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Information Request On How To Dna Test!

saaa-wheat<3

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saaa-wheat<3 Apprentice
saaa-wheat<3
Posted

Hi All,

It's been awhile since I have been on the board, and I am at the office quickly trying to get this one in :ph34r:

I have just recently gotten a raise via paid health insurance, which, I just found out will cover for DNA testing...YAY! :D I plan on having that done for family history of Breast Cancer (mom died at 44, I am now 41) and also for the celiac gene.

Saw my dermatologist for a letter for my insurance company to confirm that I am allergic to yellow dyes and cellulose (a filler found in many medications, a replacement found in many gluten-free foodstuffs, and an anti-caking ingredient in many pre-shredded cheeses) so my insurance company wouldn't question "brand name" every time the physician requested it for my thyroid meds, etc. I also requested her to state gluten, but since I have only proven this by trial and error, she would not state it in the letter and suggested the transglutimase blood testing. I told her I had a GI done because the allergies closed up my throat and I almost choked on a piece of chicken, not to mention I have had GERD all my life, and after procedure doc came in and said that while he opened up my throat, my biopsy was negative (I had shared with him my gluten-free diet). Being all drugged up, I looked at him and said "duh! I've been eating gluten free for four years now, why would you find anything?? LOL...So, I told the dermatologist that it was my understanding that the biopsy was more conclusive than the transglutimase blood testing, and that since I haven't willingly had gluten for 5 years now...

Anyways, I did tell her that there were DNA tests now available; she had never done one, but she said that if I got the information, she would be willing to work with me on that. (I had originally seen her for a different kind of rash I was getting from the cellulose in my meds) BTW...I am going with her, because although she never SAW my DH rash, she confirmed that was what it was by my description, and even suggested that "BTW, you can eat McCann's imported Irish Oatmeal (I didn't even ask!) and I feel that she, out of all my doctors, is the most understanding and the most willing to work with me on this.

So...what to do? Enterolab? and if so, what's the procedure for that? Are there any other suggestions? I'm sorry, I'm sure I am being repetitive and that there is probably another thread out there...but I am at work and I just don't have the time to research it (I only have dial-up at home )

Thanks!!

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ShayFL Enthusiast
ShayFL
Posted

Your Doc will likely need to order from Prometheus labs for your insurance to cover it. But there is also Kimball and Enterolab (which each test for the main Celiac genes, but Enterolab tests for gluten sensitivity related genes as well). There is a slight difference in how they test. See what your insurance will cover first and go with that.

saaa-wheat<3 Apprentice
saaa-wheat<3
Posted
  • Author
Your Doc will likely need to order from Prometheus labs for your insurance to cover it. But there is also Kimball and Enterolab (which each test for the main Celiac genes, but Enterolab tests for gluten sensitivity related genes as well). There is a slight difference in how they test. See what your insurance will cover first and go with that.

Could someone please explain the difference between what is just the 'main' celiac gene an the 'gluten sensitive' gene?

what are the differences in how each one tests?

sorry to be such a pain...please feel free to post a link to another post/article if necessary. time's a commodity.

thanks again!

ShayFL Enthusiast
ShayFL
Posted

I used Enterolab and Kimball for genetic. This explains it well:

https://www.celiac.com/articles/21567/1/Ten...ting/Page1.html

saaa-wheat<3 Apprentice
saaa-wheat<3
Posted
  • Author

Oh yes! I remember this article now, in fact, it was the one that sparked me to contact my insurance company to see if they cover...they didn't even need the diagnostic codes, they said all genetic testing was covered :)

Is there any reason why you decided to use two labs, other than the fact that Enterolabs doesn't cover the alpha portion of the DNA testing?

and...thank you for the link!

ShayFL Enthusiast
ShayFL
Posted

I did Kimball first and I came up NEG for the 2 genes they tested. I wanted more INFO so did the Enterolab too. I possess 2 gluten sensitivity genes, one of which is associated with neuro symptoms. I have manly neuro symptoms.

  • 4 weeks later...
saaa-wheat<3 Apprentice
saaa-wheat<3
Posted
  • Author

Thanks, Shay- I appreciate your response. With the article by Dr. Scot Lewey in this weeks' celiac.com update, I can understand now what a can of worms this question has posed!

(for those interested) https://www.celiac.com/articles/21628/1/Cel...tics/Page1.html

Would you mind sharing what your neuro symptoms entail? While I discovered my disease by my DH rashes, I also would notice when I "slipped" during the two years prior to "willingly" being off gluten for the past five years, that gluten affected my mood and also my ability to focus/concentrate.

What is strange, is now that I have been so good, when I do get glutened, it's less of a rash and now more a GI symptom...still along with the mood thing. I find this odd and wonder if anyone else has experienced the same. Could it be that I was just desensitized to the GI thing because I had been exposed to it all my life, and now that it's healed, I react?

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happygirl Collaborator
happygirl
Posted

Enterolab is not in-network for insurance purposes.

Mainstream labs like Quest Diagnostics and Labcorp test for HLA DQ2 and HLA DQ8.

ShayFL Enthusiast
ShayFL
Posted

Mine are vertigo, migraine and neuropathy. But ALL of them are markedly improved after the past 5 months gluten-free plus some other things I am doing to get better. :)

glutenfreewithease Rookie
glutenfreewithease
Posted
Mine are vertigo, migraine and neuropathy. But ALL of them are markedly improved after the past 5 months gluten-free plus some other things I am doing to get better. :)

Shay-How long have you dealt with the vertigo? The reason I ask is this was the main symptom that would send me to the doctor most of my life and have me leaving disappointed. As soon as I would say I was dizzy they'd get a look on their face and I knew I wasn't going to get any help. The vertigo is very difficult and I have not found anything that helps to relieve it when it happens. Do you have any insights or do you just wait it out?

nora-n Rookie
nora-n
Posted

You are DQ2 and DQ1 (because both DQ5 and DQ6 are subgroups of DQ1)

Have you ever tried a wb search for Hadjuvassiiou? He writes that about 20 % of his gluten ataxia patients are DQ1.

There are eve two forums about gluten ataxia and neuro symptoms, Open Original Shared Link and Open Original Shared Link

And a gluten ataxia website: Open Original Shared Link

and this new article about Tg6 antibodies https://www.celiac.com/articles/21637/1/Tg6...ders/Page1.html

nora

glutenfreewithease Rookie
glutenfreewithease
Posted
You are DQ2 and DQ1 (because both DQ5 and DQ6 are subgroups of DQ1)

Have you ever tried a wb search for Hadjuvassiiou? He writes that about 20 % of his gluten ataxia patients are DQ1.

There are eve two forums about gluten ataxia and neuro symptoms, Open Original Shared Link and Open Original Shared Link

And a gluten ataxia website: Open Original Shared Link

and this new article about Tg6 antibodies https://www.celiac.com/articles/21637/1/Tg6...ders/Page1.html

nora

Hi Nora!

Thanks so much for the information! I'm going to look at the other forums when I get a chance. The article on the ttg antibodies was interesting. Appreciate it. I don't fully understand all the genes that are involved with celiac just yet. A bit complicated. I'm just glad to feel better and working hard to remain that way!

Nice to meet you!

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