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

Ask My Doctor For What Test?

bluedarling

Recommended Posts

bluedarling Newbie
bluedarling
Posted

I have suspected gluten/casein sensitivity for years, but couldn't come up with enough evidence to support asking to be tested, and my hubby wasn't supportive of diet changes without proof. I've had boughts of diarhea, when I was eating more whole grains and milk, where I did lose some weight, but not lately (mostly eating white flours, now, which don't seem to have noticeable symptoms for me....other than expected weight gain in proportion to what I'm eating.)

I am now seeing a naturopath for hypoglycemic-like crashes (but I don't test hypoglycemic). I am on thyroid meds (but I don't think I actually have thyroiditis...she said my T3 was low, but not my T4. TSH was high.) All hormones are low as well. At another visit she said I don't have any disease, but I just don't feel good. She started me on a candida diet (which was pretty much gluten-free), and I didn't notice any difference. She seemed baffled by my lack of response to the candida diet, and is currently testing me for heavy metal poisoning (I'm doubtful that will find anything, either, as she said I'd feel lousy during the test if that was it...and I didn't.) I asked about doing a gluten test, and she said celiac tests almost always come back negative...said she'd do it if I insisted, but she feels its a waste of money. She suggested IGG testing would be preferable, but didn't order it.

The crashes (extreme fatigue, pre-fainting, achiness and headache about 1 hour after eating) have happened after consuming pretzels, and after granola & milk consistently. Other foods were less consistent. Diarrhea is occasional after these foods, as well, but not consistent. My heart rate drops really low (36bpm) during these crashes. Outside of the crashes I am also having achiness & fatigue to a lesser degree than during the crashes. I'm guessing this doesn't sound so much like a gluten issue....so why am I suspecting it? Because I KNOW its related to something I'm eating. My 4 children all have behavioral issues (adhd) or food allergies to milk (wheat when younger.) I have a few of the listed symptoms....large, floating stool, mouth sores, headaches and tingling in hands and feet (though I'm guessing that's from lack of exercise).

Should I order my own Enterolab test, or order an actual celiac test against doc's suggestion? or just go Gluten-free Casein-free for a longer trial? or is the doc right, and igg test would be better? how do I know?

Thanks for any help,

bluedarling

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

To diagnose Celiac, the blood tests are the first step:

Open Original Shared Link

If you do have something, would you want to know?

Archived

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

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


  • Member Statistics

    • Total Members
      131,663
    • Most Online (within 30 mins)
      7,748
    Funnybone
    Newest Member
    Funnybone
    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

    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.