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Unexplained 30 lb loss despite high kcal, possible malabsorption

Posted by questioningsteph1045 @questioningsteph1045, Jun 16 3:47pm

38F with hEDS, POTS, MCAS, and confirmed gastroparesis. Lost ~30+ lbs (132 → 100 lbs) despite periods of 3,800–5,000 calories/day during nutritional rehabilitation. Looking for others who have experienced severe weight loss, post-meal abdominal distension, pale/sticky stools, and suspected malabsorption despite extensive workup.

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dt61 | @dt61 | Jun 17 6:51am

I weighed 165-170 for many years and before that even more.
I will be 65 shortly, 5' 11" male.
I lost 30 pounds in about 30-45 days 5/2024.
Diagnosed (then, had issues before) with EPI and also Lymphocytic Colitis (can't say enough bad about that). As of now I weigh 114-116, i am a skeleton and every bone and vein shows, almost zero body fat.
This was the cause of my weight loss and i am now only able to consume scrambled eggs along with my required Creon. I have to take (by Dr direction) more than max (i take 3 36,000 per meal, max recommended is 2 36,000) recommended and this medication is beyond expensive.
I hope for better for you, all of these things i bear with each day just become overwhelming. Not starving to death is the main goal (for some reason).

REPLY
3 replies
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standinginfaith | @standinginfaith | Jun 17 8:55am
In reply to @dt61 "I weighed 165-170 for many years and before that even more. I will be 65 shortly,..." + (show)
Profile picture for dt61 @dt61

I weighed 165-170 for many years and before that even more.
I will be 65 shortly, 5' 11" male.
I lost 30 pounds in about 30-45 days 5/2024.
Diagnosed (then, had issues before) with EPI and also Lymphocytic Colitis (can't say enough bad about that). As of now I weigh 114-116, i am a skeleton and every bone and vein shows, almost zero body fat.
This was the cause of my weight loss and i am now only able to consume scrambled eggs along with my required Creon. I have to take (by Dr direction) more than max (i take 3 36,000 per meal, max recommended is 2 36,000) recommended and this medication is beyond expensive.
I hope for better for you, all of these things i bear with each day just become overwhelming. Not starving to death is the main goal (for some reason).

Jump to this post

@dt61 Praying for you!!

REPLY
1 reply
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standinginfaith | @standinginfaith | Jun 17 9:07am

I weighed 135-1400 and dropped to 98 ..took and antibiotic 2x usual strength and it blew a hemorhage in my stomach.. all downhill from there..got so bad I got scurvy.. so..I had my gallbladder taked out..and lots of stuff done.. did the leaky gut process for 5 phases and then when I found out phase 6 was several months..I quit!! So about 3 years in and after many ER visits and several hospital stays) I got a good gastro..and he found out I had pyloric stenosis..which he used botox on..sevearl times.. and now it's healed and I had a tortious colon ..and God healed that too.. after the pyloric stenosis healed I ballooned to 160.. but I'm fat but much healthier.. all except the possible scleroderma (systemic) and fibromyalgia and today I'm seeing the allergist who says I have Chronic Spontaneous Urticaria..and oh I do have kidney stones and it took 2 1/2 months last summer to pass a 10.7mm (he wouldn't just take it out) and 3rd stage renal failure..but I'm 72.. so I expect some thing so be going wrong.. I started drinkin plant base Vanilla Ensure..(no sucralose) I have the pale stools too..not often tho.. I also take VSL3 probiotics.. ..but I am standing on the stripes of Jesus.. He's gotten me thru sever near death experiences.. I'll pray for you!!

REPLY
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dt61 | @dt61 | Jun 17 10:05am
In reply to @standinginfaith "@dt61 Praying for you!!" + (show)
Profile picture for standinginfaith @standinginfaith

@dt61 Praying for you!!

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@standinginfaith
thank you! and with that now we are talking about where real hope is imho.

REPLY
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dee6cravens | @dee6cravens | Jun 18 8:49am
In reply to @dt61 "I weighed 165-170 for many years and before that even more. I will be 65 shortly,..." + (show)
Profile picture for dt61 @dt61

I weighed 165-170 for many years and before that even more.
I will be 65 shortly, 5' 11" male.
I lost 30 pounds in about 30-45 days 5/2024.
Diagnosed (then, had issues before) with EPI and also Lymphocytic Colitis (can't say enough bad about that). As of now I weigh 114-116, i am a skeleton and every bone and vein shows, almost zero body fat.
This was the cause of my weight loss and i am now only able to consume scrambled eggs along with my required Creon. I have to take (by Dr direction) more than max (i take 3 36,000 per meal, max recommended is 2 36,000) recommended and this medication is beyond expensive.
I hope for better for you, all of these things i bear with each day just become overwhelming. Not starving to death is the main goal (for some reason).

Jump to this post

@dt61, talk to your physician about trying the drug Colestid. Apparently, it is having some success for some digestive issues associated with malabsorption. If you haven’t already, make an appointment with the digestive/pancreatic care team at Mayo Clinic. Good luck.

REPLY
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dt61 | @dt61 | Jun 18 10:55am

thank you, i appreciate your thoughts.

REPLY
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barbgreen0959 | @barbgreen0959 | Jun 21 1:10pm
In reply to @dt61 "I weighed 165-170 for many years and before that even more. I will be 65 shortly,..." + (show)
Profile picture for dt61 @dt61

I weighed 165-170 for many years and before that even more.
I will be 65 shortly, 5' 11" male.
I lost 30 pounds in about 30-45 days 5/2024.
Diagnosed (then, had issues before) with EPI and also Lymphocytic Colitis (can't say enough bad about that). As of now I weigh 114-116, i am a skeleton and every bone and vein shows, almost zero body fat.
This was the cause of my weight loss and i am now only able to consume scrambled eggs along with my required Creon. I have to take (by Dr direction) more than max (i take 3 36,000 per meal, max recommended is 2 36,000) recommended and this medication is beyond expensive.
I hope for better for you, all of these things i bear with each day just become overwhelming. Not starving to death is the main goal (for some reason).

Jump to this post

@dt61
Praying for you! 🙏🏽🙏🏽🙏🏽

REPLY
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