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cindyb1

Positive Genetic Test Plus Symptoms- Does That Equal Celiac?

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Hello,

 

My doctor ran a genetic blood panel and has been so busy that I can't see her until next week. I received a message today that the results are in and I DO carry the gene for celiac.

 

Knowing that I carry the gene, coupled with the fact I've had all major (and minor) symptoms of celiac including that pesky rash, am I safe to think I probably have it? 

 

I havent been eating gluten since August, although have been consistently cross contaminating myself and accidentally consuming gluten in things I didnt even realize contained gluten. The blood tests for the IgA etc. were negative, the endoscopy may not show any damage since I havent actively been eating gluten.

 

What would you do if you were me? Just figure I probably have it and keep living my life gluten-free, or have an endoscopy? 

 

Thanks for any input, advice and thoughts. 

Cindy

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Hello,

 

My doctor ran a genetic blood panel and has been so busy that I can't see her until next week. I received a message today that the results are in and I DO carry the gene for celiac.

 

Knowing that I carry the gene, coupled with the fact I've had all major (and minor) symptoms of celiac including that pesky rash, am I safe to think I probably have it? 

 

I havent been eating gluten since August, although have been consistently cross contaminating myself and accidentally consuming gluten in things I didnt even realize contained gluten. The blood tests for the IgA etc. were negative, the endoscopy may not show any damage since I havent actively been eating gluten.

 

What would you do if you were me? Just figure I probably have it and keep living my life gluten-free, or have an endoscopy? 

 

Thanks for any input, advice and thoughts. 

Cindy

 

Depends on how much you gluten you have been accidentally ingesting.  Given just these facts, if you are still having consistent symptoms, I'd have an endoscopy.  But I always weigh in on the side of more data is better.

 

If you opt to remain gluten-free, it is time to tighten up to make sure you are not accidentally ingesting gluten.

 

Good luck to you :)

 

Edited to add:  If you choose to have an endoscopy -- eat at least one piece of glutenous bread per day for two weeks prior to the procedure.


-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)

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I found out it is unconventional, but my MD accepted it.  I did have 4/4 genes for celiac.  I had symptoms she could see, I had information about changes that occurred after I went gluten free.  We have since noted low nutrient levels that came up after treatment.  A new MD I went to, seemed skeptical until I noted that fact.  I had miss-shapen red blood cells that have normalized.  Even my once skeptical immediate family agrees now that there had been something vastly wrong.  Something to do with gluten and food.  It really throws me for a loop if I accidently get some.

 

You will want to check if there is something else going on.  You may want a diagnosis that nobody will question.  For me the thought of a gluten challenge seemed unethical.  You do need to be eating gluten to do the test.  If you ever want to be involved in a study of celiac disease, you need the biopsy.  One other advantage of note is possible tax advantages with an official diagnosis.

 

Whatever you choose, I wish you the best of healing and health.

Dee

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Just carrying the gene is not a diagnosis, I am afraid. Many people carry the genes for celiac . In 

fact, "up to one third of the U.S. population has the genes for celiac disease, but it 
is thought that only 1-4% of them will actually develop the disease at some point 
in their lifetimes. This means that people with DQ2 or DQ8 can develop celiac 
disease, but the vast majority of them aren’t destined to develop it." 
 
 

If I were in your shoes and I could tolerate the gluten challenge, I'd have the biopsy and make sure. I would never assume I have celiac based on the gene test .IMO ( I would never last through a gluten challenge myself so I am not recommending it per se, just talking with you here)

 

Depends on how much value you put on a DX. There are no real tax benefits with celaic, believe me.

It's tricky itemizing all that stuff and then deducting for who doesn't eat gluten-free, etc. It involves a certain percent of your income vs, health fees for other medical issues, etc. Everyone I know who tried to do it--was audited. 

 

 

However, you mention "the pesky rash"---do you mean DH? because if you have a real DX of that, then you have celiac, hon. 


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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