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 Celiac.com!
    eNewsletter
    Donate

Endoscopy Results


bunzilla

Recommended Posts

bunzilla Newbie

I had an endoscopy six weeks ago. Before I had it done I talked to the surgeon about the fact that I was already diagnosed with DH through blood work and skin biopsy from a dermatologist. I specifically told him I already knew I have celiac and needed to have biopsy done to rule out things like cancer. After surgery GI said I should get results in a couple of weeks.

Six weeks later his nurse calls to tell me they had no results due to insufficient sample material.

She wanted to know if I wanted to schdule an appt. with GI, I asked for what reason, she replied good question, but she thought to discuss doing it again. I didn't know what to think, my head was kind of swimming a the time. The thought of going through all that crap again, the expense, the day off work, needing a ride home from hospital. Not that it was painful or anything, just the hassle,you know? I told her to have the GI call me. she said she will but he's on vacation till next week.

So, my question, do I need to redo this procedure? My work just changed ins. with a much higher deductable so there will be significant expense. I know money shouldn't be a factor, but it does play a part. Especially if it's not really needed.

I haven't discussed this with my dermatologist yet, I have an appt. in a couple weeks. I will seek his opinion on the matter and also my pcp's opinion. I just thought I would poll you fine people for some insight in the meantime.

Ths forum is a great tool and a wealth of knowledge that I have used often.

thanks for any input.

E.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Guest scully

Oh, that's a bunch of crap, that!!! I can't believe they goofed and didn't take enough samples and then have the gall to ask if you can do it OVER AGAIN? How ridiculous!!!! I would tell them to forget it. They screwed up, you shouldn't have to pay through the nose and go through all that again. That is really nervy of them to even ask you to come back in!

You already have your celiac Dx with your DH, and that should be that. The only other thing that might be less expensive if you still feel like you need GI proof is to have a celiac panel done. That being said, there are sometimes false negatives, but still, better than having to have another major procedure done.

Just my two cents'. :)

Link to comment
Share on other sites
mushroom Proficient
I had an endoscopy six weeks ago. Before I had it done I talked to the surgeon about the fact that I was already diagnosed with DH through blood work and skin biopsy from a dermatologist. I specifically told him I already knew I have celiac and needed to have biopsy done to rule out things like cancer. After surgery GI said I should get results in a couple of weeks.

Six weeks later his nurse calls to tell me they had no results due to insufficient sample material.

She wanted to know if I wanted to schdule an appt. with GI, I asked for what reason, she replied good question, but she thought to discuss doing it again. I didn't know what to think, my head was kind of swimming a the time. The thought of going through all that crap again, the expense, the day off work, needing a ride home from hospital. Not that it was painful or anything, just the hassle,you know? I told her to have the GI call me. she said she will but he's on vacation till next week.

So, my question, do I need to redo this procedure? My work just changed ins. with a much higher deductable so there will be significant expense. I know money shouldn't be a factor, but it does play a part. Especially if it's not really needed.

I haven't discussed this with my dermatologist yet, I have an appt. in a couple weeks. I will seek his opinion on the matter and also my pcp's opinion. I just thought I would poll you fine people for some insight in the meantime.

Ths forum is a great tool and a wealth of knowledge that I have used often.

thanks for any input.

E.

What Scully said. The flamin' nerve of it!! What you wanted was to rule out other things, not diagnose celiac. What did he see??? How frustrating.

Link to comment
Share on other sites
ravenwoodglass Mentor

Since your concern and reason for having the procedure was to look for cancer or a precancerous condition and not for diagnosis of celiac I would ask for a call back from the doctor. If the biopsies were done only to look for celiac and were not biopsies of areas that looked 'abnormal' and might be questionable then I would not go through the procedure again. Cancerous or precancerous lesions, as far as I know, do have a 'look' to them your doctor will be able to tell you if that was what he biopsied. If you have DH as you know you are already diagnosed with celiac.

Link to comment
Share on other sites
wildwood Apprentice

They should really repeat the biopsy at no charge to you since it is their fault there was not enough of a sample. My daughter had an endoscopy which came back normal. The thing is they did it before her celiac panel came back. I don't think they took her symptoms seriously at first. When the lab panel came back extremely positive, I got a call that the doctor wanted to repeat the biopsy and it would be at no charge to us. The second one came back negative also. Go figure.......

Link to comment
Share on other sites
Takala Enthusiast

Oh, and he's "on vacation," huh ? I don't think so.

Go to the office Monday and tell them you are not leaving without a copy of the test report. When they balk, tell them it's the law you are entitled to a copy. Besides, what was the dimwit reading off of ? For the love of ***, it does NOT take six weeks to get a lab test back.

Then call your health insurance (what you used to have) and ask if they reimbursed him for the procedure yet. Yes or no, no waffle answers accepted.

my work just changed insurance with a much higher .... expense.

Yeah, how convenient for the doctor that you just happen to need another procedure, so you'd have to pay those costs upfront. And then trying to generate more revenue by asking you if you wanted to come in for another office visit to "discuss" this.

I would then contact your state's attorney general and file a complaint. Perhaps the state medical board also.

I don't know what your diet status is, but the longer you don't eat gluten the more likely it is that your test comes back normal..... you would have to be eating gluten continuously for weeks to get a positive result.... if you've gone off of gluten, you'd have to then go back on it, potentially making yourself ill.... surely Dr. Ripoff knows this and doesn't care.... hence he has the nurse call you while "on vacation."

Link to comment
Share on other sites
bunzilla Newbie

Thanks for the input, I should mention that the day of the procedure GI did say that it was definately positve for celiac.

He showed me a pic of the damage to the duedonum? So having celiac is not the issue, I do, and I carry on.

My dermatologist ordered the test to biopsy for cancer because of the increased risk.

I am leaning against having it done again, but like I said I need to talk to GI and Derm.

to get an informed opinion. Now if they offer to do it free, which I doubt they will, I would be more inclined to do it.

Just to have the peace of mind of a clean bill of health.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



bunzilla Newbie

UPDATE: I got a call from GI Fri. He seemed to think I was seeking a definate diagnosis of celiac, which I already had through skin biopsy and bloodwork. He said there wasn't enough material for diagnosis. The lab couldn't get the sample to "lay out right"?.

I restated that the only answer I was seeking was in regard to possible cancer.

He did say that there was no evidence of cancer and he felt we could rule that out. I told him I was doing much better being gluten-free and considered myself pos. for celiac regardless of endo. biopsy results.

no repeat endo. for me :D

Link to comment
Share on other sites
ravenwoodglass Mentor
UPDATE: I got a call from GI Fri. He seemed to think I was seeking a definate diagnosis of celiac, which I already had through skin biopsy and bloodwork. He said there wasn't enough material for diagnosis. The lab couldn't get the sample to "lay out right"?.

I restated that the only answer I was seeking was in regard to possible cancer.

He did say that there was no evidence of cancer and he felt we could rule that out. I told him I was doing much better being gluten-free and considered myself pos. for celiac regardless of endo. biopsy results.

no repeat endo. for me :D

I am glad he got back to you. I am sure you are relieved at the good news.

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to mishyj's topic in Coping with Celiac Disease
      2

      Why?

    2. - mishyj replied to mishyj's topic in Coping with Celiac Disease
      2

      Why?

    3. - mishyj posted a topic in Coping with Celiac Disease
      2

      Why?

    4. - cristiana replied to Aussienae's topic in Coping with Celiac Disease
      64

      Constant low back, abdominal and pelvic pain!

    5. - cristiana replied to Kirbyqueen's topic in Dermatitis Herpetiformis
      12

      Have this rash forming on the back of my legs. Looking for relief outside of going to the doctor.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,216
    • Most Online (within 30 mins)
      7,748

    William day
    Newest Member
    William day
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • mishyj
      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
    • mishyj
      My daughter has celiac disease and has had for a long time. She fell loses strictly gluten-free diet and recently got rid of all cutting boards in any gluten in her house at all. She just had a stool test and it came back showing of gigantic response to gluten in her diet. What could be going on since she doesn't eat any gluten and is very careful about any kind of hidden glue? Help!
    • cristiana
      I think sometimes the pain described here can be a result of a sort of 'perfect storm' of contributing factors.  Recently I had an appalling bout of lower back pain, lower burning gut pain and what felt like cramps.  I then started to think about what could have caused it and I realised it was several things that had set it off: I'd been carrying heavy luggage (back strain); I had been sitting down in a car for too long and wearing a tight belt (I have pudendal nerve issues and sacroiliac issues and this exacerbates the pain), and I had bloating and burning pain in my colon caused by eating too much soy, latte and caffeine, I guess putting further pressure in the lower abdomen.  I had this same pain prior to my diagnosis and a couple of years post-diagnosis, I'd quite forgotten how unpleasant it was. 
    • cristiana
      HI @Kirbyqueen That's great news your insurance will be kicking in soon.  Sorry to see that you have been dealing with this for six months now, but I do hope you have managed to find some relief with some of the suggestions in the meantime. Perhaps come back and let us know what the doctor says. Cristiana
    • Scott Adams
      I agree, and hopefully your doctor will contact you soon about the next step, which will likely be an endoscopy to confirm your diagnosis. Do you have celiac disease symptoms? 
×
×
  • Create New...