May 16, 2012 at 5:01 pm #9865Cristina LeivasMember
My daughter had genetic testing done…..I still do not really understand what is means, just that she is very high risk. Her test showed the following:
Celiac Risk Genes Detected: DQ2.5 (HLA DAQ1*05:DQB1*0201) and DQ8 (HLA DQA1*03:DQB1*0302) I think the DQ”B” and not DQ “8” but it can be since copy is hard to read.
Can you tell me what it means?May 16, 2012 at 6:40 pm #9866farmwife67Member
It is DQ 8, but I don’t remember all of the specifics. Dr. O and some of the others will help you out with that. but, I do know it is an 8. sounds like a gluten free diet is in order. You have found a good place for support!
LoriMay 25, 2012 at 6:29 pm #9880ecasanovaMember
My testing was done by Cyrex Labs. I still don’t understand the results, but I was told I needed to avoid gluten altogether. The Antibody Array 3 showed many normal and a few way out of range values while some others were leaning more toward the high end of normal. The transglutaminase-3 IgG reading was one that was the highest at 4.75 value while the ELISA Index shows .2-1.6 to be the normal range. My doctor didn’t explain one by one what all these results meant, but since I have been having health problems for the past 2 1/2 years, and my other blood tests ordered by my family doctor always yielded the same negative results and I continued to feel ill, I guess I was just happy to hear something was finally discovered. I am hoping that I have come to the right place so I can learn more about what it all means and how I can continue to help repair the damage gluten has caused.July 28, 2012 at 10:20 pm #9967Tammy BarneyMember
I had two regular blood tests done..probably 10 years apart. Both negative for gluten. Kept on getting sicker and sicker.. I could hardly walk to the mail box in the end. Then I heard of Eneterolab and was tested 2006.
Gluten and Casein was positive. Soy was just under normal and I don’t feel good at all eating that so I don’t.
DNA test at EnteroLab showed :
HLA-DQB1 Molecular analysis, Allele 1 0201
HLA-DQB1 Molecular analysis, Allele 2 0502
Serologic equivalent: HLA-DQ 2,1 (Subtype 2,5)
I was told I have a gene for Celiac disease and one for gluten sensitivity. My levels were not leveled a lot, but I felt so, so sick. It took about a year and a half for my energy to get much better and I am no where near as bad as I was back then.
I need to cut out all grain though, and sugar. I can’t do any processed foods. I know it, but have additional allergies to stone fruits, nuts… Felt slightly panicky with the options..
I see a very supportive chiropractor. I am going to start fermenting cabbage to get probiotics here, because I have not been able to find a probiotic that I can tolerate.
I am not well enough. What I am doing is not enough, so I heard of your site and just ordered the cookbook. I am tired of feeling sick still.
So my question about the lab, are they accurate?September 30, 2012 at 10:50 pm #9042Jon EppersonMember
I had made an imitation chicken salad for my wife’s ladies meeting that night. After finishing it I tasted it and within minutes I was bent over in stomach pain. I read the ingredients label and the first ingredient was gluten. That evening I served the salad to everyone and no one got sick. So, I tried another taste with the same result. That was two years ago and have been what I thought was gluten free since. That is until I learned about the Gluten Free Society. This has been a real eye opener. I just wish I knew about this before I had five back surgeries and became disabled.October 17, 2012 at 11:36 am #10092Tamara LyonsParticipant
I was diagnosed by Doctor Osborne,
To reuse and paste your earlier quote if i may…. This is was my diagnosis by you. THANKS!
“gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.”December 2, 2012 at 9:39 pm #10160Jennifer MurphyMember
I have suspected gluten for awhile. I did the genetic testing:
0302 (HLA-DQ8) Positive
0603 (HLA-DQ1) Positive
I have had ALCAT testing that only showed a mild sensitivity to gluten. I have been diagnosed with fibromylagia, hypothyroidism, hypertension, ocular migraines with secondary anxiety I know that the DQ8 result is a genetic marker for celiac. I’m unclear on what exactly being positive for the DQ1 indicates. I believe I read somewhere that being positive can lead to neurological problems (which I already have) if gluten in ingested. Can anyone clear that up for me? Many thanks from MauiMarch 4, 2013 at 9:37 pm #10256Doris ClendennenMember
I joined a program by Functional Endocrinology of Ohio. Their testing was by a lab in the state of Washington for saliva and stool I tested positive for gluten sensitivity on both tests. I
tested negative for egg, cassien, and soy.March 10, 2013 at 10:04 pm #10260Vicki WellsMember
I am 59 and was always very active and in good shape. I think the gluten affected me slowly until I became very poisoned and had basically no immune system left. By 2010, my symptoms included all the body systems and organs. My main problems were Multliple Chemical Sensitivity, debilitating migraines, with brain fog, inability to concentrate or problem solve and no energy. Other problems were with my with my heart, lungs, liver, gall bladder, vision, back, muscle, joint & bone pain, athletes foot and nail fungus, skin allergies, constipation ( my whole life ), urinary incontinence, gynelogical problems, muscle weakness, high anxiety, mood swings, depression, constant flu like symptoms, balance problems, dizziness, facial palsy, unexplained weight gain at an alarming rate, insomnia, thinning hair, hair loss, etc. These worsened at an alarming rate the last couple of years before going off gluten. I could not be near anyone sick or would get their “cold” or “stomach bug” much more intense than the normal person. The last 3 winters before I found the answer, I literally felt that I was slowly dying. I used to be an RN but knew from experience that most doctors would be very puzzled by what was going on with me and since I left work in 2005, I did not have money to spend on a lot of silly tests, especially since the economy crashed and we lost our business. In 2010, my family paid for a round trip plane ticket to fly back to New England to visit. I felt too sick to do it but thought it was probably going to be my last trip “home”, so I went. I was a basket case when arrived, but after 10 days of being in my sister’s care where she fed me good wholesome food and I probably only ate two donuts in that time period, I felt 80% better. Got back home and saw an advertisement for a book, “The Gluten Connection”. Looking over that pamphlet was my first clue that I probably was sensitive to gluten. I also did some research and got another book. It took me 2 1/2 years to go totally gluten free. Each time I ate right, then cheated, I got a horrible gut ache from the top of my chest down to my colon, had diarrhea, nausea, and sometimes vomited. ALL of my symptoms have either disappeared or have improved significantly and are still improving. I can think clearly, make sound decisions again, do not have the daily migraines but have had only a handful in the last 2 1/2 years ( when I cheated ), and feel better than I have in years. Even my toenails are growing out with no nail fungus! My body is healing itself. My hair is thicker again with more color and less gray, No more skin rashes, the list just goes on and on. AND I can jog two miles without even keeping in shape without any exercise induced asthma and improved stamina and a strong heart again…I think there are SO many people out there affected by gluten, that poison, who do not even know it. Even as a child, I was kind of autistic, in my own world, afraid of most people, distrusting, did not know how to express my wants, needs or fears, etc. I am amazed at the society we live in with the greed of making money to keep people sick. I tried to keep this short but I could have gone into more detail but I will stop.November 17, 2013 at 7:09 pm #10353Doris ClendennenMember
I agree a positive test made me more interested in being totally gluten-free. It gave me the right incentive. My test for gluten were made by a functional medicine chiropractor. I tested positive in both the saliva and stool tests. I later was took a blood test for celiac – it was negative. I had been gluten-free for 6 months when this test was taken.November 24, 2013 at 4:34 pm #10354
@Gluten Free Society said:
Please share how you discovered you have gluten sensitivity…
- Genetic Testing
- Antibody Testing (Anti-gliadin, Anti-tissue transglutaminase, anti endomysial antibodies, etc)
- Elimination Diet
Two years ago an MD ran an IGG test on me. My score was 41 and he said I had to go off gluten. I failed to follow his advice since I did not have any overt symptoms, or at least any I related to gluten. Since that time I’ve learned a bit more about the negative impact of gluten on health and was retested this month. The score has increased to 69. I now believe that my inexplicable exercise-induced asthma–for which pulmonologists have no answers since I am quite fit and have exceptional lung capacity–as well as hypothyroidism, which I’ve had for decades, are gluten-related.
I’m so pleased to have found the GFS program and am going through all the tutorials to get up to speed on what to avoid. Is there by chance a comprehensive list of ingredients to avoid and a list of those unusual items that are permissible (such as wild rice mentioned in one of the posts)?
Also, one other thing: i read somewhere that the gluten molecules used in cosmetics and shampoo and such are too large to penetrate the skin and are therefore safe. Is that the case?
Thanks for this great resource!
maryNovember 24, 2013 at 4:37 pm #10355
Oops. The test I took was IGA.January 31, 2014 at 10:57 am #10364
Here is a list of terms to avoid:
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