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

Should I Get A Blood Test At All?


Nen

Recommended Posts

Nen Explorer

I have not stopped eating gluten yet. I am not sure whether I should pursue getting a blood test first, or just do the diet.

My feeling unsure what to do stems from hearing of others being denied health insurance due to having a "pre-existing" condition of Celiac. Then again, in a few years pre-existing conditions might not matter (depending on what all happens here in the USA with all this healthcare reform battles going on).

Then again, I would know either yes or no based on the blood test, though there is still a margin of error with the current testing.


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

Testing wasn't a big deal to me. I pondered it for maybe one day. I decided the result would be the same in all cases. I was sick and I thought gluten was my problem. So it didn't make sense to continue to eat something that could be making me very very sick just to be able to let the Dr. tell me to go gluten free. The possible outcomes did not make testing worth it to me. 30% false negatives means you could eat gluten all that time for the test and still test negative and still be sick. The result? I would go gluten free anyway just to find out if it helped. But if I went gluten free immediately I stood the greatest chance for the fastest recovery if this was indeed my problem. It was. The first accidental glutening 4 days into the diet made me extremely ill. Dietary elimination and challenge is 100% accurate. Celiac testing is not. But if you are one of those who won't be able to stay gluten free without a diagnosis...then the testing might be worth it. However, if you are willing to give gluten free a try and be vigilant about observing your symptoms then you could go gluten free and not worry about it. Doesn't bother me if anyone calls me a Celiac or not. I can live like one if I want to.

cbonner Newbie

Good morning NEN:I had the test done and should get my results back today.I had doctor problems getting the test because I don't look like a celiac.Insurance would pay for the test in stages-if test one is positive they would pay for test two ect.My feeling is that if test one is positive then test two is just for the doctor as I was going gluten free no matter what the test show.I guess if you need the results to help you stick with the diet they are worth the money.If feeling better is your goal why not try gluten free for 60 days and let your body decide if this helps you.I'm only five days into my diet;but my bloating is improving and I have more energy.Please try gluten free!Feeling better is worth the effort and the test may or may not show celiac.Let your body and health make the final decision!Charles

Roda Rising Star

I am diagnosed via blood work and biopsy. I was already covered on my health insurance for 5 years before I was diagnosed. I have never had a problem with any insurance I have had through employers with preexisting conditions. However, I have never been without coverage so that may make a difference too.

There are things a diagnosis could be good for. Some insurance policies won't pay for certain things without a qualifing diagnosis/symptom. Regular vitamin/mineral checks, bone mineral densitiy testing, additional scopes, screening for other autoimmune disorders, etc. may get those things done sooner and covered. Just food for thought. However, you have to make the decision that is best for your. Good luck and welcome.

mushroom Proficient

The problem with insurance arises if you ever have tp take out individual insurance, rather than be covered by an employer's policy. With individual insurance everything counts against you, even high blood pressure controlled by medication. So if you foresee in your future being self-employed and single,or a partner of someone who has individual health insurance, a diagnosis of celiac could be a problem, because I don't believe anyone in the U.S. should be without health insurance. And I have no idea what is going to happen with ObamaCare.:rolleyes:

Only you can decide if you can live without a diagnosis. Of course, you may be forced to live without a diagnosis if you belong in the 20--30% who test negative for celiac, but are gluten intolerant nonethelessll. Being intolerant of gluten and testing positive for celiac, unfortunately, are two different paradigms. But the treatment for each is the same - a gluten free diet. So you must decide if you need someone to tell you to stop eating gluten, or if you can tell yourself to stop eating gluten. The testing is not necessarily going to tell you yes or no. What will you do if it is negative? Continue to eat gluten? Or give yourself a chance to be well and stop?

Again, I am not telling you what to do, but I believe these are the things you should consider.

By the way, I love your screen name - that was my nickname as a child, in fact what I called myself because I couldn't pronounce my name. :D

Nen Explorer

Thank you all for the replies, it is food for thought. The kicker is that I do not have insurance already, so I could be shooting myself in the foot if it was diagnosed and I am not on insurance.

Sometimes I *really* hate the USA's healthcare system, its like you are punished for being a human. That though could be a whole other thread!

Aly1 Contributor

I had not even thought of the health insurance angle when I got tested. I am out of work and have no insurance - this is the first time I've been glad my test was negative despite my symptoms!


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



Celiac.com Sponsor (A8-M):



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. - trents replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      1

      Dizziness after eating green beans?

    2. - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      4

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

    3. - EndlessSummer posted a topic in Food Intolerance & Leaky Gut
      1

      Dizziness after eating green beans?

    4. - Sheila G. commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      4

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

    5. - ShariW replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      My journey is it gluten or fiber?

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

    • Total Members
      132,689
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
    • EndlessSummer
      I only notice recently every time I eat green beans the roof of my mouth gets slightly itchy and I get extreme dizziness.     I get shaky and sweaty and it last for an hour or two before it goes away. I’ve been allergy tested in the past for food allergens only two came back positive (both in the tree-nut family) nothing in the legumes.   (I do have a celiac disease diagnosis, the reason I was food allergy tested was because I ate a walnut and my lips swelled up)  I decided to test this out to be sure so I ate a couple of cooked green beans last night within 15 minutes I was spinning, my shirt drenched in sweat. My heart racing.   I’m not sure what this is, I do have issues with others vegetables  as my stomach doesn’t seem to tolerate them. Even when they’re cooked I just can’t digest them but they never made me as dizzy and sweaty as the green beans.    anyone else experience this?
    • ShariW
      I have found that in addition to gluten, I am sensitive to inulin/chicory root fiber. I wondered why I had gastrointestinal symptoms after drinking a Chobani yogurt drink - much like being glutened. Happened at least twice before I figured out that it was that chicory root fiber additive. I do not react to ordinary dairy, yogurt, etc.  For the holidays, I will only be baking gluten-free treats. I got rid of all gluten-containing flours, mixes and pastas in my kitchen. Much easier to avoid cross-contamination that way!
    • Scott Adams
      It's great to hear that your gluten-free journey has been going well overall, and it's smart to be a detective when a reaction occurs. Distinguishing between a gluten cross-contamination issue and a reaction to high fiber can be tricky, as symptoms can sometimes overlap. The sudden, intense, food poisoning-like hour you experienced does sound more consistent with a specific intolerance or contamination, as a high-fiber reaction typically involves more digestive discomfort like bloating or gas that lasts longer. Since the protein bar was the only new variable, it’s a strong suspect; it's worth checking if it contains ingredients like sugar alcohols (e.g., maltitol, sorbitol) or certain fibers (inulin/chicory root) that are notorious for causing acute digestive upset, even in gluten-free products. For your holiday baking, your plan is solid: bake the gluten-free items first, use entirely separate utensils and pans (not just washed), and consider color-coding tools to avoid mix-ups. Additionally, store your gluten-free flours and ingredients well away from any airborne wheat flour, which can stay in the air for hours and settle on surfaces. Keep listening to your body and introducing new packaged foods one at a time—it’s the best way to navigate and pinpoint triggers on your journey.
    • Scott Adams
×
×
  • 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.