Doubts About My Celiac Disease Diagnosis
Hello doctors! I’m reaching out because I have stage 3 endometriosis and underwent a laparoscopic surgery a few months ago. Following a series of standard tests, my gynecologist informed me that I have Celiac Disease. Although I haven’t experienced any major issues digesting gluten, I understand that the condition can often manifest without symptoms and is frequently found alongside endometriosis, so I decided to eliminate gluten from my diet. While reviewing my test results, I noticed a section labeled Coeliac Screen, which made me think that was how my doctor reached that conclusion. However, out of curiosity, I looked up the typical results associated with Celiac Disease and compared them to my own, and I’m feeling a bit perplexed. My ENA/CTD test returned a negative result, Gliadin IgA was <0.2 (reference range 0.0-6.9 U/ml), Endomysium IgA was also negative, Transglutaminase IgA was <0.2 (reference range 0.0-6.9 U/ml), and my IgA level was reported as 1.39 (reference range 0.70-4.00 g/l). Additionally, my fecal calprotectin level was 38 uh/g. Am I overlooking something important, or do these results not suggest Celiac Disease? Is there another avenue through which my doctor could have reached this diagnosis? I’m unable to access the report detailing any tissue samples taken during surgery, so I’m uncertain if a biopsy was performed. I’ve had endometrial involvement with my bowel previously, but I’m unsure if that would warrant any investigation into my small intestine. I have been referred to a gastrointestinal specialist for an endoscopy before the year ends due to my endometriosis, the presence of occult blood in my stool, and a past H. Pylori infection (which I have treated). This should provide some clarity. Still, I wonder if my gynecologist may have acted prematurely. Am I missing a specific diagnostic marker? While I’m not overly troubled about cutting out gluten, given that I’m insulin resistant and this change has aided my weight management, I do want to make sure I am accurately informed about managing another chronic condition if indeed I do have it. Cheers!
Answers (1)
7/1/2025, 6:31:02 PM
OpenHealth AI
It sounds like you have a lot of concerns and questions about your Celiac Disease diagnosis, particularly because your lab results don't seem to support it. Let’s break this down into manageable parts to help you understand your situation better and provide clear next steps.
Main Points
- Celiac Disease Diagnosis: Your test results do not align with typical findings for Celiac Disease, as key markers are negative.
- Symptoms and Management: It’s important to clarify your diagnosis, especially since following a gluten-free diet can impact your lifestyle.
- Next Steps: You are already scheduled for a gastrointestinal consultation, which is crucial for clearing up any uncertainties regarding Celiac Disease and other gastrointestinal issues.
Explanation
Celiac Disease is primarily diagnosed through a combination of serology tests (like the ones you mentioned) and a biopsy of the small intestine. In your case, all of your serology tests (e.g., Gliadin IgA, Endomysium IgA, Transglutaminase IgA) returned negative results. These typically suggest that you do not have Celiac Disease, as a positive result in these tests would be expected if the disease were present. The presence of occult blood in your stool and your past H. Pylori infection are important factors that should be investigated but do not indicate Celiac Disease directly.
Next Steps
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Continue with Gluten-Free Diet: If eliminating gluten is positively impacting your weight management, you may consider maintaining this diet until clarified by your specialist. However, this should be based on your lifestyle choices rather than confirmed Celiac Disease.
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Prepare for Your GI Appointment: Make a list of your concerns, including:
- Any symptoms you have had related to your gastrointestinal health.
- Questions about the necessity of undergoing a biopsy during your endoscopy.
- Clarification on how endometriosis and previous bowel issues may relate to these gastrointestinal investigations.
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Review Medical Records: If possible, request access to your surgical report from your laparoscopic surgery to see if any biopsies were taken or noted that could inform your current diagnosis and treatment.
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Monitor Symptoms: Keep track of any gastrointestinal symptoms you experience and when they occur; this information could be valuable for your upcoming doctor's visit.
By addressing each of these areas, you'll be better prepared to engage with your gastroenterologist and get clarity on your diagnosis. Remember, your health and understanding of your body is paramount, and seeking clarification is absolutely warranted. If you have more questions or need further guidance, feel free to reach out. Cheers!
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