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Am I Ever Going To Get A Diagnosis?

2johndeereboys

By 2johndeereboys
in Doctors

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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!!

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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

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

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!

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