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What is causing my husband's gastric dumping - NOT caused by surgery?

I brought my husband to the emergency room on Black Friday of 2018, though probably should have gone on Thanksgiving.  We have been back at least six times since along with countless doctors appointments and tests, and ten months later, still have no answers.  He has not had stomach or esophagus surgery.  He has had back surgery, a major hematoma related to a back surgery bleed, and an appendectomy to remove a worrisome polyp found at the entrance to his appendix during his first colonoscopy.
He is a chronic pain patient and has been treated by a variety of doctors for pain medicine related constipation.  Nothing has helped and when he presents to the ED, he is treated like crap due to the stigma of pain medicine.  He has never asked for more pain medicine and would like nothing more than to stop taking the pain medicine but unfortunately, there is extreme prejudice when you are a chronic pain patient that it is all the doctors want to see - even if your issue is unrelated.
So after "ass-uming" an incorrect diagnosis, we have lost all kinds of time, during which he has gotten progressively worse.
He has had every imaging test you can imagine.  He has had every lab test you can think of.  He has seen oncology (white and reds in normal levels) hematology (spleen is not enlarged though is on the larger size of the acceptable range - size has changed at all over the years), general surgeons both in NH and Boston, MA to see if adhesions from unrelated surgery are causing organs to not work properly or are restricting blood flow, colorectal surgeon to see if the appendectomy caused his issues, gastrointestinal who have done additional colonoscopies, endoscopies and found nothing and finally, our PCP more times than I can even process.
His symptoms are:  Weight loss even though he is eating, significant pain in a spot just below the left side of his rib cage, extreme fatigue - normally active, he cannot get off the couch, extreme bouts of sweating, low blood pressure at times as well as very high blood pressure at others, dizziness and a horrific anxiety - that feels as though it is originating from his body vs. from worry from his head.
The finally did a gastric dumping study and it was found his stomach is emptying in 90 minutes vs. the typical four hours.  Keep in mind, he takes prescription opiates for chronic pain which slows the system down, so it is probably happening at a rate faster than that.  So it turns out that all of this assuming by the mostly unkind ED doctors that he needed a bowel prep due to his prescription pain meds was exactly the opposite approach to what he actually needs.  Things are moving too quickly through his system and they have just been prescribing meds to make things move even FASTER...
Of course no one tells us what to do to manage the symptoms, so I have been looking on the internet to see what to feed him.  Then the Gastro's doctor's office, who has given us no management tools or advice shames me for looking on the internet!!! He has lost 80 pounds, not by trying during this time.  Finally, after calling for the millionth time, the gastro office anecdotally told us to eliminate carbs, and eat six small high protein/fat meals a day.  Not sure why I had to pull this out of them vs. having them proactively making recommendations while we are trying to figure this out, to keep him as comfortable as possible. He just had a full endocrinology workup - everything looked normal.  I understand people get this dumping issue due to stomach or esophagus surgery...he has had neither.  Our healthcare system is Southern New Hampshire Medical Center who have more or less washed their hands of us because they can't figure this out.  Other than his PCP and a very awesome, kind nurse in our PCP office, we have no one helping us to figure out what this could be and how to fix it.  We are being referred to Mass General, Boston's gastro department bust of course, have to wait an eternity to get in there for an appointment.
If you have seen all the specialties in one healthcare system and collectively they still don't have any answers, why wouldn't they all have a powwow to talk among themselves and discuss other courses for us to pursue using their collective knowledge?  As one system, why don't they communicate between each other to help undiagnosed patients?  We really need some answers, it is NOT in his head and I am so sick of being shunned by healthcare professionals because we do not fit into an easy "box".  And we live in an area of the country that is supposed to have excellent healthcare.
If you have any ideas we haven't explored, we are open to and would greatly appreciate any suggestions you can think of!!!  Pretty desperate here!!!
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1756321 tn?1547095325
My first thought was too much adrenalin. Incidently, I read an amazing article on adrenalin that was being posted on various Facebook groups. Google: "This college dropout was bedridden for 11 years. Then he invented a surgery and cured himself"

Helpful - 0
Thanks for your input - I will definitely check out the story you referenced.

And that is exactly what I thought as well which is why I was sure it was a pheochromocytoma.  When the test came back negative I was shocked and that is what prompted me to ask for a full endocrinology work up.  A bit more medical history for you to know why I think so.

12 years ago before his first back surgery, we were given the option of surgery or a cortisone (actually depo-medral) injection to give him relief.  Of course we chose the injection vs. surgery.  We had no idea at the time that steroid psychosis was a thing or that it was something we should be concerned about.  We also didn't consider that my husband, a very active health nut, had never had a steroid of any kind in his life.  He had been very healthy his whole life.  3 hours after the injection, he was "amped" and not in a great place.  He had no mental health issues and was a finance executive at the time managing stress, family, a home and a big job perfectly.  After the shot he was really "sick" unlike anything I'd ever seen.  They took him inpatient, medicated him heavily and said he just had a breakdown and acted like I was "crazy" for even suggesting this issue had anything to do with the injection.

I did what I am doing now - lots of research to figure it out myself because I KNEW it HAD to be related.  I stumbled upon steroid psychosis and Jane Pauley's story, printed it out and brought it to the hospital.  The doctor's still dismissed the idea.  They literally laughed at me.
We lived in a different state then and I took him from that hospital and brought him to a teaching hospital/academic medical center.  The Dean of Psychology for the school/Chair of the department agreed with me and proceeded to treat him with medication while the steroid worked out of his system.  That MD did not take cases himself, but he took my husband's because it was so unique and pharmacological driven mental health issues was a specialty area of his.

At the time I asked them to test him for Cuching's disease - an over stimulation of the adrenal gland which they said he didn't have.  That is when his previously low blood pressure became so high, that was part of the reason they wanted to keep him inpatient.  He was a ticking time bomb.  Not to mention , he couldn't sleep, or ever get to a resting, relaxed state.  He could get on our exercise equipment though and exercise at a superhuman rate - even as healthy and active as he was previously, it was triple the intensity and time he could use those machines previously.  (adrenaline!!) Of course I didn't want him to do that with his blood pressure being so dangerously high.  I thought, can your adrenal gland be turned on and not know to turn off?  So all of this said, I really do think his adrenal gland has to be a major part of all of this.  I don't want to be so stubborn about it though that I am not open to and therefore missing other possibilities.
Poor guy has been through so much.  In spite of the endocrinology panel coming back negative, I am going to also make him an appointment today with Mass General's endocrinology department.  Your post convinced me it is something we need to do.  Maybe they have  more specialized tests they can run to help get to the bottom of this.
Misspelled - I meant Cushing's Disease.
Wow - what a powerful article.  It has given me a lot to think about, and most importantly....HOPE!!  Thank you for sharing Red_Star!
No worries. :) I have numerous health issues including 5 autoimmune diseases. ..all of which I pushed to diagnose. Two of them rare and one 100% fatal if not treated. I also thought I had Cushing's disease and did all the tests. During my research I found the CushingsMoxie website on cyclical Cushing's. In my case though I figured out my symptoms were a combination of severe insulin resistance and Hashimoto's thyroiditis. But anyway, the cyclical part is something to consider with adrenaline. You might need numerous tests to see a spike in adrenalin.
First, I am so sorry to hear that you are also dealing with so much.  It is no wonder you are coming up with such great ideas.  I just secured the endocrine appointment...November!  Hopefully something will open up that we can grab before then.  I can't imagine what you must have had to go through to get to your 5 diagnosis.  Again, you have given us great ideas that we hadn't considered (no idea there WAS a cyclical Cushing's) and hope that if you could get to your diagnosis, then maybe there is a light at the end of the tunnel for us too.
It can take time and a few wrong turns to get a diagnosis! The left side under the ribcage is the stomach. Might be worth having an endoscopy to see what is going on in the stomach. I found this interesting article - Gastric Emptying from the Nutrients Review website...

"Factors that STIMULATE Gastric Emptying

1. Food Factors:

The volume of either solid or liquid foods [40,41,42].

Small particle size of solid foods [85,86].

2. Body Factors:

Moderate exercise, like walking [43,44] or moderate cycling [45]

Hypoglycemia [48,49]

Functional dyspepsia [51,52,53]

Duodenal ulcer [54,55]

Alcoholic neuropathy [56]

Certain gastric (stomach) operations, such as partial surgical removal of the stomach (gastrectomy) [57] or vagotomy [58], or gastric bypass (bariatric surgery) [59] or gastrin-secreting pancreatic tumor causing multiple gastric ulcers (Zollinger-Ellison syndrome) [60]

Dysfunction of the autonomic nervous system [62]

Cyclic vomiting syndrome in adults [63,64]

3. Drugs
Drugs that stimulate gastric emptying: azithromycin, beta blockers [10], bethanecol, cisapride, clarithromycin, diazepam, domperidone, erythromycin, metoclopramide, naloxone (used to stimulate gastric emptying in critically ill individuals treated with opioids) [11,69], prostaglandine E2 [11], pyridostigmine (used in treatment of diabetic gastroparesis) [11,66].

H2 antagonists ranitidine, famotidine and nizatidine may or may not stimulate gastric emptying [70,71,72,73,74,167].

Stopping smoking can be associated with faster gastric emptying and thus with decreased satiety [47].

Symptoms of Rapid Gastric Emptying (Dumping Syndrome)

Early symptoms (10-30 minutes after meals) include bloating, nausea, vomiting, abdominal cramps and explosive diarrhea [60].

Late symptoms (1-3 hours after meals), which result from reactive hypoglycemia, include flushing, pale, clammy skin, dizziness upon standing (orthostatic hypotension), headache, impaired consciousness, increased heart rate, palpitations, hunger, tremor, fatigue and sleepiness [57,60,61,75].

Diet in Rapid Gastric Emptying
To avoid: easily digesting carbohydrates (sugars, baked goods from white bread, potatoes, white rice), milk and other dairy products; also avoid liquids within 30 minutes after meals [57,145].

To add into the diet: dietary fiber that slows gastric emptying: pectin, guar gum, glucomannan [76,96,145]."
707563 tn?1626361905
I am NOT a gastro expert, nor a doctor, but some things come to mind.

Perhaps the rapid dumping is just one thing that is happening, and not the only cause, just the only thing that's been found.

You mention every lab test we can think of - what about food allergies? Diabetes? Thyroid? For the thyroid, you need these tests:

Free T4, Free T3 and TSH to test actual thyroid function.  

To test for Hashimoto's, you need antibody tests, Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb).  You need both of the antibody tests because some have one or the other and some have them both.  

What about Celiac Disease?

Is he on the opiates for his back? Are there other options? I don't know what his back issues are, or if a spinal block would be appropriate for it, or with his current problems, but ask for a referral to a pain specialist and see if there are other alternatives that may help. If there are, he will likely need to taper from the opiates - don't let anyone cut him off cold turkey. We have an excellent Addiction forum that can help with this process. (I'm not saying he's an addict, but they know all about withdrawal and tapering.) You can find that here if you ultimately need it - https://www.medhelp.org/forums/Addiction-Substance-Abuse/show/77

As soon as I saw you were in Southern NH, I thought Mass Gen. I'm glad you are going there.

Start collecting all his records - all his tests, all his ER visits, etc. Make a timeline - when it started, when it's gotten worse, all his appointments. Make a list of all his symptoms, even if they seem minor or insignificant. Note his activity (or inactivity). If it fills 3 notebooks, do it.

Start tracking his symptoms and food. See if anything makes it worse or better. There are a bunch of food tracker apps you can use. Many you can add notes to, so you can track symptoms after. Some allow you to print reports. Try a few and see if those work for you.

Keep us posted as to how he is, and what you find out. I hope this helps even a little.
Helpful - 0

Thank you so much for all of your ideas and just for taking the time to give our situation some very deep thought!
Many great ideas here which I will respond to individually.
1) Completely agree - gastric dumping may or may not be the cause, or the only cause.  Hopefully the experts at Mass General can help us figure this piece out.
2) No food allergies that we know of.  We have done a dairy elimination and a gluten elimination even though he tested negative for Celiac.  I understand that folks who don't have a gluten allergy can have a pretty major gluten intolerance so it was worth a shot.  
Neither elimination had any effect.
3) He does not have diabetes - they had him do a glucose test and his sugars are great.  Just to make sure, I bought a home monitor and had him regularly test his fasting sugars - in normal zone consistently.
4) Thyroid is interesting - not sure on this but will explore it.  They said thyroid was part of the "full endocrine panel" they just did but I am not sure what was and wasn't included.  I will drill down on this and see if the specific tests your suggested were included.  Happy to have something new here to look into!
5) Not sure about Hashimoto's - will see if that has been tested and if so, that both tests were done as you suggested.
6) He has been on the opiates for ten years for his back and takes them as prescribed.  Last September - he went to the doctor and asked to be tapered - he wanted to get to at least a lower baseline if possible and was successfully tapering when this all started.  HE initiated the conversation.  He was and still is down about 25% based on the plan his PCP came up with when all of this started ~ 3 months later.  Makes me wonder if the opiates were masking whatever this is for a longer period of time.  He is in so much pain with this mystery illness, they don't want to taper anymore right now because his blood pressure is in the danger zone because he is in so much pain from this.  Priority #1 is to go back to tapering once on the other side of this.  He HATES taking the opiates but right now his PCP agrees they are a necessary evil.  He is "addicted" by nature of the medicine itself but doesn't take more even with the additional pain he is experiencing.   I monitor it closely - we both have a very healthy fear of the medicine.

I will take your advice and do exactly what you suggested, make a complete file with dates of everything.  I have not done that and really rely on his patient portal through his EMR, as 95% of his care has been under the umbrella of one system.  That is a excellent step for me to take....Great suggestion!

What I thought it was is pheochromocytoma.  He has all of these symptoms - he seemed textbook.  And with these adrenal gland tumors, they can dump adrenaline into the system, creating anxiety for no reason and potentially affecting other body systems (like speeding up the stomach or gastric dumping).  He did the 24 hour urine - it was sent to the lab that runs these tests in Utah and it was just 1/10th of a point over the "normal range', which the doctor's say is negative.  I wonder and will ask at Mass General if the stomach dumping issue could adversely effect the test results for this?  I still feel there could be something there.  In the meanwhile I will get more info on what if any thyroid tests were done.
Thank you so much for taking the time to help us!!!!  I will update when I have more info - hope we can help others from having to go through this ordeal.

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