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Are these ok for PBCers?

Ktltel profile image
Ktltel
โ€ข49 Replies

Hello ๐Ÿ™‹,

I'm totally struggling with my diet (as always ๐Ÿ˜”) I'm wanting to exchange a couple of meals a day with Atkins protein shakes. I'm "not" going on the Atkins diet or anything, I plan to incorporate fruit and complex carbohydrates in one meal a day and for a snack etc. But, I was just wondering what you all thought or have heard about these shakes.

Also, I got approval for Ocaliva. Not sure the cost for me yet, but it's a green light from my insurance Co. I haven't picked up the prescription yet. I'm nervous about starting it and I'm going to do some research on here to read how others are getting on. I know a couple of you who are doing well on it have encouraged me. Thank you. โค

Right now though, I've got to get some weight off. Let me know your thoughts/experiences with Atkins shakes.

Thank you,

Stellaโค

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Ktltel profile image
Ktltel
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Hils67 profile image
Hils67

Not sure about that shake, but I take a protein shake for breakfast...not for weight control but instead of carbohydrate rich breakfast cereal. I find when I have my protein shake in the morning it fills me up and I donโ€™t get bloated like I do with carb rich stuff. Iโ€™m sure I read somewhere that the liver likes protein...so I figured it would be ok. I canโ€™t be certain though as I canโ€™t remember where I read up about it. All I know is that I did research it before having protein shakes for brekkie!!

Hope this helps ๐Ÿ˜€๐Ÿ™ xx

Ktltel profile image
Ktltel in reply to Hils67

Thank you. ๐Ÿ‘

gwillistexas profile image
gwillistexas in reply to Hils67

Hils67...Iโ€™m glad to see you also take in protein. My hep told me to drink it so Iโ€™m having one a day. ๐Ÿ˜Š

Hils67 profile image
Hils67 in reply to gwillistexas

I take it with kefir. I make my own milk kefir, combine that with a scoop of protein and some frozen berries, whizz up in my blender and thatโ€™s brekkie๐Ÿ˜ƒ.

Kefir is supposed to be good for gut health, so I like to take it for general health.

Hilary xx

DonnaBoll profile image
DonnaBollAdministrator in reply to Hils67

Protein definitely makes us feel 'more full' too - hopefully resulting in less snacking. Making good choices can be challenging but take one day at a time.. even one meal at a time. Plan ahead and try to have healthy foods on hand. I find when I don't, then I find those chips!

ninjagirlwebb profile image
ninjagirlwebb

Great news on the green light for Ocaliva! I donโ€™t have any experience with these shakes. Hopefully someone will chime in for you.

Ktltel profile image
Ktltel in reply to ninjagirlwebb

Why am I nervous๐Ÿ™€??? Thanks for your positivity. โค I plan on starting it right after my next labs which is next Friday. Getting a new baseline with all my levels. Besides the regular labs, anything else I should have them run for a baseline before starting Ocaliva?

ninjagirlwebb profile image
ninjagirlwebb in reply to Ktltel

It is human nature to be nervous about new meds. When my endo put me on antithyroid meds, I was concerned as well so I ran it by the hepatologist too. I know...I can get a little obsessed.

Did you have a comprehensive physical last year? You can probably also use the labs/test results as a base line as reference. No need to re-test. Some of the labs on mine not in my regular labs include: B12, folate, ferritin, iron & iron binding cap, hep B immunity, hep C AB with Reflex HCV, hemogoblin A1C,

CT/NG RNA,TMA,UROGENITAL (no clue what this is), and all the thyroid in depth thyroid tests since I have thyroid issues.

I sincerely hope Ocaliva will bring your liver labs etc back to normal. ๐Ÿค— This way you can feel more carefree.

Keep on advocating for yourself!

Haley

Ktltel profile image
Ktltel in reply to ninjagirlwebb

Gwillistexas,

You are so kind. โค Thank you so much for that information and for taking the time to reply. I will bring it with me to my doctor. Thanks for the encouragement too. I sure appreciate it.

Stellaโค

gwillistexas profile image
gwillistexas in reply to Ktltel

โ˜บ๏ธ youโ€™re welcome.

DonnaBoll profile image
DonnaBollAdministrator in reply to ninjagirlwebb

I have a complete blood count (CBC), comprehensive metabolic profile (CMP), and liver panel drawn each time. Standard of Care is to have blood work every 3-6 months. In the beginning, I think too, that we should all have our vitamin levels checked as well our as thyroid just for baselines.

SunnyXXOO profile image
SunnyXXOO

Donโ€™t forget nutrition is key here. Iโ€™m not sure how I feel about substituting a nutritious meal for Atkins. Another thing with Atkins, you regain ++ your wt back. Some people love Atkins, I personally donโ€™t like Atkins, you need Carbs for Brain power.

Have you looked into the Palo or Mediterranean diet? Great diets.

Iโ€™m drinking Vinilla Orgain Organic Nutrition, make a great shake!!

SunnyXXOO

Ktltel profile image
Ktltel in reply to SunnyXXOO

Thank you SunnyXXOO,

So true. And yes I've heard of those diets. Just trying to jump start weight loss and try knocking off some pounds fast at first. You are so right about being careful not to gain it right back with fad dieting. ๐Ÿ‘

DonnaBoll profile image
DonnaBollAdministrator in reply to Ktltel

I know from my own experience how hard it is to wait for those first several pounds to come off - that 'jumpstart' you mentioned. Be patient.. I struggle with this too. Just plan what you want to eat and have healthy foods on hands. Taking one meal at a time - We likely didn't gain it overnight and it's not coming off that way either. Disappointing as this is, it's reality. Eat healthy and exercise to any degree you can physically. Movement is medicine.. good words to remember. Best of luck!

HealthyChik profile image
HealthyChik

Great news about the Ocaliva! I just wanted to chime in about the shakes... I understand that you are not doing the "Atkins Diet", but please remember that the Atkins diet is traditionally high protein, low carb and HIGH FAT and is designed to put your body into ketosis. So the shakes go along with the diet plan and contain about 9 grams of fat per serving which is a whopping 54% of the calories. If ketosis is not your goal, I'd personally choose another product simply because the fat causes our liver to work harder to metabolize it.๐Ÿ˜Š Best of luck. I know weight loss is tough๐Ÿ’•

Ktltel profile image
Ktltel in reply to HealthyChik

Oops๐Ÿ˜ณ๐Ÿ˜ฑ,

You are right!! I'd forgotten that. They are just so easy to grab and go. Darn!! I definitely need to watch the fat intake. Tricky... Gotta watch fats AND protein.... (and salt, and carbs) ๐Ÿ˜ฉ. I'm just gonna have to do this the old fashioned way...... Low n slow AND exercise.๐Ÿ™ƒ

Thanks HealthyChik โค

DonnaBoll profile image
DonnaBollAdministrator in reply to HealthyChik

You are right that ketosis is not always a healthy state to maintain. It can be very hard on your kidneys. Eating healthy and making good choices is key. Movement is crucial... any type of time you can just move makes such a difference. Exercise, in any form, can help with the fatigue as well. Hard to believe but it's true.

kimphoebe profile image
kimphoebe

Hi there.

Think you need to be careful with amount of protein you intake because to much can put on weight unless you are exercising to get rid of it. The reason I say this is my son who as Asperger syndrome had issue with to much protein shakes and put on ridicules amount of weight. On advice from doc who explained the cause of his weight gain, but I would get expert advice on this if I were you. Hope this helps.

Ktltel profile image
Ktltel in reply to kimphoebe

Thank you. Cause I'm definitely not moving enough right now. Vicious cycle. Back to my plant based protein smoothies. ๐Ÿ‘

Thank you very much. How are you doing?

cazer profile image
cazer in reply to Ktltel

hi kittel, how about a high protein yogurt... i was told to have these after transplant... as you are right about the high protein being good for healing....

but they are also low fat... which is perhaps more helpful. xcazer

kimphoebe profile image
kimphoebe in reply to Ktltel

I just had my 3 month checkup lab wise everything perfect. Fatigue wise terrible, did speak to hep bout this and he said there is nothing they can but will be starting clinical trials in the near future for fatigue so let's hope. Hope you are doing well.

DonnaBoll profile image
DonnaBollAdministrator in reply to kimphoebe

So glad your labs are good! If you can exercise in any way, that can often help the fatigue believe it or not. Start slow.. do what you can. Maybe march in place or just walk for 10 minutes. Make realistic goals - this is important. If you live in the states, some people find relief from the fatigue by taking Provogil.

gwillistexas profile image
gwillistexas

I wish you the very best results with OCA & pray youโ€™re fortunate & have zero side effects. Be sure & keep us posted. ๐Ÿ˜Š๐Ÿฆ‹

Good news about the Ocaliva green light! This may be of use to you. When starting a drug I was nervous about but had decided to give it a go, I planned to start it on a day when I would be relatively free of any other pressure. The very day before that day, I had the first migraine I had ever remembered having. I was glad that happened because if the headache was the day after I started (HRT) I would have been convinced that the drug was the cause. I'd have stopped taking it and no one could have persuaded me otherwise whereas I started the drug on the planned day and it improved the quality of my life so much. Very good wishes with starting Ocaliva, relax and enjoy it and please keep us informed.

butterflyEi profile image
butterflyEi

I have never been keen on quick fix diets, I was born in the 50s always tubby from teenage years onwards, lived through the era of Twiggy and the desire for all women to have male like bodies on the cat walk. (Whoops I think I am letting my biases show :-).) When I was diagnosed with PBC I went from a UK size 14 up to an 18 to 20. And along came my 65th birthday and I decided that it was time to take off some of those pounds, aided by my husband needing to change his diet after a diagnosis of prostate cancer. Slowly I lost 20 kilos (around 45lbs) We moved away from carbs such as bread, potato and pasta. Cut out all sugars - no biscuits, cakes or drinks such as cola or lemonade. None or little salt and avoided fats as much as possible. Drank a lot more water, had salads in the summer and home made soups in the winter. Discovered quinoa and nut roast. Cut out red meat but ate more fish and chicken. Now I am back to a size 14, carbs have been reintroduced but nowhere near what we were eating before. I believe that I now have a well balanced diets rich in vegetables low in salt and fat. I do eat cheese again now. Throughout all the years of fad diets the one constant has always been that you need a diet that will change your eating habits for life, I am not suggesting that I have the perfect diet as I now cheat but often feel unwell when I do cheat but every now and then I do love the lemon drizzle cake that I make or those buttery short biscuits. Oh and I mustn't forget exercise which became easier as I lost the weight. Now when it is dreary, wet or just to cold I miss the daily walk but try to get on the static bike instead.

As to the Ocaliva, we are so lucky to have an alternative treatment and I truly hope that it works symptom free for you Stella.

best wishes

in reply to butterflyEi

I love you getting on your static bike! I've had a few of those bikes but never put many miles on the clock!! What I have now is some click-together mats on the floor big enough that when I need to stretch and move, but feel that I cant, I lay down on the floor with a cushion, usually fall asleep there for a while, then when I wake, or after I have relaxed my whole body, I start to sprawl around easily on the fairly slidey mat. I never time this. The stretching and flexing make me feel well again and I find that I can get up and do far more moving and my head is very clear. I leave the mats down. I started this plan when I was too tired even to get my yoga mat out of its bag but the mat alone wouldn't be as good for sprawling -it needs more space.

About the protein shakes, I haven't taken them. I have had weight struggles for 62 years! And been a yo-yo weight loser for about thirty of those. The last diet I tried was Atkins. HealthyChik and kimpheobe are saying what I would say about it. I now eat as best as I can and still have BMI of 25 so could lose 14 lbs and arguably be more comfortable. I decided to try the Lose-it App (Free of Charge) to see what it may do for me. Only been doing it a week not changing a single thing from my recent diet, quantities or varieties. (It would be boring entering the details of all you eat IF you didn't have the motivation to take care of your diet but where you have a clear purpose, it's no bother.) What has been helpful to me is to see the running totals of nutrients broken down into percentages of what I have eaten, (rather than reminders of reccomended daily allowances). There's lots of positives about it. For me, it changes my relationship (satisfies the emotional aspect?) to food just enough to improve what and how much I eat. It's not my aim to lose weight, and I guess it isn't yours, but my aim is just to be healthier. And if that makes me thinner, hey? No problem! Best wishes with all you are doing just now.

Biddyb profile image
Biddyb

Like you I struggle with my weight but I am now giving a Liver Cleanse diet a go, hopefully it will help me take off the extra pounds I put on over Christmas and New Year, my fault I know not eating sensibly and taking more alcohol than I should also celebrating my 70th birthday added to the problem. I mainly started this new regime (don't like to call it a diet really) as my ALT has risen and I know it's due to my celebrations, it will be interesting to see if my ALT has improved and my weight has gone down too. Smaller portions plenty of green veg and fruit, beetroot juice,Walnuts, grains etc and step up my exercise (which I hate) but time will tell. Good news and luck with the new drug hope it works for you.

mrspeffer profile image
mrspeffer

Good Morning...I just looked up the ingredients and nutrition information on the Atkins drinks....seems like a high quality protein powder might be better for you. I have tried many over the years. I'm really picky about taste and texture. After several $$$ on what were suppose to be the bomb protein powders, i discovered one that is perfect for me, and affordable. The name of it is LEVELS Vanilla Bean 100% grass fed whey, UNDENATURED. That part is important as to how it is digested. Pop a scoop into the blender with some almond milk and a frozen banana, whirl away, and bingo...thick, creamy, good for you protein. Found it on Amazon. Be well

Ktltel profile image
Ktltel in reply to mrspeffer

Oops, I responded to your post below. โค

SunnyXXOO profile image
SunnyXXOO

Theses are great foods to add to your list healthy eat to heal liver:

11 foods for damaged liver

Coffee. Coffee is one of the best beverages you can drink to promote liver health. ...

Tea. Tea is widely considered to be beneficial for health, but evidence has shown that it may have particular benefits for the liver. ...

Grapefruit. ...

Blueberries and Cranberries. ...

Grapes. ...

Prickly Pear. ...

Beetroot Juice. ...

Cruciferous Vegetables.

Ktltel profile image
Ktltel in reply to SunnyXXOO

Thank you,

I need to put those lists on my fridge. I have run some off too. The bad for liver ones too.

๐Ÿ‘

in reply to SunnyXXOO

I was told not to eat grapefruit while taking URSO...

Ktltel profile image
Ktltel in reply to

I don't know about that. Hope others chime in. You can call a pharmacist too. They should know about grapefruit.

ninjagirlwebb profile image
ninjagirlwebb in reply to Ktltel

Grapefruit interferes with lots of medications, including statins, rendering it unsafe to eat. Not sure about urso though.

ninjagirlwebb profile image
ninjagirlwebb in reply to ninjagirlwebb

You can probably find the info on the drug notes that come with the urso prescription.

in reply to Ktltel

I took his advice. It was 8+ years ago, my mum at this time was not allowed grapefruit because she was on statins, so I didn't question it and didn't miss eating it. We are lucky to have so much food to choose from?

Ktltel profile image
Ktltel

Mrspeffer,

Yes๐Ÿ˜Š. Thank you. That's part of my problem. For 2 years I've been on Garden of Life plant based protein powder. It's $36 for 20 servings. Vanilla flavor as well. I've also tried Vega One. Vega One is $65 for their large container of 21 servings Vanilla flavor. I have to confess, because of Vega One's price, I purchase the Garden of Life the most. Right now I am burnt out on the flavor. PLUS... I love to cook and have just got too lax with my diet.

But, now I'm starting Ocaliva soon and just want to get back on track. I'm more motivated if I can drop a few pounds fast without thinking to much about it. The grab and go convenience of the ready made shakes helps. But, I forgot to analyze ingredients closely on those Atkins shakes. In my healthy years (no PBC years) I lost weight FAST on Atkins. It was a jump start to eating better. I never actually stayed on the Atkins program but I transitioned to eating better and continued the weight loss. Now, I need to look more carefully at how I go about smoothies and ready made shakes. ๐Ÿ‘

I will check out "Levels" on Amazon!

Thank you!

Stellaโค

4pjx__ profile image
4pjx__

A lot of us are fighting the weight problem. I personally have noticed that after 18 months on Urso I really feel like eating a lot. I had lost 15 lbs before I started it. It's slowly creeping back on. I hope you can find an eating plan you can live with.

Good luck with the Ocaliva! Don't forget to keep us posted on how that's going for you.

Pam

Ktltel profile image
Ktltel in reply to 4pjx__

Thank you! I'm my own problem. I just felt "normal" plus love to cook and make goodies. AND, my hepatologist wants me to be less sedentary. So, I'm working on it all.

Oh yes, I'll definitely be posting how I respond to Ocaliva. ๐Ÿ‘Œ๐Ÿ‘

danaLL profile image
danaLL

I am going through the same process of trying to get my diet better and lose weight. To jump start I decided to do a sono Bello treatment. Itโ€™s body contouring. It really did help to jumpstart. I lost 10 pounds and then working with a nutritionist drinking teaโ€™s juices and Whole Foods, Lost another 10 pounds in three weeks, most of it in the first week. My guess is the problem with the Atkins shake is that it has ingredients that will be bad for you, in particular sugar. I have looked at many of those types of things and I am always told the best thing to do is eat natural. I have been able to lose all this weight even while being on steroids as I was just diagnosed with autoimmune hepatitis as well. I think another thing that is helped me is an app called the IF tracker. It helps you pick the best foods to avoid putting inflammatory foods in your body. Someone also turned me onto Danielle walker, who has some New York Times best-selling cookbooks on the market. She was able to basically heal her autoimmune disorders through nutrition. Not the same as PBC, but her story is pretty inspiring and Iโ€™m sure has some relevancy . Anyways best of luck, itโ€™s really hard and you just need to do what works for you. I am sure losing weight would be more beneficial than any damage that shakes could do to you. Iโ€™ve also always been told the lesser of the evils is the best way to go .

Ktltel profile image
Ktltel

That is AWESOME you lost weight even while taking steroids. ๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘

Thank you for those great tips. โค

sharilaine profile image
sharilaine

I wouldn't use any product without consulting a qualified doctor. Some supplements are metabolised through the liver and can accumulate becoming toxic. Any damage caused by toxicity can be permanent. Even off the shelf vitamins can cause detrement. Unless they are reccommended specifically by your liver doctor then don't take tgem. X

Sachin1234 profile image
Sachin1234

eat whatever you want in moderation I promise you will be all right..

Ktltel profile image
Ktltel

Thanks for your input. Hope you're doing well.

Stella

Sachin1234 profile image
Sachin1234 in reply to Ktltel

Iโ€™m not doing well I had to do stat biopsy last Friday due to extremely high ana and ama..tho I will be all right once they figure out I believe Iโ€™m in good hands๐Ÿ˜.. urso is the key to content pbc not food.. healthy food is good for our overall health that includes pbc thatโ€™s it.. my enzymes went up when I was eating just veggies and lean meat so can anyone explain why but I feel great and energetic beside my liver enzymes.. my new dr still says I can eat what ever I want except moderation in alcohol and fatty food

Ktltel profile image
Ktltel in reply to Sachin1234

Sachin1234,

I'm sorry to hear it. Keep us posted please. I too believe moderation is key, but with liver issues, and especially when we're in a flare of sorts, please Sachin1234, just say no to alcohol and anything else that can exacerbate liver troubles. Take care๐Ÿ™‹.

Stella

Sachin1234 profile image
Sachin1234 in reply to Ktltel

You have to understand by yourself what causes to flare up and how it flares up..was it really a flare up or just steady progression from the beginning ?

People think early diagnosis is better I thought same when I was diagnosed but now I doubt that analogy..I think people who diagnosed early age like me progress faster then who are diagnosed after 50.. I will not try to upset or scare myself with any outcome of my biopsy results that is what I promised myself!

Hope oclivia is working for you๐Ÿค—

DonnaBoll profile image
DonnaBollAdministrator

I think it's ok as an occasional meal replacement or snack but continue to just eat healthy foods. I am convinced that even with eating well, we have to continue to 'move. Any exercise at all will make a difference. Maybe ask your doctor to have you talk with a dietitian. Many find a structured program like WW helpful. Just don't feel deprived. This will only result in bad outcomes for any one.

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