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Waiting On Results?

DestinyLeah

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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? :(

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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.

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