Quantcast

Primary Sclerosing Cholangitis (PSC) - Online Support Group

Food in relation to psc

Hi Everyone,

I have had doctors say to me that there is no correlation between food and Primary Sclerosing Cholangitis and Ulcerative Colitis. I believed differently because I noticed earlier on when my daughter drank milk her stools became more bloody. I therefore removed milk from her diet. Then I was referred to a Naturopath who told me to take her off all dairy and gluten. I did research and spoke to people who suggested the same and so with reluctance I tried it. She seemed to do much better, but was still not doing as well as I thought she should be. The Naturopath told me to take her off all processed foods too. I felt that was too harsh as she was only a child and it was hard enough that she has to be deprived of so much and suffer so much. Besides her doctors did not believe that there was any substance to what the Naturopath was saying. I continued to give her treats like pasta (gluten free and dairy free), biscuits, cakes etc.

Anyway jumping ahead. On 2nd July 2014 my daughter had bloodtests that showed her ALT: 780, AST: 1205 and her GGT 269. I was really worried. I looked through all Princess D's bloodtests and realised it had NEVER been that high before. I got really scared and this time when the Naturopath told me to cut out processed foods, I did. He told me to start her back on the smoothies. I did. Every morning we BOTH had smoothies. I bought organic food and was more strict with her eating habits. I did feel for her, but Mummy ate whatever she ate so......

Yesterday her blood tests were: ALT: 55 AST 70 and GGT 113.

Maybe I should have listened to the Naturopath from Day One. He kept saying Paleo Diet.

Typical Smoothie:

Half a tumbler of spinach with a few leaves of kale or half a tumbler of kale

1 to 1 1/2 tablespoons of chia seeds

1 scoop of Plantfusion Protein Powder

5 to 6 halves of walnuts

Fruit (usually strawberries, blueberries etc)

Avocado (optional)

2 tablespoons Almond butter with cinnamon (optional)

Coconut water

She also has Genestra HMF Probiotics, Nutrasea, Sisu liquid calcium.

The Naturopath also started her on Genuine Health-Whole Body about two to three weeks ago. I haven't been diligent with that though. She should be taking that every day.

She has lots of fruits. I do give her the odd treat, but I am strict with the ingredients.

I just wanted to share because I know how it is when you are dealing with these challenges and feel so helpless.

I apologise for the length of this, but will be happy if I help one person.

Kind regards,

PrincessD's Mum

1 Like

PSC is an autoimmune disease. the immune system is attacking the liver. it is not a liver issue....it is an immune reaction to something. this is repeatedly illustrated through recurrence after transplant. the fact that conventional doctors don't recognize this and look for the root cause is RIDICULOUS!!! they just treat the symptoms....they don't attempt to fix the problem. patients need to take things into their own hands because the doctors don't care about them as much as the patient cares about themselves. google paleo autoimmune diet and good luck.

I really appreciate your sharing your "Paleo Diet Approach". Their is a book by the same title written by Sarah Ballantyne, Phd - Nutrition. It is not a recipe book, but has all food possibilities. Sarah takes a scientific aproach to explaining why eating this way will help reverse autoimmune diseases. She actually mentions PSC as an autoimmune disease... Available on Amazon.com and well worth having in your resource area. This has helped me tremendously. This book was referred to me through this website...

yup

Jan Escamilla said:

I really appreciate your sharing your "Paleo Diet Approach". Their is a book by the same title written by Sarah Ballantyne, Phd - Nutrition. It is not a recipe book, but has all food possibilities. Sarah takes a scientific aproach to explaining why eating this way will help reverse autoimmune diseases. She actually mentions PSC as an autoimmune disease... Available on Amazon.com and well worth having in your resource area. This has helped me tremendously. This book was referred to me through this website...

Thanks for this. I have been thinking that this makes more sense than anything to boost the autoimmune system. I have gotten the same response from physicians too.

to be clear, you want to suppress the autoimmune response.

fleur54 said:

Thanks for this. I have been thinking that this makes more sense than anything to boost the autoimmune system. I have gotten the same response from physicians too.

Ah, yes... thanks for pointing that out. Wrong wording can cause wrong thinking... Boost the immune system would have been more appropriate, but to suppress the autoimmune response expresses what needs to be achieved more accurately.

That shake is VERY similar to the one I drink every morning!

It's ludicrous that doctors would discourage diet therapy. My doctor recently said that he was very surprised at how normal my LFTs have been, given the amount of scarring in my liver (2 failed attempts at stent placement), and told me to continue whatever I was currently doing- because it obviously works! Well, upon being diagnosed, I immediately started a gluten-free, vegan diet; lots of raw fruits and veggies, fresh vegetable juices, essential oils, natural supplements (milk thistle, fat-soluble vitamins, fish oil, turmeric, plant-based proteins). I've eliminated processed food completely from my diet as well. I know PSC is progressive, but so far dieting has been very successful, and I feel healthier now than ever before. I'm finally at a healthy weight, and my blood pressure has gone from pre-hypertensive levels to normal.

I'm still brand new to the site- is there a section designated to diet therapy/ naturopathy? I'd love to get ideas or exchange some healthy recipes!

Best of luck to your little girl!

Good for you -- I am so happy to hear your daughter is doing well! I made the same choice to use nutrition to help my daughter who is now 8 when she was diagnosed w psc and ulcerative colitis. My daughter was sensitive to gluten, dairy, egg and soy..so we had to cut all of them out. We eat all whole foods, mostly organic...nothing processed. It is not always easy, but we are doing well. My daughter's liver numbers immediately went to normal and have stayed normal after the diet change. Her dr also doesn't believe in nutrition ... it is crazy especially after seeing the results. Wishing you and your daughter all the best!

Dear Bubba29,

Thank you for taking the time to read and respond to my post. The Naturopath has been saying the same thing you have said from day dot, but I guess I was torn between him and the conventional doctors.

Thanks for the advice.

:)



bubba29 said:

PSC is an autoimmune disease. the immune system is attacking the liver. it is not a liver issue....it is an immune reaction to something. this is repeatedly illustrated through recurrence after transplant. the fact that conventional doctors don't recognize this and look for the root cause is RIDICULOUS!!! they just treat the symptoms....they don't attempt to fix the problem. patients need to take things into their own hands because the doctors don't care about them as much as the patient cares about themselves. google paleo autoimmune diet and good luck.

Dear Jan Escamilla,

Thank you for taking the time to read and respond to my post. I appreciate the recommendation and shall look into it straight away.

Take care for now.

Princess D's Mum

Jan Escamilla said:

I really appreciate your sharing your "Paleo Diet Approach". Their is a book by the same title written by Sarah Ballantyne, Phd - Nutrition. It is not a recipe book, but has all food possibilities. Sarah takes a scientific aproach to explaining why eating this way will help reverse autoimmune diseases. She actually mentions PSC as an autoimmune disease... Available on Amazon.com and well worth having in your resource area. This has helped me tremendously. This book was referred to me through this website...

Dear Joe V.

Thank you for taking the time to read and respond to my post. I totally agree with your stance.

Which essential oils do you use?

I have been toying with milk thistle, but as she is only 7 years old I wonder if it will be safe.

I have also heard about tumeric. Which do you use?

My daughter use to have high blood pressure too, so I am hoping that this had a positive effect on her as well.

It is good to hear an adult's opinion because my daughter can't really tell me how much better she feels. All I know is she thinks she is missing out on the every day foods her friends etc eat.

Maybe the site could look into having a "Naturopath option", but I think it is nice to share with everyone because most of the people on here are either on the same journey or know someone who is. It is just different people are at different stages. :)

Thank you for your kind words and thoughts.

Princess D's Mum



Joe V. said:

That shake is VERY similar to the one I drink every morning!

It's ludicrous that doctors would discourage diet therapy. My doctor recently said that he was very surprised at how normal my LFTs have been, given the amount of scarring in my liver (2 failed attempts at stent placement), and told me to continue whatever I was currently doing- because it obviously works! Well, upon being diagnosed, I immediately started a gluten-free, vegan diet; lots of raw fruits and veggies, fresh vegetable juices, essential oils, natural supplements (milk thistle, fat-soluble vitamins, fish oil, turmeric, plant-based proteins). I've eliminated processed food completely from my diet as well. I know PSC is progressive, but so far dieting has been very successful, and I feel healthier now than ever before. I'm finally at a healthy weight, and my blood pressure has gone from pre-hypertensive levels to normal.

I'm still brand new to the site- is there a section designated to diet therapy/ naturopathy? I'd love to get ideas or exchange some healthy recipes!

Best of luck to your little girl!

I'd say take the best from both worlds to optimize the health of your daughter. both practitioners have their place.

PrincessD said:

Dear Bubba29,

Thank you for taking the time to read and respond to my post. The Naturopath has been saying the same thing you have said from day dot, but I guess I was torn between him and the conventional doctors.

Thanks for the advice.

:)



bubba29 said:

PSC is an autoimmune disease. the immune system is attacking the liver. it is not a liver issue....it is an immune reaction to something. this is repeatedly illustrated through recurrence after transplant. the fact that conventional doctors don't recognize this and look for the root cause is RIDICULOUS!!! they just treat the symptoms....they don't attempt to fix the problem. patients need to take things into their own hands because the doctors don't care about them as much as the patient cares about themselves. google paleo autoimmune diet and good luck.

It has always amazed me that doctors might go as far as sending you to a nutritionist, but they will not pay much heed to your diet.

Whenever I eat the wrong foods, I feel like an engine that's running rough. I know how to get the "engine" to work correctly and that's through "proper" diet and exercise! That means that diet matters!

But our job isn't to convince the medical profession of anything but rather to stay healthy, however we think we need to.

When I told my Gastroenterologist I feel I've improved this last year, he dismissed one of my possible reasons pertaining to diet, claiming the liver's health goes up and down. In other words, to him, it was random. Nothing happens randomly in the body, in my opinion. If you are prone to cold sores on your mouth, you will notice, they always happen when a number of conditions converge. You may have been angry or stressed, lacked sleep, been out in the hot sun, or allowed your lips to become chafed. All of these factors are changeable. Once you get a cold sore, you will find you will not get another. Conditions have changed.

Likewise, your liver health is directly tied to many factors, many of which are changeable. Small decisions have great ramifications.

Gastroenterologist- a branch of medicine focused on the digestive system

Digestive system - a tube-type digestive system in which food enters the mouth, passes through a long tube, and exits as feces (poop) through the anus. The smooth muscle in the walls of the tube-shaped digestive organs rhythmically and efficiently moves the food through the system, where it is broken down into tiny absorbable atoms and molecules.

So those are quickly found definitions of Gastroenterologists and digestive system. Somehow, they don't put more emphasis on how much food effects the system. Ridiculous!



Lara said:

It has always amazed me that doctors might go as far as sending you to a nutritionist, but they will not pay much heed to your diet.

Whenever I eat the wrong foods, I feel like an engine that's running rough. I know how to get the "engine" to work correctly and that's through "proper" diet and exercise! That means that diet matters!

But our job isn't to convince the medical profession of anything but rather to stay healthy, however we think we need to.

When I told my Gastroenterologist I feel I've improved this last year, he dismissed one of my possible reasons pertaining to diet, claiming the liver's health goes up and down. In other words, to him, it was random. Nothing happens randomly in the body, in my opinion. If you are prone to cold sores on your mouth, you will notice, they always happen when a number of conditions converge. You may have been angry or stressed, lacked sleep, been out in the hot sun, or allowed your lips to become chafed. All of these factors are changeable. Once you get a cold sore, you will find you will not get another. Conditions have changed.

Likewise, your liver health is directly tied to many factors, many of which are changeable. Small decisions have great ramifications.

Hi! Sorry for the delay. I didn't realize I haven't responded yet. I use a few essential oils (DoTERRA)- peppermint and lemon for their anti-inflammatory properties. I add a drop of each to green tea, and drink a few times a day. Green tea is especially good for the liver/GI. I also use geranium oil topically. I apply a drop or two directly on my abdomen, over my liver, as well as on the heels of my feet. I also add a few drops to coconut oil (about 2 drops per 1/4 cup of oil) and use it as body lotion.
Turmeric is already added to the milk thistle capsules I get, but I've also bought some powdered turmeric from the spice section at the grocery store and add it to hot water. It especially helps with jaundice.


PrincessD said:

Dear Joe V.

Thank you for taking the time to read and respond to my post. I totally agree with your stance.

Which essential oils do you use?

I have been toying with milk thistle, but as she is only 7 years old I wonder if it will be safe.

I have also heard about tumeric. Which do you use?

My daughter use to have high blood pressure too, so I am hoping that this had a positive effect on her as well.

It is good to hear an adult's opinion because my daughter can't really tell me how much better she feels. All I know is she thinks she is missing out on the every day foods her friends etc eat.

Maybe the site could look into having a "Naturopath option", but I think it is nice to share with everyone because most of the people on here are either on the same journey or know someone who is. It is just different people are at different stages. :)

Thank you for your kind words and thoughts.

Princess D's Mum


Hi princess d's Mum

I also have UC and PSC. My GI guy was concerned about lactose intolerance, so that could definitely be a trigger. But he also said food doesn't effect the disease. In my experience that is not the case at all. I did however read in a brochure or on a website from the crohns and colitis foundation of canada that going gluten free is not a good idea for UC sufferers. But every site and person has their own ideas about what is right and wrong.

These are really hard diseases to deal with and i'm so sorry your daughter has to go through this. It is hard enough for an adult, but very unfair for a child.

Thanks for the smoothie recipe.

Hello;

My doctors say the same about not correlation between food and illness. But I know that when I cut down on the processed foods and eat more organic fruits and veggies and take quality supplements, I feel much better.

Hi there. Thank you so much for sharing such great news and giving hope to everyone. Would you mind if I ask for the name of the ND you see for your daughter?

Hi Joe, how are you doing with this? I started whole foods plant based before my diagnosis, just trying to figure out something to make me feel better. My numbers are high, but only in the 1 and 200s compared to 400s a few years ago, and sometimes they’re almost normal. I’ve been trying to fine tune it now to help me get more A D E K and disove it. Thanks for your post!