Jump to content

  • 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 Our Content
    eNewsletter
    Donate

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. tiffanygosci
      - tiffanygosci posted a topic in Coping with Celiac Disease
      0

      New Celiac Mama in My 30s

      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After...
    2. knitty kitty
      - knitty kitty replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

      On the AIP diet, all processed foods are eliminated. This includes gluten-free bread. You'll be eating meats and vegetables, mostly. Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well. Veggies should be fresh, or frozen without other ingredients like sauces or seasonings. Nightshade vegetables...
    3. Yaya
      - Yaya replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

      Thank you for responding and for prayers. So sorry for your struggles, I will keep you in mine. You are so young to have so many struggles, mine are mild by comparison. I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of. Following surgery: multiple symptoms/oddities appeared including...
    4. larc
      - larc replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back. My cardiologist offered me a collection of pharmaceuticals at the time...
    5. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

      So I should not eat my gluten free bread? I will try the vitamins. Thank you all so very much for your ideas and understanding. I'm feeling better today and have gathered back my composure! Thank you kitty kitty I am going to look this diet up right away. And read the paleo diet and really see if I can make this a better situation then it currently...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,921
    • Most Online (within 30 mins)
      7,748
    Serena Rodriguez
    Newest Member
    Serena Rodriguez
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After having my last baby this year, my body has finally started to find its new rhythm and balance...but things started to feel out of sorts. A lot of symptoms were convoluted with postpartum symptoms, and, to top it all off, my cycle came back about 4m postpartum. I was having reoccurring migraines, nausea, joint pain, numbness in my right arm, hand and fingers, tummy problems, hives. I finally went to my PCP in August just for a wellness check and I brought up my ailments. I'm so thankful for a doctor that listens and is thorough. He ended up running a food allergy panel, an environmental respiratory panel, and a celiac panel. I found out I was allergic to wheat, allergic to about every plant and dust mites, and I did have celiac. I had an endoscopy done on October 3 and my results confirmed celiac in the early stages! I am truly blessed to have an answer to my issues. When I eat gluten, my brain feels like it's on fire and like someone is squeezing it. I can't think straight and I zone out easily. My eyes can't focus. I get a super bad migraine and nausea. I get so tired and irritable and anxious. My body hurts sometimes and my gut gets bloated, gassy, constipated, and ends with bowel movements. All this time I thought I was just having mom brain or feeling the effects of postpartum, sleep deprivation, and the like (which I probably was having and the celiac disease just ramped it up!) I have yet to see a dietician but I've already been eating and shopping gluten-free. My husband and I have been working on turning our kitchen 100% gluten-free (we didn't think this would be so expensive but he assured me that my health is worth all the money in the world). There are still a few things to replace and clean. I'm already getting tired of reading labels. I even replaced some of my personal hygiene care for myself and the kids because they were either made with oats or not labeled gluten-free. I have already started feeling better but have made some mistakes along the way or have gotten contamination thrown into the mix. It's been hard! Today I joked that I got diagnosed at the worst time of the year with all the holidays coming up. I will just need to bring my own food to have and to share. It will be okay but different after years of eating "normally". Today I ordered in person at Chipotle and was trying not to feel self-conscious as the line got long because they were following food-allergy protocols. It's all worth it to be the healthiest version of myself for me and my family. I would be lying if I said I wasn't a little overwhelmed and a little overloaded!  I am thankful for this community and I look forward to learning more from you all. I need the help, that's for sure!
    • knitty kitty
      Help I’m cross contaminating myself,

      By knitty kitty · Posted

      On the AIP diet, all processed foods are eliminated.  This includes gluten-free bread.  You'll be eating meats and vegetables, mostly.  Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well.  Veggies should be fresh, or frozen without other ingredients like sauces or seasonings.  Nightshade vegetables (eggplant, potatoes, tomatoes, peppers) are excluded.  They contain alkaloids that promote a leaky gut and inflammation.  Dairy and eggs are also eliminated.   I know it sounds really stark, but eating this way really improved my health.  The AIP diet can be low in nutrients, and, with malabsorption, it's important to supplement vitamins and minerals.  
    • Yaya
      Does anyone here also have Afib

      By Yaya · Posted

      Thank you for responding and for prayers.  So sorry for your struggles, I will keep you in mine.  You are so young to have so many struggles, mine are mild by comparison.  I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of.  Following surgery: multiple symptoms/oddities appeared including ridges on fingernails, eczema, hair falling out in patches, dry eyes, upset stomach constantly and other weird symptoms that I don't really remember.  Gastro did tests and endoscopy and verified celiac disease. Re heart: I was born with Mitral Valve Prolapse (MVP) and an irregular heartbeat, yet heart was extremely strong.  It was difficult to pick up the irregular heartbeat on the EKG per cardiologist.  I had Covid at 77, recovered in 10 days and 2 weeks later developed long Covid. What the doctors and nurses called the "kickoff to long Covid, was A-fib.  I didn't know what was going on with my heart and had ignored early symptoms as some kind of passing aftereffect stemming from Covid.  I was right about where it came from, but wrong on it being "passing".  I have A-fib as my permanent reminder of Covid and take Flecainide every morning and night and will for the rest of my life to stabilize my heartbeat.   
    • larc
      Does anyone here also have Afib

      By larc · Posted

      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back.  My cardiologist offered me a collection of pharmaceuticals at the time.  But I passed on them. 
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure! Thank you kitty kitty   I am going to look this diet up right away.  And read the paleo diet and really see if I can make this a better situation then it currently is.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.