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. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      47

      My journey is it gluten or fiber?

      Try adding some Thiamine Hydrochloride (thiamine HCl) and see if there's any difference. Thiamine HCl uses special thiamine transporters to get inside cells. I take it myself. Tryptophan will help heal the intestines. Tryptophan is that amino acid in turkey that makes you sleepy after Thanksgiving dinner. I take mine with magnesium before bedtime...
    2. Known1
      - Known1 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      12

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I live in the upper mid-west and was just diagnosed with marsh 3c celiac less than a month ago. As a 51 year old male, I now take a couple of different gluten free vitamins. I have not noticed any reaction to either of these items. Both were purchased from Amazon. 1. Nature Made Multivitamin For Him with No Iron 2. Gade Nutrition Organic Quercetin...
    3. SilkieFairy
      - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      results from 13 day gluten challenge - does this mean I can't have celiac?

      I am doing a gluten challenge right now and I bought vital wheat gluten so I can know exactly how much gluten I am getting. One tablespoon is 7g so 1½ tablespoons of Vital Wheat Gluten per day will get you to 10g You could add it to bean burgers as a binder or add to hot chocolate or apple sauce and stir.
    4. Scott Adams
      0

      Celiac Disease Beyond the Western World: Hidden Populations, Changing Diets, and Growing Awareness

    5. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,361
    • Most Online (within 30 mins)
      7,748
    Xpedit73
    Newest Member
    Xpedit73
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      Try adding some Thiamine Hydrochloride (thiamine HCl) and see if there's any difference.  Thiamine HCl uses special thiamine transporters to get inside cells.  I take it myself.   Tryptophan will help heal the intestines.  Tryptophan is that amino acid in turkey that makes you sleepy after Thanksgiving dinner.  I take mine with magnesium before bedtime.
    • Known1
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Known1 · Posted

      I live in the upper mid-west and was just diagnosed with marsh 3c celiac less than a month ago.  As a 51 year old male, I now take a couple of different gluten free vitamins.  I have not noticed any reaction to either of these items.  Both were purchased from Amazon. 1.  Nature Made Multivitamin For Him with No Iron 2.  Gade Nutrition Organic Quercetin with Bromelain Vitamin C and Zinc Between those two, I am ingesting 2000 IU of vitamin D per day. Best of luck, Known1
    • SilkieFairy
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By SilkieFairy · Posted

      I am doing a gluten challenge right now and I bought vital wheat gluten so I can know exactly how much gluten I am getting. One tablespoon is 7g so 1½ tablespoons of Vital Wheat Gluten per day will get you to 10g You could add it to bean burgers as a binder or add to hot chocolate or apple sauce and stir. 
    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
×
×
  • 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.