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

Diagnosis: Eating gluten-free before biopsy?


Caine

Recommended Posts

Caine Newbie

Hello,

I recently tested positive for Celiacs disease via the blood test  and currently have a biopsy scheduled in January. I have been having progressive stomach issues for the past year and I am currently at the point where eating anything hurts and cause massive stomach pain and other digestion issues. 

I already eat mostly Gluten Free because my wife has Celiacs, so when my blood test came back it was just above the normal high range (few points into the positive). Since I don't eat gluten that much at all already I can see how having a slightly above average result would still be accurate for a positive confirmation in a blood test (Since normally you would have way higher results when eating gluten all the time). 

Since my initial diagnosis I have stopped eating Gluten entirely and still have having stomach pain. While I believe the biopsy will still reveal useful information I am conflicted with the pre-eating instructions. 

My current issue is I have 3 doctors that all have told me different things about how to prepare for my biopsy.
1 - Has no idea about celiacs diagnoses and one day tells me to eat it and the next tells me to not. 
2 - Says I don't have to eat Gluten and my biopsy result will still be accurate. 
3 - Tells me that I need to eat lots of gluten for my biopsy to be accurate. 

What should I do so that I have an accurate test result but also not cause any more potential damage if I do infact have advanced Celiacs disease/stomach damage? Has anyone else been told conflicting information about eating gluten products before biopsy? 

 

Thanks in advance!


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

People are constantly being told conflicting information about preparing for a biopsy and also constantly being told incorrect information about preparing for a biopsy.

Here is a link to the U of C Celiac Disease Center -- one of the top celiac research centers in the world.

Open Original Shared Link

You really need 6 biopsies because damage can easily be missed. The small intestine is the size of a tennis court when laid out flat so you can see how damage could be missed if not enough samples are taken.

As to you still having stomach pain -- it takes time to heal. It's not like flipping a light switch off & on. When you quit eating gluten. that's just the start of the healing process but don't expect it to happen overnight. 

Caine Newbie
13 hours ago, squirmingitch said:

People are constantly being told conflicting information about preparing for a biopsy and also constantly being told incorrect information about preparing for a biopsy.

Here is a link to the U of C Celiac Disease Center -- one of the top celiac research centers in the world.

Open Original Shared Link

You really need 6 biopsies because damage can easily be missed. The small intestine is the size of a tennis court when laid out flat so you can see how damage could be missed if not enough samples are taken.

As to you still having stomach pain -- it takes time to heal. It's not like flipping a light switch off & on. When you quit eating gluten. that's just the start of the healing process but don't expect it to happen overnight. 

Thank you very much for the information and link. I will continue researching more and learning. 

squirmingitch Veteran

You're welcome!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748

    Jamie0230
    Newest Member
    Jamie0230
    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

    • 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…
    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...