Hello All,
I have gone from 190 lbs down to 140.2 lbs over the course of 9 months going through various testing, breath and blood work to finally get to the diagnosis of MC/LC last month. I was on a strict Non-Fructose FODMAP diet for 2-3 months (false/positive on Fructose Malabsorption) which caused at least 20-30 lbs of sugar fat to be lost immediately which was ok. I am 5'6" and was about 20 lbs overweight IMO back before I was diagnosed. I have lost most of my muscle tone in my arms and legs and my back and shoulders.
Has anybody else lost this much amount of weight before getting a true diagnoses of MC? I had stabilized at 145 Lbs for about 2 weeks, but know am down to 140.2 as of yesterday. I'm eating breakfast, mid morning snack, lunch and a full dinner everyday.
I see a Dietician/Nutrient Specialist once every other week for recommendations, but she is baffled herself on what I can eat to put on weight healthily. I'm a bit concerned to say the least. I now also have terrible back pain, which is preventing me from working out again. My stress is off the charts with the drastic weight loss of a possible "cancer" somewhere in my body? Any and all comments are welcome? Thank You
Serious Weight Loss
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
No. I am on Budesonide also and having Daily regular stool. I was shown to have a deficiency in Oleic Acid on my last blood panel and have started taking Digestive enzymes to assist with intake of short chain fatty acids. I was thought to have EPI at one time and was on PERT Therapy for 2 weeks, but that didn’t help with the diarrhea at all. Last diagnosis of MC confirmed through biopsies.
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Gabes-Apg
- Emperor Penguin
- Posts: 8343
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
weight gain will come when there is good healing and 'balance'
this also will not be helping the weight situation. Nervous energy burns energy stores in the body and puts the adrenals into 'constant on' process which is big contributer to weight loss
my main suggestion is 'less is more' dont try to fix everything at once
stop, breathe, healing takes time.
with safe eating plan working, reduction in budenside, optimising healing with low inflammation eating plan coupled with good levels of Vit D3 and magnesium, the gut will heal and your body will start to gain weight.
Vit D3 and magnesium will also help with stress.
My stress is off the charts with the drastic weight loss of a possible "cancer" somewhere in my body?
this also will not be helping the weight situation. Nervous energy burns energy stores in the body and puts the adrenals into 'constant on' process which is big contributer to weight loss
my main suggestion is 'less is more' dont try to fix everything at once
stop, breathe, healing takes time.
with safe eating plan working, reduction in budenside, optimising healing with low inflammation eating plan coupled with good levels of Vit D3 and magnesium, the gut will heal and your body will start to gain weight.
Vit D3 and magnesium will also help with stress.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabe, I also take Vitamin D, Magnesium (orally and topical spray.)
I also thought, as does my GI, that the steroid Budesonide should be putting weight on, as I know have regular, Daily and formed stools in the last 2 weeks.
Other than Anemia, Low iron or Malnutrition, how can I still be loosing this much weight and muscle?
I try and walk at least 1-2 miles every day as a starter excercise from many months of inactivity. I take vitamin A, B-12, C, D3, K, Magnesium and Copper, along with a multviand healthy diet ( maybe to low fat?)
I stopped Gluten, salads and dairy too.
Possibly a metabolism issue with stress and Adrenals? Thanks!
I also thought, as does my GI, that the steroid Budesonide should be putting weight on, as I know have regular, Daily and formed stools in the last 2 weeks.
Other than Anemia, Low iron or Malnutrition, how can I still be loosing this much weight and muscle?
I try and walk at least 1-2 miles every day as a starter excercise from many months of inactivity. I take vitamin A, B-12, C, D3, K, Magnesium and Copper, along with a multviand healthy diet ( maybe to low fat?)
I stopped Gluten, salads and dairy too.
Possibly a metabolism issue with stress and Adrenals? Thanks!
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Gabes-Apg
- Emperor Penguin
- Posts: 8343
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I suspect that you are burning more energy via overactive metabolism/stress etc
the other aspect is that the months of digestion issues, you will not be absorbing full amount of nutrients from food and supplements for the period you have had digestion issues.
the best way to gain weight is to eat more/do less , larger serve sizes, more snacks.
less activity and less stress.
For MC'ers this is reliant on eating more of our 'safe foods'
how long have you been taking the Vit D3 and using magnesium?? it can take a minimum of 8 weeks to corret deficiencies
the other aspect is that the months of digestion issues, you will not be absorbing full amount of nutrients from food and supplements for the period you have had digestion issues.
the best way to gain weight is to eat more/do less , larger serve sizes, more snacks.
less activity and less stress.
For MC'ers this is reliant on eating more of our 'safe foods'
how long have you been taking the Vit D3 and using magnesium?? it can take a minimum of 8 weeks to corret deficiencies
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I was hide and bones off and on back when I was still reacting. I thought I was going to just waste away too, but I didn't. I'm the same height and I went from about 165 down to the 120s during the worst of it, but as I healed I gained the weight back. As the inflammation begins to diminish, your digestion will improve and you will begin absorbing nutrients better. You have to eat more of your safe foods. Calorie intake minus burned (or wasted) calories has to show a surplus in order to gain weight.
Tex
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I truly appreciate the quick and special feedback I receive from you guys! My GI doctor “swears his MC patients are on no special diets and don’t show extreme weight loss as I have”. I believe I know more now about this disease by reading this forum and Wayne’s book than my GI doc ever will, which of course has him snubbing me now when I supply an answer he can’t! Pretty sad.
I’ve been on heavy Magnesium and Vitamin D intake for 3 weeks and will continue to do so Gabe! Yes, I’m coming to the realization that fighting through this disease undiagnosed for so many months definitely threw my body into total metabolism chaos, so fingers crossed, eating more protein and calories will slowly add some weight on to my skinny frame! I just need to accept this will take time and exercise in moderation to gain muscle tone back. Being tested next week for Osteoporosis, as my back/spine is hindering my exercise plan.
Thanks for all your helpful replies as usual Team!
Bless you!
I’ve been on heavy Magnesium and Vitamin D intake for 3 weeks and will continue to do so Gabe! Yes, I’m coming to the realization that fighting through this disease undiagnosed for so many months definitely threw my body into total metabolism chaos, so fingers crossed, eating more protein and calories will slowly add some weight on to my skinny frame! I just need to accept this will take time and exercise in moderation to gain muscle tone back. Being tested next week for Osteoporosis, as my back/spine is hindering my exercise plan.
Thanks for all your helpful replies as usual Team!
Bless you!
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Gabes-Apg
- Emperor Penguin
- Posts: 8343
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
my other words of advice areYes, I’m coming to the realization that fighting through this disease undiagnosed for so many months definitely threw my body into total metabolism chaos, so fingers crossed, eating more protein and calories will slowly add some weight on to my skinny frame! I just need to accept this will take time and exercise in moderation to gain muscle tone back. Being tested next week for Osteoporosis, as my back/spine is hindering my exercise plan.
- healing takes time. a broken bone for a healthy person takes 6-12 weeks to heal.. (and that includes 4-6 weeks of immobisation via a cast etc) to heal the gut from months (or ?years) of inflammation is going to take months not weeks.
- MC is 'for life' we cant get eradicate it/banish it. we have to learn how to live with it, love it, embrace good days and bad days when they happen. keep expectations real, not many people get 100% health and body that they had before MC.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I lost about 70 pounds when I was diagnosed. I'm pretty stable right now. Some days I put weight on and others I don't, but I always eat consistently as I know my body needs the fuel. As long as you are reacting, you won't gain weight, but once you get some healing, you can maintain or gain.
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Thank you all for the quick responses and positive feedback! Unfortunately the mind/body is not accustomed to this this when one day your fine and for the next few months your a stressed out ticking time bomb wondering what else will my body throw at me! Much love and thanks for all the positive feedback through this site! Thanks Gabe!
I've always had digestive issues and went dairy free 20+ years ago. I was diagnosed with MC-LC in July 2017 after my gut really started acting up in Oct 2016 and I couldn't figure out why. I blamed it on the new snack at the time of graham crackers and having a new job after being unemployed for 1 1/2 years.
From reading the many posts, I consider myself very fortunate as I only had flare ups a couple times a week and they would last 1 - 3 hours and then I was relatively fine. I continue to experience flare ups once or every few weeks. The GI but me on Pepto for 8 weeks and I honestly don't know if it really helped. I still take it when necessary.
I've worked hard on narrowing down my acceptable foods list and tend to live on chicken, light white fish, raw carrots, melons, arugula, white rice, pasta and bread. I dearly miss my lettuces & green beans. I plan to start the GF process this week which mainly affects my bread & pasta choices as I eat very few processed products so it may be a bit easier for me as I've been working on my diet for just over a year now.
In regards to weight loss, I started keeping track in March 2017 and have lost close to 40lbs (3-4 lbs a month) which I'm okay with as I really needed to lose it. However, I believe I probably lost 25+ lbs when the issues first started. My doctor was very concerned as she's never seen me lose weight before so I kept track of everything I ate for a week and connected the Food App to my Fitbit and it explained why the weight was coming off & she was a little less concerned.
I've not seen her in a year and am 37lbs less (154lbs now), so I can only imagine what she'll say next month. I really hope I stabilize soon as I don't want to lose anymore but when I try to eat more, I tend to have flare ups. I do plan on starting the D3 & Magnesium next month but want to wait until I have my levels tested to insure I'm taking the correct amounts. I would like to look into the food sensitivities tests however, with the CAD $ as it currently is I may need to look for a local provider.
I've found this site to be very helpful, if rather overwhelming at times and try not to worry (easier said then done when food has been such a focus in my life). I do feel great and tend to have alot of energy so I must be doing something right.
From reading the many posts, I consider myself very fortunate as I only had flare ups a couple times a week and they would last 1 - 3 hours and then I was relatively fine. I continue to experience flare ups once or every few weeks. The GI but me on Pepto for 8 weeks and I honestly don't know if it really helped. I still take it when necessary.
I've worked hard on narrowing down my acceptable foods list and tend to live on chicken, light white fish, raw carrots, melons, arugula, white rice, pasta and bread. I dearly miss my lettuces & green beans. I plan to start the GF process this week which mainly affects my bread & pasta choices as I eat very few processed products so it may be a bit easier for me as I've been working on my diet for just over a year now.
In regards to weight loss, I started keeping track in March 2017 and have lost close to 40lbs (3-4 lbs a month) which I'm okay with as I really needed to lose it. However, I believe I probably lost 25+ lbs when the issues first started. My doctor was very concerned as she's never seen me lose weight before so I kept track of everything I ate for a week and connected the Food App to my Fitbit and it explained why the weight was coming off & she was a little less concerned.
I've not seen her in a year and am 37lbs less (154lbs now), so I can only imagine what she'll say next month. I really hope I stabilize soon as I don't want to lose anymore but when I try to eat more, I tend to have flare ups. I do plan on starting the D3 & Magnesium next month but want to wait until I have my levels tested to insure I'm taking the correct amounts. I would like to look into the food sensitivities tests however, with the CAD $ as it currently is I may need to look for a local provider.
I've found this site to be very helpful, if rather overwhelming at times and try not to worry (easier said then done when food has been such a focus in my life). I do feel great and tend to have alot of energy so I must be doing something right.
Hi Suz,
Welcome to the group. Apparently your doctor doesn't have many (or any other) MC patients. It may take a while, but I believe that after you eliminate gluten from your diet and allow your intestines a while to heal, your ability to absorb nutrients will improve and your weight will stabilize. If the symptoms continue, soy is probably the next most likely suspect that may need to be avoided.
If I were in your shoes and I couldn't justify the cost of the EnteroLab tests, I believe I would just save my money. So far we haven't been able to find any other lab in the world that can provide accurate and reliable food sensitivity results. The blood tests and skin tests offered by other labs are a total waste of money if you are trying to determine food sensitivities for this disease.
This disease does tend to be rather overwhelming at times. It helps to take life a day at a time while recovering.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. Apparently your doctor doesn't have many (or any other) MC patients. It may take a while, but I believe that after you eliminate gluten from your diet and allow your intestines a while to heal, your ability to absorb nutrients will improve and your weight will stabilize. If the symptoms continue, soy is probably the next most likely suspect that may need to be avoided.
If I were in your shoes and I couldn't justify the cost of the EnteroLab tests, I believe I would just save my money. So far we haven't been able to find any other lab in the world that can provide accurate and reliable food sensitivity results. The blood tests and skin tests offered by other labs are a total waste of money if you are trying to determine food sensitivities for this disease.
This disease does tend to be rather overwhelming at times. It helps to take life a day at a time while recovering.
Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.