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Help with worsening food allergy symptoms, headache, etc.
I’m looking for insight on what type of specialist or condition I should be pursuing, because I feel stuck between ENT, allergy, and neurology with no clear answers.
Timeline:
• From 2018–2023, I lived in an apartment later confirmed to have black mold. During that time, I experienced hair loss and severe skin issues.
• I moved into a clean apartment in 2023.
• In 2023, after drinking an alcoholic beverage containing citrus (I had a known mild citrus allergy), I developed daily migraines with aura, nonstop, for about 8 months.
• I was evaluated by neurology, had CT imaging, was diagnosed with migraines with aura, and treated with amitriptyline.
• After tapering off amitriptyline, the daily migraines stopped — but my food allergy reactions became significantly worse.
Since then:
• I developed RSV, after which my nasal symptoms changed significantly.
• I now experience headaches, facial/sinus pressure, eye pressure, ear fullness with muffled hearing, scalp tenderness, and loss of smell lasting weeks to months, which then returns unpredictably.
• After food allergen exposure (often unavoidable due to how extensive my allergies are), I develop severe inflammatory reactions — head pressure, neurologic symptoms, swelling, constipation, and inability to lie flat or sleep.
• These reactions feel much more severe than my earlier food allergy reactions (which used to be limited to GI symptoms or hives).
•I do have asthma
Specialists seen:
• ENT: Declined further imaging or treatment because symptoms were not considered severe at the time, despite anosmia, facial pressure, headaches, and difficulty lying flat.
• Allergist: Unable to offer immunotherapy due to reactions being primarily food-based rather than environmental.
•Neurologist
Current management:
• Supplements: magnesium complex, vitamin B complex, vitamin D3 + K2, NAC (started in late 2024). These help reduce severity but do not fully resolve symptoms.
• Medications: Allegra daily, Benadryl intermittently. Limited relief.
• Diet is extremely restricted (often rice and chicken), raising concerns about nutritional deficiency.
Concerns:
• Progressive worsening of food reactions (approaching anaphylaxis at times)
• Persistent ENT and neurologic symptoms without clear diagnosis
• Not being heard or taken seriously due to symptoms crossing multiple specialties
My question:
Given this pattern (food-triggered inflammatory reactions, chronic sinus/ear symptoms, migraine history, post-viral changes), what conditions or specialists should I be advocating for next?
I’m not seeking a diagnosis — just direction on what might be getting missed.
My allergies include:
Eggs,Garlic, onions,pumpkin, coconut & derivatives, dairy, fish & shellfish, nuts, cucumbers, oats, leafy greens (incl. spinach), tomatoes, cantaloupe, citrus (lemon/orange), ginger, legumes,peppermint, honey, sesame, shea butter, lavender, sulfur, vitamin C
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I would highly recommend working with a dietitian. I have dietitians that are completely online that specialize in how nutrition impacts "diseases" that are great to work with and get responses out within 48 hours. Hopefully you can find one that does something similar that can help you. At the very least, a dietitian can work with you on making sure you get your nutritional needs met despite your food limitations.
@omara123 Welcome to Mayo Connect, where patients share their health journeys and support one another. Your story reads like that of someone I know, who finally sought care at Mayo Clinic. Their multi-disciplinary approach to diagnosis led to a treatment plan. It didn't cure the allergies, but it does allow a fairly normal life style.
Have you considered contacting them? There are clinics in Arizona, Florida and Minnesota. You can contact them here:
http://mayocl.in/1mtmR63
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1 ReactionHi! Sorry you are still having issues. I have ongoing sinus issues and I have an immune deficiency. I would highly recommend seeing an immunologist/allergy Dr. There are allergy Dr.'s that aren't immunologist. I would see one that is an immunologist. Request for testing for an immune deficiency. I have CVID- Common Variable Immune Deficiency. For many years, I have struggled with sinus infections, ear infections, upper respiratory infections. I started out mild- 1 or 2 sinus infections a year and then slowly over time, it got worse. Then, it became 3 a year, then 4 a year and then at its worse, it was 6-8 sinus/ear/upper respiratory infections a year. I was miserable! I would go to the Dr. and get a steroid and/or antibiotic and the first one wouldn't usually work, then I go back again and get another one, on and on and on. Well, now it takes up to 4 antibiotics/steroids for me to see relief. Basically, my antibodies are no good, they are on a permanent vacation! I do infusions weekly to put other people's antibodies into my body thru subcutaneous injections. The infusions have helped, however I still get sick, not as bad as it use to be. There are over 400 different types of immune deficiencies, so it is possible you might have something going on there. I would see a different ENT Dr. and tell them how long you have been struggling and give them all your symptoms and request for a CT scan. If the ENT Dr. won't do a CT scan, then go to your primary care Dr. and see if that Dr. will do it.
Another option is to see a Functional Medicine Dr. They spend way more time with you, do way more testing-bloodwork/lab work/do other testing-like stool tests or urine sampling. Some insurance will pay for some of the Functional Medicine Dr. visits or some of the testing, however they don't usually pay for all of the testing/visits, etc... You would have to pay for part of it out of pocket. I see one now and it is pricey, however it is worth every penny! Do research and ask around or look at reviews online to find one in your area. I have been having fatigue, and the Functional Medicine Dr. did a lot of bloodwork on me and found I am deficient in B vitamins and is making changes to my supplements that I take. When we lived in Iowa, I saw an alternative Internal Medicine Dr. and he was awesome! He did stool testing and extensive food testing on me. He told me that I had an intolerance to wheat and gluten/dairy. I went gluten free and dairy free and it has helped so much. This Dr. currently that I am seeing here in Ohio, says I am still having intolerance to wheat, gluten, dairy, but has also added that I have problems with eggs. When did you have your last food testing done? If it has been more than 3 or4 years, you might consider getting new testing done. Did you tell the ENT Dr's about the mold issue in former living area? The ENT Dr. could also take a sample of your phlegm from inside your nose. I just went to mine yesterday and the Dr. took a sample and will send it off to a lab for further testing. I have been sick for about a month. We just bought a home that had black mold in it. She said if I had mold issues, the CT scan would show it.
Seeing a Dietician might help as well or a registered nutritionist. Hospitals I know have them. That might benefit you, if you have never seen one. I hope you get to the bottom of why you are having issues.
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1 ReactionI have learn a lot about Inflammation from Dr. Jarred Younger Immunologist Scientist
077 – Seeing what I see: brain inflammation
Has any provider mentioned Gut Health? My gut health was messed up with some off the medication I was on. Basically strip good gut and intestine microbiome health – I needed to rebuild (Gut -> L-Glutamine, Intestine -> Lactoferrin). I had a dairy intolerance, after 30 days of rebuilding, I could eat dairy without discomfort.
It’s a journey, Best Wishes for Your Journey!
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