enterolab or kimball genetics?

[duchessisa]

I found some info on another lab that does genetic testing for celiac sprue. I haven't seen mention of it here so it thought I would post the address in case it is useful for some one. I am seriously looking into having my family tested and would like to know which is the better test, if tere is a difference, and what the cost is. I will post what I find out. Meanwhile you can check out thier site.
http://www.kimballgenetics.com/press/120104.html

[aklap]

Hi Duchessisa,

I don't know a great deal about Kimbal. I have heard of them, but I don't think I've heard of anyone using them.

One difference in Enterolabs genetic testing is looking for the DQ1 gene. If I remember correctly they not only look DQ2 & DQ8, but the less common DQ1 gluten sensitivity gene. This is not widely checked or accepted...YET.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[duchessisa]

you are right. I spoke with Kimball and they only test for DQ2 & DQ8. Also she stressed that this is not a DX, only a gene that is carried. After a little homework I have decided Enterolab is my choice. My pediatrician didn't want to know anything about it--just told me to call my insurance to see if it was covered. I thought it was an oddity for me to have to call and so did my insurance. They told me it (genetic testing) was covered but a specialized lab would have to be justified. In other words, a short note explaining that no other lab could preform the tests asked for. I printed NINE pages about CD, how lactose intolerance can be attributed to it, as well as many life long diseases, the incidence rate, the misdiagnoses common made, the complete list of testing offered by the lab with each test justified for our needs and all the contact info for the lab. With a hand written note explaining what our insurance needed to approve the tests. I think she got the hint. I got a call from her head nurse telling me she was taking care of it and looked forward to whatever challenge it may present. Nurses have been great in my experiences My three girls should be tested by January with results posted here as soon as possible.

[aklap]

Hi Duchess,

I would agree that a genetic test is not a diagnostic test (I know some do not feel that way). From my understanding - it tells you if you have the genetic makeup for it. It does not mean that you have the disease.

I am glad you have a group of people that are willing to work with you on this!!

As for insurance coverage...it all depends on the insurance company. I have heard the same...if you can get a letter stating it's medical necessity -many companies will cover it.

Good luck!! Let us know how things go.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[duchessisa]

I realize Celiac genes don't make celiac Disease, but isn't it a wonderful thing to be able to be certain that my children do or don't carry the gene. I think it will be even more important to them individually when they have children of their own. I do seiously fear that my seven year old is showing signs and symptoms. Also the Enterolab does the antibody test from the stool. That should be our DX. The gene testing will be proof positive. I really have much more faith in this testing.

[duchessisa]

[quote="aklap"
I am glad you have a group of people that are willing to work with you on this!!
As for insurance coverage...it all depends on the insurance company. I have heard the same...if you can get a letter stating it's medical necessity -many companies will cover it.

Good luck!! Let us know how things go.[/quote]
Well things are dragging on but it's too early to complain. The senior advisor with my insurance company is gluten sensitive which may be a bonus. I fear that he falls into the catagory of those who refrain from gluten when it's convenient.... I hope I am wrong. He would preffer My little one get the blood work panel, even though I have explained we are primarily a gluten free household and I don't believe Miranda eats nearly enough gluten to show good results. He is uncomfortable with the fecal test done through Enterolab. He actually said he won't "endorse it" because he can't find any good scientific research to support it. I think I will probably get the blood panel ordered and if we are lucky that will show positive results and that will be the end. I don't wish Celiac on her but there is something wrong with her system and I hate a wild goose chase. Juleah (older celiac sister) has Gerd with hiatel hernia. Miranda may have the same with out CD. She gets a lump in her throat and has tummy aches, her stool looks normal but she is a bit gassy and it takes her FOREVER to go #2. I will let you know when something changes...

[Jeannine1]

I was just on another board & we were talking about all the problems we had swalling, especially for me it was liquids - it used to happen occasionally. Not since I have been GF though.

Good Luck with your testing - keep us posted.

Yep, the insurance companies would just like to bypass the doctors & practice medicine themselves !! & I am sure they do not like Enterolabs. As usual the big insurance company is so caught up with itself that it cannot make a decision that in the long run will save them thousands & thousands of dollars of medical bills.

In the future once the insurance companies catch on - they are going to demand testing for celiac on all their clients & I foresee that if you get sick & test positive for the antibodies that they will not cover the charge for your care because of your negligence of eating gluten.

Did you read that bit about NY going to register all the diabetics in the state so that they could all be monitored for better health care? The government has a vested interest in keeping the population healthy. Which is going to be impossible if they do not figure this celiac stuff out, because I think that about 30% of the population has celiac or gluten intolerance.

[aklap]

[Jeannine1]

Right on Al, just think back to when some doctor discovered there was such a thing as sanitation - and that if they washed their hands less patients died. Of course most of the doctors thought this was a bunch of hueey

[duchessisa]

I got a call from the insurance company today. Dr Connolly was the man I spoke with, who is himself, Gluten sensitive. He couldn't tell me how to test my daughter Miranda for CD being that she eats a gluten restricted diet. He will allow for us to drive 2 hours to the childrens hospital to see a pediatric GI doc who maybe able to help, though I don't know how. He also asked that my oldest confirmed CD daughter have the gene test done. I can't clearly see why, but if he's offering, why not? His thought is that if she is not a gene carrier no one else in the family has to be tested. But we know, and he knows, we have another confirmed celiac in the family. Any of this make good sense? Not to me, but I have decided to roll with it untill They stop trying to help. I am sure the GI Doc will want to do a gluten challenge... I don't want to go to that extreme with Miranda's health and comfort. Wish me well.

[duchessisa]

Update
Dr Connolly from our insurance company called my pediatrician and ordered a celiasc panel and gene test for BOTH of my girls. I didn't understand why, being that he has refused to test Miranda in previous phone calls. And why a celiac panel on Juleah, who has already had one which lead to her biopsy, all of which are positive? When asked he said Juleah would be his control to compare Miranda. I don't see how that works but I figured if they are taking blood for the gene test Juleah might as well do the CD panel to make them happy. I hope to get result very soon. ~Duchess