Jump to content

  • 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):

Testing Confusion

lilbit

Recommended Posts

lilbit Apprentice
lilbit
Posted

OK, so this might be a really dumb question but I figure it's easier to ask here than to call my doctor AGAIN :)

Earlier this week I had my first GI appointment. After listening to my symptoms and reviewing blood work from the referring doctor, he tells me he can't diagnose me based on just that and he needed to run some further tests: He orders a CT scan, colonoscopy, and EGD.

I had the CT scan yesterday and was horribly ill afterwards. naseau and violent vomiting. I did a quick search on the net and didn't see anything saying it was "normal or common" so I called the doctor's office... They said they had to run it by the doctor and would call me back. I finally got the call in the evening from the doctor, but by this time I was alseep and was so surprised that the doctor called me back himself that when he said its not common but not unheard of so not to worry. He also told me that the CT came back normal no inflamation and no blockages. He said it was important to do the other tests now. I said ok see you Monday and hung up before I even THOUGHT to ask.. Why?? Why is it important to do the other tests if the CT came back normal?

I was sent to him to check for IBD and celiac. I know the small bowel biopsy is important for celiac but if there is no inflamation why the colonoscopy...

Any insight is appreciated. If a simple CT caused that much grief, I'm not looking forward to the other stuff...

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

Celiac.com Sponsor (A8-M):


WheatChef Apprentice
WheatChef
Posted

CT/colonoscopy both do nothing to test for celiac disease.

What sort of blood work had the previous doctor done to refer you for celiac disease?

AlysounRI Contributor
AlysounRI
Posted

Hi lilbit:

And welcome to the boards :)

You sound like you are going for a lot of tests.

Yes, the endo is very important to either diagnose or rule out celiac.

BUT, if you've ever been diagnosed with IBS then the GI doc will want to check for colitis issues too.

It's not a bad idea to rule out colon issues, esp. if you have a few polyps down there they can remove.

I am not sure why he did a CT scan, however!!

If you are fully awake for that, don't worry.

They put you out for the endo/colon procedure.

You really don't remember a thing.

They also make sure that they give you anti-nausea drugs in the cocktail they give you when they put you out.

I hope you get some concrete answers from your testing.

Wheat chef, what is an EGD. I thought that was an alternative name for an endoscopy???

Good luck!

~Allison

WheatChef Apprentice
WheatChef
Posted

I'm just going to delete that post, it's confusing and based off the idea that I had thought that in taking biopsies from the small intestine they actually looked at more than just the very first small turn (duodenum). Now I see how they can miss the damage!

AlysounRI Contributor
AlysounRI
Posted

I'm just going to delete that post, it's confusing and based off the idea that I had thought that in taking biopsies from the small intestine they actually looked at more than just the very first small turn (duodenum). Now I see how they can miss the damage!

An EGD is considered this:

EGD is an abbreviation of Esophagogastrodudenoscopy. It involves visualization of esophagus, stomach and duodenum through a long tube with camera at its one end.

So is that the procedure they use to check for villi damage in the small intestine?

jerseyangel Proficient
jerseyangel
Posted

An EGD is considered this:

EGD is an abbreviation of Esophagogastrodudenoscopy. It involves visualization of esophagus, stomach and duodenum through a long tube with camera at its one end.

So is that the procedure they use to check for villi damage in the small intestine?

Yes. They do a visual inspection and take (hopefully) numerous samples to biopsy since the damage is microscopic. Damage can still be missed this way, since the small intestine is more than 20 feet long. That is why a positive biopsy can rule Celiac in, but a negative one can't rule it out.

lilbit Apprentice
lilbit
Posted
  • Author

First they did just a chem panel (I think) noticed that I was really low on B12 (started getting shots) and calcium was really low. I don't have the blood work in front of me but most of my viatmins and minerals were either low or in the normal low range except sodium that was in the normal high range...

I haven't been diagnosed with anything yet... I had some rectal bleeding with bothered the doctor so that's why the colonoscopy I think.

The first dr did do blood tests for celiac but came back neg. but since my dad (type I diabetic) was recently diagnosed as well as a paternal aunt, he decided to send me to the GI...

I have a really sharp pain in my right side I thought was from gas, that's prob why he did the CT? I feel like I'm playing catch-up trying to understand all the testing and whys... I never even heard of celiac until a few weeks ago!

For the past few years I've avoided the dr since I always get told; "You are just getting older... deal with it" or its all in your head... lol!

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

Celiac.com Sponsor (A8-M):


bluebonnet Explorer
bluebonnet
Posted

i had a ct scan done for abdomen pain and it came back saying a colonoscopy is recommended due to thickening of the mucosal lining. (i'm actually getting one done this tuesday along with an endoscopy). celiac has been diagnosed but we feel like they are necessary to see what/if there's anything else going on in there.

and yes, the endo will biopsy the villi but if it comes back negative don't rule celiac out incase they sample from a healthy area which isn't uncommon. its good that your doctor isn't just blowing you off (i had a couple over the years do that). it sounds like he is trying to be thorough. best wishes! :)

lilbit Apprentice
lilbit
Posted
  • Author

Thanks bluebonnet! I'm having to colonoscopy monday and the endo the following week... The doc seems ok so far. At least he didn't tell me it's just stress or I'm getting older! Is it ok to ask them to take alot of samples? I don't think I'll be allowed another biopsy...

sa1937 Community Regular
sa1937
Posted

Any insight is appreciated. If a simple CT caused that much grief, I'm not looking forward to the other stuff...

Egads, I'm scheduled for a CT scan on Weds. and I really don't know why. My appt. with my GI doc on Mon. was all of 10 min. (He had been out of town for a family emergency for 3 weeks so am sure he got behind). Anyway, it's called a CT Enterogram.

I know the scope can only go a short distance into the duodenum so I would think the CT scan will probably reveal a lot more. My EGD/biopsy on April 9 was positive for celiac and I also have gastritis and duodenitis so perhaps that's the reason for the CT scan. Can anyone shed more light on this?

If it puts your mind at ease, the EGD wasn't that bad...I think my fears were mucho greater than the actual procedure. And I am not looking forward to a colonoscopy, which will eventually be done.

I hope everything goes well for you!!!

WheatChef Apprentice
WheatChef
Posted

sa1937:

-itis simply means an inflammation of whatever word proceeds it (stomach inflammation, duodenum inflammation). They may be looking to a CT scan to determine just how far the inflammation goes. If you have celiac, the inflammation is no surprise and hopefully should eventually correct itself with a gluten free diet.

I'm not sure of the exact logic behind scheduling a ct scan and colonoscopy anytime soon after diagnosing celiac disease as you're bound to have damage related to gluten that could cloud any observations, but they may be just trying to make sure they find everything that's going on with you.

sa1937 Community Regular
sa1937
Posted

Thanks, WheatChef! Yes, I do have celiac diagnosed via a positive celiac panel as well as biopsy. The inflammation does show up on the photos I was given after my EGD. He said on Mon. that he wasn't terribly concerned about the gastritis or duodenitis. Maybe he's just being very thorough, which is not necessarily a bad thing. Guess I'll be checked from top to bottom, literally. laugh.gif

He wants the colonoscopy done because of my age, although he's not in a rush to get it done. ph34r.gif

lilbit Apprentice
lilbit
Posted
  • Author

I still haven't had the EGD (that is next week) but I had the colonoscopy and the initial word is:

diverticulosis

internal hemorrhoids

biopsies done including biopsy of the mucosa...

I'm fairly young (early 30's) and in shape and I eat pretty well- I read the diveriticulosis happens with a high fat low fiber diet (def not me!)

so, what do the experts think? could all that be caused by celiac?

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Mimiof2's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      9

      EDG 3 years ago fine, now it shows focal villous blunting,

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"
    2. Scott Adams
      0

      Woman Refuses to Share Gluten-Free Cake—And Sparks a Bigger Conversation

    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      361

      Terrible Neurological Symptoms

      My dad had an Abdominal Aortic Aneurysm. Fortunately, it was discovered during an exam. The doctor could feel my dad's heart beating in his stomach/abdomen. The aneurysm burst when the doctor first touched it in surgery. Since he was already hooked up to the bypass machine, my dad survived ten more years. Close call! Triple A's can press on the...
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to HectorConvector's topic in Related Issues & Disorders
      361

      Terrible Neurological Symptoms

      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and...
    5. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      361

      Terrible Neurological Symptoms

      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,072
    • Most Online (within 30 mins)
      10,442
    Liley
    Newest Member
    Liley
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
    • Aretaeus Cappadocia
      Terrible Neurological Symptoms

      By Aretaeus Cappadocia · Posted

      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and it's something else entirely. @Scott Adams's mention of shingles is interesting. It seems possible but unlikely to me, but who knows. However, I am writing here to reinforce the idea of getting the shingles vaccine. Ask anyone who has ever had shingles and they will bend your ear telling you how bad it is. I watched my wife go through it and it scared the bejeebers out of me. Even if you had the chicken pox vaccine, you really want to get the shingles vaccine.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes and goes randomly as before again.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      I had MRI scan a few years ago showing everything normal, and now it's no longer triggering the nerve pain when I bow my head today - it only seemed to happen yesterday, and that was the only time it happened! Just seemed weird as no movement has caused my usual nerve pain before. It's normally just random.
×
×
  • Create New...