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

Waiting On Results?

DestinyLeah

Recommended Posts

DestinyLeah Apprentice
DestinyLeah
Posted

Hi, I am new to the boards and had a question I was hoping someone could help with.

I was hospitalized a month ago, and the team of four docs on my case could not stop my vomiting and diarrhea without completely keeping food out of my system. My mom eventually asked for a GI specialist after a week of this tug-of-war with my digestive system, and negative tests for Cushing's Syndrome, parasites, infections, and viruses, along with four blown veins from the large amounts of potassium chloride and water they had to push into me to keep me functioning. The GI doctor asked my mom about my childhood and concluded that I may have celiac.

Two days later, I had positive results from blood tests (two different doctors had ordered the same test at once, both returned positive from separate labs) and was scheduled for an endoscopy. The endoscopy went well, but revealed a stomach ulcer not caused by H Pylori, and that 3/4 of my small intestine was nearly too injured to function at all. Biopsies were taken, and I was put on a gluten free diet. Within a week, I had regained the lost 10 pounds, was holding a steady heart rate and hydration level, and had gone longer without nausea and tummy pain than I had ever remembered before. I was released with a "tentative diagnosis" and told to call for results in another week.

I have called. And called... and called. It has been a month, and still the lab has no definite answers, as noone there knows what they are looking for, and a specialist had been called in at last check.

My insurance denied the entire claim for $42,000 and the hospital is demanding payment, but have yet to supply their end of the deal with a "yes" or "no".

After a month, can they even get the information they need from the biopsy, or is it no longer viable, and I will need a new one? :(

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

Celiac.com Sponsor (A8-M):


2kids4me Contributor
2kids4me
Posted

Biopsies dont go bad - not to worry. The samples are taken and then frozen and thin tissue slices taken and placed on a slide and stained.

It's frustrating to say the least that a histopathologist (the person who would examine your slide) hasn't written a report yet of his findings!

I would ask questions and find out why it's taking so long! Why would they have people looking at it - who have no clue? Isn't the "specialist", the one who should have looked at it all along?

Hope you get an answer soon.

Based on your response to gluten free, and the blood results - I think that is conclusive, at least in my mind

Sandy

ravenwoodglass Mentor
ravenwoodglass
Posted
Hi, I am new to the boards and had a question I was hoping someone could help with.

I was hospitalized a month ago, and the team of four docs on my case could not stop my vomiting and diarrhea without completely keeping food out of my system. My mom eventually asked for a GI specialist after a week of this tug-of-war with my digestive system, and negative tests for Cushing's Syndrome, parasites, infections, and viruses, along with four blown veins from the large amounts of potassium chloride and water they had to push into me to keep me functioning. The GI doctor asked my mom about my childhood and concluded that I may have celiac.

Two days later, I had positive results from blood tests (two different doctors had ordered the same test at once, both returned positive from separate labs) and was scheduled for an endoscopy. The endoscopy went well, but revealed a stomach ulcer not caused by H Pylori, and that 3/4 of my small intestine was nearly too injured to function at all. Biopsies were taken, and I was put on a gluten free diet. Within a week, I had regained the lost 10 pounds, was holding a steady heart rate and hydration level, and had gone longer without nausea and tummy pain than I had ever remembered before. I was released with a "tentative diagnosis" and told to call for results in another week.

I have called. And called... and called. It has been a month, and still the lab has no definite answers, as noone there knows what they are looking for, and a specialist had been called in at last check.

My insurance denied the entire claim for $42,000 and the hospital is demanding payment, but have yet to supply their end of the deal with a "yes" or "no".

After a month, can they even get the information they need from the biopsy, or is it no longer viable, and I will need a new one? :(

First off welcome to the celiac world, hopefully you will feel better soon.

I am addressing the insurance denial, have you called the insurance company directly to find out why they denied? Sometimes it can be as simple as the hospital sent the bills to the wrong place, it has happened to me. They would simply resubmit. If they are withholding payment because you don't have a 'diagnosis' yet talking to someone at the insurance company might help also. It seems like this was definately an unjust denial, you do have the right to find out why and fight it. I would also contact the hospital itself and ask what is going on, they may be able to help also.

Stay gluten free and you have come to a great place for info and support. I hope they get everything straighted out with the billing soon.

DestinyLeah Apprentice
DestinyLeah
Posted
  • Author

I got my diagnosis today. Funny story, that. I called the GI to ask for results, and the lady at the desk responded that my results were negative for Celiac. So I grabbed a cookie, but before I took a bite, got the feeling I should call back. I asked her to look back through my charts, just to be sure. She yet again said I was negative for Celiac, then I heard my doctor yelling at her to give the phone over. She told me that I tested negative for antibodies on blood drawn after having no food for two weeks, and that it was to be expected. She then told me that due to my progress and the genetic markers, she had asked for a second opinion on my biopsy results and sure enough, I had Celiac. The nurse at the desk had seen one negative result and told me that I was free to eat whatever I wanted. My doctor said the cookie could have put my life in danger because of the amount of damage already done to my body.

I guess we know ourselves enough to question things that go against our own *gut* feelings.

The insurance talked to us, though the hospital wouldn't. The hospital is refiling with them because what was wrong on the claim was simply the patient number on a couple of meds where a chart was mixed. They have recieved my results and are going to cover full costs when the hospital finishes cleaning up the records.

Lisa Mentor
Lisa
Posted

Welcome also

When I read that you were about to take a bite out of that cookie...I yelled "NO" out load!! I bet you could here me. :o

I am relieved that you didn't and also relieved for you that the insurance is being re-addressed.

I am glad that you are feeling better. Stick with us as we travel this road together.

Archived

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

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


  • Member Statistics

    • Total Members
      131,280
    • Most Online (within 30 mins)
      7,748
    Celiac and Salty
    Newest Member
    Celiac and Salty
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • numike
      is my cleiac disease gone?

      By numike · Posted

      69yo M I have had skin cancer basal  I use a higher quality Vit D https://www.amazon.com/Biotech-D3-5-5000iu-Capsules-Count/dp/B00NGMJRTE
    • Wheatwacked
      is my cleiac disease gone?

      By Wheatwacked · Posted

      Your high lactulose test, indicating out of control Small Itenstinal Bacterial O,vergrowth is one symptom.  You likely have low vitamin D, another symptom.  Unless you get lots of sun.   Celiac Disease is a disease of malabsorption, often leading to subclinical vitamin deficiencies.  A lot of people have these symptoms just before an acute phase of Celiac Disease.  Each of the symptoms can have multiple causes that are not celiac disease,  but when you start having multiple symptoms,  and each symptom is treated as a separate disease,  you have to think, maybe these are all one cause. celiac disease. There is a misconception that Celiac Disease is  a gastrointestinal disease and symptoms are only gastro related.  Wrong.  It is an autoimmune disease and has many symptoms that usually are disregarded.  I made that mistake until 63 y.o.  It can cause a dermatitis herpetiformis rash,  white spots on the brain.  It caused my alcoholism, arthritis, congested sineses, protein spots on my contacts lenses, swollen prostate, symptoms that are "part of aging". You may be tolerating gluten, the damage will happen. Of curiosity though, your age, sex, are you outside a lot without sunscreen?  
    • trents
      is my cleiac disease gone?

      By trents · Posted

      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
    • numike
      is my cleiac disease gone?

      By numike · Posted

      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
    • trents
      is my cleiac disease gone?

      By trents · Posted

      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
×
×
  • Create New...