have a drug here in Austrlaia like the one you mentioned and I can start to eat even a little.

heres hoping
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#10 janey

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Posted 25 June 2007 - 03:51 AM

Sharon,
I'm sorry you're having problems finding things that you can eat. It's like we're always on the elimination game. I keep eliminating foods, while finding very few foods to replace them. The heartburn/reflux thing is a constant battle for me. I don't really have that hard of a time swallowing (except a few things like apples), but I do have problems with certain foods or eating too much in one sitting, causing reflux.

I've taken Prilosec for about 3 years. It's on over-the-counter drug. My doctor prescribed 2 per day, but now that's not working. He prescribed one at day Prevacid, but I get heartburn about 8 hours later so I take Prilosec. I see him next week so I'm going to ask to go up to 2 a day on the Prevacid. He originally prescribed Nexium, but the insurance said I had to try Prevacid first. What games they play!

Things I've eliminated: chocolate anything, acid based foods (tomatoes and oranges are the worst), real sugary foods, foods with high fat content (like fried chicken), and wine. Sometimes I can manage spicy, sometimes I can't. I'm on coumadin so I've also cut way back on Vitamin K foods (dark greens) in order to keep my coumadin dosage down. I do eat a lot of soups. In the heat of the summer, I make cold soups. They are great because most are pureed and very tasty! If you'd like a recipe for a cold asparagus or cucumber, let me know and I'm PM it to you.

Big Hugs,
Janey Willis
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#11 Sharonvandee

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Posted 25 June 2007 - 11:23 AM

Thanks Janey for the reply

I would love any recipe you have that works. Gets boring eating the same things.

I have had a few suggestions alwready from the girls which meant the other night was the first time in months I ate a meal enough to fill my tummy. Went to bed feeling like a king. Till four hours later then the heart burn and stomach pains start, but het it was so worth it just to sit with the family eat together not choking just contentment.

the things I used to take for granted.............now I treasure. funny how this disease can do that to people and family.
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!