Extreme weight loss, cannot eat. No diagnosis yet.

Posted by filiond @filiond, Apr 13 3:44pm

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!

@astaingegerdm

@filiond – I posted here in April, suggesting your blood supply to the intestines was abnormal. The problem I referred is MALS- when the important celiac artery in your abdomen is compressed by a ligament. You get severe abdominal pain after eating and most people lose a lot of weight. Was this discussed?

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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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@filiond – Thank you for your quick response. I am not sure that even many gastroenterologists are very familiar with the illness- it is rare. They would first do a Doppler ultrasound to check the blood flow in the abdomen. That’s an easy test. To confirm a finding they would do a CT angiogram- also looking at blood vessels. I think you deserve to have every possibility checked instead of going to pain management and continue to lose weight. Good luck!

Liked by Ellen

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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….

Liked by Ellen

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@filiond

Thanks for the info. I looked up the Symptoms.. I don't have nausea, vomiting or diarrhea but according to Wikipedia these symptoms can vary and can include constipation and no vomiting. I will follow up with my gastro Dr. next week by phone because of physical distancing due to the virus.

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I had similar symptoms.
I am not a doctor and I cannot diagnosis but I will share my experience:
Extreme pain not long after I ate.
Diarrhea.
My daughter was an Registered Dietitian at a university hospital. (Virginia)
She later became a physician’s assistant and asked what my GIs treatment plan was:
1. Biopsy
2. Breath test at a hospital
3. Allergy testing
4. I don’t remember!! long ago😇
I was diagnosed with celiac disease.
Allergic to wheat in any product!

What a relief. Just eat gluten free. Phew!
Gluten Free For Dummies is a great book: my bible which I have memorized.

OK, I am not perfect. I have a favorite candy and I over indulged in it: Guest what!
After consuming a LOT of these candies I paid a penalty! Montezuma’s revenge. This candy contains wheat!!

Celiac is easy to manage if you read the label …
And do not eat anything with wheat in it😡even favorite candy.
P.S. I wonder if I could eat one or two a day🤫

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@helenfrances

I had similar symptoms.
I am not a doctor and I cannot diagnosis but I will share my experience:
Extreme pain not long after I ate.
Diarrhea.
My daughter was an Registered Dietitian at a university hospital. (Virginia)
She later became a physician’s assistant and asked what my GIs treatment plan was:
1. Biopsy
2. Breath test at a hospital
3. Allergy testing
4. I don’t remember!! long ago😇
I was diagnosed with celiac disease.
Allergic to wheat in any product!

What a relief. Just eat gluten free. Phew!
Gluten Free For Dummies is a great book: my bible which I have memorized.

OK, I am not perfect. I have a favorite candy and I over indulged in it: Guest what!
After consuming a LOT of these candies I paid a penalty! Montezuma’s revenge. This candy contains wheat!!

Celiac is easy to manage if you read the label …
And do not eat anything with wheat in it😡even favorite candy.
P.S. I wonder if I could eat one or two a day🤫

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@helenfrancis I think you would still notice it maybe in belly aches and gas bloating some If you want chocolate on Vitacost there is a Hemp chocolate dark that is good and I dont think there is any wheat in it .

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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….

Jump to this post

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

Jump to this post

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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