TPN troubles

[AmyLue]

Hello! I was placed on TPN in June due to near total villi blunting.  After 2 months of TPN and only ice chips for dry mouth, I was reintroduced to food and drink.  For the past month my TPN has been tapered and all was well following gluten free diet.  This was to be my last week of TPN.  2 days ago, I developed loose stools again.  Is it possible that the small intestine is damaged again? Would love to hear from anyone with the same experiences. 

[trents]

Welcome to the forum, AmyLue!

May we ask what is your age? For mature adults it typically takes two years or more for total healing of the villi once a gluten free diet is being consistently followed.

Has there been a follow-up biopsy to check the status of the villi after less than four months of being on TPN?

Having said that, there are many potential causes for loose stools. It could just be due to continuing adjustment to real food during the taper or to something specific you ate or ate too much of or to picking up an intestinal bug.

I ate a modest amount of watermelon last night and it gave me loose stools this morning. Watermelon is high in a sugar alcohol known as sorbitol that is known for producing this effect.

Edited September 19, 2022 by trents

[Scott Adams]

The loose stools could be from anything, even the fact that you weren't eating food for so long, and then started eating them again. You also may have other issues going on, for example additional food intolerances, so you may need to keep a food diary for a while to see if the issue can be linked to a particular food or foods.

[AmyLue]

On 9/18/2022 at 8:46 PM, trents said:

Welcome to the forum, AmyLue!

May we ask what is your age? For mature adults it typically takes two years or more for total healing of the villi once a gluten free diet is being consistently followed.

Has there been a follow-up biopsy to check the status of the villi after less than four months of being on TPN?

Having said that, there are many potential causes for loose stools. It could just be due to continuing adjustment to real food during the taper or to something specific you ate or ate too much of or to picking up an intestinal bug.

I ate a modest amount of watermelon last night and it gave me loose stools this morning. Watermelon is high in a sugar alcohol known as sorbitol that is known for producing this effect.

I’m 46.  Mayo has not scheduled a follow up biopsy. When dismissed, they said plans are  to do another one in a year.   The stools are a little better today.  I am so close to being done with my TPN that I just worry about a set back! Thank you everyone for your helpful reply’s. 

[trents]

AmyLou,

I take it your villi were completely warn down, or almost so, and you were severely malnourished in order to have been put on TPN. Was all this due to long-term misdiagnosis that someone finally figured out was celiac disease. We would be interested in hearing your story as it might be a wakeup call for someone else going through a similar experience.

[Scott Adams]

You may also want to be casein/cow's milk free for a while, as many celiacs also report having issues with casein, especially right after diagnosis.

[AmyLue]

15 hours ago, trents said:

AmyLou,

I take it your villi were completely warn down, or almost so, and you were severely malnourished in order to have been put on TPN. Was all this due to long-term misdiagnosis that someone finally figured out was celiac disease. We would be interested in hearing your story as it might be a wakeup call for someone else going through a similar experience.

It has been a very long road to diagnosis and recovery.  Yes, I ended up severely malnourished, way closer to dead than alive.  

In November of 2021, developed diarrhea. Was diagnosed with parasite Cryptosporidium.  Treated and all was well.

I developed diarrhea again in March of 2022. By Mid April, I could no longer work. My doctors scheduled a colonoscopy/EGD, which showed no damage. March 6th I was admitted to local hospital, due to potassium of 1.9.  My mom has Crohn’s, so we really thought that is what we were going to be treating.  After week in hospital, on steroids, loose stools disappeared.  After multitude of stool and lab work, we thought maybe we were looking for Neuro endocrine tumors (NETS). 

I was sent to GI specialist, had endoscopic ultrasound and camera endoscopy…with no findings of damage.   For 2 weeks all was normal…then the stools came back with a vengeance.  This time accompanied with vomiting.  I was admitted again June 6th, gallbladder removed.   After week in hospital, they were able to get me into Mayo Clinic as outpatient.  During this time my husband had to push me everywhere in a wheelchair, I could no longer walk more than about 10 ft.
 

We saw first round of doctors on June 15th, including genetic testing (family hx of adrenal and pancreatic cancer too).  By June 18th I went to Mayo ER. Given fluids and sent back to hotel. The next morning, we went back to ER and I was admitted to Mayo hospital.  My labs were a mess.  At this time they found that I carried the celiac gene, and put me on gluten free diet.  Also had another scope, this time the biopsy showed almost complete villi blunting in small intestine.  My IgA and IgG levels were tested, but were low.  I was placed on TPN and given a diagnosis of “blood pressure medicine induced enteropathy”.  (BTW, I was only on BP meds for less than month when diarrhea started).

TPN saved my life!  July 2nd I was released home!!!  

Sorry for the long reply, but this was a very long road. My local doctors and surgeons were amazing!  I had standing orders for labs and fluids in between hospitals stays. My family history complicated things too!   Mayo still isn’t wanting to completely diagnose Celiacs, but they are finally starting to lean that way.

Looking back, I had signs for years, but didn’t put them together.  Carbs bothered me, which I now know was truly the gluten.  Weight gain, pain in joints, tired sluggish feeling. Bouts of loose stools after a weekend of beer.   In January of this year, I broke my sternum. End of February, my husband was diagnosed with kidney cancer.  I believe this stress finally kicked every thing in high gear.  Also, I have a sister that is type 1 diabetic. Another with psoriasis, and now Crohn’s.  I had no idea that these could all be linked in family history!

[AmyLue]

3 hours ago, Scott Adams said:

You may also want to be casein/cow's milk free for a while, as many celiacs also report having issues with casein, especially right after diagnosis.

Thank you! I am a huge milk drinker.  I did have quite a bit of milk last week.

[trents]

57 minutes ago, AmyLue said:

It has been a very long road to diagnosis and recovery.  Yes, I ended up severely malnourished, way closer to dead than alive.  

In November of 2021, developed diarrhea. Was diagnosed with parasite Cryptosporidium.  Treated and all was well.

I developed diarrhea again in March of 2022. By Mid April, I could no longer work. My doctors scheduled a colonoscopy/EGD, which showed no damage. March 6th I was admitted to local hospital, due to potassium of 1.9.  My mom has Crohn’s, so we really thought that is what we were going to be treating.  After week in hospital, on steroids, loose stools disappeared.  After multitude of stool and lab work, we thought maybe we were looking for Neuro endocrine tumors (NETS). 

I was sent to GI specialist, had endoscopic ultrasound and camera endoscopy…with no findings of damage.   For 2 weeks all was normal…then the stools came back with a vengeance.  This time accompanied with vomiting.  I was admitted again June 6th, gallbladder removed.   After week in hospital, they were able to get me into Mayo Clinic as outpatient.  During this time my husband had to push me everywhere in a wheelchair, I could no longer walk more than about 10 ft.
 

We saw first round of doctors on June 15th, including genetic testing (family hx of adrenal and pancreatic cancer too).  By June 18th I went to Mayo ER. Given fluids and sent back to hotel. The next morning, we went back to ER and I was admitted to Mayo hospital.  My labs were a mess.  At this time they found that I carried the celiac gene, and put me on gluten free diet.  Also had another scope, this time the biopsy showed almost complete villi blunting in small intestine.  My IgA and IgG levels were tested, but were low.  I was placed on TPN and given a diagnosis of “blood pressure medicine induced enteropathy”.  (BTW, I was only on BP meds for less than month when diarrhea started).

TPN saved my life!  July 2nd I was released home!!!  

Sorry for the long reply, but this was a very long road. My local doctors and surgeons were amazing!  I had standing orders for labs and fluids in between hospitals stays. My family history complicated things too!   Mayo still isn’t wanting to completely diagnose Celiacs, but they are finally starting to lean that way.

Looking back, I had signs for years, but didn’t put them together.  Carbs bothered me, which I now know was truly the gluten.  Weight gain, pain in joints, tired sluggish feeling. Bouts of loose stools after a weekend of beer.   In January of this year, I broke my sternum. End of February, my husband was diagnosed with kidney cancer.  I believe this stress finally kicked every thing in high gear.  Also, I have a sister that is type 1 diabetic. Another with psoriasis, and now Crohn’s.  I had no idea that these could all be linked in family history!

What's really unusual about your story is that between March and June of 2022 you went from no villous atrophy to almost complete blunting. Did they do a biopsy with the first EGC? Such an ordeal! You have truly been through the ringer! Thanks for the narrative.