Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Join Our eNewsletter:
    Support Our Content
    eNewsletter
    Donate

What Should I Ask On My Next Dr. Visit?


David in Seattle

Recommended Posts

David in Seattle Explorer

I posted about a week ago about my 14 month odyssey into GI hell, and my suspicions about possible Celiac. A description of my symptoms is in this 1st post Over the last year, I have seen 2 gastroenterologists. I have an appointment with a 3rd in about a week, and I want to be sure I request anything which has not yet been done. So far, I have had the following tests:

Complete blood count (normal)

Complete metabolic panel (normal)

Sedimentation rate (normal twice)

Thyroid stimulating hormone (normal)

Cyclospora (negative twice)

Crytosporidium (negative)

Ova & parasite (negative twice)

Hepatic function panel (normal)

C Reactive protein (normal)

CT scan of abdomen and pelvis w/contrast medium (normal)

Creatinine (normal twice)

Tissue transglutaminase antibody, iga (Normal)

Fecal fat stain (increased twice)

Fecal fat quatitative (increase, 5.4g in 24 hours w/a normal max of 5.0)

Colonoscopy/esophageal endoscopy (normal, including one small bowel biopsy w/no sign of villious blunting)

C. difficle (negative)

Giardia antigen (negative)

Stool salmonella shigella campylobacter (negative)

CBD w/platlet differentiation (normal)

BUN (normal)

Electrolytes (normal)

IBD Serology:

Component Your Value Standard Range Flag

IBD PREDICTION Pattern Not Consistent with IBD

ASCA IGA ELISA LESS THAN 12.0 0-20.0 EU/ml

ASCA IGG ELISA LESS THAN 12.0 0-40.0 EU/ml

ANTI-OMPC IGA ELISA 2.2 0-16.5 EU/ml

ANTI-CBIR1 ELISA 5.1 0-21.0 EU/ML

NEUTROPHIL AUTOANTIBODY ELISA LESS THAN 12.1 0-12.1 EU/ml

IFA PERINUCLEAR PATTERN Not Detected

DNASE SENSITIVITY Not Detected

In addition to the above I have had a capsule endoscopy, with the result "multiple areas of erosion and erythema were seen in the proximal small bowel, with a few scattered in the mid and distal small bowel. A small ileal ulcer was also noted".

If anyone can give me some suggestions as what specifically I should be suggesting in my upcoming appointment, I would greatly appreciate it.

David


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



burdee Enthusiast

Hi David: It looks like your doc tested you for usual indices of celiac disease, as well as several parasites. Which test diagnosed the absence of parasites? Did your doctor consider other food allergies? I don't mean IgE or anaphylactic, immediate reaction, allergies. I mean IgG or IgA mediated delayed reaction allergies, which blood tests (like ELISA) can diagnose. I also didn't notice any test results for pathogenic or opportunistic bacteria or your 'good' bacteria levels. Other delayed reaction food allergies, bacterial infections and/or candida could also cause your gastro symptoms.

SUE

mushroom Proficient

Testing for vitamin and mineral deficiencies would help to determine whether you have leaky gut/poor absorption. Vitamins D, B12, folate, iron, zinc, magnesium, potassium. I do not see any specific stool testing for pancreatic sufficiency (the digestive enzymes). You do have increased fecal fat so maybe decreased lipase production. Have you tried digestive enzymes?

David in Seattle Explorer

Hi David: It looks like your doc tested you for usual indices of celiac disease, as well as several parasites. Which test diagnosed the absence of parasites? Did your doctor consider other food allergies? I don't mean IgE or anaphylactic, immediate reaction, allergies. I mean IgG or IgA mediated delayed reaction allergies, which blood tests (like ELISA) can diagnose. I also didn't notice any test results for pathogenic or opportunistic bacteria or your 'good' bacteria levels. Other delayed reaction food allergies, bacterial infections and/or candida could also cause your gastro symptoms.

SUE

Sue - The test results on the ova & parasite aren't specific as to species, they just say "No ova and parasite seen". No mention was made of food allergies, though the Elisa test does include a normal result for "ASCA IGA" & "ASCA IGG", both normal. Can you please elaborate on the specific tests that you mention in your last 2 sentences?

Thanks

David

David in Seattle Explorer

Testing for vitamin and mineral deficiencies would help to determine whether you have leaky gut/poor absorption. Vitamins D, B12, folate, iron, zinc, magnesium, potassium. I do not see any specific stool testing for pancreatic sufficiency (the digestive enzymes). You do have increased fecal fat so maybe decreased lipase production. Have you tried digestive enzymes?

They did check for potassium in the metabolic panel, but not for any of the others; I'll definitely ask about that. I did try the digestive enzyme drug "Pancrease" for a short while, seemed to have no effect. Please let me know if you have any other observations.

Thanks

David

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to yellowstone's topic in Coping with Celiac Disease
      3

      Has someone experienced discrimination because of their illness?

    2. - Scott Adams commented on Scott Adams's article in Spring 2026 Issue
      2

      When Home Isn't Safe: Celiac Disease, Cross-Contamination, and the Right to a Gluten-Free Space

    3. - Flash1970 commented on Scott Adams's article in Spring 2026 Issue
      2

      When Home Isn't Safe: Celiac Disease, Cross-Contamination, and the Right to a Gluten-Free Space

    4. - Russ H posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease

    5. - suek54 replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      46

      Shaking/Tremors and Off Balance

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,941
    • Most Online (within 30 mins)
      10,442

    Sensible
    Newest Member
    Sensible
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Regarding the discrimination you asked about, it is a lot more easy now to discriminate when you're supposed to answer whether or not you have celiac disease on job applications, and from what I've seen, MANY companies now include this question on their applications:  
    • Russ H
      People with coeliac disease have an altered gut biome compared with those who do not, which may be associated with gut inflammation. Although the gut biome recovers on a gluten-free diet, there are still significant differences at 2 years. In a mouse model of coeliac disease, supplementation with the soluble dietary fibre, inulin, increased the number of beneficial microbes and reduced gut inflammation. Inulin is used by some plants as carbohydrate store, it is a complex polymer of fructose in the same way that starch is a complex polymer of glucose. Inulin cannot be digested by humans but serves as food source for some gut bacteria. Inulin is present in many vegetables but the richest sources are (g/100g): chicory root 41.6 Jerusalem artichoke 18.0 dandelion greens 13.5 garlic 12.5 leeks 6.5 onions 4.3 The Scientist: Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease    
    • suek54
      Hi Ginger38 Well done you for pushing through the pain barrier of eating gluten, when you know each mouthful is making you poorly.  I went through the same thing not long ago, my biopsy was for dermatitis herpetiformis. Result positive, so 95% certain I have gut coeliacs too. But my bloods were negative, so very pleased I went for the gluten challenge and biopsy.  Hang on in there. Sue
    • Scott Adams
      When symptoms like fatigue, brain fog, or low energy change how we interact, others sometimes misinterpret that as disinterest, rudeness, or negativity—especially if they don’t understand the underlying condition. That doesn’t make their behavior okay, though. You don’t deserve to be treated poorly for something outside your control. Often, it reflects a lack of awareness or empathy on their part, not a fault in you. It can help to explain your condition to people you trust, but it’s also completely valid to set boundaries and distance yourself from those who respond with hostility. Your experience—and your reaction to it—makes sense. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Being HLA-DQ2 positive doesn’t diagnose celiac disease by itself, but it does mean he has the genetic potential for it, so it absolutely deserves careful follow-up if symptoms or concerns are present. You’re right that celiac is often downplayed, but it’s a serious autoimmune condition—not an allergy—and it can affect the brain, nervous system, and overall health if untreated. Given everything your son has been through, you’re doing the right thing by advocating and asking questions. I would strongly recommend getting a full copy of his records, and if possible, consulting a gastroenterologist who understands celiac disease well so you can get clear answers and, if needed, proper testing and monitoring.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.