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. wellthatsfun
      - wellthatsfun posted a topic in Gluten-Free Recipes & Cooking Tips
      0

      heaps of hope!

      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free...
    2. knitty kitty
      - knitty kitty replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      6

      Help understand results

      That test is saying that your daughter is not making normal amounts of any IGA antibodies. She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses. She is deficient in total IGA, so the test for antigliadin antibodies is not valid. The test was a failure. The test only works if all different kinds of antibodies...
    3. knitty kitty
      0

      Vitamins I Take

    4. knitty kitty
      - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Insomnia help

      @hjayne19, So glad you found the information helpful. I know how difficult my struggle with anxiety has been. I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex. It contains the easily activated forms of B vitamins needed by people with the MTHFR...
    5. trents
      - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

      Welcome to the celiac.com community @pothosqueen! Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,994
    • Most Online (within 30 mins)
      7,748
    KimberlyS
    Newest Member
    KimberlyS
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • wellthatsfun
      heaps of hope!

      By wellthatsfun · Posted

      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free pasta (san remo brand if you're in australia/if you can get your hands on it wherever you are).  those meals are notably gluten free, but mainly he's been making me easy gluten free meals - chili mince with white rice and sour cream, chicken soup with homemade stock from the chicken remains, and roast chickens with rice flour gravy and roast veggies. i'm a bit too thankful and grateful lol. how lucky could i possibly be? and, of course, for those who don't have someone to cook for them, it's quite easy to learn to cook for yourself. i've been making a lot of meals for us too. honestly, cooking is pretty darn fun! knowing basic knife skills and sanitary practices are all you really need. experimenting with spices will help you get on track to creating some really flavourful and yummy dishes. coeliac is a pain, but you can use it to your advantage. healthier eating and having fun in the kitchen are major upsides. much luck to all of you! let's be healthy!
    • knitty kitty
      Help understand results

      By knitty kitty · Posted

      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
    • trents
      Positive biopsy

      By trents · Posted

      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
×
×
  • 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.