Celiac's test/diagnosis

iRun4wine
iRun4wine Posts: 5,126
edited September 20 in Food and Nutrition
Anyone here ever had the intestinal biopsy to test for Celiac's? If so, how was it? I'm terrified of even the idea of the test:sad: . I've heard that they knock you out for it, which I'm also terrified of (have gotten knocked out several times for various things and absolutely HATE it:cry: ). But, I've also heard that they don't know you out:noway: , which also scares the pants of me. Not sure if they do, or if they don't.

Just looking for some general information/feedback. I'm sure it wasn't fun or enjoyable, but how bad was it? Any advice, words of wisdom, or support for me?

Replies

  • Magenta15
    Magenta15 Posts: 850 Member
    I am not sure what the test is like for that...
    but I can tell you that I had a colonoscopy (in which they removed a polyp to test during it] and came out diagnosed with colitis.

    they gave me something intravenously to knock me out so muscles and all that jazz would be relaxed and I wouldn't feel uch, but i wasn't knocked out... truth be told i've never had an IV so that was the part i was most terrified for the whole thing :laugh:

    it was fairly quick, and easy, and not painful at all, and i had no lingering effects or pain afterwards either.

    I hope this helps ease your mind a bit :flowerforyou:
  • ranibauer
    ranibauer Posts: 73
    I was tested. I had an endoscopy. It was super painless and easy. I went in to the hospital, they give you the sedative ( I only got to 9 when they told me to count back from 10) and the next thing I remember is being transferred into my recovery bed. Two hours later my high was over I went home and would never have even known anything happened. My body didn't feel different either. Don't worry, you really wont remember or feel a thing! Also, I don't think you are technically knocked out, I think they put you in a "twilight" state (i think thats what its called).
  • jazzyjules2004
    jazzyjules2004 Posts: 34 Member
    Wow, I didn't know you had to have a biopsy to diagnose Celiac and IBD. Have they done the lab workup on you as well? I guess a colonoscopy/endoscopy doesn't hurt, but make sure they cover all their bases first. And as with the previous blogger, make sure you get ALL your drugs if you get scoped. You won't feel a thing!

    Good luck!
    :flowerforyou: :flowerforyou: :flowerforyou:
  • iRun4wine
    iRun4wine Posts: 5,126
    Call me crazy, but my heart is racing just reading this! :noway: I know the actual process of being knocked out isn't so bad, but boy do I have serious anxiety about it before hand. The test isn't even scheduled yet and I'm all worked up about it :ohwell:

    Thank you for your replies. Hopefully even MORE people will write back and say it's nothing to sweat... :laugh:

    Ranibaur, just out of curiosity, did it turn out you have Celiac's? My other biggest fear is that I go through all of this and it turns out that I don't. Now, I've caused myself all of this anxiety and still don't have an answer as to what is causing all of my stomach problems!
  • mcanix
    mcanix Posts: 8 Member
    Did your bloodwork for Celiac come back positive? There is a specific panel for Celiac. I hope your doctors started there. I had bloodwork done and had the endoscopy as well. The endoscopy is truly no big deal. I was in a "twilight" state. You have to swallow at a certain time. That is the last that you will remember. The only after effect that I had was a slight sore throat. Don't worry about it. I promise it isn't bad at all. A colonoscopy on the other hand...well, I didn't do too well with that. I wish you well. You will do fine. :flowerforyou:
  • Magenta15
    Magenta15 Posts: 850 Member
    Wow, I didn't know you had to have a biopsy to diagnose Celiac and IBD. Have they done the lab workup on you as well? I guess a colonoscopy/endoscopy doesn't hurt, but make sure they cover all their bases first. And as with the previous blogger, make sure you get ALL your drugs if you get scoped. You won't feel a thing!

    Good luck!
    :flowerforyou: :flowerforyou: :flowerforyou:

    for me the symptoms i was having and ummm.... "seeing" was worrisome enough for them to suspect and give me the colonoscopy... i believe all my blood work was had shown (that they told me) was that i had a low blood count...which directly related to my previously mentioned symptom lol (for colitis that is not celiac)
  • iRun4wine
    iRun4wine Posts: 5,126
    Did your bloodwork for Celiac come back positive? There is a specific panel for Celiac. I hope your doctors started there. I had bloodwork done and had the endoscopy as well. The endoscopy is truly no big deal. I was in a "twilight" state. You have to swallow at a certain time. That is the last that you will remember. The only after effect that I had was a slight sore throat. Don't worry about it. I promise it isn't bad at all. A colonoscopy on the other hand...well, I didn't do too well with that. I wish you well. You will do fine. :flowerforyou:

    Well, it's a long complicated story. I went to the doctor for hypoglycemia symptoms as well as some stomach issues. He did blood work to check for the hypoglycemia (the glucose tolerance test) and just to see what how my bloodwork came back in general to see what could be causing my symptoms. It came back normal in reference to the glucose tolerance test, and my thyroid levels came back "abnormal"- I should learn more at my appointment on Tuesday.

    I mentioned at my last appointment that it seems as though my stomach issues (including the two days I was TERRIBLY sick) are due to bread. I didn't discover that, though, until more recently. It was more of a casual mention at my last appointment and he ordered my to have some other tests done (echo-cardiogram tomorrow), and to meet with a dietitian (who said my diet looks good), and said that the test for Celiac's is "gastrointestinal" (I think that's what he said).

    So, on Tuesday I'm basically going to ask for the Celiac's test just because I need to know if that's what's going on or not. I haven't eaten bread or pasta and have avoided almost all gluten for 2 weeks now and have had no stomach issues. So, at this point I just need to know whether it's 'problem solved' or 'cross Celiac's off the list of possibilities'.

    Sorry this got so long... it's been a hectic few weeks for me- that's for sure.

    *Edit: Should have added, I've read that you have to eat gluten before the test, or it won't be accurate. I'm nervous about that- haven't eaten it in days, and I'm afraid that if I do, I'll be sick again with my terrible stomach issues. So, I guess I'd have to start eating it again before the test?
  • ranibauer
    ranibauer Posts: 73
    Ranibaur, just out of curiosity, did it turn out you have Celiac's? My other biggest fear is that I go through all of this and it turns out that I don't. Now, I've caused myself all of this anxiety and still don't have an answer as to what is causing all of my stomach problems!

    I do not have Celiacs. They did a blood test before that said negative but the best way to tell ifi you have it by a biopsy. I was having severe stomach pain issues though so I wanted to get to the bottom of what it was, not to mention that if you have Celiacs and dont know it you can get cancer. It is best to get tested if there might be a chance.
  • equinegirl200
    equinegirl200 Posts: 35 Member
    It was easy as pie! I was 16 at the time and was in and out of the hospital quickly and painlessly. Don't worry too much, it'll be over before you know it. BTW, I was diagnosed with Celiac Disease, and I felt so much better after that it was totally worth it!
  • mcanix
    mcanix Posts: 8 Member
    You (unfortunately) do have to be consuming gluten when the celiac panel is done. It checks for specific antibodies in the blood. Good luck. If you do end up having to have the endoscopy, don't worry yourself. It is truly no big deal.
  • iRun4wine
    iRun4wine Posts: 5,126
    How much gluten? Like, do I have to stock up and go bread crazy? Or just eat it for a normal person? And for how long-days/weeks? I just can't get over the idea of eating a food that I know is going to make me sick! :noway:
  • cindysho
    cindysho Posts: 23 Member
    I am a GI nurse and can tell you, don't worry. There is nothing at all to fear. Yes, you need to be consuming gluten prior to the test. It is very important that you do. The blood test shows an antibody "marker". This level goes up when inflammation is present. However, this is only the first step. You need to have the EGD to get the tissue sample for definitive proof of celiac. This is painless to you, they are the size of a breadcrumb. They can tell from the tissue if you have it, not just the bloodtest alone. So, start eating gluten!! Hope this helps. The actual EGD takes about 10 minutes once you get started, and you shouldn't remember a thing. I've had 2 already.
  • iRun4wine
    iRun4wine Posts: 5,126
    Just back from my appointment... they took blood to test for the antibodies and said that depending on the results, he may send me to GI as the next step. Thank you all for your advice/comments. I appreciate it! :flowerforyou:
  • iRun4wine
    iRun4wine Posts: 5,126
    I have a Celiac's question... hoping one of you has the answer! I should have asked my doctor, but I didn't :ohwell: . Assuming I have Celiac's (which is a pretty safe assumption at this point), is it ok to eat foods that contain a very small amount of gluten if the foods don't bother my stomach, or just bother it a little bit, but I can tolerate it easily? For example, the other day I almost had a frozen meal that had no source of gluten that I could identify by using common sense, but the ingredients said "contains wheat ingredients" so I didn't eat it. When I first started thinking bread was causing me to feel so terrible I cut out bread and pasta and the big, obvious sources of gluten and felt a lot better. In the last few days I've cut out every single source of gluten... right down to the stuff that makes you say "there's gluten in this!?!?!" :laugh:

    I'm wondering if it's the old: If it doesn't bother you, eat it. Or, if it can still effect my intestines/do some damage even in small amounts over time?

    Anyone every get clarification on this from a doctor?
  • Keegiejae
    Keegiejae Posts: 17 Member
    If you have the official diagnosis of celiac, then you cannot eat any gluten containing foods, unless yu want to continue damaging the intestinal villi. If you have an intolerance, where antibodies are not made, but you are unable to digest gluten, then you can eat some. The main difference beteen the two is that Celiac disease produces antibodies that damage other tissues in the body. Intolerance just means difficulty digesting. Celiac also has long term possible complications like a higher risk of developing lymphoma.
    I had my testingdone and it all came back negative. However, I have had a positive dietary response, which was reconfirmed with a recent "gluten challenge". I don't know if perhaps I was one of the false negatives or if I have intolerance, but I do know that eating it causes major GI issues. I lack other symptoms, so I hope that it is just intolerance. Regardless, I avoid eating it (very hard sometimes with free food constantly available during my current med school rotation). Please feel free to message with more questions.
  • iRun4wine
    iRun4wine Posts: 5,126
    The doctor said I had a "very impressive antibody count" in my thyroid that could be caused by Celiac's if it turns out I have it. I certainly don't want to do any damage at all to my body, so until I see my doctor again I will remain with 100% gluten free. I'm not sure exactly what the results of the blood work will be.
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