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

Getting Tested For Celiacs Without Eating Gluten Again?

poneelovesyou

Recommended Posts

poneelovesyou Newbie
poneelovesyou
Posted

Is there any way to get tested for celiacs without having to reintroduce gluten into the diet? I suspect that I have celiacs, and I also feel like a real diagnoses would make people take me a little more seriously. I just dont know if it's worth it to purposely expose my self to gluten. My reactions are so violent and uncomfortable for a matter of weeks. What do you all suggest? Is there another way to get the results?

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Not currently.

BlessedMommy Rising Star
BlessedMommy
Posted

No, unfortunately there isn't a way to test for celiac, without extensive gluten exposure.

 

If your reactions to gluten exposure are that violent, then you likely have your answer already.

 

I attempted to gluten challenge and to had to quit after 10 days, due to severe neurological symptoms that landed me in the E.R. I just made the decision that I was going to be gluten free for the rest of my life. For me, getting a diagnosis is unquestionably not worth it. 

 

Really, if you want a diagnosis so that other people will take you seriously, a diagnosis may or may not help you with that. There are many DX'ed celiacs who have to deal with people not taking them seriously.

 

My close friends and family know what I've been through and where I'm at. My inlaws even purchased  a separate grill for gluten free only items for me to use at their house. (I didn't ask or even imply that such a thing should be done, they just bought it out of the goodness of their hearts) Many people don't really know or care what my DX is, they just know that I can't and won't eat gluten, period, end of statement. Overtime, if you display consistent behavior and never willfully cheat on the diet, most people will understand that it's serious and that you're not a fad dieter.

 

If you decide to stay with a gluten free diet without a diagnosis, being up front with your family and friends helps. Let them know that you may have celiac but are unable to safely nail down a diagnosis, so for your own safety, you have to follow a strict gluten free diet. Let them know what that entails and also let them know that you don't expect them to go out of their way for you and that you will plan to provide your own safe food items for any event.

 

I've often seen hospitalization cited as a reason to get a diagnosis (i.e. getting safe food if you had to be in the hospital) but I don't think that's a huge issue. When I was with my son in the hospital for a broken leg, they cheerfully allowed us to order off of the gluten free menu, no proof of diagnosis necessary. And if you're in a hospital without a reliable gluten free menu, you can pretty much plan on eating whole fresh fruit until your spouse/friend/parent/child brings you food from home.

 

Good luck!

nvsmom Community Regular
nvsmom
Posted

If you have been gluten-free for, let's say, less than a year it is possible to still have a positive celiac disease test, but unlikely. I was still testing positive in the tTG IgA test at around a year gluten-free, although I doubt that is the norm.

 

The endoscopic biopsy only requires a 2-4 week gluten challenge. Could you last two weeks or so?

 

You may just have to stay gluten-free without testing if it is too much for you. There are many people around here in the same boat. :)

 

Just an aside on terminology: it is celiac or celiac disease. Celiacs are people who have celiac disease.

Archived

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

Go to topic listing
  • 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
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      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
      Waiting Gastroenterology review

      By RMJ · Posted

      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
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      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
      Food Allergies

      By Ginger38 · Posted

      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
      7yo struggling!

      By JForman · Posted

      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...