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fetchfelix

When Should I Tell My Siblings ?

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My Dr has told me that based on my blood tests I have celiac disease, but as I understand it this can't be 100% confirmed until biopsy through an endoscopy. I can't do that for a couple of months. I have 2 brothers, who I have little contact with. I know I should make them aware but is this something I should make them aware of now, or only after having it confirmed?

 

Felix

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If you have the gene, you should let them know and encourage them to go get screening done.  Check out the following links:

http://www.cureceliacdisease.org/archives/faq/what-is-genetic-testing-and-who-can-benefit-from-it

http://www.cureceliacdisease.org/archives/faq/ive-tested-with-the-genes-for-celiac-disease-but-i-havent-yet-shown-any-symptoms-for-it-what-should-i-do

I would probably wait until all your results are back so you can give them a full set of info.

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What blood tests were positive? Most of the celiac panel is specific to celiac and if those tests are positive you have celiac no matter what the results of the endo. You can tell them any time. Do advise them to get screened through blood work. There are celiacs that don't have the two most common genes. If that should be the case in your family using gene testing as a first approach to testing could result in folks that do actually have the disease not being diagnosed.

Make sure you keep eating gluten until after the endo. If you are very ill you could ask to be put on the doctor's cancellation list and you might be able to get in sooner.  

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Here's what I was told "Your blood tests are consistent with Celiac disease.

I do recommend upper endoscopy with plan for small bowel biopsy to confirm the extent of this, but regardless of findings, lifelong wheat gluten avoidance is recommended."

 

My actual results - 

 

INTERPRETATION:   SEE NOTE Serological evidence for celiac disease is present. TISSUE TRANSGLUTAMINASE ANTIBODY, IGA   35 Value Interpretation
----- --------------
<4 No Antibody Detected
> or = 4 Antibody Detected IMMUNOGLOBULIN A 81 - 463 mg/dL 193

 

ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER NEGATIVE POSITIVE

 

ENDOMYSIAL ANTIBODY TITER <1:5 titer

1:20

 

So is this all pretty definitive? I know I need to see a GI & get an endoscopy but Im unlikely to be able to get that done in the next 6-8 weeks anyway as Im about to travel overseas for a month. I've read about gluten challenge, but Im not going to be agreeing to that. I just don't eat that much gluten to begin with. Im VERY reluctant to go through a lot of testing, a. for time and money spent, and b. for confidence in it. Earlier this year I was diagnosed with a potential severe life threatening heat condition, and visits with 3 different cardiologists ended with that all being reversed. Even now I've been recommended to see someone else, but they are not covered by insurance & if I do have THAT disease I will be permanently disabled from my current job. Now that my symptoms are totally resolved Im reluctant to do that until I have another job, which has proven problematic. Being in school & the medical profession I have access to all the information my Drs do & the bottom line is that the medics themselves disagree on diagnostic tests & significance. In the end, the final cardiologist said if the initial diagnosis was correct it would change my life & so they had to be certain. His final diagnosis was something much more benign. As I understand it an endoscopy is the only way to be 100% certain I have the disease, or are these labs definitive? 

             If there's one thing I know from  working in healthcare its that best medical knowledge if often incomplete, or changes, and we ask people to change their entire lives sometimes on minimal evidence. Going  totally gluten free is something I really don't want to do, and won't unless Im certain it will be worth it. But I don't think for me it will be very hard as I have little gluten now - so how do these results stack up with that? My diet is already mostly based on Michael Pollens advice "Eat food, mostly plant, not too much". My brothers are even more medically skeptical than I am - one is in big Pharn and knows how corrupt that research can be, and nutritional research even more so. If you look at the way medicines are researched you can see huge gaps...........but nutritional research is far worse. So  all in all I won't to make my brothers aware, but only when my diagnosis is pretty certain. Thanks

 

Felix

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You are one of the lucky ones that has a doctor who understands that the biopsy can be negative and this does NOT mean you don't have celiac.  It just means damage was not found (not yet, or maybe it was missed, lots of reasons.)

 

All first degree relative should be told and they should get the blood screening done even if they have no symptoms at all.  It is advised that they be re-tested every 2 years.  Sooner if symptoms are present.  If they happen to have symptoms but their blood tests are not positive, they still may benefit from the diet.

 

I had symptoms for 5 years and never made the connection.  It wasn't until my son was diagnosed that I got tested.  I WISH someone had encouraged me to get tested sooner.  

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I was given a diagnosis of celiac disease with only a positive tTG IgA and EMA IgA too.  With those two tests, it is a sure thing that you have celiac disease.  As Cara said, even if the biopsy misses the damage (and it does about 20% of the time) you still have celiac disease.

 

Page 12 of this report shows how specific the EMA IgA and tTG IgA actually are: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

I think you can safely tell the world that you have celiac disease, and that your relatives should be checked.

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