Is The Biopsy Worth The Cost? (2-3 Thousand)

[margotb]

Hi! I'm posting in a state of confusion and frustration, and I am hoping to find some informed people to respond, or at least some people who have gone down this road.

Here's my story in a nutshell:

In October and November 2010, I was traveling in Colombia and found myself increasingly fatigued, prone to infections, and so tired I just didn't want to do anything or talk. I came back to the U.S. and in late November my doctor found that I tested positive for:

--iron-deficient anemia

--the IGG and IGA antibodies used to test for celiac

The recommendation was to do the biopsy but I was already planning to travel to Argentina and had the plane ticket. So I went, cut out gluten completely, and felt much better while dancing tango and being very active.

I came back to the US and started eating gluten again in preparation for the biopsy to confirm the diagnosis.

I have eaten gluten now for four weeks and for the last two weeks have been feeling worse and worse just like I felt in october and November, so tired that just taking a shower and getting dressed feels like a struggle. I am still taking iron pills and the iron levels had gotten better so I doubt it's just anemia.

Now my biopsy is scheduled for tomorrow and the hospital called to do a registration form and the woman informed me the endoscopy will cost two to three thousand dollars. This comes as a complete shock.

I feel confused about whether it is worth it to pay two to three thousand dollars when I have read it is likely that these endoscopy/biopsy tests can yield inconclusive results (i.e. not show villi damage). But then how to explain the unexplained anemia, the positive antibodies, and the fact that I feel so exhausted after two weeks of eating gluten?

Can anyone advise on the value of doing this test, what it ordinarily costs, etc.?

Thank you!

[Jestgar]

My vote - skip the biopsy. Your diet is under your control and you don't need a doctor's permission.

[GlutenFreeManna]

You have positive blood tests and positive response to the diet. That is more than some of us have. Skip the biopsy. You are just redamaging yourself by eating gluten again for the required amount of time to do it anyway.

[mushroom]

Not worth the money when you have the answer anyway Don't eat that stuff! Your body obviously doesn't like it no matter what any test says.

[eatmeat4good]

I agree with the others.

You know gluten is hurting you.

Skip the test.

Gee, you could take another vacation or you could stock your gluten free pantry really well in preparation for your new life.

Heck...Do both!

[MsCurious]

If you have postive blood tests for celiac, and your symptoms are relieved with gluten free diet, I would just go with that. If you want a more firm diagnosis (aside from that endo that costs way too much for something you already know works)... I would ask doctor to run a genetic test, to see if you have the celiac gene(s) just as confirmation that you are probably right about your diagnosis, OR another one of the blood tests if you would feel better with a confirmation of another positive blood test, but either of those are much less expensive than the endo. Did you contact your insurance company to double check whether its covered? Just some ideas and thoughts.... Good luck to you!

[Cara in Boston]

The biopsy may not even be accurate. Four weeks on gluten may not be long enough.

[margotb]

Hi all. Thank you for your thoughts. . . Just thought I would provide an update.

I postponed to think and research more and decided to go ahead with the biopsy. I found that I respected medical authority in this case--two doctors told me they recommended it because this would be a 60-year commitment to a strict diet and I should know. And I found that I agreed. In the long run, $2K would not be a lot of money and I am someone who likes to get to the bottom of things. I like depth.

The crazy thing was the health plan Kaiser Permanente would not tell me how much the endoscopy would cost. Because I have a deductible plan (and no one understands deductible plans, they told me, incredibly, about their own plan), they said it will be a range of $2K to $4.6K. After six calls, no one could say. On the day of at the admitting department a paper-pusher told me it would likely cost $2k. The people in the billing department seemed like zombies, and the doctors said they had no idea about cost.

I arrive in the OR to have the procedure and meet my GI specialist for the first time. We talk about my case and my books. I am a writer. He seemed more interested in my work than celiac, really. I told him, please only do what is necessary because I am paying out of pocket. He asked, have you considered doing the procedure unsedated? A surgical assistant called down and found out the endoscopy cost $70 without sedation.

I did the endoscopy without sedation. It was very challenging. Every time he pumped air into the intestine to take another biopsy sample, I gagged with a small-garden-size hose down my throat to my stomach. I was just holding on to get through it with the surgical assistants rubbing my hair and telling me I was doing such a good job and it was almost done. The doctor told me it would take 7 minutes. I have no idea how long it lasted. My nose was running after they finally removed the hose from my mouth (with metal at the end) and I was shaken inside. Literally.

The doctor had told me that most people around the world do the endoscopy without sedation. I wonder if that is true. Because I spent the last year traveling in South America and went to medical clinics 8 times during my travels (probably got so many infections because of the celiac), I thought--if they can do it, so can I. I'm glad I saved the $2K. If they try to charge me more, I will engage a lawyer to fight the bill.

And the results show moderate to severe celiac damage. So there is no doubt now.

I am in the SF Bay Area if anyone knows of meetups. It is time to meet celiacs.

[jemms]

wow, margot!! I cant believe how brave you were to do that...I dont think I could have. I do think that I would have gone thru with the endoscopy as well. I am someone that likes to get to the bottom of things and have a definitive answer.

[Jaymie Jaymz]

You must be one tough cookie, because there's no way I'd do that procedure without sedation. At least it was worth it in the end, since you got conclusive results that backed up your blood tests.

How many weeks total did you do the gluten challenge before the day of the biopsy?

[kareng]

Actually, about 20 years ago, the hospital I worked at was doing endos & colonoscopies with valuim only. Glad you got this done and got a definite answer. Definite answer are great!

[hockeymomofceliacchild]

Wow you are one brave person! I couldn't imagine doing that with out sedative but holy, what a difference in price! I tend to forget how easy we have it here in Canada, the scope is covered under OHIP and we don't pay anything. Anyone I talk to can't believe we had to pay $125 to have the bloodwork done for celiac test....and I have to admit I grumbled about it...thanks for reminding me what a good thing we have here

Again very brave! Way to go

[margotb]

You must be one tough cookie, because there's no way I'd do that procedure without sedation. At least it was worth it in the end, since you got conclusive results that backed up your blood tests.

How many weeks total did you do the gluten challenge before the day of the biopsy?

I did my gluten challenge for 5.5 weeks. Two GI specialists told me very different things about how long was necessary. The head of the department told me I should wait for three months (and I thought NO WAY AM I SITTING IN BED FOR TWO MORE MONTHS!) and the GI specialist who did the procedure thought 5.5 weeks was plenty. Apparently it was since the test showed moderate to severe damage! I am so glad that I did listen to my body in this sense and not wait any longer.

[anna34]

Wow you are one brave person! I couldn't imagine doing that with out sedative but holy, what a difference in price! I tend to forget how easy we have it here in Canada, the scope is covered under OHIP and we don't pay anything. Anyone I talk to can't believe we had to pay $125 to have the bloodwork done for celiac test....and I have to admit I grumbled about it...thanks for reminding me what a good thing we have here

Again very brave! Way to go

I think that Ontario is the only province that makes citizens pay for the blood test if you get it done at a lab. If it's done in a hospital, it's free. The other provinces cover the bloodwork no matter where you get it done. Apparently there is a group lobbying the Ontario government to change this situation.

[love2travel]

I think that Ontario is the only province that makes citizens pay for the blood test if you get it done at a lab. If it's done in a hospital, it's free. The other provinces cover the bloodwork no matter where you get it done. Apparently there is a group lobbying the Ontario government to change this situation.

That may be because both of my scopes were done (and thankfully covered) and my bloodwork was also covered. I live in Alberta.

[love2travel]

wow, margot!! I cant believe how brave you were to do that...I dont think I could have. I do think that I would have gone thru with the endoscopy as well. I am someone that likes to get to the bottom of things and have a definitive answer.

Margot, I agree that you were courageous. I had both the gastroscopy and colonoscopy done at the same time so opted for the drugs.

I, too, am an analyzer/researcher and feel the need for definitive answers. It bugs me not knowing things! Glad you have some answers so you can proceed with living.

[nuttmegs17]

Wow you are TOUGH! I too am doing the endoscopy as i want as definitive an answer as possible I will cut out gluten no matter what but can see myself cheating in a few years If I feel better and someone offers me a delish looking pizza. I will not skip the sedation as I am actually looking forward to it! I have no idea how much it will cost. I am more annoyed that my doc ordered a very expensive CT instead of being tipped off to possible celiac as I could have applied the money to this instead.

[MsCurious]

I'm so happy for you that you have an answer... and a solution! That's wonderful... good luck with your new gluten free lifestyle.