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
-
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.
-
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.
-
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.
-
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!
Related Questions
Healing Progress Post-GBS: Toe Concerns
I am a 28-year-old male, measuring 5 feet 10 inches and weighing 131 pounds. My current medications include Fomadatine and Zyrtec, prescribed due to my ongoing battle with Chronic Gastritis and SIBO. I maintain a healthy lifestyle, abstaining from both smoking and alcohol. My health concern revolves around the toe adjacent to my pinky toe on my left foot, as well as my pinky toe on the right foot. Since August of last year, I have been on the mend from Guillain Barre Syndrome. Recently, I've noticed that at night, the skin on my feet tends to turn a reddish pink, although this usually improves after I walk around. However, two of my toes have remained red, with one appearing slightly swollen. Generally, my pinky toes are quite thick, but the condition of my left foot's toe is worrisome for me. It seems that I'm unable to upload an image to illustrate my issue.
Swelling Beneath My Chin Near the Jawline
18-Year-Old Male: I'm reaching out to any medical professionals who might provide insights into my situation. I've been using marijuana since I was 14, but now, at 17, I'm making an effort to stop and have been clean for 18 days. Recently, I've discovered an unusual swelling located just beneath my chin, behind my jaw. It causes some discomfort when I move, yet it doesn’t feel painful continuously. I'm somewhat anxious that this could be indicative of a more serious issue, especially considering it's positioned near my chin's lymph nodes. Any advice or information would be greatly appreciated as it might help alleviate my worry.
Seeking Insights: My Journey with Undiagnosed Neurological Symptoms
Hello everyone, I'm a 34-year-old female grappling with neurological symptoms that first appeared in October, and I’m eager to hear from anyone who might have faced similar challenges. My journey began with unexpected migraines, blurred vision, and an ongoing sensation of being off-balance or intoxicated. Gradually, I began experiencing mainly sensory-related symptoms, such as tingling and burning sensations, feelings of extreme heat and cold, sharp pains radiating in my arms and back, as well as discomfort in my hands and toes, alongside intermittent numbness. I also endure varying degrees of weakness and heaviness in my right side, specifically my arm and leg, although I haven’t suffered complete functional loss. The nature of my symptoms is erratic; they fluctuate rather than consistently deteriorate. An MRI revealed mild, scattered lesions in the white matter, which were deemed nonspecific. Further tests from a lumbar puncture returned normal results, showing no markers of inflammation, and the oligoclonal bands were not present. A thorough range of lab tests yielded no significant findings. After evaluating my case, the neurology team suggested a possible diagnosis of MS and administered a three-day course of intravenous steroids. While I noticed a slight improvement in some sensory pain, my symptoms persist and continue to vary day by day. I still experience headaches and pressure in my head along with episodes of blurred vision, but there have been no new deficits since treatment. I am reaching out to connect with others who have had similar experiences. I would like to learn about the insights or diagnoses you encountered and what treatments proved beneficial (such as those related to migraine disorders, dysautonomia, or sensory neuropathy, for example). If you have navigated a similar path, I would greatly appreciate your sharing your story. Thank you!
Should I Seek Medical Attention for Left Ear Pulsatile Tinnitus?
A 31-year-old woman reports an ongoing issue with pulsatile tinnitus, which she is currently experiencing solely in her left ear. Although she's noticed this condition intermittently before, she hadn’t paid it much mind due to the absence of pain. Recently, however, her curiosity piqued her interest in researching the condition, where she stumbled upon information suggesting it could be serious. Usually, she avoids searching online for health worries, but now she is contemplating whether a visit to the doctor might be warranted. Can anyone advise on the need for a medical evaluation in this case?
Concerns About Angular Cheilitis
I’m a 23-year-old woman with no history of smoking, and I’m seeking assistance regarding a health issue. Back in January, I experienced angular cheilitis three times, each episode involving a minor crack at the corner of my mouth that healed within a few days. Following the last occurrence, I became quite anxious due to saliva accumulation in that area. I found myself frequently brushing my finger along that spot. After a few days, I observed a small area forming that appeared white and had a rough texture. Eventually, I realized it was not just a coincidence, and I started taking action, but only after it became noticeably larger. To address it, I cleaned the area with a mix of alcohol and apple cider vinegar. I’m uncertain about what this issue could be, but I’ve recently begun using over-the-counter Clotrimazole cream while also keeping the area moisturized with either lanolin or petroleum jelly. Unfortunately, I haven’t noticed any improvement, and I’m concerned as it seems to be expanding. The patch continues to be rough and excessively dry. Although I can open my mouth wide without any cracks forming, I do feel tension in the skin, similar to having a bandage over that location. At times, I experience a burning sensation after thorough washing, and I’ve noticed tiny red spots appearing on the outer edges of the patch sporadically.