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

Feedback, I Am Confused With Doctors Diagnosis

CoreySmith1200

Recommended Posts

CoreySmith1200 Newbie
CoreySmith1200
Posted

ok so I was diagnosed with celiacs a little bit before Christmas. I tested positive for two things in a blood test. the doctor orderd me a biopsy to check that I had celiacs. I had the biopsy done mid febuary and tested negative. heres the thing, I was never told to eat gluten before the biopsy to make sure the celiacs could be seen, which is why the doctor thinks I may have celiacs regardless. but since being diagnosed I have had many incedences where I have mistakenly ate gluten. I had been eating rice crispies since the diagnosis and didn't realize they weren't gluten free untill during the super bowl on febuary 3rd. then I stopped eating them. I also had ate some cookies that I thought were gluten free that my mom made but they were in fact just regular cookies. also my cafeteria had served my the wrong food sometimes, for example I have a special breaded chicken that is gluten free, once they mixed up my breaded chicken and gave me real "breaded chicken" gluten and all and I took a bite and chewed and spit it out after I saw the chicken in the sandwitch. and tonight I just realized for the last month I have been eating wild harvest organic cookies that my mother thought were gluten free ( they were on the shelf labed organic next to the gluten free shelf and costed less than the glutino brand...) so I stopped eating those tonight. I just turned 18 years old.

 

My question is, with all the mistakenly eaton gluten and with the negative biopsy for celiacs, when in fact I believe I had been eating gluten, is it possible that I don't have celiacs? I mean in 4 months can a small intestine heal so good that you test negative for celiacs in a biopsy even when u have been eating gluten? I am also about to have a test for chrones disease done to...

 

ps. sorry for the spelling and stuff, I had to rewrite this whole thing because the page froze...

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

Celiac.com Sponsor (A8-M):


txgal748 Apprentice
txgal748
Posted

Corey,

 

It is my understanding that if the biopsy is not from the right location it will show up as negative.  Ask your Mom to ask the Dr. to do a DNA test for celiac, this is much more accurate.

nvsmom Community Regular
nvsmom
Posted

I've heard many stories about negative biopsies after positive test results. It seems to be fairly well accepted that in those circumstances what has probably happened is that the doctors missed patchy intestinal damage. There is a LOT of surface area in the intestines and I'm surprised they don't miss the damage areas more often.

 

Good luck with your Crohn's testing. I hope you are okay.

mushroom Proficient
mushroom
Posted

Sometimes the biopsy results depend upon luck in selecting the right spot(s).  Damage is not visible to the naked eye unless it is far advanced.  Also, the GI needs to take a sufficient number of samples - 6 is usually recommended - to give a greater chance of hitting the right spot.  Which of your blood tests were positive?    Some are more specific for celiac than others.

 

Regardless, if gluten is a problem for you, you should eat gluten free anyway.  Non-celiac gluten sensitivity is finally being recognized by the medical community as a disese in its own right.  So don't let the negative biopsy sway you away from eating gluten free.  Some of us just have to do it regardless.  Research has only just really got under way to explore the ramifications of non-celiac gluten sensitivity and to attempt to develop a test for it.

 

To address your specific question, could you still be celiac with positive blood work and a negative biopsy while you were still unknowingly ingesting some gluten?  When we first start the diet, we are never perfect.  There are always things we discover to have gluten that we were unaware of, for some of us more than for others.  While it is true that you must be 100% gluten free if you expect to heal from celiac damage, some healing can nevertheless take place with random gluten exposure.  But I think the chances are that it was missed or not enough samples taken.  If you were positive on only one blood test, maybe questionable... positive on two (depending on which ones) not likely.

 

Let us know how your testing for Crohn's goes. :)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,339
    • Most Online (within 30 mins)
      7,748
    Skydawg
    Newest Member
    Skydawg
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Gluten exposure when trying to conceive

      By trents · Posted

      My reaction to a gluten bolus exposure is similar to yours, with 2-3 hours of severe abdominal cramps and intractable emesis followed by several hours of diarrhea. I don't necessarily equate that one large exposure to gluten with significant intestinal lining damage, however. I think it's just a violent reaction to a what the body perceives to be a somewhat toxic substance that I am no longer tolerant of because I have quit exposing myself to it regularly. It's just the body purging itself of it rather than an expression of significant damage. Before diagnosis, when I was consuming gluten daily, I had little to no GI distress. I was, for the most part, a "silent celiac". The damage to my small bowel lining didn't happen all at once but was slow and insidious, accumulating over a period of years. The last time I got a big shot of gluten was about three years ago when I got my wife's wheat biscuits mixed up with my gluten-free ones. There was this acute reaction after about two hours of ingestion as I described above. I felt washed out for a few days and fully recovered within a week or so.  Now, I'm a 74-year-old male. So, I'm not worried about being pregnant. And I don't want to contradict your physicians advice. But I just don't think you have done significant damage to your small bowel lining by one episode of significant gluten ingestion. I just don't think it works that way.
    • Skydawg
      Gluten exposure when trying to conceive

      By Skydawg · Posted

      Wondering about some thoughts on how long to wait to try to get pregnant after a gluten exposure?  I have been diagnosed for 10 years and have followed the diet strictly. I have been cross contaminated before, but have never had a full on gluten exposure. I went to a restaurant recently, and the waiter messed up and gave me regular bread and told me it was gluten free. 2 hours later I was throwing up for the whole evening. I have never had that kind of reaction before as I have never had such a big exposure. My husband and I were planning to start trying to get pregnant this month. My dr did blood work to check for electrolytes and white blood cells, but did not do a full nutritional panel. Most of my GI symptoms have resolved in the past 2 weeks, but I am definitely still dealing with brain fog, fatigue and headaches. My dr has recommended I wait 3 months before I start to try to get pregnant.   I have read else where about how long it can take for the intestine to fully heal, and the impacts gluten exposure can have on pregnancy. I guess I am really wondering if anyone has had a similar experience? How long does it take to heal after 1 exposure like that, after following the diet so well for 10 years? Is 3 months an okay amount of time to wait? Is there anything I can do in the meantime to reduce my symptoms? 
    • ShadowLoom
      Gluten Free Cannabis Edibles

      By ShadowLoom · Posted

      I’ve used tinctures and made my own edibles with gluten-free ingredients to stay safe. Dispensary staff don’t always know about gluten, so I double-check labels or just make my own.
    • Scott Adams
      Damage after 13 years gluten free

      By Scott Adams · Posted

      It's great to hear that there are some good doctors out there, and this is an example of why having a formal diagnosis can definitely be helpful.
    • RMJ
      Damage after 13 years gluten free

      By RMJ · Posted

      Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before.  I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!
×
×
  • Create New...