Kidney disease with celiac disease

I have had celiac for 16 years and last summer diagnosed with stage 3a chronic kidney disease; I have no risk factors (no kidney stones). My husband had kidney stones and his urologist told him to drink citrus water every day, stay hydrated, and minimize caffeine and alcohol to decrease risk of further stones. I recommend an appt with a nephrologist, urologists are more focused on bladder and urethra (granted both impacted by your symptoms). If you haven't yet, get a full kidney blood/urine workup including creatinine. Regarding creatinine, don't work out for 2 days before because the test it also measures creatinine from muscle building. I had a kidney biopsy 3 weeks ago and have (hopefully mild) acute kidney injury, but no inflammation and no known cause (my guess is high blood pressure during covid and long covid a year ago).

@dmmeyers62
I’m sorry to hear you are suffering and not getting more help from your providers. I can relate with the many healthcare gaps in treatment and information/guidance.

Here is what AI responded with to your conditions:

“ Celiac disease and kidney disease can indeed be related, although the connection may not be widely recognized. Here are some key points to consider:
Connection Between Celiac Disease and Kidney Issues
Autoimmune Nature: Celiac disease is an autoimmune disorder where the ingestion of gluten leads to damage in the small intestine. This autoimmune response can sometimes extend to other organs, including the kidneys.
Kidney Disease Types: Some studies suggest that individuals with celiac disease may have an increased risk of developing certain types of kidney disease, such as:
IgA Nephropathy: This is a condition where IgA (a type of antibody) builds up in the kidneys, potentially leading to inflammation and damage.
Minimal Change Disease: This is a type of kidney disease that can cause nephrotic syndrome, characterized by protein in the urine and swelling.
Kidney Stones: The formation of kidney stones can be influenced by dietary factors, which may be particularly relevant for those with celiac disease. A gluten-free diet can sometimes lead to changes in nutrient absorption and metabolism, potentially increasing the risk of certain types of stones.
Nutritional Deficiencies: Celiac disease can lead to malabsorption of nutrients, which may contribute to kidney issues. For example, deficiencies in calcium and vitamin D can affect kidney health.
Recommendations
Consult a Specialist: If you're experiencing kidney stones and hemorrhages, it may be beneficial to consult a nephrologist (a kidney specialist) who is familiar with celiac disease. They can provide more targeted insights and management options.
Dietary Considerations: Ensure that your gluten-free diet is well-balanced and includes adequate hydration, calcium, and other essential nutrients. A dietitian with experience in celiac disease can help optimize your nutrition.
Regular Monitoring: Regular follow-ups with your healthcare providers are essential to monitor kidney function and manage any complications that may arise.
Research and Support: Look for support groups or forums for individuals with celiac disease and kidney issues. Sharing experiences and information can be helpful.
If you have specific symptoms or concerns, it's crucial to discuss them with your healthcare provider for personalized advice and treatment options.”

Thank you for the information. Contacted my provider and he feels it's not necessary for me to see a Nephrolist. Sad because am still having a dull pain in my kidneys. Contacted the Urologist I have been seeing not expecting whole lot. Will be looking for a Doctor who is familiar with kidney disease and celiac. Wish me luck!

@dmmeyers62
I would ask your urologist for an ultrasound of your abdomen/pelvis/kidneys. If you don’t get validation of your symptoms and help investigating the root cause, I would go to a new urologist/nephrologist for 2nd opinions.

Praying you get the help you need. Don’t stop advocating for yourself and your health. I have found that older women need to fight harder to be taken seriously to get the care needed. Many times you get invalidated or told it is “all in your head” when that is disrespectful and discriminatory.