Peptic Duodenitis or Refractory Sprue

[NNowak]

I posted several months ago about my health issues 24 years after my Celiac diagnosis. My biopsies came back positive for Peptic Duodenitis, and my esophagus is extremely inflamed with a hiatal hernia - negative for H. Pylori.  Celiac antibodies are undetectable. Since an accident 3 years ago that resulted in multiple back fractures, rib fractures and a pneumothorax, my immune system has been on overdrive. Malabsorption with a 30# loss, multiple deficiencies, neurological symptoms and a worsening of black, watery stool. I’ve had problems with solid foods, abdominal pain and early satiety. 
 

Docs comments were that he didn’t find anything and wants me to go to U of M. His nurse won’t answer questions. have the biopsy checked for mast cells, or comment on the pathologists report. My follow up with the doctor is at the end of February. I’m supposed to continue Omeprazole, which I’ve been on since 2007 when I was first diagnosed with esophagitis. 
 

The research always includes celiac or refractory sprue with a diagnosis of Peptic Duodenitis. Do any of you have research to suggest otherwise?  I also have granulomatous changes in my lungs and liver, elevated lipase, high ferritin and atelectasis. So my immune system is clearly in overdrive with systemic inflammatory responses. 

Thoughts?  Research articles?

Thank you!

[Corinne D.]

I am in a somewhat similar situation, in the sense that I have ulcerations in my duodenum of unknown cause, with celiac in remission. However, I have none of your other symptoms, findings or systemic inflammation signs. My symptoms are strictly digestive. I do have some degree of malabsorption and an extremely limited diet - all I can eat at the moment is fish and beef, period. What is typical for me is an infiltrate of PAS+ macrophages in my duodenum and possibly the rest of my small intestine - I suppose you don't have those.

In my case, the doctors made sure they eliminated: refractory celiac (especially type 2, where the lymphocytes on biopsies are anomalous), chronic infections (bacteria, fungi, parasites, viruses), IBD's like Crohn's, autoimmune enteropathy, CVID, mast-cell disorders and many rare genetic diseases under the umbrella term "enteropathies" (unlikely, because extremely rare and usually active since early childhood). I'm still undergoing investigations very targeted on those macrophages.

Have you received a copy of the pathologist's report? It may give you some idea of what exactly they found related to your duodenitis.

[NNowak]

I haven’t received a copy of the pathologist report. I sent two messages to the office immediately following my scopes; the first included my report and pictures from the last EDG done by a different GI who has since retired, and the second was to ask specifics about the pathology report (Marsh category, refractory sprue, mast cells, parietal cells, eosinophils).  The nurse called and scolded me because they have other patients. She told me to wait until my follow up in 2 months. That’s why I left that practice to begin with, very unprofessional. They seem to want to withhold testing information. I’m not sure why. 
 

I've had the pain in the upper right quadrant of my abdomen for well over 10 years. I suspected something in the area of the duodenum, but the pain isn’t horrible-just there. The previous EDG was only for the esophagitis and didn’t go past the stomach. My pain at that time was quite severe and improved with elimination of dairy. But I’ve been on Omeprazole since then (2007), my esophagitis is much worse and the peptic duodenitis is now present. Difficult to discuss with the doc when my only contact is 30 seconds before sedation and scopes. His comments were that he found nothing to explain my symptoms and alluded to anorexia. However his notes state no prior colonoscopy and iron deficiency. My record clearly states B12/Folate and D deficiencies, high ferritin and I’ve had previous colonoscopies. 
 

Until I knew about the deficiencies I had zero appetite, nausea, and on a primarily liquid diet with chicken and fish. Meat and eggs are consumed daily making the deficiencies odd. The liquid diet is coconut milk with bone broth protein and collagen, and another shake with super greens. After B12 loafing injections for 2 weeks I was hungry and my headaches/migraines disappeared (had daily headaches since 2006). The B12 also stopped the black, watery stool. I try to take vitamins, but it’s extremely contrary to my esophagitis. The methylated D3 doesn’t seem as bad as the methylated B Complex for some reason. 
 

The B12 was started in September so I’ve felt about 80% better, regained 10 pounds and have been able to run short distances. That’s a win!  I just need to close the loop with these abnormal test results so I don’t relapse. I’m seeing a functional medicine doctor this week so hopefully she can put all the pieces together. She’s an anesthesiologist at her “day job” and decided to branch out due to the limitations of managed healthcare and insurance.

Thank you for your reply. I hope you feel better. 

[cyclinglady]

@NNowak

Was your endoscopy done at a hospital?  If so, you can order your records there.  (There May be a small fee, at least there is at my local hospital).   Waiting two months seems odd.  Your new GI either doesn’t think you have any concerning issues or he is incompetent.  

I once waited for a mono result for my kid.  She kept calling for a result and was put off.  Finally, I actually sat in the practice and demanded the results after waiting three weeks.  The office manager pulled me into her office.  She told me this one doctor (not our regular PCP) was way behind in his paperwork.  The nurses got the doctor to review and sign off.  The mono result was negative.  Anyway, sometimes a body hanging out in the lobby is effective when phone calls and emails (patient portals) are not.  I was very nice and played the “concerned mom” card.  A registered letter is also VERY effective.  It documents your concerns and holds up if legal action is required.  

Edited December 25, 2019 by cyclinglady

[NNowak]

The endoscopy was done at the EDG/Colonoscopy clinic in their office building. The GI said my labs had some “red herrings,” and recommended I go to U of M. I asked him about the granulomatous changes in my liver from my latest CT. He hadn’t read that, but said that’s another “red herring.”  So I’d like to have the correct information to adequately discern my next step. In my opinion, the findings explain my symptoms, and I just need to be monitored to ensure things normalize. The GI stated his findings don’t explain my symptoms. Does he have me mixed up with another patient, or is this yet another case of the doc cannot bother to look at the history or have a conversation with the patient?  I kind of feel like having a discussion with me while I’m sedated is somewhat unethical.

Either way the dots are not being connected, which is why I need the information. I will drive to the office tomorrow, and attempt to have a conversation with the practice manager while I get a copy of the pathology report. Good suggestion. Thank you!

[Corinne D.]

I hope you manage to get that report, it may answer a few questions. Perhaps you could consult with another GI if this one is not exactly helpful. You were saying you got a referral to another institution, isn't that right?

Your symptoms may be explained by the findings. But are you sure the findings are explained solely by nutritional deficiencies and that your duodenitis and esophagitis will go away just by supplementing? Also, maybe it is not a good idea to be on a PPI forever. I'm not sure I see its use, given that your esophagitis has only got worse...

Good luck and do keep us posted with what you find out!

[NNowak]

Hi Corrine,

I agree 100% about the PPI. I’ve been on one since 2007 and it clearly doesn’t help prevent or cure the inflammation. That was one of the questions I sent the nurse - who then called to reel me i had to wait 2 months to ask the doctor. The symptoms of peptic duodenitis explain the remaining symptoms not addressed by the B12 deficiency. Due to the docs (2 GI and 1 primary care) not bothering with the history in front of them, the pathology report is imperative.  One test that was missed in the biopsy was parietal cells - to determine if I have pernicious anemia like my sister and celiac grandmother. Important for malabsorption and cancer. 
 

They want me to go to U of M, but I believe all the information is already in front of them, they simply haven’t bothered with it. I see a functional medicine doctor tomorrow and she’s already suggested low dose naltrexone to address the chronic inflammation as well as reset the immune response. This is the first time I’ve gone to her clinic, but she’s treated me at a pain clinic for my back/rib fractures since June 2017. She’s seen the rapid decline in my health, 30# weight loss and visible loss of muscle mass. Her comment on the docs focus of an eating disorder is, “blame the patient is not a diagnosis.” 
 

Thanks for your comments!

[cyclinglady]

I have autoimmune gastritis (AIG) which was diagnosed during a repeat endoscopy/biopsies (healed from celiac disease though).  There is nothing to do for it (based on medical literature) until it starts impacting my ability to absorb iron and B-12 which can lead to pernicious anemia (what the heck, I already have Thalassemia, and dealt with iron-deficiency anemia all my life (but resolved when I put my celiac disease into remission)).    At least that is what my research has found.   If you know anything new, please share.  My doctor periodically checks my vitamin and mineral blood levels.  I absorb plenty through my diet and I take no supplements.  

I am trying to focus on healing (remission) all my autoimmune disorders by reducing stress, exercising and eating a real foods gluten-free diet as much as possible.  My AIG ebbs and flows as does my Hashimoto’s, but I do get relief or long periods of feeling great!  I take no medications other than thyroid replacement.  PPIs reduce acid, but I have too little acid because I have AIG, so I think they are way overprescribed and prescribed incorrectly without knowing the root cause.    I tend to have allergic reactions with so many meds (like ibuprofen and acetaminophen) so it is just not worth it for me. My doctors know I want to avoid any immune suppression.  Those meds are what my GI says are “the big guns”.  I am saving those or avoiding them for as long as possible, maybe forever.  I hope my strategy of exercise, foods and stress reduction continue to work.  

Curious to see if the naltrexone works.  Please report back!  

[NNowak]

Cyclinglady, I remembered about your AIG, and asked about autoimmune esophagitis/duodenitis with no response. I just drove to the GI office for my pathology report and to inform the practice manager about the nurses unprofessional conversation with me. That is why I left this office 20 years ago - my diagnosing GI had a horrible nurse. The manager was shocked and promised to address it, and gave me the report. Apparently everything the PA and I talked about testing for, was not done. There is no detailed report so I have no information on a Marsh rating, parietal cells relative to my B12/Folate deficiencies.......no details at all. Just an elementary worded diagnosis. So that was an entirely wasted procedure - because the docs cannot read the history right in front of them. I even told the nurse before the procedure to test for parietal cells. The lab won’t test for it if it’s not written, so all I know is eosinophils were negative, H. Pylori is negative and I don’t have microscopic colitis. That’s all he ordered. ?

It makes sense that a PPI wouldn’t be effective with an autoimmune response.   The immune response is not addressed by this chemical, rather other conditions are exacerbated or caused by a PPI. Seems incredibly irresponsible to me. 
 

Low dose naltrexone (LDN) has very little side effects (sometimes vivid dreams when you first start taking it) and it’s demonstrated success with reversal of the inflammatory response of the mucosal membrane. Typical dosage is 3-4.5 mg. The FDA approved use is for opioid and alcohol addiction starting at 50mg dosage. It’s quite fascinating how it works on the receptors involved in the immune response. I’ll definitely let you know how this works. 

Thank you for all your input!  While my diet is very good, I do need to do a better job with stress management. Hopefully my interval training turns into a 5k by Spring. 
 

Take care. 

[NNowak]

Update:  I followed up with my pulmonologist regarding the granulomas in my lungs and liver. He assured me it was not sarcoidosis or anything else to worry about, and asked what my liver biopsy showed. Apparently with high ferritin and granulomatous changes in the liver, a biopsy is the next step. I explained my experience with the GI, and he knew exactly who it was. Apparently that’s the reputation of that doc and his very large office. It was impressed upon me to follow up with a GI for the esophageal and liver issues - he was kind enough to refer me to a colleague. What a waste of 8 months waiting for answers and docs schedules to open up. 
 

At the insistence of my functional medicine doctor I’ve tripled my bone broth intake and sip on it throughout the day. The goal is to heal my guts so nutrients can be absorbed and the rest of my body can recover. Tests for additional deficiencies, digestive microbes, hormones, thyroid, liver and kidney function are being completed and analyzed. She’s recommending I get checked for SIBO by the GI, and avoid PPIs if possible. I just enjoyed two days without stomach pain - I can’t tell you the last time that happened (years ago!!).

Naltrexone has been pretty good thus far. I’m not on my max dose yet, and it will take a year to “reset” my immune system once I get to that dose. No side effects at all. 
 

My husband was so impressed with the FM doc that he went there for his stomach and (ahem) hormone issues. First thing she did was to put him on a gluten-free DF diet. ? With his severe asthma and dumping issues he should have been on that decades ago. 
 

So I feel I’m on the mend and headed in the right direction. Might never know what this lengthy flare was all about, but I’ll be healthier once I get over this hump. 

[Corinne D.]

Glad to hear you're doing better! It's also really good that you're going to see another GI doctor for your ongoing issues. Do keep us posted with your progress and any test results. Best of luck!

[cyclinglady]

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