Extreme weight loss, cannot eat. No diagnosis yet.

Posted by filiond @filiond, Apr 13, 2020

have extreme weight loss cannot eat. Have bad cramps in back and upper stomach. have had endoscopie and colonoscopie and full blood and stool seem normal. have seen 2 gastro doctors who have no answers for me. Lost 40 lbs in 6 months. have also had scan with contrast for digestion system
which is normal Am followed by nathuropath doctor who is giving me enzymes and probiotics that don't seem to work Any opinions!

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@jmn

Sorry for your dilemma. Not being able to eat is quite scary. I am wondering, did you use excessive over the counter pain medications like ibuprofen, Aleve, Advil and the like? If so, you may have destroyed your stomach and gut which maybe the cause of your inability to eat. I did this myself due to life-long migraines. I got down to 103 at age 60. I was 138. Did you have an endoscopy? Without the endoscopy, I would never have known the cause of my severe weight loss. The medications made my stomach produce too much collagen to protect it from burning itself but then I could not eat, nor absorb nutrients. Please consider the possibility. I am not a medical doctor, but it appears they may be overlooking a rare disorder which is on the rise. Collagenous Gastritis is the diagnosis I have. My best to you in finding the cause. Don’t wait....

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I had migraines all my life. I did take aspirin and anacin for years and series of medication prescribed by neurologist. I did have stomach problems about 10 years ago and they gave me Elavil ( antidepressant) that helped me with the pain of migraines. I have stopped taking aspirin for migraines about 18 months ago. The headaches are less frequent and don't take any medication for headaches. I did have an endoscopy in February 2020. The test seemed normal the biopsy mentionned no prominent chronic inflammation. Diagnosis functional dyspepsia. I did also have a colonoscopy at the same time and diagnosed with IBS. So I don t know if Collagenous Gastritis applies to me As the GI dr. has closed my file. I will try and discuss this with another dr that will listen to me.

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@filiond

When I spoke to the gastro dr in April I mentioned to her about mals she said she was aware of this condition I thought the tests she gave me ct scan enteropathy and barium meal were to detect this condition
She never contacted me she sent me an email saying she was not available and to contact my family dr. Who is not much use. I am seeing a new private dr for blood work and will mention mals
Thank you again

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You need to see a Vascular surgeon for the CT bc there’s a certain way they need to perform it. Check out the MALS Awareness page on Facebook. They’re very helpful and can answer lots of questions.

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Starting around last April, I just lost any desire to eat. Seldom felt hunger. I’ve been forcing myself to eat and to drink protein drinks. Have list 52 lbs, which luckily, I could afford to lose. Doctor did a CT of my abdomen and EGD, but everything was normal. At about the same time the weight loss began, my lower legs suddenly developed what look like petechiae. They itch terribly. Steroids didn’t help. Doctor now has me on Naltrexone 50mg for the itching. It works, the itching is almost gone. But Naltrexone has undesirable side effects. One is insomnia, which now has me up till 5 AM on average. The other, ironically, is surprised appetite. Now I can barely force food down. Help!

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@susanh824

Starting around last April, I just lost any desire to eat. Seldom felt hunger. I’ve been forcing myself to eat and to drink protein drinks. Have list 52 lbs, which luckily, I could afford to lose. Doctor did a CT of my abdomen and EGD, but everything was normal. At about the same time the weight loss began, my lower legs suddenly developed what look like petechiae. They itch terribly. Steroids didn’t help. Doctor now has me on Naltrexone 50mg for the itching. It works, the itching is almost gone. But Naltrexone has undesirable side effects. One is insomnia, which now has me up till 5 AM on average. The other, ironically, is surprised appetite. Now I can barely force food down. Help!

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@susanh824. I moved your post to this existing, similar discussion:
- Extreme weight loss, cannot eat. No diagnosis yet.: https://connect.mayoclinic.org/discussion/extreme-weight-loss/

I did this so you can read through the previous posts and connect easily with members like @jimhd @lioness @astaingegerdm @lasirvent @filiond and others.

Sudden and unexpected weight loss is a common symptoms of many different conditions. Judging by some of the other posts you've made, it looks like you and your doctor may be investigating possible autoimmune disorders. Is that right? What conditions have been ruled out? What investigations have been done?

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@colleenyoung

@susanh824. I moved your post to this existing, similar discussion:
- Extreme weight loss, cannot eat. No diagnosis yet.: https://connect.mayoclinic.org/discussion/extreme-weight-loss/

I did this so you can read through the previous posts and connect easily with members like @jimhd @lioness @astaingegerdm @lasirvent @filiond and others.

Sudden and unexpected weight loss is a common symptoms of many different conditions. Judging by some of the other posts you've made, it looks like you and your doctor may be investigating possible autoimmune disorders. Is that right? What conditions have been ruled out? What investigations have been done?

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I had an abdominal CT scan and an EGD. Both normal. My past history includes a gastric bypass 22 years ago. I gained most of my weight back over the years. Took 50 lbs off when I decided to re-commit to diet and exercise. Kept that 50 off, but fell off the wagon again. Stopped exercising and ate what I wanted. This lack of interest in food came on fairly suddenly, and I have lost another 50 lbs. I try to drink protein drinks, and when I do eat, I make sure it is high in protein. I’m within 30 or so lbs of my goal weight, which is great, but other than a feeding tube, how do I stop losing when I get there?

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