EGD/ colonoscopy biopsy in, confused!

[Tharrell]

I just got my biopsy results in and again I get biopsy results are fine see you in three years!

Quick history: almost two years of stomach pain on palpation, vomiting (mostly resolved due to Iberogast), early fullness, extreme nausea after eating, extreme weight loss (I'm down to 118lb from 165 most of it since January).
Was suspected of gastroparesis, but negative on test. Was constipated for 1 year and treated with linzess. Was weaning off that and suddenly went to complete watery diarreah. That triggered the colonoscopy and EGD.

The report I got on the day of proceedure was:
Colonoscopy six polyps with hemorrhoids in and out
EGD : esophagus no gross lesions, stomach patchy moderately erythematous mucosa found in entire stomach. Multiple dispersed small non bleeding erosions  found in entire stomach. There were stigmata of recent bleeding. Diffuse mildly scalloped mucosa found in duodenal bulb and first and second part of duodenum.

Then I get the biopsy results and note from doctor saying that biopsies were fine and showing reactive gastropathy. Repeat in three years.

First of all, I've been working with this doctor since February to figure out this problem. He is the one that found the nutcracker esophagus, he knows my history. I told him I very, very rarely drink alcohol. I told him I take NSAI's less than once a month! Literature shows that only 30-40% of patients who take nsaid's daily- emphasis on daily, will get reactive gastropathy. I'm celiac negative. I was increased on fecal split test indicating malabsorption.

So again, your test is fine-have a nice day? What about the clinical picture and what he saw with his own eyes? How much weight loss do I have to have for a 5'8 person before it becomes critical?

Anyone have an idea what those findings could indicate? I did find some info on gastroduodenal crohns, but I'm just confused!

[SjoGirl]

Based on my experience my advice is to pose these questions to your doctor in person. Ask, if it's not x then what other possibilities are there because something is clearly amiss!

Good luck.

[Tharrell]

Oh I definitely will. Sad thing is, first available appointment I got was July 18th. I did message him, but he is very bad about replying!

[irish]

Did anyone ever consider that the infections in your lungs could affect your gut./ When you swallow all that crud I would think that your GI tract would be nauseated and upset and weight loss would occur.

You have kansasii which is a noncontagious tuberculosis plus the mold infection in lungs. You speak of the junk that you cough up and I can't imagine that one of these docs wouldn't put two and two together.

I have had a generalized redness in my stomach at one time and in my esophagus another time. It was considered to be a case of inflammation from reflux and had to increase my medication. I take omeprazole twice daily at times but always once and then take a zantac at other times for the second dose.

Will go to page 2 Irish

[irish]

Have you ever had a culture and sensitivity of the biopsies that were taken. It might show if you have an infection in the lining of your stomach. The other thing an old GI doctor told me years ago is that when the colon and stomach are upset for any reason they will act like a pipeline and either quit moving stool or they will shoot it through fast. I have found this to be true.

Sometimes we try to make things too complicated and it will take something rather simple to stop the problems. First of all, taking Carafate on a regular basis could help you considerably. The other thing that night help is an antidepressant. There is brain/gut interaction that really does hold true. When we take an antidepressant it changes the chemicals in our brain which in turn can help change the strange things going on in our gut. We can still have our same diseases, but the symptoms will decrease with just a little help that isn't terribly complicated. Hope you find something that helps. Good luck, Irish

[Tharrell]

Hi Irish! I forgot to mention it was negative for h.pylori or whatever it is called.
I see pulmonologist Monday and infectious disease dr again Friday. My latest sputum fast test came in negative for m.Kansasii. Haven't heard about the lung ct scan. I did message both doctors the biopsy and findings results. Pulmo told me she will discuss with ID doctor about all that and negative sputum culture.
I just want an end to this, gain weight and be able to sit back from dinner with happy thoughts, not feeling sick to my stomach. Oh dear, I'm whining!

[Tharrell]

My stomach troubles started more than a year before the lung infection, but you are right, it would not help matters at all!

[gurs]

What kind of testing was used for your gastroparesis test?

So sorry your going through this. I just went through all my EGD/colonoscopy and Gastric emptying test. I do have gastroparesis, but they found nothing else, which was surprising to me but severe gastritis, hiatial hernia, reflux etc
I also found that my estrogen cream really sets off my tummy too about 15 minutes after I use it, and of course, certain
foods are bad triggers like dairy and raw veggies.

Hope you can find some answers.

Gursie

[Tharrell]

Hey gurs, the gastric emptying test of course. It only showed that food stayed in my esophagus for two hours, esophagram did show everything I consume immidiately rises back up my esophagus despite the clapper (?) in my stomach to esophagus is working properly.
My " gastroparesis" is more accumulative. The more I eat during the day, the more my stomach slows down. There is no test to prove that, so I guess it doesn't exist.
I had sent a note to my oncologist to update him and he mentioned doing a gastrin test. At least he keeps thinking!

[irish]

Just went through your meds. Have you tried ruling out medications??? My hubby was on Spireva for a long time and he ended up having a rash and itching that was driving him crazy. We did everything we could think of and so did the doc. He was on antihistamines and that didn't even do the trick.

One day I sat down with my nursing medications book and started researching his meds in depth. Low and behold the Spireva rang a few bells. He quit the inhaler and within a week he was rid of all those itching, etc. symptoms. Just a thought. We can have some weird stuff that happens from meds. I couldn't take protonix as it gave me severe gastric upset and slowed my gut way down. Good luck with solving this problem. Irish

[Winnie]

I am negative for celiac through biopsies but not bloodwork and it was suggested that I try a gluten free diet.  I don't have the typical symptoms and will never be sure of the diagnosis but do feel better eating a gluten free diet.  It took 5 years but my duodenum is not scalloped anymore.  It may help.  Try looking at celiac.com for help.  I believe diet and genetics are the root cause of auto immune disease.   I have not found much help from gastro doctors unfortunately. 

[Tharrell]

Hi Irish, I'll look into the medication connection. Shouldn't be to difficult.
When symptoms started I was only on the inhalers, requip, cevimeline, ranitidine twice a day and prescription Nexium twice a day with the  medrol dose pack once in the blue moon. I had already lost my awesome rheumy and was deemed to have fibromyialgia only though it took the new rheumy four visits and a bunch off money to tell me what he really thought. Glad I don't have him anymore!  Before my rheumy left and symptoms began I was on Humira and methotrexate. But those are long gone from my system.

Winnie, my blood tests for celiac are consistently negative. I did read that all that scallops is not celiacs. Can happen in gastroduodenal crohn's, immune deficiencies and some other stuff.

Right now I'm just trying to calm my stomach and stop it from bleeding again.

[gurs]

Tharrell,

Was your test the 4 hours? I didn't eat the day before because I was afraid I wouldn't be able to get down the eggs/toast they gave me etc. My 1 and 2 hours were ok, it was the 4 hour marker that was bad. My esophagus and intestines don't function right either, everything seems to sit and not move. Its really a nightmare and most GI docs don't get it. I guess its part of my/our CNS issues that rarely come up with Sjogrens. I know many of us have this and its extremely debilitating as you know.
I hope you can find some answers.

Gursie

[Tharrell]

Hey gurs, at the four hour mark all the food was gone from my stomach. As I explained to the doctor, the test does not show my true day to day workings of my stomach. I came in, as you're sopposed to, after fasting, so stomach was rested. My symptoms are cummulative. If they could test me in the evening after I ate several meals, or even afternoon, it would be a different story.
My nutritionist had recommended to eat multiple small meals and a mechanical altered meal at night. I told him after breakfast, snack and lunch I was ready to vomit after lunch instead of after dinner. The mechanical altered dinner, meat and potatoes ground up with liquids, just ensured it came up and sit in my esophagus that much faster. So he told me to drop the snacks, but keep the mechanical altered food. I can't do that. Period. I was so sick to my stomach that it took three days of only broth to reset my stomach.

[gurs]

Sometimes the tests are not accurate. I know what you mean. My health/stomach changes from minute to minute. At the time of your testing, your tummy could have been functioning somewhat. Just curious, what did they give you to eat? They gave me to pieces of toast with Jam and two scrambled eggs. I joked that this is usually my day's worth of food. It was so much, no wonder I didn't process it! ha! I don't really eat breakfast. I eat a piece of banana and half gluten free cracker mainly to take with all my meds and supplements. Lunch time is when I really eat. I actually eat too much and then don't eat the rest of the day. If I do get hungry later, I eat a small snack. I know they say to eat smaller, frequent meals, but everytime I eat, my stomach bloats up with pain and gas so that is why I started eating heavier at lunch, because Im home and then I knap afterwards.

Sure you have gastro though.

gursie