I need some help diagnosing a gut health issue and have no idea where to start

The Coffee Shop
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I’ve had an increasingly severe problem with my gut going on several years now. Symptoms come and go in waves and range from extreme lethargy that last for days to chronic stomach pain, loss of appetite for several days, vomiting, and a general immune system akin to an AIDS patient. I have two young kids, and a wife that works in a hospital so I would imagine a lot of bugs coming and going through the house but I get hit by them all and it takes me a long time to recover from each one. When I’m struggling with this I feel like I get, maybe, a couple of hours of decent energy a day and the rest of the day I just feel like shit.

A month or so ago I ended up in the ER with extreme stomach pain that struck in the middle of the night. I spent a total of 36 hours waiting in the ER over 3 visits (canadian healthcare system ftw…) only to be given a blood panel and CT scan and be told there’s nothing wrong with me. Dr said I had ‘immaculate blood work’. I asked about an H.pylori test for an ulcer but they wouldn’t perform one as that isn’t an emergency service.

I don’t have a family Dr and it’s impossible to find or access one in my province. I might be able to find an NP. Or, I may be able to get a telehealth appointment with a Dr but the issue there is there is no follow up with the same Dr and those services are quite disjointed and generally just used for referrals.

Aside from ruling out an ulcer, I don’t know what to ask for, what to look for, or what low hanging fruit I can start to address, and in our healthcare system if you’re not in need of emergent care you’re generally pushed aside unless you really advocate for yourself. I just don’t know how or to whom I should escalate this to as the few times I’ve been given a cursory once over and ambivalent shoulder shrug then sent on my way.

Part of the problem is on paper I’m in excellent health. I’m 41, still lean and fit, I rarely have a drink, don’t smoke, very conscious of limiting processed foods and eating well etc. I feel like I tick off most of the lifestyle boxes, aside from maybe quality sleep and stress, but I have young kids so that’s somewhat unavoidable for now.

Are there specific tests I should ask for, or a referral to a specific specialist? Has anyone suffered from similar symptoms and found any relief? Any help would be appreciated, I’m really sick of feeling sick.

Before windywave mentions it, I’m not considering MAID nor have I been offered it (yet).

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Pay the money and see a doctor across the border?

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The one time I inquired about a healthcare procedure in the US was when I was comparing the cost of private hernia surgery in Alberta or Ontario to WA (private options don’t exist in BC). Both provinces were between $4500-6800 CAD. In WA I was getting prices of like $40,000 CAD for the exact same procedure.

I feel like this isn’t something that will be sorted in one appointment and with travel from the island that would get expensive and time consuming. I’m not opposed to going that route as a last resort though. I’ll put that right before MAID.

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You can buy an H Pylori test kit on Amazon for under $20. No idea about their accuracy.

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Have you tried eliminating certain foods from your diet to see what happens?

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Celiac?

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If it were me, I’d do whatever I could to get in with some sort of primary care provider and if they can’t work it out you’re at least on your way to seeing a gastro-enterologist to figure it out. I have no idea how the Canadian system works but it doesn’t sound like you could go straight to a specialist? If you can, that’s what I would do.

I would think sorting out a stomach ulcer would be pretty straightforward? In lieu of getting that diagnosis and medication, etc.I believe there are diet recommendations and such that may help. Have you looked into those?

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A referral to a sub specilaist service - GI General medicine is what you want in the first instance.

You need to see a Primary Care practitioner, arrive with a documented history and basically refuse to leave without a referral in to a secondary care outpatient setting.

It would depend on presenting diagnosis and referral criteria but some would have some diagnostics (e.g. a scope) pre outpatient but you have to get a refrral first

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So. Gut grief for several years. Leading causes include emotional reaction to life, celiac, inflammatory bowel disease, lactose intolerent.

Most people when I suggest it could be anxiety reject it out of hand. Some come back later and are open to suggestion. I would say I hand symptoms similar to your from about 14 to 18 only in later life did I realize I was an anxious kid. You can rule out lactose intolerant by going entirely lactose free for a few weeks and see what happens. Celiac can be pretty effectively ruled out with anti endomysial antibody test. I don’t get emerg docs refusing to do test that for problems that are not an emergency. It would save the system and pts if they would get off their high horses. Inflammatory bowel disease a fecal calprotectin would be quite helpful. Maybe hit an NP or walk in clinic and ask for the tests I mentioned.

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My wife had similar symptoms- turned out that she had developed an allergic reaction to eggs, which she was eating on the regular. Eliminated them and problem solved. Hope its something that simple for you.

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Thank you so much for the response. Some takeaways:

Interesting point about the anxiety. I do have issues with anxiety. I’ve done fairly regularly therapy over the last decade and that has improved management tremendously but I suppose still could be causing issues elsewhere.

Re celiac and lactose I largely eat the same things most days or have a steady rotation of lunches and dinners and sometimes go months without symptoms, high energy etc. Definitely game to try eliminating foods at this point though ( though my Italian side would weep for days if I became gluten intolerant).

I’ll follow up with the tests you recommended. I’m scouring google to find an NP that will take me. Walk in clinics effectively don’t exist here at the moment and have been replaced by ER. We have urgent care clinics where you call in at 8am for a same day appointment but they are largely overrun and booked for the day at 8am sharp and I’ve had no luck.

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Interesting. I have an omelette for breakfast almost every day.

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Yeah the big barrier here is access to any kind of primary care. It’s nearly impossible to get in front of a GP who will give you more than 90 seconds of their time. Can’t see a specialist without a referral.

Once you have a referral it’s generally not so bad following up with the specialist.

I’d just like some help arming myself with a better understanding of potential issues/tests I can ask about so, as Andrew said I can essentially stand my ground and refuse to leave without a few tests.

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I will defer to the MD for testing. If you can’t get testing done, some other things you can try

  • elimination diet - most common allergies are wheat, eggs, dairy. Eliminate all for 1 month, add in one and see if symptoms return. If not, add another, etc.
  • probiotics - science is iffy, but worth a try
  • American centers like the, Mayo Clinics, offer full body workups that aren’t cheap, but not $40,000. You are young and have a lot of life to live.
    -diverticulitis or gall bladder?

Edit - differ to defer

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Lots of thoughts so far. Spockman very helpful, and everything should be on the table.

I think based on your history, understanding pattern and cadence important. I often ask people to take me through a day, wake up to sleep. Describe good day and bad day. Interesting what you can deduce.

The waxing and waning nature is somewhat reassuring. Suggests triggers and flares vs. continuous systemic process. Pinpointing geographic location important. Is it stomach, small intestine, large intestine? Pancreas? Once you able to drill that down, then focused testing is much higher yield.

I think a journal for a few weeks/month would help. Trying to see patterns. Noting stool patterns with symptoms.

Ultimately, I do think a good and thoughtful Gastroenterologist is going to be the most helpful. But may be able to easily rule a handful of things out first while awaiting what seems a slow process to get there.

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I wish I were the type of doctor who could be helpful here. I agree with others about making dietary changes one at a time to see if you can figure out an allergy to eggs, lactose, gluten, etc. There are Lactaid pills that you could take probably w/o side effects if you do stick with dairy.
How’s your probiotic intake?
Keep us updated, ok? I’m sorry you’re having GI issues.

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You are an expert on your symptoms and the interventions that you have already tried, so I would prepare notes on that information.

Be prepared to discuss each and every symptom: what/ when/ how long/ how often/ how severe/ changes/ what made better/ what made worse/ who observed/ who said anything about the symptom/ what did they say/ how does symptom impact you/ are you prevented from doing anything/ impact on work/ impact on relationships

What interventions have you tried—go through what/when/how/ etc for each intervention.

Give the doctor enough information about symptoms and past interventions to allow them to justify further exploration. Help them to help you. They are the expert on ordering tests, making referrals, making diagnoses, ordering treatments— but all that relies on the information you previously provided about symptoms and past interventions.

At the end of your appointment, I think it’s good to ask about specific tests which you think might be helpful, but I would start with a very thorough discussion of other stuff first. Don’t feel rushed through that part and don’t be afraid to repeat yourself from prior visits.

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I used to eat eggs multiple times for breakfast and then we did some food testing - eggs were a definite no.

This was my first thought too.

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My wife suggested trying the Whole30 diet.

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My son had some similar issues. Turned out it was a bacterial overgrowth. They can do a breath test and treat it with antibiotics.

I have some similar issues but it is lower GI and affects my joints and muscles. They think it is some kind of autoimmune issue.

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