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

kamarie

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kamarie Newbie
kamarie
Posted

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.

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shadowicewolf Proficient
shadowicewolf
Posted

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.

kamarie Newbie
kamarie
Posted
  • Author

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.

cavernio Enthusiast
cavernio
Posted

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.

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

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: Open Original Shared Link

 

also:  Open Original Shared Link

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

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

kamarie Newbie
kamarie
Posted
  • Author

Cavernio, this page explains why I'm thinking about diagnoses:  Open Original Shared Link

 

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)

kamarie Newbie
kamarie
Posted
  • Author

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.

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nvsmom Community Regular
nvsmom
Posted

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.  :)

kareng Grand Master
kareng
Posted

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: Open Original Shared Link

also: Open Original Shared Link

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

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.

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