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How to Self-Advocate for Your Health - Part 2

How to Conduct Research to Uncover the Source of Your Symptoms


[Hint: It's not that complicated!]


In this blog I want to share with you the principles that I use in my process for researching health causes and solutions. I can't stress enough the importance of finding high-quality and credible information, but I'll get to that in the next blog. I am going from top to bottom here, approaching things from a framework, principles, and then detailed steps approach.


So from Part 1, now you know how to frame your research holistically, that is, you know you need to look for self-care, lifestyle, and treatment strategies, focused not just on symptom-management but more importantly that are anti-inflammatory, and possibly regenerative. I also discussed how in our healthcare system, most of the self-care and lifestyle strategies will be self-financed (some might be covered by your private health benefits plan), and most treatments (but not all) may be covered under your provincial health insurance (with exceptions such as medications and most regenerative approaches).


There are 2 super important principles about your body you need to understand to ground your research to find solutions:


  1. Everything is connected. Nothing happens in a vacuum. Most likely, if you have multiple symptoms, they are all connected, either causing one another or caused by a common biological mechanism.

  2. What you see is not what needs to be solved. The symptoms or disease you experience did not happen overnight. They are an outward manifestation of something that has been forming inside your organs over a long period of time, i.e., the root cause. Think about an iceberg: you only see the tip, but the part under the surface is much, much bigger. Same goes with the body, and any problem really, even at the workplace. (Burnout isn't a problem to be solved. Bad leadership is. Outdated workplace policies are, like forcing everyone back to the office full-time. Harassment and bullying are. Discrimination and inequality are. etc.)

Examples of well-understood disease root causes are HIV causing AIDS, bacteria/pathogen-carrying ticks causing Lyme disease, insulin resistance causing Type 2 diabetes and insulin insufficiency causing Type 1 diabetes, etc.


Usually when you look for connections between your symptoms and/or biological markers, you get a clue as to the root cause. The other thing that it does is simplify which of your symptoms might be the target, so you don't have to manage multiple things at once with individual pills or creams for individual symptoms. Here is an example of how to apply these 2 principles to show you how this works:


Look for Associations


Let's say you have an itchy spot on your scalp that you've had for years, and it flares up once in a while and spreads to your whole head, neck, and arms. Recently it's gotten consistent and it has really been bothering you. Maybe it's impacting your quality of life and self-image because you're always scratching and it's causing dandruff and bleeding and it's a bit painful. Maybe it's even impacting your sleep.


Now let's apply our first principle: Everything is connected. Assume that it is not in isolation. So, what else might be going on in your body? Are there other symptoms (even if they are less bothersome)? Are you also experiencing constipation or diarrhea or stomach pain? Are you gaining some weight? Are you feeling depressed or anxious? Do you have headaches or heart palpitations? Do you have allergies and sneezing and runny nose or watery/itchy eyes? Do you have joint pain or muscle aches? Are you tired more than usual? Are you entering menopause? (late 30s or early 40s and your cycle is changing?) What about in the past, did you ever have prediabetes or gestational diabetes, or had polyps removed or any other surgery?


Let's say you also have occasional headaches or migraines, and you also experience constipation once in a while. So, now you would look for associations between itchiness and headaches, itchiness and constipation, and headaches and constipation. Do you see how those get triangulated?

Associations do not point to the root cause necessarily, but they give you clues. For example, let's say you put in the google search bar, "itchiness and headaches". You get results as follows (see pic) and when you scroll you look for themes that come up often. For example, what I see is "histamine", "allergy headaches", "hives and migraines", as well as an odd one, "fibromyalgia".


(I also see more serious things such as "leukemia" or "mastocytosis" but I am going to ignore those for now because I want to look for the more common cause, not the rarer cause, at least to rule it out.)


Don't do anything with these results yet, just note them down somewhere in a google doc, along with the links (bookmark them), so you can come back to them later.


Next you're going to look for "itchiness and constipation". This time the results show such things as "itchy gut nerve", "anal itching and digestive disorders", "irritable bowel syndrome", and "gut-skin-axis". Again, note this down in your google doc with the links that you've bookmarked, and come back to it later.


Next, you look for "headaches and constipation". This is where it gets really interesting. I see some independent associations, but now I am also starting to see some connections to other results that I've found in my previous searches, as well as clues to other root causes. What I see is, "constipation and headaches in women" (i.e. they are both more common in women, so now we know hormones possibly play a role), "stress", "dehydration", but also "irritable bowel syndrome", "celiac disease", and "fibromyalgia". Recall that we saw both "IBS" and "fibromyalgia" in the previous searches.


And don't limit yourself to text. Search for images too. This is what I get when I plug in "itching and headaches and constipation free images", courtesy of Just in Health, and Gluten Free Society (see pics below). This confirms the results from a couple of previous searches, namely, that "histamine", "celiac" or gluten intolerance, and generally gut health, has something to do with all of these symptoms.

So now that I revisit my searches and look at all my results, what I notice is that usually the articles and blogs point to constipation, or the gut issue, being the instigator for both itching and headaches. So this simplifies greatly my search as well as my actions, because now I know that if I resolve my constipation, I will likely resolve both my itching and my headaches (and maybe other symptoms that I've forgotten).


This is huge progress, and it wasn't even that hard or time-consuming, AND I didn't go down an endless rabbit-hole OR get scared into thinking I have cancer or an autoimmune disorder! I would call this a resounding success. You can tap yourself on the shoulder (if you can reach).



Look for What's Underneath

So, now we know that constipation may be the driver or target for our multiple symptoms, you could just stop there and take laxatives or other treatments to appease your constipation. The problem there is that it won't necessarily solve the underlying problem of constipation, and the headaches and itchiness might just keep going, and worse, new problems could pop up that are linked to the underlying cause.


The good news is that through our initial investigation, we have an idea what might be the cause for the constipation, so we can refine our investigation. Our earlier search indicated common themes of histamine intolerance, gluten intolerance or celiac disease, IBS, and allergies (which is related to histamine) may be root causes for the constipation as well as headaches and itchiness.


You can ask 2 questions here, but one is better than the other. The first question is, why does constipation cause headaches and itching? Answering this question may give you more clues as to what might be going on underneath, but it might just repeat what you already know. It might also be the wrong question, if in fact it is not the constipation that is causing them, but something else that is causing the constipation AND the others at the same time. (Of course you are welcome to explore both questions).


So an even better question is, what causes constipation in the first place? The problem with this question though is it is too broad - there are a million reasons you could have constipation. You have to limit it to a context, which is why you could leverage an AI tool such as chatGPT or Bing Chat. (The downside with using these AI tools is that they may not tell you their sources (chatGPT) and be out of date (chatGPT is up to date as of 2021), or they may only allow you a limited number of questions (Bing Chat). Moreover, they may be outright wrong or give you incomplete answers. Still if you use both and compare the answers, you'll get a pretty good idea for where you need to look next.)


You could type in, "what causes constipation, itching and headaches?" And then see what pops up and keep asking further questions, such as "why does constipation cause itching and headaches?" Or, if you are relatively confident with the possibility of histamine intolerance or gluten sensitivity as potential root causes, you could ask, "why does histamine intolerance cause constipation, itching and headaches?" or "why does gluten sensitivity cause constipation, itching and headaches?" or even, if you want to get fancy and look for more associations, "does histamine intolerance cause gluten sensitivity?"


You can always dig further into the other key words and themes that came up in your search, such as "fibromyalgia and IBS", or "fibromyalgia and histamine intolerance" or "IBS and histamine intolerance". You get the picture. Although you should limit yourself to the range of symptoms you actually have. If you don't have fatigue and joint pain, then looking up "fibromyalgia and xxx" won't necessarily be relevant for you and just take you down a rabbit-hole you don't need to go down. Since constipation is an obvious symptom of IBS, then it is reasonable to look up "IBS" and other things like "headaches" or "IBS and gluten-sensitivity or celiac disease", "IBS and allergies", etc.


Once again, keep taking notes of what you learn, and periodically step back and piece the different themes together. Always look for common root causes across your different searches. For example (this is based on my personal experience and research, but you can test this for yourself), you are likely to find that:

  1. IBS causes constipation, and can also manifest in gluten sensitivity and histamine intolerance. IBS is linked with headaches and itching.

  2. gluten sensitivity and histamine intolerance cause headaches, skin issues, and constipation (as well as many other symptoms).

  3. SIBO (small intestinal bacterial overgrowth) causes the majority of IBS

  4. you can test for SIBO with a breath test, and/or try the low FODMAP diet

  5. antibiotics or antimicrobials that target SIBO is effective in reversing IBS

Whether IBS causes gluten sensitivity and histamine intolerance which in turn causes headaches etc., or IBS itself causes headaches etc., is less relevant. You have a lot of information you can work with now.


What do you do with the information?

You have to decide at what point you feel like you have enough information to take some action. Taking some action can mean looking for solutions specific to the underlying root cause you think may be going on, or if you're a bit more conservative, you may prefer to take this information to your medical practitioner before you look for your own solutions.


For example, if you establish that it's possible you have either histamine intolerance, IBS, or gluten sensitivity and possibly celiac disease, you can ask your doctor how they could be tested or ruled out. You could look on your own, before you see your doctor, which tests you can request that can confirm those diagnoses and then ask for those specifically, or wait to see if your practitioner mentions them, and ask about them if they don't mention them. (Sometimes doctors don't like to be told what tests they should prescribe - they have big egos).


There are also things you can do on your own to experiment and "self-diagnose", that are low-risk. For example, if you want to rule out which underlying root cause you may have, you could start with the most obvious, which is removing gluten from your diet for a while, and monitor your symptoms closely to see if they improve. If there is no change, or only limited change, next you may want to try out a low-histamine diet, or get tested for allergies, including food allergies and sensitivities, and then remove the triggering foods/products. With IBS the low FODMAP diet is a well-researched and evidence-based medical diet that can help reduce symptoms (which also happens to remove gluten and other fructans-containing foods), so you could try that separately or add it in as well.


Of course, all of these take time and effort, so you have to be motivated and consistent, and get some support to make sure you eat enough nutrients and calories, such as from a nutritionist/dietician and a patient community dealing with similar issues or recipe blogs.


Once you have a self-diagnosis, you can go back to your doctor and review your detailed data you have compiled, or you can still request some testing. The problem with some tests, such as the celiac test, is that you have to eat a lot of gluten to develop antibodies in your blood, so if you do this after you have already removed gluten, and your symptoms have improved, you would have to reintroduce gluten and potentially face a recurrence of symptoms, just to get a test confirmation of what you already know you may have. Most doctors, when it comes to dietary and gut health, will not push for testing, since not all testing is covered by provincial insurance, and there is still the risk of false positives anyway. As long as you have a detailed log of your symptoms and you have done your own testing systematically and waited at least 2 weeks between the different strategies you've introduced, your doctor will likely act according to your "self-diagnosis". There may be no further solution he/she can offer you, but at the very least they can monitor your progress. Or, there may be some solutions such as with IBS and SIBO and for symptom management in case of flares. Or, maybe there is a referral to see a gastroenterologist, an allergy specialist, a neurologist or headache specialist, to rule out other more serious causes. Or you may want to ask to see a psychiatrist or check hormones, since stress and being female were identified as associated with those symptoms.


Regardless of where you go from there, this is much better than where you started from, which was, I'm itchy. Imagine having gone to your doctor just with that symptom. Chances are you would have left your doctor's office with a prescription for a topical steroid cream or solution, and not be any further ahead with your headaches or your constipation, and your itching would just continue to flare up and you wouldn't be any the wiser as to what was causing it. You wouldn't feel empowered to change it because you wouldn't have known what might cause it. Now you know what you can do to try to resolve your itching, AND your headaches and constipation!


Worse comes to worse: You're Still Better Off

Let's say you do the research and try all of these things and nothing improves. Is it all wasted? No! Because now you know so much more about your body. You have ruled out the most common causes of your headaches, itching, and constipation. Now you know there is something "rarer" going on, and with the help of your doctor and medical team you have started on an investigative path to find answers. You have advocated for yourself, and will need to keep advocating.


With test results, now you have even more to work with to find your own answers alongside your medical practitioner. Of course you're not the expert in all the various blood and urine and gut tests, but neither is your GP, probably. You can repeat the process we just did, but now instead of associating your different symptoms together, you will associate your biomarkers and your symptoms. For example, if you have low thyroid (clinical or subclinical) you can look up "low thyroid and constipation" or "low thyroid and headaches" etc. etc. You get the picture.


And if after years of investigation (with specialists and integrative and functional medicine practitioners) you are still no further ahead, there are resources out there, such as the Undiagnosed Diseases Network.



Ok, that's it for today (that was a lot!). I really hope this was helpful, and next month I will write some more about how to assess the quality of the information you find to make sure you are not led astray by non-evidence based solutions and either are harmed, or you just waste your time and money seeking out wrong answers.


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Contact me below if you would like me to do personalized research for your health issues, or check out my Self-Advocacy Toolkit.


Note: I am planning to make this blog series into a course. Please contact me in the form below if you are interested!





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