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):
    GliadinX

    Celiac.com Sponsor (A1-M):
    GliadinX

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

Am I Ever Going To Get A Diagnosis?

2johndeereboys

By 2johndeereboys
in Doctors

Recommended Posts

2johndeereboys Explorer
2johndeereboys
Posted

Hello all!

As some of you probably already know I have yet to be formally diagnosed. I had a Celiac Panel drawn up 2 weeks ago tomorrow and I am still waiting on the results :rolleyes:

I am soooooo tired of waiting!! I wanna know if I have celiac disease or not! Plus I am so scared I will get a negative result. Even tho I know false negatives are fairly common with this test. And if I do get a negative result I am afraid she (my Dr) won't order the biopsy.

I am from a small town in South East Mo (350 people) and I have to travel to a town of about 17,000 which is about 20 min away to get any medical care! I guess this all just boils down to me being afraid of EVERYTHING! :unsure: I really have no other options if my fears come true!!!

Well thanks for listening! Maybe I am just counting my chickens before they hatch!

Have a good night everyone!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Little Northern Bakehouse
Little Northern Bakehouse

Celiac.com Sponsor (A8-M):
Food for Life

Poppi Enthusiast
Poppi
Posted

You don't need permission from a doctor to stop eating gluten. If your bloodwork comes back negative and your doctor won't order the biopsy then just stop eating gluten and see what happens.

I chose not to get tested for a number of reasons. The biggest one was that I had accidentally gone gluten free for a couple of weeks while on a cleanse and just wasn't willing to make myself sick again for a few months. Also, I don't have life insurance or critical illness insurance right now and I do't want any offical diagnosis of celiac to drive the rates up. I gather this can be an issue for health insurance in the states. If you've never been formally diagnosed then you don't have a pre-existing condition, right?

2johndeereboys Explorer
2johndeereboys
Posted
  • Author
  On 5/24/2011 at 11:38 PM, Poppi said:

You don't need permission from a doctor to stop eating gluten. If your bloodwork comes back negative and your doctor won't order the biopsy then just stop eating gluten and see what happens.

I chose not to get tested for a number of reasons. The biggest one was that I had accidentally gone gluten free for a couple of weeks while on a cleanse and just wasn't willing to make myself sick again for a few months. Also, I don't have life insurance or critical illness insurance right now and I do't want any offical diagnosis of celiac to drive the rates up. I gather this can be an issue for health insurance in the states. If you've never been formally diagnosed then you don't have a pre-existing condition, right?

Thanks Sara!! :D

I thought about adopting the gluten free diet even if my results are negative. I HAVE to do something! My symptoms are getting worse everyday. I have had chroinc D for almost a year now. And we are leaving for vacation in 3 weeks and I am so scared to death of being trapped in a car on the road for 10 + hours.

I really appreciate your input!!

Have a good night!!

:)

lcarter Contributor
lcarter
Posted

Here is what I do when traveling and will need to visit restaurants with fellow travelers. I always carry small pull-tab cans of tuna fish. Then, I order a plain veggie salad [for example: Subways are found everywhere, frequently even in airports] and order it with a simple dressing [oil+vinegar or just squeezed fresh lemon]. I carry gluten-free crackers/pretzels or buy basic potato or corn chips. Sometimes restaurants have simple grilled chicken breasts and steamed veggies which are another choice. Otherwise, I make my own safe trail mix of nuts and dried fruits, a bag of prepared carrot sticks and/or celery sticks, Kind or Laura bars and anything else "snacky" you like. Hope this helps.

Mariq Newbie
Mariq
Posted
  On 5/24/2011 at 11:21 PM, 2johndeereboys said:

Hello all!

As some of you probably already know I have yet to be formally diagnosed. I had a Celiac Panel drawn up 2 weeks ago tomorrow and I am still waiting on the results :rolleyes:

I am soooooo tired of waiting!! I wanna know if I have celiac disease or not! Plus I am so scared I will get a negative result. Even tho I know false negatives are fairly common with this test. And if I do get a negative result I am afraid she (my Dr) won't order the biopsy.

I am from a small town in South East Mo (350 people) and I have to travel to a town of about 17,000 which is about 20 min away to get any medical care! I guess this all just boils down to me being afraid of EVERYTHING! :unsure: I really have no other options if my fears come true!!!

Well thanks for listening! Maybe I am just counting my chickens before they hatch!

Have a good night everyone!!

I had my bloodwork drawn a week ago yesterday, but haven't heard anything yet, either. I plan on calling my dr tomorrow to see if they have received the results. I also need to request a copy of all lab results so I can see the numbers myself. Just in case they say it's inconclusive.

Not sure what my dr has planned when the bloodwork comes back. When I asked what happens if it's positive/negative for celiac, I was told "she will explain everything to you when the bloodwork comes back". Not too happy about that, so we shall see.... My understanding is some drs will diagnose (sp) if bloodwork is positive, and you have a good response from the gluten-free diet. Most will not do any further testing if negative, but if positive, they will have a biopsy done.

viviendoparajesus Apprentice
viviendoparajesus
Posted

I think you got to do what is best for you. I agree though that you can go on a gluten free diet without an official diagnosis of celiac's. I was told I essentially have it yet I cannot officially be diagnosed with celiac's given I did not have the standard accepted tests for it. Rather I had the genetic tests for gluten intolerance done. Even if the tests were not positive I still would probably be gluten free since it helped my digestion, skin, decreased my pain, etc. You could also try another doctor if having test results is important to you. I was also against further harming myself by going back on gluten when I feel better without it. I also tend to pass tests and have negatives since my symptoms are extensive, yet tests do not seem to convey my pain. I think the other poster made a good point about not having the diagnosis, which can be used against you when it comes to insurance (preexisting condition). Know that you are not alone in your struggles. Best wishes! :D

  • 3 weeks later...
Mummyto3 Contributor
Mummyto3
Posted

Have you got your results now? I'm currently waiting. I had mine drawn on Friday. My daughters results took 2 weeks to come back. It felt an age!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Lakefront Brewery
Authentic Foods

Celiac.com Sponsor (A8-M):
Tierra Farm

Archived

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

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


  • Member Statistics

    • Total Members
      130,300
    • Most Online (within 30 mins)
      7,748
    Liss28
    Newest Member
    Liss28
    Joined
  • Celiac.com Sponsor (A20):
    Tierra Farm

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):
    GliadinX


  • Celiac.com Sponsor (A21):
    Holidaily Brewing Co.


  • Upcoming Events

  • Posts

    • Wheatwacked
      Ocd making gluten fears unmanageable. Need advice

      By Wheatwacked · Posted

      How high is too high?  I take 10,000 IU vitamin D3 every day.  My blood is stable at 80 ng/ml (200 nmol/L).  Even at 10,000 a day it took 8 years to raise it to 80.  Higher levels of 25(OH)D in blood can moderate the autoimmune attack.  Vitamin D Is Not as Toxic as Was Once Thought Lower vitamin D levels have also been associated with increased OCD symptom severity.  This is a most dangerous popular belief. As mentioned you are suffering from vitamin and mineral deficiencies.  Part of the recovery, that is never explained by doctors, is replenishing your deficits.  Celiac Disease is a disease of malabsorption.  The Western diet is a diet of deficiency.  That is why many...
    • Scott Adams
      Finding gluten free ingredients

      By Scott Adams · Posted

      I completely understand the frustration of finding reliable gluten-free ingredients—it's exhausting when trusted products disappear or companies don't respond to safety inquiries. For teff flour in bulk, check out Azure Standard or Bulk Foods; both often carry gluten-free grains in larger quantities and clearly label dedicated facilities. For soy flour, Anthony's Goods tests for gluten and offers bulk options, though always verify their current certifications. For beans, peas, and lentils, Palouse Brand is a great choice—they're GFCO-certified and transparent about their farming practices. As for lentil elbow macaroni, Explore Cuisine offers similar pastas, though cross-contact policies vary. ...
    • Scott Adams
      beans in dessert recipes

      By Scott Adams · Posted

      Beans in desserts are a fantastic way to add moisture, structure, and protein while keeping recipes gluten-free. Black bean brownies are a classic, but other beans like adzuki and pinto can also work well—adzuki beans are naturally sweet and often used in Asian desserts, making them great for cookies or cakes. Lentils, especially red lentils, blend smoothly into batters and can replace flour in recipes like blondies or muffins. Since you’re allergic to chickpeas, you might try navy beans or cannellini beans for a milder flavor in vanilla-based desserts. For less crumbliness, blending cooked beans into a paste helps bind the dough, and adding a bit of xanthan gum (if tolerated) can improve...
    • lmemsm
      Ocd making gluten fears unmanageable. Need advice

      By lmemsm · Posted

      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices...
    • knitty kitty
      Ocd making gluten fears unmanageable. Need advice

      By knitty kitty · Posted

      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our...
×
×
  • Create New...