Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Preparing for EGD and Celiac biopsy.


AhhhNold

Recommended Posts

AhhhNold Rookie

I'm 3 weeks away from my EGD and Celiac biopsy. I wish it was tomorrow. I started having stomach pain a few months back, had ultrasound, Bloodwork, H-Pylori test. Ultrasound normal, blood work normal, H-Pylori test negative, diagnosed with gastritis and given Nexium. It went away completely for about 3 weeks then came back with this constant belching, when I say constant I mean like sleeping 2 maybe 3 hours at night, the stomach pain would kinda come and go but the belching was non stop. Finally got referred to a GI specialist. While waiting on my appointment I decided to see if it could be an intolerance. First went dairy, no help. Then finally gluten. Within a week I was much better. Finally relief. I saw my doctor told him the diet was helping, he ordered an EGD and Celiac biopsy. But since I saw him a week ago I feel like I'm getting worse again. So yesterday I ate gluten free waffles and had a horrible day, so much gas and belching all day. I couldn't understand, so I looked at the box and found it's got soy. I read that people who have Celiac have trouble with soy as well. So today I've been, gluten, dairy, and soy free which mean I can't eat crap. But I've felt much better today than yesterday. In the mean time I'm curious, when they go in with the scope and do the intestinal scrape for the biopsy, how long do you have to wait for results? I'm so ready to do these tests and get some answers.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GalaxyDuster Apprentice

Hi Ahhhnold (is that like Shwartzenegger?! :D ), I am also waiting for my endoscopy. In the meantime, the people on this message board suggested that I request the celiac antibody panel to be drawn. Do you know if that was included in your blood work? If not, you can ask your primary care doctor to order it while you wait. That might shed light on just what's going on in your body. I had mine drawn yesterday and am waiting for the results, but they typically can be back within a few days. Why not give it a try?

tessa25 Rising Star
56 minutes ago, AhhhNold said:

So today I've been, gluten, dairy, and soy free which mean I can't eat crap. But I've felt much better today than yesterday. In the mean time I'm curious, when they go in with the scope and do the intestinal scrape for the biopsy, how long do you have to wait for results? I'm so ready to do these tests and get some answers.

Unfortunately you need to keep eating gluten until all celiac testing is complete.

 

AhhhNold Rookie

If I was the big guy, there's no way I would have to wait 3 and a half weeks for a test lol. My GI doc never recommended the antibody test. He said doing it with the scope was the only sure way to know. Does anybody know if I should eat a little gluten the day before my test to see if I will get an accurate enough test? Or will it not matter, once the damage is done it's done?

tessa25 Rising Star

You have eat gluten every single day until after testing. And the celiac blood test is supposed to be done as well.

 

cyclinglady Grand Master

Learn more about testing for celiac disease here:

Open Original Shared Link

You do have to be on a gluten diet for ANY of the celiac tests (blood and biopsy) to work.  While the endoscopy (with biopsies) can reveal villi damage, many other things besides celiac disease can cause villi damage too:

Open Original Shared Link

So, both the blood test and endoscopy are usually ordered.  There are some exceptions, but those are not common.  

AhhhNold Rookie

I'm still really new to all this but is it common to have trouble with sleep? I swear since my symptoms got really bad a few months ago I can't get 1 good nights sleep, like a 5 hour stretch is doing real good. Wake up at 3am wide awake almost every night. Told my doctor and they've recommended melatonin, that doesn't work. Tried chamomile and lavender tea, no help. Tried zzquil, that will knock me out but maybe for like an extra hour then I'm really drowsy the next morning from it. I don't know what to do.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
10 hours ago, AhhhNold said:

If I was the big guy, there's no way I would have to wait 3 and a half weeks for a test lol. My GI doc never recommended the antibody test. He said doing it with the scope was the only sure way to know. Does anybody know if I should eat a little gluten the day before my test to see if I will get an accurate enough test? Or will it not matter, once the damage is done it's done?

Celiac disease is an autoimmune disease that happens to have a known trigger -- gluten.  Flare-ups develop  (antibodies) causing damage. Not just in the small intestine, but systemically.  One gluten exposure can cause antibodies to increase for days or months!   Antibodies are being measured during the celiac blood tests.   If there is no gluten exposure, there will be no antibodies.  These antibodies can come down in some people in as little as two weeks.  Recommendations require gluten 2 to 4 weeks daily for the biopsies taken via endoscopy in order to be sure to catch damage, but 8 to 12 weeks for the blood tests.  

The endoscopy is considered the "gold standard" in helping to diagnose celiac disease, but there are other things that can damage the small intestine.  So, the blood test helps solidify the diagnosis.  

So, if you want a good result on your endoscopy, you need to be eating gluten daily for two week prior at a minimum.  I know it is tough and you are feeling sick.  Wish there was a better way to catch active celiac disease.  

 

AhhhNold Rookie

Called my GI doctor today to make sure he is going to look at my small intestine and do biopsy for Celiac for my EGD and he is. Thanks for the tip everyone about have to start eating gluten again. The office told me to break my gluten free diet and start eating gluten everyday until my EGD. Here's to being miserable again for a few weeks ???

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,199
    • Most Online (within 30 mins)
      7,748

    Stacy M
    Newest Member
    Stacy M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Redanafs
      Hi everyone. Back in 2022 I had blood work drawn for iga ext gliadin. Since then I’ve developed worse stomach issues and all other health issues. My doctor just said cut out gluten. He did no further testing. Please see my test results attached. I just need some direction cause I feel so ill and the stomach pain is becoming worse. Can this test show indications for other gastrointestinal diseases?
    • Fayeb23
      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
×
×
  • Create New...