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Testing Confusion

lilbit

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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...

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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!

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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?

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      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
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      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
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