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

Problem Getting Officially Tested - Phobias

r0ckah0l1c

By r0ckah0l1c
in Doctors

Recommended Posts

r0ckah0l1c Apprentice
r0ckah0l1c
Posted

I have several signs of celiac disease which began appearing several years ago, my doctors all have told me to go to a gastroentronologist (sorry if that is spelled incorrectly) to get an endoscopy tissue test or blood test, however, I have a fear of medical devices. I have never in my life had my blood drawn, I find it extremely difficult to get shots and can't even recieve novacain at the dentist while taking sedatives, I am afraid of IVs and being unconscious during procedures. I am really concerned and wonder if there are testing alternatives? I eat gluten free and am on medicine for intestinal issues and I have seen a great deal of difference, as soon as I try to eat gluten again I get extremely depressed and ill with terrible cystic rashes and joint aches along with feeling extremely weak and tired. I know that I need to get tested but I don't know how =/ I appreciate any help! Oh, I am also only 18 so money/insurance is sort of an issue as well as far as testing options.

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

Celiac.com Sponsor (A8-M):


MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

Hello! I am sorry to hear about your phobias. Not everyone needs to be officially diagnosed, so, you may just want to do an elimination diet to see the results and prove to yourself that different foods were the issue. Some doctors accept that, but there are also stool tests that you can order. You do have to eat gluten to take any tests. It is really up to you and your situation whether you want that official diagnosis.

Good luck!

r0ckah0l1c Apprentice
r0ckah0l1c
Posted
  • Author

I have been eating gluten free so I guess that is what I will keep doing. The doctor had me go back to eating gluten for the month of february but I ended up in so much pain that I only did it for 2 weeks and he said that wasn't enough to do a stool testing. Thank you for your help =)

Jestgar Rising Star
Jestgar
Posted
I have been eating gluten free so I guess that is what I will keep doing. The doctor had me go back to eating gluten for the month of february but I ended up in so much pain that I only did it for 2 weeks and he said that wasn't enough to do a stool testing. Thank you for your help =)

But maybe that was enough for you to know it's bd for you?

  • 2 weeks later...
KerriKnoxRN Newbie
KerriKnoxRN
Posted

I agree with the rest of the posters here that there is really no reason to get an 'official' diagnosis. Why do you feel that you need one? You already know you can't eat gluten, so why bother with doctors doing tests that are notorious for not diagnosing Celiac anyway.

Really, the tests don't always show Celiac if you have a more mild case or have less damage. Even the 'Gold Standard' of an intestinal biopsy is not always right because you have to have a certain level of damage to be read as positive.

So save your money and be happy that YOU found out when you did instead of 10 years down the road!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,935
    • Most Online (within 30 mins)
      7,748
    Dennis Greene
    Newest Member
    Dennis Greene
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Posts

    • Nicbent35
      3 year old gluten intolerance?

      By Nicbent35 · Posted

      Well I had a moment yesterday morning where I accidentally gave her gluten. She wanted what I was eating and I forgot and let her have a few bites of toast. It was a really bad night last night with her behavior. Will a few bites of bread influence their behavior that much or could it just be a coincidence?
    • Scott Adams
      How many grams is there in one slice of wheat bread?

      By Scott Adams · Posted

      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least 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.      
    • Scott Adams
      Confused with test results

      By Scott Adams · Posted

      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
    • MaryMJ
      Water filters and gluten

      By MaryMJ · Posted

      I called zero water and they state their filters do not contain gluten or gluten containing ingredients. 
    • trents
      What should I do with these test results?

      By trents · Posted

      I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
×
×
  • Create New...