January 21, 2020 at 2:00 pm #22575
I am piggybacking off a recent column our own Charlene Marshall wrote. The column is titled “The Direct Influence of Healthy eating on the Body”. Her inspiration for this column came from her attendance at a seminar titled, “Health and Wellness with Pulmonary Fibrosis”. The seminar was part of the PFF Summit in San Antonio this past November. The focus of the seminar was healthy eating and avoiding foods producing carbon dioxide. Charlene writes: “Unsurprisingly, sugar produces the greatest amount of carbon dioxide, so patients with IPF must avoid frequent consumption of sugar.” In her column she also writes; “natural sugars in various fruits do not affect the body the same way that processed sugar does.”
As patients suffering with PF/IPF we should avoid as much processed sugar as possible. I know I have a sweet tooth. When I can’t avoid sweets like chocolate, candy, and baked or fried sweets it can ruin everything I have accomplished when attempting to lose weight. I am trying to get below 230 pounds. My physician stated to me if I get below this number she will reduce my blood pressure medication dosage. I hover around 250 pounds and have not had the will power to lose the weight. This 10 day plan is concrete and attainable to complete.
I read a publication that came out yesterday titled, “Break Your Sugar Addiction in 10 Days.” The plan is concise and straight to the point. The processed sugars most of us are consuming increase our chances to acquire inflammation and lower our immune system. My wife completed one of these sugar detoxifications last year. I can attest she felt great and the elimination of sugar facilitated her weight loss. The plan they offer in the publication is easy to follow and doesn’t require a membership to a club or subscription to buy special foods. It is basically using your own will power and making good eating choices.
Will you try this 10 day sugar detoxification plan?
Please update the forum on your results.
January 21, 2020 at 3:19 pm #22602
Great post, thank you so much for sharing this publication with us! Personally, I am pretty good with not craving processed sugars (fingers crossed it stays this way) but I think I’m going to follow this 10 day challenge anyways and see if it helps me! I’ll definitely report back on my results. Anyone else want to try this with me? I love a good challenge 😉
January 21, 2020 at 3:40 pm #22606
Thank you Charlene for your kind comments. I am sort of doing this right now but I really need to step up my game. It’s the only way to accomplish my goals.
January 22, 2020 at 2:16 pm #22629
I am reading this as I swallow my last bite of a cinnamon bun. OK I am in, the rest of the buns have been thrown in the freezer for company.
January 22, 2020 at 2:22 pm #22630
Hello Nan, way to go. I got faith in you. From what I am told you will feel a little better after cleansing your body of sugar. I am glad you are doing this. Best wishes, mark.
January 23, 2020 at 12:15 pm #22650Regina BolyardParticipant
I look at sugar….. I gain weight! Same with grains and rice. Sometimes it’s torture to resist, and sometimes I fail. But I feel so much better when I avoid all sources of sugar and starch. I also try to avoid all processed seed oils as these promote inflammation.
I lost 60 lbs over the course of a year and it helped my breathing tremendously. That was partly due to loss of fat that was further restricting my breathing, but I have no doubt that reducing inflammation also helped. I have no GERD when avoiding these foods either. Since gaining back a significant amount, I definitely feel the burden. I cough and wheeze a lot more when I repeatedly make poor food choices. Reflux also becomes an issue again. Now that I know why I was ill, I have greater incentive to straighten myself out. Especially with upcoming surgery.
Best wishes for all of you to succeed in your fitness goals!
January 23, 2020 at 12:46 pm #22651
Hello Regina, thank you for sharing your story with the pf forum. I feel like you do. When I’m at a lower weight my breathing seems better. I can not have sweets in the house if I am trying to avoid them. I look at them and I gotta have it. I have no self control. My method is not to buy any and put in the house. I wish for you to have a safe surgery. Best wishes to you and all the members to attain your goals. Mark
January 23, 2020 at 6:48 pm #22657
Everyone should watch the movie “That Sugar Movie” on Amazon. Watching that will reinforce the desire to eliminate processed sugar.
I’ll share my story. I was diagnosed with Hypersensitivity Pneumonitis in 2007 and went chronic (fibrosis) in 2011 and went on oxygen. Since I lived in California and worked in Washington DC, I got a POC for my frequent cross country flights. I had been obese most of my adult life, but thanks to prednisone, my weight bloomed to 385.
I had an exacerbation in 1/2018. My oxygen needs went from 4lpm to 8. I had to get a noisy high flow concentrator. I couldn’t use my POC anymore and had to use tanks with highflow cannulas. If I went out, I had to take extra tanks. Since I couldn’t handle them on my own, I ended up using a wheel chair to carry enough tanks. I started using a wheel chair car service. A real downer on my life. The delivery people from Doordash and Instacart were my best friends. Obviously, flying was out of the question.
In 10/18, my PC doc suggested a diet program called very low calorie diet. Around 600 calories per day. I had already lost 85 lbs, but had plateaued. I went on the medically monitored program of shakes, puddings and soups. I’ve lost 100 lbs. and have another 50 lbs to goal.
I had my appointment with my pulmonologist yesterday. Did a 6 minute walk and passed at 2 lpm.<span style=”mso-spacerun: yes;”> </span>My PFT results are back where they were before the exacerbation (FVC 43%, FEV1 50%, TLC 46%, DLCO 19%). Pretty much where they’ve been since 2011.Doctor says the improvements are due to my weight loss and wanted to know more about the diet clinic saying he had possible referrals. I’m also diabetic and have completely stopped using one type of insulin and almost off the other insulin. All due to weight loss.
Now the downside of this program. It’s really heavy on the artificial sweetners. Their “behavior” counseling program really does nothing to address sugar addiction. Focuses more on calorie management and exercise. So I am concerned that I’ll have problems when food is reintroduced.
But I’ve seen how well my condition has improved since losing weight, I’m highly motivated to conquering processed sugar.
January 23, 2020 at 7:20 pm #22666
Hello Terry, thank you for sharing your story. Sometimes telling our story can be emotional. Your story tells us you have a wonderful attitude towards your disease. Take care and keep improving. Best wishes, mark.
January 23, 2020 at 7:59 pm #22669Regina BolyardParticipant
Thank you so much for sharing your experience. I advocate abstinence from all sources of sugar. That includes all but the lowest glycemic fruit. It seems crushingly restrictive at times but the benefits, for me, are obvious. Deviating from it is equally telling.
January 24, 2020 at 1:22 am #22670JillTParticipant
I have been on a low carb/cyclic ketogenic diet since being diagnosed with Type 2 diabetes in 2012. I put on about 20kg after quitting smoking after my IPF diagnosis in 2009 and that tipped me into Type 2. By going so low carb, it’s almost inevitable that most sugars, high starch veg and processed grains are eliminated from the diet. I quickly lost the weight I’d gained, reduced my A1c to non-diabetic levels without medication and have maintained the weight loss for about 7.5 years now. Over the past few years, I’ve also incorporated a time restricted eating regime where I eat 2 meals a day within an 8 hour window.
Must admit I’ve been a bit more relaxed with my sugar control as I’ve lost more weight since my exacerbation earlier last year. I think the theory about increased metabolic rate must be correct as I hadn’t changed anything about my diet, yet still lost about 4kg without trying prior to going on oxygen. I think weight has stabilized again since starting on oxygen, but I’m now wondering if I shouldn’t get more strict about diet again. I probably average around 100g a day of carbs (including sugars) now, compared to the 60-70g I’d previously been eating. I’ve been telling myself the ice cream (my kryptonite) indulgences aren’t harming me, but I have to wonder.
There’s a guy who goes by the moniker “COPD Athlete” and his podcast has a lot of information on why a ketogenic diet is ideal for people with hypoxia. The interviews with ketogenic experts and researchers are well worthwhile listening to. I also recall reading about Bill Vick (“PF Warrior”) in a book about Paleo diet success stories after my IPF diagnosis.
I’ve often wondered if being on the low carb/keto diet helped stave off my progression to almost twice as long as the average time frame, but of course will never know that for sure.
I’d highly recommend the diet for both weight loss and – probably even more importantly – easy weight loss maintenance. The main thing is to commit to it as a permanent lifestyle change, rather than viewing it as a diet.
- This reply was modified 1 year, 9 months ago by JillT.
January 24, 2020 at 3:02 am #22672
Hello Jill, thanks for sharing your knowledge regarding diet and ipf. You make some wonderful points that have been supported in various research projects. I like what you write at the end of your comments, “commit to it as a permanent lifestyle change, rather than viewing it as a diet”. Excellent analysis and suggestions. Best wishes, mark.
January 24, 2020 at 5:49 pm #22676David OtaParticipant
I wanted to add a “different” point of view on the sugar topic. I was at an Indiana University watch party for an IU football game and struck up a conversation with a young man, probably 30-35 years old. He proceeded to tell me he was on a low/no carb diet and had started intermittent fasting. I asked him if he planned to live forever<span style=”color: #52565a;”><b>.</b></span>
He did not have a real answer to my question, but after losing to IPF and getting up every morning to tilt at windmills with someones else lungs, I refuse to give up sugar, red meat, french fries, pizza, vacations, and the general nonsense of life.
This is from Jason Isbell – If we were vampires
If we were vampires and death was a joke
We’d go out on the sidewalk and smoke
And laugh at all the lovers and their plans
I wouldn’t feel the need to hold your hand
Maybe time running out is a gift
I’ll work hard ’til the end of my shift
And give you every second I can find
And hope it isn’t me who’s left behind
<span style=”color: #52565a;”>IPF was horrible and living with a Lung Transplant is rough, but I guarantee you, I hold my wife’s hand every chance I get, I enjoy every piece of bacon, egg cooked in grease, and the meals I’ve made out of pop cycles. I never planned to get out of this life alive, but I do want to have fun while I’m here. </span>
<span style=”color: #52565a;”>This is not a philosophy for the faint of heart, it take true dedication to be as selfish as it sounds. Luckily I had decades of practice before IPF ever showed it ugly face on my door step.</span>
Just another way to wander through life.
<span style=”color: #52565a;”> </span>
January 24, 2020 at 6:13 pm #22677
Hello David, I wholly respect your opinion. I think it’s great you have this mindset. It is refreshing. I played college football and never really lost the weight that I didn’t need anymore. I had to lose 80 pounds in order to qualify for a transplant. I’m around 250 and would like to go below 230. I think I would be more comfortable. I played at 270 and even got up to 345. I wasn’t very comfortable at those high weights but I was still very active. As an added bonus my doctor said sge would reduce my bp meds if was to get under 230. Rt now I’m eating 5-7 small meals a day and something’s I eat aren’t the best for you but I don’t try to eat everything in sight. Take care, mark. Keep in touch. Love your insights .
February 22, 2020 at 10:02 am #23097
How is everyone doing with this? Me, not so good. I did not have any weight to loose but in the past 2 weeks I have been eating a lot of sugary treats and white flour and i have gained 3 pounds, now i need to loose weight as that put me in the over weight category. I really need to get on board. I have done intermittent fasting and low carb and i have done vegan. Both times I lost weight and have kept 40 of that 50 pounds off. I understand some people don’t want to give up things they love, i don’t want to either, but I can’t have it everyday. I just feel so much better when i don’t have sugar in my body. I don’t like the bloated feeling i get when i don’t eat right. I also breath better when i feel “lighter”. It is a new week so i will start over, wish me luck!
February 23, 2020 at 9:59 am #23103
Hello Nan, thank you for sharing. Kicking the sugar habit is a tough thing to do. Sweets surround us everyday. I resonate with the full bloated stomach. When this happens I have some difficulty of doing anything physical until my food digests. You have a happy Sunday. Mark
February 25, 2020 at 12:28 pm #23122Fred SchickParticipant
I avoid processed sugars, as well as artificial sweeteners, but it is difficult to totally eliminate them. Last spring, I added cinnamon swirl bread to my daily breakfast diet because it tasted so good. When I had my quarterly blood test. I found that my Trigliceride count had dramatically jumped. I replaced the cinnamon swirl bread with oat meal and natural honey; the next blood test showed the Trigliceride count bake to the normal range. Admittedly, this is one person without clinical testing standards but it reflects my personal experience of adding sugar to my daily diet.
February 25, 2020 at 1:24 pm #23129
Hello Fred, I think your informal research is spot on. I sometimes complete small studies like you did when I have scheduled blood work. It is good you did this so you can see what type of damage these sugars can do. Take care, Mark.
February 25, 2020 at 2:36 pm #23133Sheila O’BrienParticipant
As I don’t have a weight problem, I tended to not be aware of the sugar content I was actually absorbing. Sugar was never mentioned.
These posts have been rather enlightening and will now commit to abandoning it totally from my diet. The odd binge did happen. Worst for me has been the “cough” which also causes breathlessness and anxiety. I saw a lung oncologist (also have lung cancer) last week who prescribed codeine for the cough.
Starting my 2nd year on Esbriet.
February 27, 2020 at 7:59 am #23165
Thanks so much for writing! Cutting out sugar is an interesting topic, especially if the ultimate goal isn’t weight loss. For me, I just find my stomach feels better without processed sugar in it, but of course I binge sometimes too – chocolate is my weakness! I find my digestion better, less inflammation and just feeling unwell when I cut out processed/white sugar. I often consume more natural sugar though (from fruits, etc) then I likely need to!
Hope the medication is helping suppress the cough, I completely agree it can be very anxiety-provoking. I have it more now than I ever did after getting so sick in November and declining rapidly in lung function. Check out the ipfcough.com website by Respivant, see if you qualify for their clinical trial addressing the IPF cough. Here’s hoping something helps us! I am on my way to California now to meet with Respivant – if there is anything you want me to ask about the trial, please don’t hesitate to connect.
Hang in there and feel free to write us anytime.
April 6, 2020 at 3:15 pm #23851
Terry thanks for the recommendation. I watched the movie today. It was good, love the Aussie accents lol. I have not been doing good. In my captivity ( AKA self isolation) I have been ordering bad food, baking with sugars etc. I have gained weight, and don’t feel as good as I should. I have to get back on board. I have started baking sour dough bread, I hope that is ok to eat, any idea? I heard it is healthy. My recent HRCT says I likely have hypersensitivity pneumonitis so I want to stay as healthy as I can.
April 6, 2020 at 5:31 pm #23852
I lived in Australia for 18 months. I really miss it. I didn’t realize that, like the US, there are different accents across the various regions of Australia. Some, I really couldn’t understand. It was really funny at times as I tried to figure out what someone was telling me because we couldn’t understand each other’s accents. Had the same experience in Ireland, England and some parts of Kentucky and Georgia. And we were all speaking English.
I understand the frustration with weight. I’ve lost nearly 200 lbs., about 100 in the last 18 months. That’s an average of 5 lbs a month. I broke last week and gained 5 lbs in 3 days. It’s taken another week to get back on track and re-losing that 5 lbs. I just crave real food. I’m lucky I hate to cook and find it fairly easy to stick with my daily shakes and puddings.
I try to keep busy with needlepoint, knitting and making DIY face masks during the isolation. Not very good at the masks. I’m too much of a perfectionist to give these to anyone other than my family. They don’t care about the little flaws, but I do.
Continue to stay well.
April 10, 2020 at 12:37 pm #23912
So nice to hear from you, I hope you’re keeping well amid this pandemic. Thanks for writing to us 🙂
I love the Australian accents as well, and while I was there in 2015 and 2016 I noticed differences in the accents even between provinces as you say. I came home and said “reckon” once here in Canada, because I got so used to hearing it in Australia that my friends looked at me sideways. It was funny.
Have you ever tried any of the healthy grocery delivery boxes or recipes? I am going to write a forum post about this today I think, and see if other IPF/PF patients have tried this. I just ordered my first box, to be delivered on Monday as I struggle with creativity in the kitchen sometimes as well. Glad you’re managing okay on smoothies and pudding. Take good care and be safe!
April 10, 2020 at 9:10 pm #23946
I had one funny experience when there around words. Probably have to be from US to really experience. I was at my favorite pub for fish and chips. Something I did atleast weekly. This time, there was a group of 6 guys celebrating at a nearby table. One of them called out to me “Hey, unk., Hey, unk”. I ignored him. “Hey, unk” I heard again. Finally, he came over and carefully enunciated “Hey, yank. You are a yank, aren’t you?” “unk” was “yank”? My initial reaction was “no, I’m from California”. For me, yank is short for yankee and that’s what Southerners called Northeners. As a Californian, I was niether. Also, the term in usually meant for a man. I’d never heard a woman called Yank. Then remembered where I was, Australia. Yank means anyone from the US.
I stuttered and said “oh yes. I am a Yank.” We had a great laugh and he asked if I’d take a picture of their group. I’m sure they just thought I was a crazy unk.
April 11, 2020 at 8:33 am #23950
Hello Terry, thank you for the laugh! Have a great Easter weekend, mark.
April 17, 2020 at 2:02 am #24030JillTParticipant
Just been reading an interesting article on the topic “Can Low Carb Help Lung Disease?” – from the “For Doctors” section of the Diet Doctor website, summarizing a lot of the research on the topic, especially relating to COPD, but other conditions as well:
April 17, 2020 at 7:18 am #24031
Hello JillT, thank you for providing this informative article. Best wishes, Mark
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