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Just been for Endoscopy

Posted , 4 users are following.

Dawg
Dawg

Hello all,

As posted a few weeks ago some time in December I have some blood tests and tested positive for Coeliac Disease and referred for a Gastrooscopy.

After a fair amount of anxious waiting the day has finally come and today I attended my appointment. I opted for the throat spray rather than the sedative and all went as well as can be hoped. Not something however I would want to repeat anytime soon.

I wonder if anyone can shed any light on the report o have received. It's says 4 biopsies have been taken from the Duodenum and sent for testing.

This is a summary of the report I would be grateful if anyone could shed any light of this even gives anything away.

Referral Reasons

Reasons: Coeliac Disease

Co-Morbidities: None

Current Medication: None

WHO Grade: Grade 0

Abnormalities & Procedures

Region: Oesphagus

1 - Lower Oesophagus

- Oesophagitis Los Angeles Grade A

Region: Duodenum

2 - Second part

- 4 x Biopsy taken and placed in 1 container

I hope this gives something away I like to know what's happening. I suppose it's only 2-3 weeks for the result to be with my GP.

Diagnosis (recorded at procedure)

Oesophagus - Oesophagitis (Type: Reflux)

Stomach - Normal

Duodenum - Normal

Report Comments

Mild Oesophagitis. Biopsies of D2 taken

HISTOLOGY: Pot 1 - 2nd part of duodenum

1 like, 9 replies

9 Replies

  • aveline
    aveline Dawg

    Posted

    Hi, Dawg!

    Those results look good, but chances are quite high still that you have CD. When my son had this procedure done (under full sedation), his Dr. said in one breath that everything looked "peachy". In the next breath she explained that no one can tell with the naked eye, and studies have proved that surgeons get this wrong alllll the time - looks healthy but pathological or looks unhealthy but no real damage.  So, yes - time will tell - the lab results are what's going to really say for sure.

    So, keep hanging in there!!! If you feel like gluten makes you sick, the up side is you can eliminate it starting now. smile  If you want to say good-bye to your favorite foods, this is the time to do it...it would seem.

    I'll bet if you do have CD and you stick to the strict GF protocol, your Oesophagitis/Reflux will heal as the rest of you does! 

    GL and let us know how you get on!

  • Chikimeo
    Chikimeo Dawg

    Posted

    Hi Dawg,

    Thank you for this post as, I have my upcoming endoscopy next week, so your post has put me ease with regards to the procedure smile

    Sending best wishes and keep your chin up, we're all in this together, you're not alone smile

    Kindest regards,

    - Chikimeo.

  • Mark1311
    Mark1311 Dawg

    Posted

    One quick comment.  Continue to eat a normal diet until your diagnosis of Coeliac disease is confirmed by both blood test AND biopsy.  This is because sometimes tests can come back negative or inconclusive, especially biopsies and re-testing can be required. Any re-test will clearly be affected by a change in your diet. If you go Gluten Free to early you will not produce the necessary antibodies for an accurate bllod test and your small intestine will begin to heal, which again will adversely affect your diagnosis. I hope this is helpful. Kind regards, Mark
  • Dawg
    Dawg

    Posted

    Well after the blood test hinted Coeliac Disease and I was referred to the hospital for the endoscopy.

    The endoscopist clearly wrote Oesophagitis due to reflux, which to me intimates something isn't quite correct. I am still vomitting everyday, belching a lot, having heartburn everyday, abdominal pain and diarrhea. I may be premature in doing this but 2 weeks after endoscopy I have just called my doctors surgery to be told that the notes state 'no further action required'.

    From this I would take the assumption I do not have coeliac disease, which is great....but.....what about my symptoms etc.

    Don't know what to do?

    • aveline
      aveline Dawg

      Posted

      Mark1311 makes an excellent point - you're not really done when the test is completed...you need to know the results. 

      So, did the pathology report come back from the lab? Were your tissue samples healthy? You need to know that, for sure, before you can move on.  If CD has been ruled out for sure now, then you are right to keep seeking tests, treatments, etc. until you have an answer and you're well.

      See (or maybe change??) your dr. again when you can as "no further action" is not a sufficient answer when your oesophagus is eroding from the acid that isn't staying where it ought to stay...(okay, "eroding" may be a bit dramatic, but the acid could damage the tissue leading to more problems down the road). GL in this next round!

    • Dawg
      Dawg aveline

      Posted

      Aveline and Mark1311 thank you for your advice and I cannot leave it where it is I have had no letter from the doctor no phone call. I've had to call my self and they have told me nothing at all just the receptionist tells me 'no further action required'. This isn't the first time this has happened I have had these symptoms for nearly 13 years and this is as far as it gets.

      Although this is the first time Ceoliac has been found in blood tests and I have been referred to endoscopy.

      My energy levels are low anyway and I just feel fed up of chasing them to get things done. The symptoms have been progressively getting worse and I don't suppose that is going to change without me changing something but I'm not sure what to do.

      I have requested that MY doctor call me back on Monday to discuss the results. Hopefully I can tell him then that I need to know more.

  • Mark1311
    Mark1311 Dawg

    Posted

    Hi again,

    You need to talk to your Doctor about the specifics of the test. It is by no means unusual to have a positive blood test and a negative biopsy. It very much depends upon who is doing the biopsy and where in the gut they take the samples from. This very same thing happened to my daughter. The Doctor sent her for a blood re-test which again was positive. At this point she got referred to the Consultant Endocrinologist at Guys who undertook a second biopsy procedure and correctly identified the Coeliac condition. In my own case there was a lifetime of damage which was completely obvious, but if it's early days it can be easy to miss. You'll need a second run at it (I know, gastroscopy isn't huge fun but there are worse things..... ;-)

  • Dawg
    Dawg

    Posted

    Further to all the comments above I have just had a telephone appointment with my Doctor and he has confirmed my results were positive for Coeliac Disease. My Doctor has also advised to begin a gluten free diet with immediate effect.

    There was some confusion as the Doctor thought the hospital would proceed with treatment rather than refer back to him.

    He hasn't said anything about a dietitian just that I need to talk with prescriptions regarding the food I would like.

    I'm struggling a bit here I have gazed over others comments regarding prescriptions stable foods and gluten contamination etc. Do you have a good source I can use I need to know how careful I have to be with regard contamination and what foods are available. Sorry the fact that I now know means I feel a little daunted by the whole thing

    • aveline
      aveline Dawg

      Posted

      Oh, boy, Dawg!  That is a lesson to us all - it's really up to us to dot the "i"s and cross those "t"s!  

      HUGS to you! This is overwhelming and will be for a little while. It will also be VERY well worth it - we promise you!! exclaim

      I'm in the U.S. but one of our trusted brands is Dr. Schar, which (spelled differently in the U.K., perhaps) is available where you are. Ditch your cutting boards, colanders, any cookware with scratches and things like toasters, cookie racks, etc. Time for new gear, to be forever free from gluten!!  Try to do most of your own cooking for now. 

      Another word on trusted brands: check for certification with the GF claim. If it's something like a plain frozen vegetable, you're going to be okay with or without a GF label. But, when it comes to things like crackers and breads, it's best to be super-careful of course! Not sure about where you live but in the U.S., thousands (more??) were hurt by Cheerios' GF claims. It's very sad, but it happens!

      An odd thing that helps...? Tell EVERYONE. Really.  Don't be a bore, necessarily, but mention it to everyone you see! Chances are that someone knows someone else and the next thing you know, you have a small network - where to eat, what to eat, etc. There are support groups and you should seek them out and join!  Heck, I started one with a friend in my town - but we're parents of Coeliacs, so it's a child-focused group. (Also much needed!)

      Oh, and dairy may not be your friend for a while - lactose (sugar in milk, lots of cheese, ice cream, etc) is broken down by the villi and yours probably isn't producing lactase enzyme right now.  So, opt for lactose-free or take the supplements (Lactaid in the US). Cheddar is an example of naturally Lactose-Free dairy, so that's another option - and you can look up more... Some avoid Oats for a while - you just have to be REALLY careful that they're GF and you should be fine.

      GL!!

       

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