Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Feedback, I Am Confused With Doctors Diagnosis
0

4 posts in this topic

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...

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,608
    • Total Posts
      918,334
  • Topics

  • Posts

    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
    • Recovery diet, nutrition, leaky gut?
      I am having my endoscopy on Tuesday. I want to begin to heal my gut asap. I spent this morning in the ER with stabbing pain in my right shoulder blade, pain to the left of my belly button and vomiting. It's referred pain from my small intestine. I couldn't move or breathe hardly it hurt so bad. I NEED to get everything together to heal my gut asap. I don't want to ever go through this again. What are your recommendations? I've been reading a bit on leaky gut - anyone have good experience/links Or would the autoimmune diet be better? Are they one in the same? I know I am also reacting to casein and possibly potatoes. 
    • Celiac.com: Celiac Patients Could Get Gluten-free Stipend
      Celiac disease is a sensitivity to the gluten found in wheat, barley, rye, spelt and oats that causes an autoimmune response in which the body attacks ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,707
    • Most Online
      1,763

    Newest Member
    Ree8080
    Joined