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Gene Testing

Corrine

By Corrine
in Doctors

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Corrine Rookie
Corrine
Posted

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
gf4life
Posted

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
KaitiUSA
Posted
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
CaliGirl
Posted

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
gf4life
Posted

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
Corrine
Posted
  • Author

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
CaliGirl
Posted

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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    • knitty kitty
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      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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