Seeking Guidance - Ongoing Mouth Issues Stumping Doctors
Age: 25, Female Diagnoses: Possible recurrent aphthous stomatitis (RAS) Medications: Currently taking Acyclovir at a dosage of 400mg per day to assess if the issue relates to RAS. The only other medication I occasionally use is Advil, and I take a women's multivitamin every other day. My symptoms have persisted since late February of this year. I experience the formation of spots on my inner lips and sometimes on the sides and tip of my tongue within a few minutes to hours after consuming even mildly acidic or greasy foods. This is often accompanied by a tingling or burning sensation. Initially, these spots present as small sores, but they rapidly develop into larger, raised red patches with a well-defined edge over the course of one to two days. In cases where the food is particularly acidic, this expansion occurs much quicker; for instance, after eating tomato soup, my upper lip became swollen for approximately 14 hours. However, if I adhere to a strict low-acid diet, the spots do not appear. This diet essentially consists of plain chicken and rice, as it seems that almost everything else triggers these symptoms. I consulted with my primary care physician, who suggested that these could be aphthous ulcers. However, I have had my fair share of those in the past, and these occurrences feel quite different. There is a possibility that my symptoms might indicate underlying Celiac disease, especially considering my gluten intolerance. Despite having avoided gluten for three years, including a strict two-month gluten-free diet, the issue has not resolved. I then sought an allergist to check for any new food allergies, but testing showed no allergens. During that appointment, the allergist mentioned that my symptoms could be consistent with either RAS or possibly Crohn's disease. To eliminate RAS as a possibility, I was prescribed Acyclovir for a two-week trial period, and although I've only been taking it for two days, I am feeling quite disheartened, fearing that this will not yield results either. Currently, I am awaiting a referral to an ENT specialist and thought it prudent to seek a third opinion in the meantime. I have conducted numerous searches using various descriptors, including reverse image searches with photos of my condition, yet I have found nothing closely resembling my situation online. Not even the daunting cancer images that search engines are known for showing to users. Below, I have included images that provide context for what I am experiencing: The typical appearance of the spots after they have expanded, generally lasting 1-2 days. The initial stage resembling ulcers more closely. Progression of the spots as they grow in severity.
Answers (1)
8/6/2025, 8:20:53 AM
OpenHealth AI
It sounds like you're dealing with frustrating and painful symptoms that aren't straightforward to diagnose. Given your ongoing mouth issues and the triggering nature of foods, it’s understandable to feel disheartened while seeking answers. Let’s break down your situation and discuss some prioritized steps to help manage your symptoms while you await further medical evaluations.
Main Points
- Your symptoms may be linked to recurrent aphthous stomatitis, dietary triggers, or possible underlying conditions.
- Maintaining a strict low-acid diet appears to minimize flare-ups.
- Further investigation, including your ENT referral, is needed for a proper diagnosis.
Explanation
From what you described, the sores on your lips and tongue that develop after eating specific foods—especially acidic or greasy ones—are concerning and suggest that dietary sensitivities or an underlying condition could be at play. While your physician views this as potentially related to recurrent aphthous stomatitis (RAS), the rapid progression and response to diet raise additional possibilities worth exploring.
In some cases, conditions like Celiac disease, Crohn’s disease, or even certain autoimmune disorders can cause similar oral symptoms. While your gluten avoidance is commendable, lingering symptoms after such a strict diet might imply the need for more comprehensive testing, though you've already taken significant steps in this regard.
Next Steps
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Continue Acyclovir for the Full Course: It’s crucial to complete the full two-week regimen prescribed by your physician, as initial responses can take time to manifest. Monitor any changes in your symptoms closely.
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Maintain a Low-Acid Diet: Since avoiding acidic foods is currently effective for you, try to stick closely to this diet until you have further evaluations. Gradually reintroducing foods systematically, one at a time, may help identify specific triggers.
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Keep a Symptom Diary: Documenting your food intake alongside your symptoms can help pinpoint patterns or correlations. Note any food that appears to exacerbate your symptoms, durations of outbreaks, and any other variables.
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Consult with the ENT Specialist: Once you have your appointment, share all your documented experiences, symptoms, and dietary changes to give the specialist a comprehensive view. They may provide insights or further diagnostic tests, such as endoscopy for gastrointestinal issues, depending on what they observe.
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Consider Nutritional Support: Since your diet is limited, ensuring you receive adequate nutrition is key. Consulting with a registered dietitian can help develop a personalized plan that maintains nourishment while minimizing trigger interactions.
Supportive Reminder
I understand how disheartening this experience can be, especially when the answers are elusive. You’ve taken proactive steps in seeking care, and each step is vital in transforming your health journey. It’s important to be patient and gentle with yourself during this process. If your symptoms worsen or become intolerable, please consider reaching out to a healthcare provider sooner rather than later for reassurance or immediate options.
Feel free to keep me posted on how things progress or if you have further questions!
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