OpenHealth Q&A

Could Regulating Immune Deficiencies Trigger Autoimmune Conditions to Manifest?

I’m seeking insights from healthcare professionals regarding a potential issue. My local health care system is overwhelmed, and it's likely going to take years to access proper medical support. Age: 44 years Weight: 112 lbs Height: 5’2” Smoking Status: Active smoker Alcohol: Unable to consume due to severe intolerance, with reactions similar to a well-known scene from ‘The Exorcist’. Current Health Issues: - Diagnosed with Hereditary Angioedema Type 1. - Possible diagnosis of Pernicious Anemia (experiencing MS-like symptoms as well as neuropsychiatric issues that improve with intensive treatment but recur when medication is scaled back). I've recently commenced a new treatment for my HAE that is notably more effective than prior options. However, every time I initiate a new therapy or implement a supportive measure for my HAE, I find myself plagued by debilitating gastrointestinal distress. Symptoms include intense upper abdominal pain following meals, severe headaches, extreme fatigue, pronounced muscle weakness, abdominal bloating, fluid accumulation in the abdomen, legs, and lower back, along with inconsistent, watery stool. This troubling pattern predates my diagnosis and has been escalating since I turned 19; I received a formal diagnosis only at age 39. I suspect there may be an association with autoimmune gastritis or an unidentified autoimmune issue. My HAE primarily presents as acute attacks involving significant fluid shifts across both the upper and lower abdomen, leading to symptoms of vomiting and diarrhea that can culminate in hypovolemic shock, or alternatively, massive abdominal swelling that requires resolution before relief is experienced. I am questioning if managing the HAE could potentially allow an underlying autoimmune disorder to become evident or to worsen. Are there specific signs I should monitor for if this is indeed the case? Traditionally, I have responded to this situation by adopting a restricted diet of chicken and rice while ceasing all nutritional supplements, but unfortunately, this disrupts my electrolyte balance and nutrition to the point that it exacerbates my HAE. This approach is no longer viable for me. Recent test results that might be relevant include: - **Anti-Nuclear Antibody Panel**: Negative @1:80 with a noted unusual cytoplasmic pattern that is not well understood clinically. ### Current Medications: **For Hereditary Angioedema Type 1**: - Andembry 200mg/1.2ml subcutaneous injection - administered every 28 days as a preventative (initiated December 13, 2025). - Berinert 1500 mg IV infusion - for management of HAE attacks or preventive measures. - Icatibant 30 mg subcutaneous injection - used during severe HAE attacks. **Daily Medications**: - Baclofen 15mg taken three times daily - for pain management. - Clonazepam 0.5mg, up to three times daily as needed for sedation and pain relief (can tolerate doses up to 3mg during severe episodes). - Folic Acid 1.5mg daily - aimed at addressing deficiencies. **Occasional Medications**: - Vaginal suppositories containing Baclofen 4mg/Diazepam 5mg as needed - for pelvic floor spasms and associated pain and inflammation. - Vaginal suppositories with Baclofen 4mg/Diazepam 5mg/Ketamine 15mg as needed for similar purposes. - Nalcrom 300mg as required - to stabilize mast cells during attacks or prevent occurrences. - Hydroxocobalamin 1000mcg subcutaneously every 4 days - to rectify deficiency symptoms. - Medical cannabis (high CBD, low THC formulations, both oral and topical) - used to manage pain, nausea, and anxiety. - Hydroxyzine 25mg as needed - to help with sleep. - EpiPen - intended for emergencies (rarely used). - Over-the-counter options: Benadryl and Desloratadine (5mg) as needed. ### Supplements: **Daily Intake**: - Magnesium Bisglycinate 400mg - promotes sleep and overall wellness. - Palmitoylethanolamide 1200mg - indicated for neuropathic pain, inflammation, and mood enhancement. - Vitamin D3 5000 IU - to correct deficiencies related to lack of sunlight. - A Vitamin B complex to address deficiencies. - Natural Vitamin C, taken multiple times daily to support drug and supplement absorption. - Biotin 500mcg - for deficiencies. **Occasional Supplements**: - DL-Phenylalanine 1000mg once daily - for pain management and mood regulation. - Chamomile 700mg up to three times daily - to prevent gastric upset and improve mood. - Melissa leaves (Lemon Balm) 1000mg/day - for preventing gastric issues and mood support. - L-Theanine 225mg taken twice daily - for mood enhancement. - Carbonyl Iron 22.5mg every two days - to rectify deficiencies. - Zinc 25mg/Copper 2.5mg/Selenium 200mcg every 2-3 days - addressing various deficiencies. - Chlorophyll (e) 45mg occasionally - aids iron absorption. - Serrapeptase 45mg occasionally - for managing inflammation and pain. - Quercetin 50mg occasionally - an anti-inflammatory and pain relief aid. - NAC (N-Acetylcysteine) 500mg - for its anti-inflammatory properties and pain management. - Deglycyrrhizinated licorice 380mg occasionally - used in conjunction with Nalcrom to curb gastric distress stemming from Nalcrom's reduction of stomach acid. - Vitamin K2 100mcg occasionally - aimed at addressing deficiencies. - Fennel 480mg as needed - to assist in alleviating gastric disturbances.

Answers (1)

2/4/2026, 1:50:55 PM

OpenHealth AI

It sounds like you're navigating a complex and challenging health situation with hereditary angioedema (HAE) and potential autoimmune issues, compounded by significant gastrointestinal distress and past diagnoses. You're right to be concerned about the interactions between managing HAE and the possibility of unearthing autoimmune conditions. Let’s break down your concerns and outline some actionable steps.

Key Points:

1. Managing HAE and Autoimmune Concerns: Treatments for HAE may not directly cause autoimmune conditions to manifest, but if your immune system's responsiveness is altered, it might reveal underlying issues.
2. Symptom Monitoring: Certain signs could indicate that an autoimmune issue is escalating.
3. Diet and Nutrition: Finding a balanced diet that supports your condition while addressing gastrointestinal distress is crucial.

Explanation:

Managing HAE effectively can stabilize your immune responses, which may sometimes highlight other underlying conditions. Autoimmune disorders like gastritis can indeed affect your gastrointestinal tract, and complex interactions may arise, particularly with symptoms you currently experience.

While ongoing gastrointestinal distress can complicate your treatment, it's essential to track specific symptoms. Keep an eye on any changes in your overall health status and any new symptoms that may arise, such as increased fatigue, joint pain, skin changes, or recurrent/unstable gastrointestinal symptoms, especially after treatment changes.

Specific Next Steps:

1. Monitor Symptoms:

   • Log your symptoms: Note when they occur, their intensity, and any triggers related to your meals or treatments. Documenting these may help you identify patterns or correlate them with specific treatments or dietary changes.
   • Watch for new symptoms: Especially any increased muscle weakness, increased joint pains, or skin rashes.

2. Adjust Your Diet:

   • Rather than restricting yourself solely to chicken and rice, consider a more varied diet that adds safe, easily digestible foods. Gradually introduce small amounts of other food groups to minimize digestive stress while ensuring nutrient adequacy.
   • Keep foods high in electrolytes, such as bananas, sweet potatoes, and leafy greens, to help with your hydration and nutrition without disrupting your HAE management.

3. Consult with Nutrition Support Resources:

   • Even if direct medical access is limited, a registered dietitian can help tailor a meal plan that meets your nutritional needs with HAE and gastrointestinal sensitivities in mind.

4. Review Medications and Supplements:

   • Given your extensive medication and supplement regimen, it might be beneficial to reevaluate these with a healthcare provider when available, particularly as some supplements might interact with HAE treatment or worsen gastrointestinal distress.

5. Know When to Seek Help:

   • If you experience signs of an allergic reaction (e.g., swelling that is atypical for HAE), or symptoms that severely impact your quality of life (such as prolonged fatigue, severe joint pains, or gastrointestinal symptoms worsening to the point of causing dehydration or significant pain), seek immediate medical advice.

In summary, take a structured approach in monitoring your symptoms and adjust your diet for better overall nutritional support. Keep an open line of communication with healthcare professionals when possible, especially about medication and supplement strategies. You’re doing incredibly well to advocate for your health needs amidst these challenges, and it’s important to prioritize both immediate concerns and long-term management strategies.