Desperately Seeking Answers After Six Years
I kindly implore anyone who can shed light on my situation or provide assistance. For the past six years, my journey for a correct diagnosis has left me with nothing but a series of misdiagnoses. This ordeal took root after an extended stay in the United States, followed by my return to Sydney, Australia, where I found myself confined in a room plagued by black mould during the lockdown. While in the U.S., I endured episodes of food poisoning, lived with mould, and had to contend with a smoking environment, despite my repeated pleas for it to stop due to my struggles with breathing. Moreover, the food quality there contributed to my gastrointestinal issues. Upon my return, I began facing respiratory troubles and developed multiple food intolerances, resulting in unusual reactions to certain foods. I experienced symptoms such as shortness of breath, shakiness, heart palpitations, hot flashes, and persistent nausea. Eventually, I discovered that black mould had exacerbated some of my issues, but I continued to struggle with foods that I had previously consumed without trouble. Through extensive self-exploration and experimentation, I concluded that sulphur-rich foods, particularly garlic and onions, along with acidic, oily, and carbonated items, were primarily responsible for my symptoms. An upper endoscopy was performed, which the doctors deemed normal, although there is a disagreement on whether biopsies were conducted. I had specifically requested one, but my gastroenterologist claims he cannot access the results. The procedure left me feeling extremely ill and weak for a week, making me hesitant to undergo it again. During my hospitalization post-endoscopy, I was briefly evaluated by an endocrinologist, but the encounter was unprofessional as he made advances towards my mother and left abruptly after her rejection. He subsequently misdiagnosed me with anorexia nervosa, declaring my mother as an enabler. It took me a year and a stool test ordered by my hormone specialist to refute that diagnosis, which severely damaged my trust in healthcare. Standing at 164 cm and weighing 47 kg, at age 26 and as a non-drinker and non-smoker, I often find myself scrutinized by doctors regarding my food intake. However, after showing them my food diaries, they generally fall silent, as I consume more than most healthcare professionals I've encountered, including substantial meals. The best responses I receive are suggestions to address my anxiety, perhaps consider returning to contraceptives (which I had hoped might help with weight gain but did not), or dismissing my symptoms based on the results of the endoscopy. Even though they claim no reflux was observed during the procedure, I hold strong reservations about whether they performed it correctly, given their inclination to prescribe SSRIs under the pretense of my anxiety and presumed anorexia, while I have no documented results verifying anything from the endoscopy. Additionally, they asserted I was not gluten intolerant, despite having been diagnosed with it at 12 years old. My dietary restrictions are a direct consequence of my health issues, and I assure you this isn’t just about anxiety. I am coping with Complex PTSD and Panic Disorder, but I am well aware of the distinct nature of my physical symptoms. Recently, I was diagnosed with Dysautonomia and possibly hypermobile Ehlers-Danlos Syndrome (hEDS), which are known to be associated with gastrointestinal conditions, though the specifics remain unclear. Furthermore, I experienced silent reflux during infancy, which was misdiagnosed until it caused severe damage to my oesophagus and led to extensive bleeding. As for my symptoms: *I suffer from chest spasms and the sensation of trapped gas. About two hours after ingesting garlic, I experience shivering, nausea, gas discomfort, tremors, heart palpitations, weakness, and shortness of breath, although I have yet to faint.* I had an appointment scheduled with an allergy specialist, but when I inquired about being tested for potential allergies to garlic and coconut, I was met with refusal, being told that those allergies won’t be tested since both are ubiquitous in foods, thus implying they are unavoidable. This response left me feeling bewildered, leading me to question if the issue lays with me. I earnestly seek assistance in understanding what is transpiring with my body and how I may compel medical professionals to take my concerns seriously, rather than dismissing them with the usual narratives that many women encounter: "it's anxiety, it's your weight, or it's your hormones." My hope is fading.
Answers (1)
3/4/2026, 12:50:53 AM
OpenHealth AI
I'm truly sorry to hear about your difficult journey and the challenges you've faced with your health. It’s clear you are experiencing a combination of complex symptoms and frustrations in seeking appropriate medical care. Let’s break down your situation and outline some potential next steps you can take to address your health concerns.
Main Points
- Complex Symptomatology: Your symptoms seem to be influenced by dietary factors, previous exposures (like mold), possible allergies, and underlying conditions such as Dysautonomia and hypermobile Ehlers-Danlos Syndrome (hEDS).
- Navigating the Healthcare System: It’s crucial to ensure that your concerns are adequately acknowledged by healthcare providers to receive appropriate testing and treatment.
Understanding Your Situation
Your history suggests a possible interplay between gastrointestinal issues, food intolerances, allergies, and physical health conditions. The symptoms you describe, such as chest spasms and reactions to specific foods, could indeed relate to both gastrointestinal and autonomic dysregulation. Complex PTSD and panic disorders can also complicate symptom presentation, making it difficult for practitioners to observe the full picture.
However, it’s important to assert that your symptoms are valid and deserve thorough investigation, independent of any historical misdiagnoses.
Next Steps
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Keep a Detailed Symptom Diary: Continue to document specific symptoms related to food intake, lifestyle, and exposure to potential allergens or irritants. Note the timing, quantity of food, and any accompanying symptoms. This will be invaluable during medical discussions.
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Consider a Specialized Allergy Evaluation: Even though there has been resistance to testing for certain foods, seek a referral to an allergist who is open to working with your specific concerns. While garlic and coconut may often be considered non-allergenic, your unique symptomatology could warrant a different approach. A skin prick or food challenge test may be useful in specific cases.
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Explore Functional Medicine Approaches: Given the complexity of your symptoms, consulting with a functional medicine practitioner might provide a personalized avenue for treatment. This approach often looks at diet, lifestyle, and comprehensive testing to uncover hidden sensitivities or imbalances.
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Advocate for Comprehensive Testing: Document your past interactions regarding the endoscopy. If you're unsure whether a biopsy was performed, request a review of your medical records. Clearly communicating your history of nausea, food intolerances, and previous diagnoses (like gluten intolerance) may encourage further investigation.
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Build a Support System: Since you have coping mechanisms for your Complex PTSD and Panic Disorder, consider engaging with support groups or communities where individuals with similar experiences share their journeys. This can provide both reassurance and practical advice.
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Explore Dietary Alternatives Gradually: Until you get more answers from specialists, consider exploring a diet tailored for gastrointestinal sensitivities, such as the low FODMAP diet which may help identify problematic foods systematically. Consult a dietitian for guidance on how to implement this safely.
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Prioritize Mental Health Support: While your physical health is key, also addressing your emotional wellbeing is important. Engage with a mental health professional who understands the intersection of anxiety and chronic health issues. This can potentially empower you further in advocating for your physical health.
Conclusion
Your quest for answers in a confusing landscape of symptoms and the medical system is truly challenging. By taking a proactive, structured approach with detailed documentation, advocating for your needs, and considering various avenues of healthcare, you may find clearer pathways to understanding and addressing your health issues. Please remember, your concerns are legitimate, and seeking the right support is paramount. Keep persevering, and don’t hesitate to ask for help when needed.
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