Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Information Request On How To Dna Test!

saaa-wheat<3

Recommended Posts

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!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.