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):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

loose diagnosis, pls check out my labs


mirror~pool

Recommended Posts

mirror~pool Newbie

First post!  I received my “diagnosis” a couple days ago after feeling horrible everyday for the past 20 years.  I don’t really have any digestive issues, so everyone (including drs) have acted like it is all in my head.  I so badly want to list all my symptoms because I think I would have an understanding audience here, but I’m sure you all get that all the time.

I went to a new doctor last week thinking it was probably lupus (I have all the symptoms plus the butterfly rash) or at the worst MS.  I wasn’t going to let them dismiss me this time.  I finally had someone who really listened to me, took the printout I made of the long list symptoms seriously (I did omit the fact that I have anxiety as I have felt like that has led to the dismissal of my concerns in the past).  

Despite the lack of digestive issues she threw in a celiac panel.  She thinks it is “highly suspicious” that I have it but does not think I need the biopsy, just gluten free from now on.  With what many think is the “trendiness” of gluten free now, I would like to be able to counter the eye rolls with being able to honestly say that I have Celiac Disease.   I get a lot of conflicting info online.  Biopsy being the only way to diagnose vs blood tests have come a long way and biopsy may not be necessary.  

I can’t find any info online as to what is considered a near absolute (or super high levels) when it comes to blood work, can you guys take a look at my labs and give me your opinion?  I feel like establishing a relationship with a gastroenterologist before I go off of gluten might be a good idea, but a biopsy will cost me $700 at minimum (potentially thousands more) with my lousy insurance.   

Do I definitely have it or should I get a biopsy? 

 

                                             Value           Std Range

IGA Serum                            397             70-310

 

Anti Gliandin

Ab, IgA                                  77                  0-19

 

Tissue

Transglutaminase

IgA                                         95                  0-19

 

Anti Gliadin

Ab, IgG                                  83                  0-19

 

Tissue 

Transglutaminase

IgG                                        22                   0-19

 

(Also, I see TTG referenced a lot.  Does that refer to any of these tests?)


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Welcome to the board. With numbers that high and positive in all tests there really is no doubt you have celiac.

Do read the Newbie thread at the top of the coping section as it will have lots of good info for you. I hope you heal quickly but do know that with nervous system impact (your MS type symptoms) healing can take some time..

squirmingitch Veteran

Is your doctor willing to give you an official dx of celiac based on your labs without getting an endoscopy? If so, then by all means, forget the biopsies.

I agree that you are celiac. Geez, any idiot could see that with your blood panel results.

GFinDC Veteran

Hi,

ttg is just an abbreviation for Tissue Transglutaminase IgG or IgA.

Irene Joanne Explorer

I'm from Canada and whenever I see a doctor I'm asked if I had the biopsy. It seems it's not believed a person really has celiac with just blood work. It makes me thankful I had the biopsy- but every situation is different. 

Long term with all the other health problems I've been having and the specialists I've had to see- I'm grateful my diagnose isn't constantly questioned 

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.