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

Gene Testing


Corrine

Recommended Posts

Corrine Rookie

In reading an article by Scott he had gene testing done for himself, his son, and his brother. I'm seriously interested as I have a feeling my side of the family has celiac disease. My husband's sister has celiac disease and it's from there that found that my daughter has celiac disease. In talking to my doctor he doesn't know of any labs in Canada that would do private testing. Are there any in Canada?

  • 5 weeks later...

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



Celiac.com Sponsor (A8-M):



gf4life Enthusiast

Have you checked into having the gene testing done by Enterolab here in the US? I believe they ship to Canada, and the gene test is a cheek swab, which is dried before you package it and then you just mail it back to the lab. It wouldn't effect it if it took longer to ship. It costs about $150 per test. Open Original Shared Link

You can view the order page here: Open Original Shared Link

God bless,

Mariann

KaitiUSA Enthusiast
In reading an article by Scott he had gene testing done for himself, his son, and his brother.  I'm seriously interested as I have a feeling my side of the family has celiac disease.  My husband's sister has celiac disease and it's from there that found that my daughter has celiac disease.  In talking to my doctor he doesn't know of any labs in Canada that would do private testing.  Are there any in Canada?

<{POST_SNAPBACK}>

Yes, the test that was mentioned in the previous post has been done by many people who live in Canada and would probably be a good option for you. They test for celiac genes and gluten intolerance genes.

CaliGirl Newbie

Just a note of caution--

Let your ultimate guide be what your body tells you, not what your doctor tells you.

After a year of being a self-diagnosed celiac and living gluten free, I was still having problems, so I went to a highly respected GI doctor at the closest teaching hospital. She supposedly is THE celiac disease expert in the state. Well, the TGG test and the genetic test both came back negative. The TGG made sense, but I was shocked that I didn't have the genetic marker. She told me that there was no way I have, or could ever have celiac disease, and concluded that I "just have IBS". She told me not to worry about cross-contamination, don't worry about small amounts of wheat ingredients in food, and gradually try to reintroduce bread, pasta, etc. <_< This is probably the worst advice I've ever received. My warning for you is this: if you know what foods make you ill, don't eat them, no matter what the test results say.

Rachel

gluten-free since May 2004

gf4life Enthusiast

Rachel,

You may not have the Celiac gene marker, but you might have gluten intolerance genes. When doctors run the gene test for Celiac they only check for DQ2 & DQ8. At Enterolab they also test for DQ1 and DQ3 (other subtypes other than the 8) because those have been found to cause gluten intolerance, but are not at this time considered to be Celiac genes. In my family we have two of each (and my husband is at least a carrier of the genes as well, but won't get tested). Only my daughter and I have DQ2 genes. If I had had my boys tested with a different lab they would have come back negative as well. And they were not only symptomatic, but their symptoms were relieved by the gluten-free diet. So there is no telling me that the Enterolab tests are not valid.

I am glad that you listened to your body and stayed on the diet. My doctor wouldn't accept the Enterolab results either and she still thinks IBS is my only problem. :rolleyes: I asked her if it is IBS then why do my symptoms go away when I am gluten-free? Her response was that a lot of her IBS patients put themselves on a gluten-free diet and they improve, she isn't sure why! Duh, they are most likely gluten intolerant and she is clueless. Thank God that my children's doctors are supportive of my having them on the diet.

God bless,

Mariann

Corrine Rookie

Thanks for the info. It had been so long since I posted this thread that I had given up on it. I will look into Entrolab. I do listen to my body as that truly is the best way. When I approached my doctor about having my son tested he gave me a look that said "Not through me.". Since my son has extreme allergies to milk and soy I want to stay on top of anything else. Also if I come back positive for the celiac disease gene then it would be an encouragement to those of my siblings who are having health issues.

CaliGirl Newbie

Mariann,

Thanks for the explination about the genes. After all the testing I did with this doctor, I got mad when she decided I "just have IBS." It's such a cop out. I guess I could get the testing done from Enterolabs, but at this point, my feeling is, "why bother?" I'd rather figure out the other the other stuff that could be wrong with me, instead of verifying what I've already figured out.

I guess the moral of the story is to get tested from Enterolabs directly, instead of testing with Prometheus labs through a doctor. (Heavy sigh.)

Rachel


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748

    Jadelucia
    Newest Member
    Jadelucia
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.