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Gene Testing


Corrine

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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...

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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


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    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
    • trents
      @Mari, did you read that second article that Scott linked? It is the most recently date one. "Researchers comparing rates of headaches, including migraines, among celiac patients and a healthy control group showed that celiac subjects experienced higher rates of headaches than control subjects, with the greatest rates of migraines found in celiac women.  Additionally, celiacs had higher rates of migraine than control subjects, especially in women. In fact, four out of five women with celiac disease suffered from migraines, and without aura nearly three-quarters of the time."
    • Mari
      As far as I know and I have made severalonline searches, celiac disease disease has not been recognized as a cause of migraines or any eye problems. What I wrote must have been confusing.
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