Positive Genetic Test Plus Symptoms- Does That Equal Celiac?

[cindyb1]

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

[GottaSki]

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.

[1desperateladysaved]

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

[IrishHeart]

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." 

 

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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.