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Genetic Testing For Celiac - How Accurate + Questions

marie06

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marie06 Rookie
marie06
Posted

Hello, I apologize if this is a dupe, but I posted about this last night and I cant find the post anywhere.

I have been gluten free since 6/5. I also went casein free at that time. I have been dealing with a laundry list of health problems since 1992. I had been dealing with nausea for about 2 years 24/7, so I went to see a GI doc. He thought perhaps it was IBS, but did mention the word "Celiac" to me (first time I had ever hear of it). He decided to do an endoscopy on 6/5. While waiting for the endoscopy, I researched Celiac and it seemed to describe me almost to a "t". So when I showed up on 6/5, I asked him to biopsy. He did (only 1 sample) and said that it was negative for Celiac. (And diagnosed my nausea as being from "Chronic pain"...funny how a gluten-free diet has made the nausea disappear).

I went, after 5 .5 weeks being gluten-free/CF to a food allergist. He did a bloodtest for Celiac and that too came back negative as did all of the foods that I had him test for. So perhaps I am not Celiac, and just Gluten Intolerant. The question of the possibility of Celiac plagues me for two reasons:

1) I wonder if I *AM* celiac - could perhaps my daughter also carry the celiac gene. She is currently not showing symptoms. So if she DOES carry the gene, I can be on the lookout, but if she DOESNT, I can stop worrying

2) It would be helpful to me to know if I carry the gene. Being Celiac is so much worse than just intolerant....I worry about what I may have done (cancer wise and otw) being glutenized for at least 16 years (when I have decided, based on symptoms, I triggered Celiac IF I have it).

NOW TO MY REAL QUESTIONS:

1) I know that biopsy and blood tests are not always accurate. How accurate is Genetic Testing? I dont want to go through the process and expense if that too could not give definitive results.

2) is there a better doctor and or lab to go to for the best results?

3) What specifically do I ask for if I get the test? Since I am not going to a "Celiac doc" I need to know exactly what I want my primary care phys and pediatrician to do.

4) any other info that you might have in regard to the above would be appreciated.

THANKS in advance! :)

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kmps Newbie
kmps
Posted
NOW TO MY REAL QUESTIONS:

1) I know that biopsy and blood tests are not always accurate. How accurate is Genetic Testing? I dont want to go through the process and expense if that too could not give definitive results.

2) is there a better doctor and or lab to go to for the best results?

3) What specifically do I ask for if I get the test? Since I am not going to a "Celiac doc" I need to know exactly what I want my primary care phys and pediatrician to do.

4) any other info that you might have in regard to the above would be appreciated.

THANKS in advance! :)

Well...... I will try and help.

I have NOT been dx with celiac. I have been to sooooo many Drs since my first symptoms apeared- about 8-9 years ago. I just went to a top Doc and he is stumped as well. (I have EGD results: "beginning stage" of celiac -but this was done while I was gluten free so I have been eating yucky gluten for months now and waiting re-testing)

I know for sure that no testing for celiac should be done if you are gluten free, which I think you said you are for a bit now. So you should go back, yes, go back eating glutenous foods for about 6 months I think they suggest, and then get re-tested. That is aproximately the equivalent of 3 slices of bread.

I also had the DNA test for celiac done- which was, btw, covered by my insurance! Yippee!

My test came back negative. I was very upset since i was at the end of my rope and had seen so many Drs and still no answer. I called around to celiac centers and read all I could about the details. This is what I learned: The current DNA test shows only the KNOWN genes for celiac. There MAY be other genes that are NOT KNOWN yet, but the chance is very, very slight. Murphy's Law tends to follow me everywhere so I don't ever discount even the smallest percentage of anything.

I did find, waaaaay down, in the small print that sometimes a person can have celiac without the genetic predisposition. But, of course not all docs agree or will even admit anything of the sort.

Which brings the topic of Drs. Like I said, I have seen so many and there aren't many- actually I have never found one single Dr.- that I trust or thought that they knew *enough*. I have read all about Dr. Peter Greene at Columbia U. He runs the #1 celiac clinic of the nation- so they say. He sounds very impressive, but you will wait forever to see him. People come from around the globe for a proper dx! He also specializes in GI issues stemming from auto imune issues. I think he will be my next step if this one does not know what to do!

I hope this helps. Blessings.

kmps

Jestgar Rising Star
Jestgar
Posted
1) I know that biopsy and blood tests are not always accurate. How accurate is Genetic Testing? I dont want to go through the process and expense if that too could not give definitive results.

2) is there a better doctor and or lab to go to for the best results?

3) What specifically do I ask for if I get the test? Since I am not going to a "Celiac doc" I need to know exactly what I want my primary care phys and pediatrician to do.

4) any other info that you might have in regard to the above would be appreciated.

THANKS in advance! :)

The gene they test for is associated with celiac disease, not causative. It is also carried by about 1/3 of the population, so you have a 30% chance of carrying the gene whether or not you have celiac disease. The test is interesting, but not informative.

You may never get a positive lab test result. Many people don't. They accept their own dietary response.

marie06 Rookie
marie06
Posted
  • Author

Thanks for your post kmps! I feel your pain. I have struggled with poor health since 1992, and going gluten free has made the most difference to me thus far (and Ive tried a LOT of different things to improve my health). Ive been told I have CFS, fibromyalgia etc....which *I* think is a doctor cop out. Not that I disagree that those diseases DO exist in some people, I just think those diseases are over diagnosed, and not the crux of most peoples REAL problem.

My insurance will cover the genetic test (80%) if my doc gets pre-approval (he is out on vacation til the week after next - but he is generally very good about stuff like this). I know that a gluten-free diet makes me feel a LOT better, so I plan to stick with it. But I really WOULD like to have a better idea what is making me so ill (hence the genetic testing. Plus I worry that I may have passed it to my daughter). I will keep the doctors name, altho not sure Id ever go that route (unless I take a turn for the worse).

Good luck to you!

fedora Enthusiast
fedora
Posted

marie,

your bloodtest was inaccurate because you were not eating gluten at the time. You have to be eating it. The allergist should have known this.

You can get your daughter gene tested.

You could not pay me enough money to go back on gluten for testing. My dietary results were enough, plus the fact that they have lasted(it has been over 6 months)

good luck

tipnpat Newbie
tipnpat
Posted
The test is interesting, but not informative.

They are indeed interesting. I did genetic testing with Enterolab on myself and then Kimball genetics on my two boys. What I liked about Enterolab was that they tell you each allele no matter what it is. Kimball only tells you whether or not DQ2 and/or DQ8 was detected. I was second guessing Enterolab's credibility and so that was why I went with Kimball for my children but I actually like Enterolab's interpretation better because they tell you what you have, not just what you don't have. For instance: Kimball's report said my one son had DQ2 and DQ 8 detected. The other son's report said DQ 2 detected. DQ 8 not detected. With Enterolab I knew that my alleles were DQ2 (2.5) and DQ4 (which is not associated with celiac but is associated with Type I diabetes).

I couldn't help myself. I was curious. So, I did an Enterolab swab on my DQ2 son because I wanted to know what his other allele was. He is DQ 2 & 6. That means my husband must be 2 & 8. So... yes, it's informative but we're no closer to knowing if my children have celiac. We only know they have a gene and that an elimination diet worked well for them.

Also, Enterolab is less expensive and they use PCR analysis like Kimball and Prometheus. The other labs give the alpha chain along with the beta chain but Enterolab says this isn't necessary.

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