Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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):


  • Get Celiac.com Updates:
    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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,132
    • Most Online (within 30 mins)
      7,748

    Cindy Ophaug
    Newest Member
    Cindy Ophaug
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Keep us posted and let us know the results of the biopsy. Your case is atypical in a way in that you have this high DGP-IGA but normal TTG-IGA so knowing how it turns out will give us more data for similar situations that may be posted in the future. 
    • Skg414228
      Fair enough! I very easily could have misread somewhere. Celiac is very confusing lol but I should know in a little over a month what the final verdict is. Just thought chatting with people smarter than myself would get me in the right mindset. I just thought that DGP IGA was pretty high compared to some stuff I had seen and figured someone on here would be more willing to say it is more than likely celiac instead of my doctor who is trying to be less direct. She did finally say she believes it is celiac but wanted to confirm with the biopsy. I did figure it wouldn't hurt seeing what other people said too just because not all doctors are the best. I think mine is actually pretty good from what I have seen but I don't know what I don't know lol. Sorry lot of rambling here just trying to get every thought out. Thanks again!
    • Scott Adams
      Yes, these articles may be helpful:    
    • trents
      No, you don't necessarily need multiple testing methods to confirm celiac disease. There is an increasing trend for celiac diagnoses to be made on a single very high tTG-IGA test score. This started in the UK during the COVID pandemic when there was extreme stress on the healthcare system there and it is spreading to the US. A tTG-IGA score of somewhere between 5x and 10x normal is good enough by itself for some physicians to declare celiac disease. And mind you, that is the tTG-IGA, not the DGP-IGA. The tTG-IGA is the centerpiece of celiac antibody testing, the one test most commonly ordered and the one that physicians have the most confidence in. But in the US, many physicians still insist on a biopsy, even in the event of high tTG-IGA scores. Correct, the biopsy is considered "confirmation" of the blood antibody testing. But what is the need for confirmation of a testing methodology if the testing methodology is fool proof? As for the contribution of genetic testing for celiac disease, it cannot be used to diagnose celiac disease since 40% of the general population has the genetic potential to develop celiac disease while only 1% of the general population actually develops celiac disease. But it can be used to rule out celiac disease. That is, if you don't have the genes, you don't have celiac disease but you might have NCGS (Non Celiac Gluten Sensitivity).
    • Skg414228
      Okay yeah that helps! To answer your last bit my understanding was that you need to have multiple tests to confirm celiac. Blood, biopsy, dna, and then I think symptoms is another one. Either way I think everything has to be confirmed with the biopsy because that is the gold standard for testing (Doctors words). You also answered another question I forgot to ask about which is does a high value push to a higher % on those scales. I truly appreciate your answers though and just like hearing what other people think. Digging into forums and google for similar stuff has been tough. So thank you again!
×
×
  • Create New...