Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Dna Testing


Discovery

DNA testing  

You do not have permission to vote in this poll, or see the poll results. Please sign in or register to vote in this poll.

Recommended Posts

Discovery Rookie

I have gone to a lot of doctors and on my own have discovered excluding gluten from my diet has radically changed all of Celiac symptoms. I've read that I would have to go back on gluten in order to take a lab test. That's crazy. I wouldn't do that! I liken that to telling a child it's okay to play on the freeway. It's not my fault the medical community doesn't have a good test. How come they are able to test hair for drugs, etc., but can't do something that simple for gluten?

Okay, here is my main question. I understand that DNA testing does not confirm Celiac only "rules it out." That's okay with me. I watched my father go through (never diagnosed) ALL of my same symptoms and then die of colon cancer. :( Incredibly sad. I am 60 years old and JUST discovered on my own what has been going on in my body forever.

I see so many chats that unable to get positive blood tests or endoscopy findings.:( I understand this can happen no matter what level of gluten protein is in my blood....pardon the expression, but it's a crap shoot.

I'd like to know how to get DNA testing...is it expensive? Thank you.

Discovery in La Crescenta, CA


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



Celiac.com Sponsor (A8-M):



justanotherday Newbie

I had my DNA testing done through Enterolab. I'd suggest going to their website, www.enterolab.com, and checking into it to see if it's what you're intersted in. You can also have stool testing done there which is another option.

The gene testing through Enterolab costs $149.

Good luck! And by the way, I'm glad to hear that you're feeling better on the gluten-free diet. Me, too! :)

HAK1031 Enthusiast

My GI ordered gene testing through a regular lab for me because I was in the same situation as you- my initial bloodwork was negative, but I wasn't about to go back on gluten for an endoscopy. It turns out I do have the common allele for celiac, and that combined with my symptoms, he says, is enough for a diagnosis.

The only problem is that insurance is refusing to cover it, and it's a $500+ test. But we're fighting the charge, and the GI is helping, so it might work out. Just double check on that...stupid HMOs...

Owen'sMom Rookie

I had my son tested through Enterolab as well after his bloodwork and biopsies came back negative. Turns out that he has both celiac genes, that in combination with his great dietary response is enough proof to me.

par18 Apprentice
I have gone to a lot of doctors and on my own have discovered excluding gluten from my diet has radically changed all of Celiac symptoms. I've read that I would have to go back on gluten in order to take a lab test. That's crazy. I wouldn't do that! I liken that to telling a child it's okay to play on the freeway. It's not my fault the medical community doesn't have a good test. How come they are able to test hair for drugs, etc., but can't do something that simple for gluten?

Okay, here is my main question. I understand that DNA testing does not confirm Celiac only "rules it out." That's okay with me. I watched my father go through (never diagnosed) ALL of my same symptoms and then die of colon cancer. :( Incredibly sad. I am 60 years old and JUST discovered on my own what has been going on in my body forever.

I see so many chats that unable to get positive blood tests or endoscopy findings.:( I understand this can happen no matter what level of gluten protein is in my blood....pardon the expression, but it's a crap shoot.

I'd like to know how to get DNA testing...is it expensive? Thank you.

Discovery in La Crescenta, CA

I actually got gene testing done on the "back end". I had been on the diet for over a year based on positive biopsy. (There was no need for a blood test because I was so malnourished the doctor went straight to the scope). Anyway in order to see how I was progressing I had the Celiac panel done and while I was at it requested the gene test for myself and my mother. She came from a large family and many of her brothers and sisters are still alive. Both of us had the DQ2 gene. My Celiac panel was "perfect" as one might expect after being gluten-free for over a year. At first her insurance did not want to pay but we persisted saying it was in fact "preventive medicine" in that knowing the gene exists means if symptoms did start the diet could be a first option. The insurance company paid the bill. It can be quite expensive.

It is my opinion that if someone suspects Celiac then the most logical approach would be the diet first or gene testing and the diet to see if you are on the right track. Either way you could hold down the cost. If you respond positively to the diet you can either get on with your life or decide at some point to attempt more testing but as you probably already know what's the point if you will ultimately end up on the diet for good anyway. Hope this makes sense and good luck.

Tom

GlutenWrangler Contributor

Genetic testing does not and cannot rule out Celiac Disease. Celiac Disease isn't exclusive to the DQ2 and DQ8 genes. Two percent of diagnosed Celiacs do not have DQ2 or DQ8. I have DQ1 and DQ3, and I am a diagnosed Celiac. So even if your DNA tests comes out negative for DQ2 or DQ8, you can still have Celiac Disease. Just something to keep in mind,

-Brian

ravenwoodglass Mentor
Genetic testing does not and cannot rule out Celiac Disease. Celiac Disease isn't exclusive to the DQ2 and DQ8 genes. Two percent of diagnosed Celiacs do not have DQ2 or DQ8. I have DQ1 and DQ3, and I am a diagnosed Celiac. So even if your DNA tests comes out negative for DQ2 or DQ8, you can still have Celiac Disease. Just something to keep in mind,

-Brian

Brian you took the words right out of my mouth. The genetic research into celiac is in it's infancy, not all the genes are recognized. If I had relied on blood tests and gene tests for diagnosis I would be dead by now. I didn't have my genes tested until I had been gluten-free for almost 4 years. I did it because my DD was gene tested and came back negative for DQ2 and DQ8 and the doctor told her there was absolutely no way she could be celiac as she didn't have the genes and that her previous biopsy derived diagnosis was false. Yea right. There is no doubt that I had full blown celiac and guess what I don't have the recognized genes. My gene in the US is recognized as a gene for rheumatiod arthritis, if I hadn't already been gluten-free I would still be existing on arthritis meds instead of being in remission from my arthritis and my multitude of other autoimmune mediated diseases.


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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,185
    • Most Online (within 30 mins)
      7,748

    wmkoehler
    Newest Member
    wmkoehler
    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

    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
    • Sheila mellors
      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
×
×
  • Create New...