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Dr. Andrew Rynne
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Dr. Andrew Rynne

Family Physician

Exp 50 years

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In Ehlers Danlos syndrome 3, is it usual that tests

Answered by
Dr.
Dr. Ramesh Kumar

Gastroenterologist

Practicing since :1986

Answered : 2349 Questions

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Posted on Fri, 29 Mar 2019 in Digestion and Bowels
Question: In Ehlers Danlos syndrome 3, is it usual that tests can be normal but have stomach and bowel pain, lost 30% plus of body weight in less than 1yr and unable to maintain weight? Had a trial of NG feeding which helped but my doctor seems reluctant to do long-term enteral feeding as tests are normal yet I am unable to maintain nutrition orally. I also had colonic inertia and had an ileostomy and now have high output.
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Answered by Dr. Ramesh Kumar 1 hour later
Brief Answer:
Divide the total food into 10 equal portions.

Detailed Answer:
Hello and thank you for being at 'Ask A Doctor' forum dear,
Firstly I am sorry to hear about the rare condition you are suffering from.
Secondly hats off to your confidence and will.
Appreciating your strong will from the bottom of my heart.

Functional bowel incapacitation is seen in patients with Ehlers Danlos 3. Though this is still a syndrome on which not much literature is there, dysfunction related to stomach and gut is a part of this disease.

Now let's assume a condition when you are feeding a patient giving her all nutrients amino acid but his gut is not accepting it or absorbing it. In that condition despite giving enteral feed or oral feed the patient won't be able to get enough calories as most of the nutrients would be excreted instead of being absorbed and as calorie deficiency is there severe and drastic weight loss would be there.

Longtime enteral feeding should never be the initial option rather I would suggest you give the oral diet a try again but this time with some difference.

Firstly calculate your maintenance calories and macronutrients you need (you can do it online on any website).

Now divide your food into 12 equal parts. I know sounds strange but just give it a try. Dividing all meals into 10 to 12 oral feeds would significantly decrease the amount of food your gut has to digest every hour and your intestine has to absorb.

Give this a try for 15 days.

You can take protein powder to supplement food protein as the powder is highly processed and is very easy to absorb. Use hydrolyzed powder. Suppose if one scoop contains 30-gram protein the divide 2 scoops into 10 feeds. So 60-gram protein in 10 feeds makes it only 6 gram in every feed which is very easy for your partially functional gut to digest.

Though it sounds a bit hectic give it a try for 15 days and let me know if you are tolerating it or not.

Hope I was helpful,
Let me know if I can assist you further.
Regards



Above answer was peer-reviewed by : Dr. Arnab Banerjee
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