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

Could I Have Been A Celiac Previously?


Dandelion

Recommended Posts

Dandelion Contributor

My bloodtest came back negative, but my doctor felt that because of my symptoms and relief from not eating gluten that we should go ahead with the endoscopy and biopsy. To give you a little background, I was diagnosed with IBS two years ago, but never got any better no matter what I tried for it. This January I decided to try a gluten free diet to see if that would help and it worked wonders. Anyway, the biopsy results also came back negative. (Maybe because I was gluten free for over 3 months when I had it done?) The doctor diagnosed me as gluten intolerant due to dietary results. So my question is - even though my tests came back negative, could I have had celiacs before and just no longer had any damage or antibodies when the testing was done? Or is that not possible and the test would have shown that I had it? Can your villi heal that quickly? All I know is that gluten and I are not friends.

Sorry if this is stupid or has been answered before.


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



Celiac.com Sponsor (A8-M):



pedro Explorer

Hi

This is exactly what happen to me. This pass March I was so tired of all of the digestive problems. I made the decision to find out. That's when I came across this site, and find out about EnteroLabs. Finally I know now what is wrong with me. I have to go to the GI doc next week, I wonder what his going say when he sees the results.

You could have Celiac even if the blood test were negative. Have you had any genetic testing done??

I don't have the Celiac genes, but I have antibodies, damage and symptoms that Celiac's have.

Everyone that I have spoken told me that for an adults it takes several months to a year in order for the intestine to recover. I believe is all dependent on the amount of damage you have. Some people recover faster than others.

I like what you said about "All I know is that gluten and I are not friends".

Feel free to ask any questions we are here to help and to learn.

Many thanks and best regards to you.

Pedro

ENF Enthusiast
Hi

Everyone that I have spoken told me that for an adults it takes several months to a year in order for the intestine to recover. I believe is all dependent on the amount of damage you have. Some people recover faster than others.

It takes several months to a year for children's intestines to recover. The older you are, the longer it takes. I'm middlle-aged, and the Celiac Disease Center told me not to come back for another endoscopy and biopsy for two years, which is the minimum time it usually takes for an adult to show improvements using this test.

Guest j_mommy

If you were on a gluten-free diet for three months prior to the biopsy it is possible that your villi healed or they didn't take enough samples! It can effect one area and not the next!!!! For what i've been told you should be eating Gluten for atleast 1 month prior to getting teh biopsy.

all of this depends on when celiac presented itself. I've had these symptoms for 24 years, but they believe that my "triggering" event for Celiac was pregnancy two years ago. once you go gluten-free, your body starts to heal itself. It is possible that you villi grew back and healed before you biopsy...they may not have been what a normal/nonceliac would have been but they wouldn't have looked like a celiacs that's been eating gluten! I hope this isn't too confusing!

Ursa Major Collaborator

Actually, it takes at least three to six months of eating gluten to even have a remote chance of getting a positive biopsy after you've been gluten-free for a while. One month is never enough.

Good for your doctor to diagnose you as gluten intolerant based on the good results you have on the diet. Who cares if it is celiac disease or gluten intolerance anyway, the treatment is the same, which is a gluten-free diet.

VydorScope Proficient

Okay, first off... the biopsy is NEVER EVER negative. It can NEVER EVER rule out celiac disease. That is just the nature of the test. The blood tests could easily show negative after 3 months gluten-free, and as Ursla said it take as while to build up the damage to a level that biopsy or blood test would detect. IN short, the method you used for your testing is not the most accurate. HOW EVER there is the simple diet test, which you did, and it is VERY accurate, and considered diagnostic.

The only dif between celiac disease and Gluten Intolerance is the biopsy results. Meaning IF you have done enough damage to your body AND the doctor was lucky enough to sample said damage, THEN you have celiac disease, else you "only" have gluten intolerance.

So yes, IMO, you DID have celiac disease, and still do. Treat it as such and you will have a much healthier brighter future.

Dandelion Contributor

Thank you all so much for your advice. It's comforting to know that you are out there. I will definitely stay gluten free since gluten and I can't seem to play nicely with each other. :)


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



Celiac.com Sponsor (A8-M):



chrissy Collaborator

you are fortunate to have a doctor that recongnized gluten intolerance even with negative blood work and negative biopsies. i think it is possible that you could actually have celiac disease, but there is probably no way you will ever know for sure since you are gluten free. oh well, the treatment is the same, either way.

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...