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

Bad Medical Advice Many Years Ago--Any Way To Get Tested For Celiac Now?
0

9 posts in this topic

My apologies if this is a repeat topic--seems like it would have been asked before but I'm not seeing it.

 

About 12 years ago I saw a doctor who didn't really understand Celiac disease.  She advised me to get a blood test for a wheat allergy and when it came back negative, she suggested an elimination diet.  When I noticed how awful I felt when I added gluten back into my diet, she said, "Great!  Now you know what's wrong--stop eating gluten."  So I did.

 

You all probably see the problem with this plan--when I later learned about Celiac disease and how important it is to be tested for it so you can monitor your progress, I discovered that I could not be tested because I haven't been eating gluten for so many years.  I'm told that if I want to be tested, I'll need to eat gluten for three months. !@#$ no!   No way will I purposefully invite that kind of misery into my life for the sake of a diagnosis. So I've been going along eating gluten-free, never knowing if I have Celiac or not.  But still, I would like to know for sure for various reasons.  My family wants to know as well.

 

So my question: does anyone know of a way around this situation so I could get a real diagnosis?  I fear there isn't, at least not with current medical technology.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Sorry, but the only way i can think of is by doing the gluten challenge. There is a genetic test, but it by itself is not a diagnosis tool (it can help, but cannot stand alone) because about 30% of the population has the genetics for it.

0

Share this post


Link to post
Share on other sites

That's what I figured.  I was just hoping for some miraculous new science I hadn't yet heard about.  Ah well.

Sorry, but the only way i can think of is by doing the gluten challenge. There is a genetic test, but it by itself is not a diagnosis tool (it can help, but cannot stand alone) because about 30% of the population has the genetics for it.

0

Share this post


Link to post
Share on other sites

I actually don't see a problem with that beyond other medical professionals perhaps not believing that you have a gluten problem. How you feel is a huge part of monitoring. If you feel bad, and you have celiac disease and you suspect that trace gluten is still affecting you, blood or intestinal tests could easily show up positive without changing your diet from what it currently is at all.

Besides which, you can have non-celiac gluten sensitivity and still have no positive tests. Both diseases run in families with celiac disease, so all first degree relatives should definitely still get celiac disease testing and consider that they might have gluten intolerance if they are in poor health. There should be no need to put a name to something that obviously makes you feel ill to make someone believe you or cater to you. That's their issue, not yours.

 

I honestly don't know what important monitoring you mean, maybe I'm just missing something.

0

Share this post


Link to post
Share on other sites

Hi kamarie,

 

I'm had a similar experience.
The doctor I had in 2010 told me to stay gluten free and didn't want me to get tested.

I didn't know much. Then in 2011 my health problems returned.

I've been doing the gluten challenge since november 2012 to do the tests.

 

..............................................................................................................................................................

Here is another test:

 

"Rectal biopsy is useful for people who did not get tested 

before starting a gluten free diet and then want to definitely

know if they really do have Celiac Disease."

source: http://glutenfreeworks.com/gluten-disorders/celiac-disease/diagnosis-and-testing/

 

also:  http://www.ncbi.nlm.nih.gov/pubmed/9260799

..................................................................................................................................................................

I didn't find a doctor in my city who knows how to do this test.

0

Share this post


Link to post
Share on other sites




Cavernio, this page explains why I'm thinking about diagnoses:  http://celiaccentral.wordpress.com/2012/10/03/going-gluten-free-before-the-diagnosis-do-or-dont/

 

AFAIK, if you have Celiac disease, doctors are more aggressive about checking for nutritional deficiencies and conditions related to having a severely damaged intestinal tract.  One person told me that they will also monitor your IgE (something like that, I don't know all the terms very well yet) to make sure you aren't eating gluten you don't know about.  But I haven't talked to an actual MD about this, so I could be wrong.

 

For me personally, it would help me determine how strict I need to be.  Although a gluten-free diet helps a lot, it hasn't made me 100% better.  Is it because I'm not really 100% gluten-free and I only think I am, and I'm still sick because of cross-contamination?  Or is something else causing my remaining health issues?  If a doctor could test me and say, "Well, there's no evidence you've consumed any gluten at all for the past 6 months," then I'd know there are other issues to investigate.

 

All of this could be done without a diagnosis of Celiac, and I am definitely trying my best to coordinate it all myself and do my own experimenting, but it would be a lot easier if I had a diagnosis and a cooperative, knowledgeable doctor (I'm resisting going into a tirade about my awful experiences with gastroenterologists, lol)

0

Share this post


Link to post
Share on other sites

Thanks for the links, Deanimated Marcus, that's the first I've heard of a rectal biopsy, which sounds really scary but I'm glad to have another option to research.

0

Share this post


Link to post
Share on other sites

I would just assume you have celiac, and when dealing with medical professionals with future health concerns, just tell them you have it and they will consider other avenues (autoimmune diseases) that they wouldn't otherwise.

 

I say, continue doing so well on the gluten-free diet and don't make yourself sick in order to determine if you are a celiac or have non-celiac gluten intolerance (NCGI). After so many years eating gluten free, there isn't any difference that I know of in the handling of the disease as long as you stay gluten-free.

 

Welcome to the board.  :)

0

Share this post


Link to post
Share on other sites

Hi kamarie,

I'm had a similar experience.

The doctor I had in 2010 told me to stay gluten free and didn't want me to get tested.

I didn't know much. Then in 2011 my health problems returned.

I've been doing the gluten challenge since november 2012 to do the tests.

..............................................................................................................................................................

Here is another test:

"Rectal biopsy is useful for people who did not get tested

before starting a gluten free diet and then want to definitely

know if they really do have Celiac Disease."

source: http://glutenfreeworks.com/gluten-disorders/celiac-disease/diagnosis-and-testing/

also: http://www.ncbi.nlm.nih.gov/pubmed/9260799

..................................................................................................................................................................

I didn't find a doctor in my city who knows how to do this test.

Not sure how a rectal biopsy would help with Celiac as it manifests in the small intestine. I have never seen a Celiac center recommend such a thing.
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
      104,354
    • Total Posts
      920,509
  • Topics

  • Posts

    • Yes it most certainly could be a false negative, and I would bet you a dozen donuts that it is (gluten free, of course.   )  At the very least you can be sure it is related to gluten.  These gluten rashes take forever to clear up.  I don't know about you, but whenever I start to doubt my gluten intolerance, I just look at my skin, and the old blood stains on my sheets, and I am reassured that it's not all in my head, and I need to avoid gluten as if it were a bucket of battery acid.
    • Hello, My fiance and I are going to Singapore for our honeymoon next year and I was wondering if anyone knew any cafes/restaurants etc that have gluten-free dishes? We previously went two years ago and enjoyed ourselves so much that we definitely wanted to go back our our honeymoon. Catch is I got diagnosed as being gluten intolerant a few months ago, negative for Coeliac though. If I eat gluten I have bad nausea, bloating, diarrhea etc. Not pretty for a honeymoon :-) I am more than happy to eat fruit at breakfast and make do with steamed rice at dinner etc but if anyone has any ideas on anywhere I can safely eat that would be much appreciated. I don't care how much it costs! Also is it possible for me to bring packaged gluten-free food into Singapore from Australia? I am not sure on the rules. Thank you!!
    • Went in and talked to the manager of our pm and asked about the gluten free pizza, and he told me he can't guarantee its 100% gluten free because of the flour in the air from the other crusts being made.  I value the honesty.   The other employee also mentioned changing gloves.   I was thinking wow great, until I walked out and got to thinking about cross contamination from everyone grabbing the toppings out of the same bins and spreading the sauce with the same utensils.    My son was just diagnosed this week so we are new to the whole lifestyle.   So any help or info is greatly appreciated.    Thanks  
    • Before i was diagnosed 2 years ago i had a severe chronic itchy scalp.  It would develop minor pimple like blisters then turn in to sores from the intense scratching.  At the time the dr i saw did a punch biopsy on the original sore, it came back with a florescent pattern and micro abcessing.  i saw a dermatologist who said it was a staph infection (wasn't checking for dh) sent me home with cream and a steroid lotion, didnt work. Shortly after i was diagnosed with celiac and went back to the dermatologist.  He did a punch biopsy BUT he took it from the top of my butt cheek saying that was the most common spot for dh to manifest.  My results were negative.   my question is...   Can this be a false negative due to the punch biopsy not being taken from skin adjacent to the lesions? since being gluten free the intensity has subsided but is still there.
    • Hi Morna.  I will have to add Tom and Chee's to my list.  I have found so many new restaurants on this forum.  My family's birthday season is coming up (I swear, everyone was born between September-December), so I am going to have to check out the bakery on Campbell Station.  Sneak in some gluten-free cake and goodies and see if anyone notices.  I miss cake.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,422
    • Most Online
      1,763

    Newest Member
    Celiacinthesea
    Joined