Trying to gain weight -- am I doing everything?

[mah]

Hi, everyone. I don't post often, but here goes: Over the past several years, I've done the losing weight during illness, regaining when feeling better thing. However, over these years, the losses have added up such that it is a struggle to keep in a range that isn't "good" but I would say is adequate. I'm an adult who's 5'7.5 and I tend to hover around 113-115, but that has been a real struggle this past year (2013, of course). I came home from the hospital (after eating several candy bars a day, supplements, etc) and my weight, which I'd been really trying to keep no lower than 108 (where it's been stuck for several months) to 104. Anything under 105 just scares me. Several months ago, had goal of gaining 1 to 2 lbs by next dr appt. I ate dozens of cookies and tons of food over the holidays (pints of ben & jerry's) and assumed that those things would give me some weight. However, I think all of the activity from doing holiday things just made everything even out, so I didn't even gain weight -- I lost it, despite this insanely hi calorie diet.

Here's what I'm doing -- and what is your advice or experiences? I am debating whether or not to call the dr. about this, though my best judgement is to eat alot for 2 weeks and then if it's still an issue, address it w/ him.

-eat tons and tons of hi calorie food. I eat more candy bars than vegetables. Not joking. Chocolate bars and ice cream have replaced the fruits & veggies category (which grosses me out on a human being level. human beings were NOT supposed to eat like this. Also, I have diabetes.)
-1 or 2 protein/supplement shakes a day. Most days, I can only do one. If I do 2, then I feel sick and don't want to eat anything else all day.
-Set a timer to eat every 2-3 hours

I was on an appetite stimulant (dronabinol) but over a few years (2?), the effects leveled out and I stopped taking it bc it didn't seem to be working any more.

Any advice?? Experiences?

Thx!

 

[Printer]

Are you taking enzymes with meals? If so which, what strength and how many?

Bill

 

[Aboveallislove]

I'm so sorry for this struggle. A few thoughts:
1) Enzymes: As printer said. I'd maybe call CF Center and find out the maximum dosing per meal and per day. My understanding is they can only handle so much fat. . . learned that here not doctors and after learning that divided son's huge dinner to a snack and a smaller dinner and that helped with all the floating stools. Literally NONE after we changed. So he was obviously eating more than the enzymes could handle, which I would think would impact weight gain. So if you can take let's say 4 a meal and a maximum of 30, then try to get 7 meals in a day so you can get the most punch.

2) Google high fat foods. They have the most punch. Sweets do it, but likely ruin your appetite. Nuts, avocados, beans. Maybe for your snacks try those instead of the sweets. Also, the body processes the fat in butter (can't remember the scientific reason but something about the chains), differently and it is better for CFers than some other fat. I love butter as does DS, so he has on burgers, fries, everything.

3) Are you on Boost plus essentials or something similar? It has 360 calories per can. It requires a script. If you aren't, then I'd suggest that. And maybe have that at the end of the meal. Always easier to force yourself to slam a big drink than anything else. And maybe even save for end of day so you can just go sleep after. And if you do wake in the middle of the night, maybe even swig one done then.

Not sure if any of this helps. Good luck
Hugs and prayers,
Love

 

[briarrose]

First, a lot of appetite stimulants need to be cycled, so you are on for a while, take a couple of weeks off to get it out of your system, go back on for a while, etc.

Then, there are ways to eat healthier without loading up on cookies. Roast vegetables in olive oil and drizzle some flavored olive oil on top before you eat it (garlic-infuses olive oil is delicious.) Eat more hummus, roasted meats, etc. Cream soups. Raw veggies with higher-fat dips. Veggies sauteed in coconut oil. Homemade granola or trail mix loaded with nuts (peanuts, almonds, cashews, macadamia nuts, walnuts), dried fruit, and coconut. Even a bowl of oatmeal in the morning with whole milk or heavy cream and dried fruit along with a bagel/toast with peanut butter and/or yogurt mixed with fresh berries. You might need more protein and healthy fats to help you gain. Plus you will feel better than when eating all the junk. Of course, check your enzyme dose if you add all of this fat.

Also, lifting weights is great for adding muscle mass, which (1) ways more than fat, and (2) naturally can increase your appetite. (Any exercise is great and should be done regularly, but they adding some weight training to it, and you will add muscle faster.

Good luck!

 

[jamest]

My problem with gaining weight was being volume limited - there's only so much food I can eat in a day. What helped me was to think of foods as being calorically dense or not. So vegetables, practically zero calories, not good for gaining. Peanut butter, oil, cream, all high calorie density for relatively little food.

I wanted something that combined fat and protein, with a bit of carbs. Carbs will help the body absorb the proteins. So I drink a pint of milk, mixed with whey protein and maltodextrin carbs (both body builder supplements, easy to find) every morning. That's helped stabilize my weight at a higher level than it's been in a long time.

Now, if you want to get really intense... add in some heavy cream, or maybe a tablespoon of oil. I prefer heavy cream, it has a ton of calories, but still tastes pretty good. Make sure to take enzymes with this.

 

[sapphirehearts]

We had a son who didn't gain weight for a year and what we did for him to help was:
Buy whole milk and split it in two containers then fill the gallon up with half and half
Snacks would be eating a PB and J with load of PB on it.
We would also buy the highest calorie Boost if we didn't have ScandiShakes but that did get expensive
We always added extra butter to his food that we had butter on.
Milkshakes were a good alternative to sodas if we went out to eat
I feel like the main things that worked well was the sandwiches and the milk. Those added so many more calories a day to his food intake.

Good Luck

 

[LittleLab4CF]

Between attempting to optimize my digestive health and knowing several people wishing or needing to put on some meat, I’ve been somewhat over-involved in the issue. When I increased my enzymes three years back, my peanut butter feces began to resemble a healthy stool and my weight went up for a while.

An abdominal flare sent me into a weight dropping spiral. Other times this has happened I add proteins, fats, and legumes or beans with other carbohydrates to maintain my weight. My weight began to drop after my enzyme success, then I added the protein, fat and carbohydrates, enzymes were increased in proportion, and I gained weight back. Your stools should be semi-normal to say you’re nearing complete digestion.

You have seen your doctor and she/he checked for metabolic reasons pertaining to your weight loss? This may be a heightened state from a chronic infection that is demanding energy from the body to fight or diabetes or any and all imbalance in the endocrine glands and organs, potentially altering the body’s metabolic rate. So you could be starving, maldigestion/malabsorption or your metabolism is high, demanding unusual amounts of energy, or both. Stress alone can ignite a metabolic increase and stress is common?

Weight gain from an “eat food” perspective probably can work because something is demanding more energy than it is getting and with the above issues managed, hopefully, weight gain or loss comes down to types and proportions of proteins, fats and carbs, or carbohydrates, you add to your diet.

I recently purchased “Men’s Health Training Guide 2014” and there is a “Women’s Health Training Guide 2014”. Both are supplementary publications to their magazines “Women’s Health, Men’s Health” in order to distinguish similarly titled health guides. I chose this guide over others for several reasons, one being it can be found in the magazine section at most American grocery stores, like Safeway, so anyone can inspect its contents. I have annual fitness guides going back five decades so I don’t really need another one. My purchase was to inspect a Guide and determine if it contains helpful and reasonably unbiased high quality information that is easily understood by a young CFer or such. It is an excellent guide from my ten minute scan.

The Guide is divided into various areas including diets for weight gain or loss. In this they explain what proportions of fat, protein and carbohydrates put meat on a person and what proportions tend to strip fat or put on a little reserve. They explain how supplements like whey protein powder or Muscle Milk work and should be used, to made from scratch recipes from concentrates of whey, soy, brewer’s yeast and such, combined with special fast and slow acting carbohydrates, and of course fat which could be dried egg yolk to flax seed oils. They also devote a good portion on how to do all this with healthy foods, like on a plate instead of a blender.

Or…. Go to the grocery store and purchase Boost or a similar weight gaining drink. I keep discussing Boost only because in attempting to keep my neighbor from wasting away, I chose Boost and my neighbor likes the drink. Boost’s High Fat, High Calorie ( 14g, 360 calorie) drink has an ideal ratio of food types to maximize growth in muscle mass. If she could gain weight with food, this should work, and it has. I call it “meat” because the primary weight gain is in muscle mass, then fat reserves and so forth making it healthy and hopefully permanent weight gain.

My neighbor’s frightening thin frame is almost what you describe you have and she has been looked at for a solid year with no sense of why she is wasting away. Since her weight loss was continuing, I thought of the simplest test I could to see if she could gain weight with a pile of calories.

Armed with research into how to turn young CFers into Olympic weight lifters, Boost was a fast and easy test. I suggest you decide if you like Chocolate or Very Vanilla and drink a minimum of two 360 calorie bottles daily. Keep your regular diet and always take enzymes with the Boost or whatever and you will gain two or three pounds by the end of two weeks. That isn’t a guarantee but if you CAN gain weight, the addition of 2-4 Boost/day or equivalent will work. Similar products exist for diabetics so that isn’t a show stopper.

Keep a diary of your food intake, medical vitals including weight right before showering or such where a cell phone or sneakers are a variable. Measuring temperature, blood sugar and taking BP and pulse/ox may become important data if a diagnosis isn’t forthcoming. If you already have these home devices, it may cut down on the diagnostic journey.

Weight loss is serious business, eating a weight gaining diet or supplementary diet should help retain/gain back weight and could point toward the reason for the change, Good Luck,

LL

 

[marc0198]

Ignore everything posted thus far. If you're struggling to gain weight it's probably because you're trying to put on fat. If you're like me, that's never going to happen. I went from 130lbs to 160lbs in one year. If you want specifics about what I did, message me. There are two things you need to do:
1. If you don't eat much because you don't have an appetite, quit trying to eat a lot. There are a lot of inexpensive options to turn your meals into mostly drinking affairs. That's how I got my caloric intake to about 4,500 when I gained my weight.
2. If you're healthy enough, you need to get in the gym. You're not going to put on fat, but you can put on muscle. You need to get on a bulk training program. That's how I got started. You don't need a personal trainer to set up a program, but if you've never lifted you do need one to show you how to complete exercises the right way, which they can do in about 2-3 sessions if you're assertive.

I'm serious when I say ignore the other tips. I had a g-tube when I was younger. I gained 13 lbs in two years. It wasn't worth the hastle, the time, or the uncountable conversations about why that plastic thing was sticking out of my stomach (unless you have no option, which you do not sound like). Doing what I described above worked for me after about 15 years of failure. Message me or look me up on facebook for some help it you want it.

Here is a link to my Facebook account:

https://www.facebook.com/openended

 

[randomgirl]

Hey marc0198...I'm really curious as to how you gained so much weight so quickly. I don't have an appetite much so I usually eat 2 times a day and an ensure for breakfast. My muscles are crazy weak so I can't imagine myself doing a bulk training program. But I really want to gain weight. Right now, I'm 95 lbs at 5'2''. My doctors want me to be like 110 lbs...psh. So what's your secret?

 

[Melissa75]

Full-fat PLAIN yogurt gives you tons of fat and protein without the sugar of ice cream, and with lots of probiotics. Greek yogurt is very fashionable, so I buy the organic Non-Greek for half the price. Put slices of banana in it and nutty/seedy granola too. Not an amazing suggestion, I know, but it's my favorite quick and healthy high calorie snack. I think the banana helps it stay in me longer too, since that's a food you give kids when they have diarrhea.

 

[briarrose]

Marc - I suggested adding weight-lifting to add muscle mass (above), so don't ignore all the advice.

 

[marc0198]

Randomgirl,

The easiest way to get details is to direct message me on Facebook. My Facebook URL is www.facebook.com/openended

The short version---Treat yourself like you're a bodybuilder, knowing you will never have to worry about the bodybuilding physique. If you're struggling to gain weight and have already tried eating a lot, you've been failing at adding fat, something people like us are designed to fail at. Fortunately, CF does not inhibit muscle growth. If you have CFRD or any other conditions, I would keep in mind that you'll need to consult your doctor about management, but I ditched trying to eat a lot of meals when I wasn't hungry. I picked a handful of drinks that I could make high calorie, combined those with other drinks that were nutritionally dense, and combined that with targeted weight training. You still need a high calorie diet, but high calorie does not need to be unhealthy, which a huge amount of CF diet advice moves us towards. I made drinkable meals because even if I wasn't hungry, anyone can learn to drink a couple glasses of milk-based product.

Some of drinks I repeated for calories were:

Instant Breakfast, mixed with half and half or when I reached my target weight, mixed with whole milk
Chai Tea--mixed with half and half, or whole milk when my target weight was achieved
Boost--disgusting, but it takes three seconds to chug

Drinks for nutritional density--
Blending fruits and vegetables w/a small amount of juice
Isagenix meal replacement---by far the best part of my day nutritionally


There's a lot more that went into my plan, and I'm willing to share with anyone interested. If anyone wants to know more about what I used and did, let me know. Facebook is the best place to reach me.

www.facebook.com/openended

 

[BrigitsMom]

Hi, mah, We all have our own experiences where food is concerned, and what works for one person can not necessarily be expected to work for another person. So, take all of these comments with a grain of salt (pun intended - be sure to consume lots of salt every day!) and come up with your own plan. However, there are some basics that you may want to consider. First, you may want to seriously consider moving away from getting your calories from ice cream and candy bars. Not all calories are created equally, and many of these products contain ingredients that are working very much against your health. Second, consider when and how you eat. If you wolf down your food with no thought, it will simply not provide you with the nutrition it could if you slow down and focus on eating while you eat. Digestion begins in the mouth, so let your food spend some time there. Third, have you heard of the sumo-wrestler diet? It's what I am working to avoid, and will be transitioning my CF daughter to do more of. Sumo wrestlers, so they say, don't eat breakfast, and actually don't eat much throughout the day, but they have huge meals for dinner and late at night before bed. I am not saying you should skip breakfast, but I am suggesting that you try to eat as much as you can later in the evening, and not worry so much about bigger meals earlier. There are so many theories out there, though. Finally, while not all calories are created equally, so too not all fats are created equally. Optimize your fat consumption by increasing healthy saturated fats - butter and coconut oil (preferably unrefined cold-pressed), and also using cold-pressed unrefined olive oil and sesame oil, but do your best to avoid typical vegetable oils like corn, canola and soy. There is no doubt that this will affect your pocketbook, but so be it. Less of the good stuff is so much better for you than more of that bad stuff. Oh, and on the issue of stimulating your appetite, have you heard of the benefits of zinc? For a while there my daughter had to take liquid zinc with her applesauce and enzymes. Zinc helps increase your appetite, and helps you to better digest the food you do consume. Amaranth is a good food source of zinc, and makes a good hot breakfast 'grain' of sorts, kind of like grits but with better protein and fat. Quinoa is another good grain to add to your diet. I would be more than happy to share more tips with you if you'd like. I'm starting school in a few days to become a certified nutritionist, so I'll be wanting people to work with as guinea pig clients - feel free to message me if you want to go on that journey with me. And good luck with your weight gain. My daughter was in the failure to thrive category for quite a long time, and I refused the g-tube and many other medical interventions and she is now up around the 50th % for age (she's 6 now). I'd call that success.

 

[mah]

Thank you for all of the suggestions. I will be trying several of them -- and am always open to more. The exercise is an issue for me, as I'm on full time high flow 02 -- so if anyone has anything additional to add re: weight gain w/ advanced disease, that'd be great.
My best to everyone who answered,
Melissa

 

[Shelly43]

Hello,

I've fought this issue with my 15 year old Cf son. I have begged him to eat for years. He hates the flavor of scadi shakes and boost and evey other thing we have tried ( they taste like vitamins). So a while ago our doctor suggested we try taking Periactin it is a allergy pill with a weird side effect? It makes some people hungry? So He takes 2mg 3 times a day with meals and on and off every 28 days, I switch it when I switch back and forth from his Tobi. Easy to remember that way.

So now he begs me to cook instead of me begging him to eat more and he is gaining. No surprise when he is feeling like a bottomless pit. I fix what he loves but not just junk food. I bought a small freezer ice cream maker and make him homemade ice cream using all half and half cream in the recipe and he can have any flavor he wants ( I added candy and fruit and caramel sauce what ever hits his fancy). Less chemicals and it's not a big gallon he gets tired of after two bowls. He also loves a quick and easy microwave loaded baked potato (natural butter and sour cream, cheddar cheese and even bacon crumbled on top) high cal and carbs. I found pumpkin and pecan pie pack in tons of calories and it seems better for him then say gummy worms and chocolate bars. And fries or even chilly cheese fries are a good quick snack. When eating high fatty foods like say fried chicken? I just add and extra enzyme pill, that seems to do the trick. But the smaller more frequent meals sounds like something to try, but maybe more this summer? In school it's hard to get done. I have to say having a blend of enzymes also helps him digest better, something to try if your not already doing it?

Hope this helps good luck!

 

[nhaggard07]

I have diabetes as well. I struggled with weight all through my school years. Finally I decided to ask the dr if I could have a gtube about a year ago and had one placed. Best decision ever. I am self conscience of it, but not as self conscience as I used to be for looking like a twig. Without the gtube my weight was always around 125-135. Im 5'9 male. About two and a half months ago I was very sick with infection and my weight was down to 133lb. So I started abusing the feeding pump LOL. As of my appointment yesterday I'm back to 157. Im the type of person who just never wants to eat. Ive never really had an appetite. Its a beautiful thing to be able to pour some cans into a bag and sit back and watch tv while I get some nourishment. I love my gtube. If I want to maintain my weight I run 5 cans in my feeding tube over night while I sleep. If I want to gain weight, I run an additional 3-4 cans midday which only takes two hours. I really wish I would have gotten a gtube in my school years. I don't know about the rest of you, but when my weight is up I feel a lot healthier. My advice to any CFers having trouble gaining or maintaining weight is to give a gtube a chance. If it doesn't work for you, or you decide for whatever reason you don't want it, they can take it out just as easily as they put it in. Theres another option called an ngtube, where every night you slide a small catheter up your nose and down your throat. If functions the same as a gtube. Its more of a hassle than a gtube in my opinion, but if your self conscience and wouldn't want to have a gtube you could take this route. My dr talked me out of it because of the hassle of having to shove a tube up your nose every night, and im glad he did. But the most important thing for all of us is to stay healthy, and being at a healthy weight is important. Good luck with whatever you decide to try and I hope it works for you.

 

[nhaggard07]

I was on Periactin as well. It worked ok for me. Now I take this liquid called Megestrol. Now this stuff works really well for me.

 

[scarecrow]

I have had problems w/ appetite since about the age of 30. I used to eat like food was going out of style but it seems like as my lung function went down so did my appetite. I tried the anti-histamine route but it made me like a zombie.
I have found that exercise definitely helps w/ weight gain. Not just w/ appetite but it seems like eating does more good if you are getting regular exercise too. All I do is to walk for 1/2 an hour several times a week. But that is enough to make a definite difference in almost every aspect of health.
What I have discovered lately though may help you more.I have been taking PharmaNAC to increase my glutathione levels. It seems to me that one of the unexpected side effects is an increase in appetite. It may be just me but it is definitely not a placebo effect because it was totally unexpected. It does seem to come and go but there will be days when I am close to starving all day long. Don't know if it will increase your appetite but there are definitely other effects that will make your struggle a little easier.

 

[Twistofchaos]

What I have discovered lately though may help you more.I have been taking PharmaNAC to increase my glutathione levels. It seems to me that one of the unexpected side effects is an increase in appetite. It may be just me but it is definitely not a placebo effect because it was totally unexpected. It does seem to come and go but there will be days when I am close to starving all day long. Don't know if it will increase your appetite but there are definitely other effects that will make your struggle a little easier.

Can confirm. Me and my sister (also CF and 2 years older) are both using supplemental NAC roughly since early october and report rather good results.
As far as weightgain, I'm fanatical about lifting weights and have made sudden and rather significant gains in strength in these months. More than I could usually expect to get even though it's winter which is a good season for me.
But so ofcourse I've gained weight/muscles and am heavier than I've ever been. (66kg) I suspect one of the effects of NAC is that it helps thin down mucus in the digestion tract ofcourse improving absorption.

Appetite I rarely have but I don't care much about that, I see food purely as fuel and know how much I'm supposed to eat on any given day and then just <insert powerful term> eat it. It's a shame to let the effort of exercise go to waste and so that's a big extra motivation to eat. Also when I was younger I never fully realised the direct connection between food, being sick and the body's ability to recover. As in the body having an energy surplus to fix things or a shortage. The difference is huge.

 

[LittleLab4CF]

Marc098, and CFers wishing to acquire of maintain quality muscles.

Who could disagree with such a convincing argument? Sorry but I don’t Facebook, my hope is you have a well tempered and scientifically based body building methods to impart. A number of body building health enthusiasts have posted before and I always encourage them to share their methods and successes.

For true high density muscle mass, neither food nor exercise alone works, it takes a commitment to both and at that, good body tone is about all most can show off. But the feeling is great! I followed my older (non CF) brother through “Charles Atlas” body building course beginning in 1959. Atlas was a pioneer in engineering foods and body building routines that were natural and healthy. The actor Sean Connery was an Atlas student, and Mr. World, the highest body building honor at the time.

Compared to 1959, the world of body building has refined and tuned into the facts of strengthening muscle tone or pumping a particular muscle’s bulk for personal esthetics. Now the science of nutrition and body building is well understood and with a good program, a lot can be accomplished even for CF.

Established CF body builders, have an audience of young and older CFers wanting to bulk up, or some equivalent in good muscle tone. I encourage you to link up with other CF health enthusiasts and offer help to those wishing to pump some iron, or such. Body builders know the hardest thing is to start and most have had some encouragement by others. The next most difficult problem is sticking to it. Again, this could be a source of help by those who have toughed through those discouraging moments.

I stand by the advice in my first post. My interpretation of the issue was a more urgent need to maintain or gain muscle mass. Our bodies are in constant overdrive compared to non CFers. Elevated levels of cortisol, a primary stress hormone released when pain, inflammation, infection and such challenge our systems. It isn’t just malabsorption that makes us thin we burn calories wholesale just standing still.

When cortisol, adrenaline and such are flooding our bodies, our immunity goes into a high metabolic state, drawing upon the energy stores of the body without mercy. Our bones and muscles are stripped of nutrients to feed the battles our body is fighting if there aren’t adequate reserves in flesh, fat and just like the red meat we eat, muscles are a rich source of protein, including our own. With inadequate calories in food the idea of weight gain is moot, you must have more calories than you use.

Instant Breakfast, or as they renamed it “Breakfast Essentials” with half and half is my favorite calorie concentrate too. Even with whole milk I find myself in a flavor argument, it seems some don’t like Breakfast Essentials and some, like me, gag on Boost or Ensure. But you make a good point in calorie concentration. I’ve had 20oz protein shakes of my own recipe that deliver 4200 Calories.

We almost casually deal with bodies that are very close to a weight losing cascade. “Failure to thrive” oddly enough was related to anorexia the first I heard the term. In anorexia, the body can reach a point where it believes it is actually starving and consumes the bones and muscles of the patient in an irreversible cascade that results in death. All the food in the world can’t reverse it.

So, marc, again, I yield to your superior means of putting on some muscle. For those who wonder what Marc is doing, you might look at the “Men’s/Women’s Health Training Guide 2014. You will find half of the book devoted to exercise including lots on body building.

LL