Gastroenterology
I saw a Gastroenterology (GI) doctor yesterday.
I dragged Mr. MPB along with me, because who doesn’t want to spend their Valentine’s Day at their wives GI appointment? In all seriousness, I decided this was an important enough appointment that I wanted a second set of ears listening. And let me tell you, I am so glad I dragged him with me as we spent over an hour with the GI doctor.
First, the GI didn’t even bring in my chart with him – he didn’t need it! He knew my entire history from memory. He reviewed my reports from Dr. Braverman, which had a lot of genetic testing included in them (I didn’t bring the actual report to the scopes a few months ago). He went over my medical history again to make sure we hadn’t missed anything. He went over all my past colonoscopy and gastroscopy results (which are all considered normal). He acknowledged that based on all the testing he’s reviewed, I don’t have an ulcer, and probably never have. He acknowledged that he doesn’t know what’s going on fore-sure as I do have an odd case history and nothing is presenting in a text-book way, but he tends to think it is auto-immune related considering my thyroid problems, the recurrent miscarriages, my medically induced lupus, and my history of these stomach episodes.
Once we went over all the past history, we moved onto possible causes and diagnosis. The GI actually had a white board in the office, and was drawing pictures to explain what he hypothesizes could be going on and what the different testing options are! Seriously, he drew pictures to explain everything, and it was unbelievably informative.
He offered options for future testing and went over testing he’s not ready to do yet because the tests are way too invasive with little benefit. He also offered options for possible treatments, with and without some of the testing. He took the time to answer any and all questions we had. He listened. He gave us choices to consider. He went over possible diagnoses, and encourage us to do some more research on our own.
So, in no particular order here are some of the things that we are now researching:
- MALS – Median Arcuate Ligament Syndrome
- CACS – Celiac Artery Compression Syndrome
- Kink in small intestine
- Hiatal hernia
- Internal hernia
- AIP – Acute Intermittent Porphyria
- APLA – Antiphospholipid Antibodies Syndrome (Dr. Braverman tested for this and said I don’t have it, but the GI doctor isn’t convinced).
- SIBO – Small Intestine Bacterial Overgrowth
- SOD – Sphincter of Oddi Dysfunction
And to make things extra annoying here are a few more tidbits of info:
- Almost none of these are particularly easy to diagnose, especially as I am not presenting in a text-book way.
- A lot of the testing is invasive testing which the GI does not encourage at this point in time because the potential harm far outweigh the potential benefit.
- Some of these can only be diagnosed while experiencing a stomach episode, meaning testing right now would be pointless.
At the end of the day we’ve decided to do the following in the short term:
- More blood work – testing for a bunch of different things, including re-testing some of the things Dr. Braverman tested.
- Barium test – a non-invasive test to get a bit better picture of my intestines – will happen likely in the next few months. It’s not a great test, but it may just give the GI a few tidbits of info that will make it worth it.
- SIBO breath test – while it is not covered by my Canadian health care, it is relatively affordable and very easy to do. I even get to do it from the comfort of my own home.
And, assuming these results all come back fine (which we expect they will) we also have a long term plan:
- Wait for the next stomach episode to occur.
- When one occurs, I will call the GI doctor directly – he even gave me his direct phone number. GI doctor will order emergency testing. The emergency testing will be more invasive, but the end results could be well worth it.
So, for now, we wait and be thankful that when this happens next time I have access to a GI immediately rather then going through Emergency Room hell.
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My Perfect Breakdown 
Good lord. As IF you didn’t have enough going on…. I hope it turns out to be something treatable, and manageable! Gastro issues are so complicated because the spectrum is SO broad and there are so many options. I’m sure this is something they’ve looked at…but did they test for Celiacs or Crohns?
I was incorrectly diagnosed with Celiacs for over a year before doing the actual testing which showed I didn’t have it. Turned out I actually have an extreme dairy sensitivity that presents in bouts of terrible stomach pain (I have none of the normal lactose intolerance signs: gas and diarrhea, just bad stomach pain). It’s really bizarre. So I removed dairy completely = no more episodes.
Good luck! It does not sound fun, but I hope you get your answers and a treatment plan!
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ya I’ve been tested for celiac and crohns with scopes more then ones so we know forsurr I don’t have either. and as far as celiac goes, the one food that helps calm my stomach the most is white bread, so thank god I don’t have celiac!
i also have an appointment with my immunologost next week so I am going to talk to him about possible food allergies. The GI really doesn’t think it’s a good allergy but I figure it’s worth asking another specialist.
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Sounds like you’ve found a real gem of a doctor – that’s wonderful. I’ve been through the “something is extremely wrong and nothing makes sense and we can’t figure out what it is” with both my husband and my daughter, for different reasons. It’s so incredibly distressing and frustrating. I’m glad you have a plan and a good doctor!
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YAAAAAAAYYYYY! I mean, I know you don’t have answers yet or anything, but I am so glad that you’ve found a wonderful doctor who is actually thinking about your case, communicating clearly with you, and planning to follow up — that’s amazing!
I hope you get answers. And I hope you don’t have to go through much invasive testing to get them. Sounds to me like a Valentine’s Day well spent. 🙂
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I completely agree with the yaaaaaayyy! response to this. I am really rather satisfied and happy with his response to my stomach problem!
How was your valentine’s day zoning meeting? 🙂
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Ha ha… awesome! The zoning amendment passed by a wide margin. 95% of the people were there to support the dog boarding place. Very romantic outcome. 🙂
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Wow sounds like you finally found a good Dr – no diagnosis but he seems like he really wants to help. Hopefully you manage to figure something out before the next episode.
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I am so happy for you! I am now honestly wishing you have another episode sooner so that you can figure out what crap is going on and it can be done and over with forever!
I am sorry, its such a horrible thought, but I am just finally hopeful that you can get over all GI troubles!
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Both Mr. MPB and I had this very same thought yesterday! Who knew I’d be wishing for another episode sooner rather then later!
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Great news! Is it bad that I hope you have a stomach issue sooner rather than later just so they can find out what is going on?
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All things aside, It sounds like you are in good hands! I think that is a really important thing! I am *this close* to moving to wherever it is that you live just so I have access to decent doctors! But we’ll try Montreal first =)
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Wow that’s awesome that you got a great doctor!!!!! I hope you can get some answers soon. Good luck with your upcoming appts.
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Sounds like you’ve found a great doctor who is thorough and willing to help! I hope you get some answers and relief!
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I am glad you have a great doc, it took ten years to get my auto immmune diagnoses, lupus. You might want to ask your doc if seeing a rheumatologist, to just keep an eye on that side of things. It took my 3rd rhemy doc to diagnosis. The first one laughed at me. It almost cost me my life, I ended up in the hospital with both lungs FULL of blood clots. I too hope you can find out soon. Sending you hugs and prayers.
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Wow, he sounds amazing. I wish all medical professionals were like him!! I really hope he uncovers what is going on for you with as little invasive testing as possible.
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