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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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Back in February after running all kinds of other tests my doctor off hand said that maybe I should try a gluten free diet to see if maybe I had "leaky gut" or something similar. I went gluten free, viola! I felt 1 million times better. Go back a month later and she's glad for me, but I actually had more information on celiac/gluten free than she did.

I decided given my huge collection of symptoms, the fast recovery, the sudden inability to digest dairy etc to go ahead with the My Celiac ID test to try and confirm whether or not I had the celiac gene since I was unwilling to challenge gluten.

I just got the test back and I am negative for DQ2/DQ8. This may sound crazy but I'm a little disappointed. I've been ill for so long with all doctors and tests coming back "fine." If I was so fine I'd feel better! My family has been very understanding, but it would have been easier for me to have something "real" as far as a test result.

For me also, sometimes I feel like it's all in my head. Is it possible to have mere food make me so sick? This while I'm off from work because I had a horrible reaction to soybean oil yesterday. I KNOW I feel better. I went from not being able to do anything to having the energy to exercise 50 minutes a day, cook, do dishes, hang out with my family etc. I just wanted something more tangible that I could point to as proof. Something to help me through the tough times when I'd give anything for a slice of pizza. I've been doing great so far with having a good attitude, working around my issues.

I guess I just feel let down again, and sorta silly for thinking I could have had celiac. My family and friends know I was taking the test etc and I just feel embarrassed now.

I guess I just need confirmation that gluten intolerance is just as real an issue as celiac.

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What did you come back as? There are a couple of people on the forum who also don't have the classic genes but do have celiac.

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Anne,

I have the same question as starrytrek, and the same observation: There are people on here with celiac without the recognized genes. What were yours? Maybe ravenwoodglass will drop by soon.

There are other genes that are recognized in Europe as celiac genes (or gluten sensitive genese).

The other thing is that docs know very little about celiac but you know a lot about you. If you feel better off gluten, stay off gluten. If you still have symptoms, have your doc look for other problems (e.g. chrons', colitis, lyme disease, slow stomach emptying, low stomach acid...the list goes on) BUT if being gluten-free helps, stay gluten-free no matter what else may be diagnosed. I am one who thinks that most non-asians mostly can't digest gluten and that many would be better off being gluten-free. And that gluten may be responsible for some of our obesity epidemic and the increase of auto-immune conditions like rheumatoid arthritis, Type I diabetes, Multiple sclerosis, lupus etc. Certainly gluten can cause lymphoma or stomach cancer or intestinal cancer.

Wishing you good health.

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yes Anne- you do NOT have to have a DQ2 or a DQ8 to have Gluten Intolerance or CELIAC... there are other DQ genes that can MOST DEFINITELY lead to either. do not feel bad or unidentifiable... you're just not "classic" or "textbook".

you probably dont want to spend money on the Enterolab gene test after already doing the other test- but they DO test for other DQ genes.

there's also the complete celiac panel thru your doc- but if you're gluten free- the results may be falsely negative.

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Thanks guys. You all have really encouraged me. I went over to my parents and sorta melted a little to them and they looked at me like I was crazy and wanted to know why I was hinging everything on one little test. My health is night and day different since Feb 1, 2011. That really is fast for someone to go from feeling like they're dying to actually wanting to exercise (yeah, freaky).

With their encouragement I've come to the realization that I am the only one that is going to be the most expert on all things me. I don't need the validation of an opinion, test etc to tell that dairy, soy and gluten make me feel unbelievably horrible. I can be responsible and just direct my health. It's working so far!

As far as the test results. All it shows is that I was negative for both DQ2/DQ8. It doesn't expound further than that, sadly.

Ok. :) I'll stop being psycho now. Feeling sick from accidental soy ingestion really sorta messed with perspective a little (note to self: don't go grocery shopping in a hurry...you might grab vegetable oil instead of canola without realizing that vegetable = soy).

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I've come to the realization that I am the only one that is going to be the most expert on all things me. I don't need the validation of an opinion, test etc to tell that dairy, soy and gluten make me feel unbelievably horrible. I can be responsible and just direct my health. It's working so far!

BRAVO annegirl!!!!!! That's exactly right! Good for you... you keep making yourself better! I posted a couple of articles oth the "prediagnosis" forums and when I found them I wanted to SHOUT THEM FROM THE ROOFTOPS! Please PLEASE please... read them... they were written for YOU! :) Enjoy the read... it will validate you! B)

University of Maryland School of Medicine Researchers Identify Key Pathogenic Differences Between Celiac Disease & Gluten Sensitivity

Thursday, March 10, 2011

http://somvweb.som.u...tes/?a=1474&z=5

Dr. Alessio Fasano directs the Center for Celiac Rsearch.

"Scientists at the University of Maryland School of Medicine

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Hi!

I had my genetic test done trough one hospital 2-3 times. The result - negative for DQ2 and DQ8 each time. The hospital sent my blood to Quest Diagnostic. After I saw a doctor in the Celiac center at Columbia University hospital in New York, she ordered genetic test trough another lab - Kimball Genetics. They did all alleles. I was positive for one half of DQ2. They wrote in the statement that I do have a small chance of developing the celiac disease, but the chance is there.

Maybe this can be happening to you to. Maybe your lab don't recognizing the same thing.

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Thanks guys. You all have really encouraged me. I went over to my parents and sorta melted a little to them and they looked at me like I was crazy and wanted to know why I was hinging everything on one little test. My health is night and day different since Feb 1, 2011. That really is fast for someone to go from feeling like they're dying to actually wanting to exercise (yeah, freaky).

With their encouragement I've come to the realization that I am the only one that is going to be the most expert on all things me. I don't need the validation of an opinion, test etc to tell that dairy, soy and gluten make me feel unbelievably horrible. I can be responsible and just direct my health. It's working so far!

As far as the test results. All it shows is that I was negative for both DQ2/DQ8. It doesn't expound further than that, sadly.

Ok. :) I'll stop being psycho now. Feeling sick from accidental soy ingestion really sorta messed with perspective a little (note to self: don't go grocery shopping in a hurry...you might grab vegetable oil instead of canola without realizing that vegetable = soy).

I am a firmly diagnosed celiac who doesn't have either of those 2 genes. I am a double DQ9, while those genes are considered RA related here they are recognized as celiac associated in the Middle and Far East. My DD had both positive blood and biopsy but after healing for a few years got retested and they did her gene panels. Because she was not DQ2 or DQ8 she was told that her positive blood test and biopsy were wrong and all her symptoms were 'stress' related.

You have wise parents and I am glad you are going to listen to your body. Just stay gluten free and heal. By the way I also react badly to soy and I am glad you were able to figure that out fairly quickly. Fortunately I am able to tolerate soy lecithin as it is in a lot of stuff but react to soy protein, flour and oil.

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I actually have just gotten back from seeing my specialist. I went to see him because I'm still feeling pretty crappy despite following a strict gluten free diet.

He ran a battery of tests last time including one to check which Coeliac gene I have. He has just told me that I don't have either of them. He was very surprised by this and a little flummoxed.

I was diagnosed 14 months ago by blood test and had it confirmed by a biopsy. Since then I've had two more blood tests and another biopsy and they've still been strongly positive for coeliac disease.

So he's running more blood tests to see what's going on. He says I probably do have coeliac disease and that I'm one of the rare people that don't have the classic genes. If the results of these new blood tests aren't trending down towards normal he said he'd have to check for other possibilities. THat's when he started to ask about a famil history of Crohn's disease.

Apparently I also have somthing called ANA (anti nuclear antibodies) I'm not sure what that is about.

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Apparently I also have somthing called ANA (anti nuclear antibodies) I'm not sure what that is about.

hey- an elevated ANA just indicates that you probably have some autoimmune action going on in your body. it doesnt necessarily pinpoint to any one- altho what the result looks like may be associated with certain diseases.

i had an elevated "speckled" ANA at 15 years old- and a "butterfly rash" on my face- so for 2 years they tested me for Lupus, and Sjorgens. but that's it... arent doctors just hilariously in a box :huh: ANNOYING. now im 38-> and i know that my Autoimmune Diseases are: Celiac, Hashimoto's & Grave's.

it really pisses me off that i could have been dx with these years, even decades ago... im really frustrated with our med. system.

sorry for the rant

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You are so lucky to have such wonderful and supportive parents!!

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I actually have just gotten back from seeing my specialist. I went to see him because I'm still feeling pretty crappy despite following a strict gluten free diet.

He ran a battery of tests last time including one to check which Coeliac gene I have. He has just told me that I don't have either of them. He was very surprised by this and a little flummoxed.

I was diagnosed 14 months ago by blood test and had it confirmed by a biopsy. Since then I've had two more blood tests and another biopsy and they've still been strongly positive for coeliac disease.

So he's running more blood tests to see what's going on. He says I probably do have coeliac disease and that I'm one of the rare people that don't have the classic genes. If the results of these new blood tests aren't trending down towards normal he said he'd have to check for other possibilities. THat's when he started to ask about a famil history of Crohn's disease.

Apparently I also have somthing called ANA (anti nuclear antibodies) I'm not sure what that is about.

Welcome to the 'oddball gene' club, I am a member of it myself. I do hope they are able to figure out what else is going on with you and that you are feeling better soon.

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Welcome to the 'oddball gene' club, I am a member of it myself. I do hope they are able to figure out what else is going on with you and that you are feeling better soon.

Yeah, it'd be nice not be feeling crap all the time. But it's only been 14 months since I went gluten free so that may not have been quite enough time to heal properly.

The gene thing has thrown me a little bit. I'm really glad now that I have gone through the complete testing process and that I have such a firm diagnosis. If I was self-diagnosed then the negative gene test would have had me wondering if I really need to be on a gluten free diet. Especially since I'm still not feeling great.

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Yeah, it'd be nice not be feeling crap all the time. But it's only been 14 months since I went gluten free so that may not have been quite enough time to heal properly.

The gene thing has thrown me a little bit. I'm really glad now that I have gone through the complete testing process and that I have such a firm diagnosis. If I was self-diagnosed then the negative gene test would have had me wondering if I really need to be on a gluten free diet. Especially since I'm still not feeling great.

Have you eliminated soy? I had a lot of issues for the first couple of years because I didn't realize I needed to eliminate that also and a lot of the gluten free stuff I was buying had soy.

I am not a big fan of using gene testing to rule celiac in or out. Until they start routinely gene testing everyone who is diagnosed IMHO it can be more of a problem than a benefit. Perhaps that is because of my families experience and my childs going off the diet because of gene testing that told her she could never be celiac. That is what actually got me to test mine. We still have so much to learn about celiac but at least more of us are being diagnosed now than even 10 years ago.

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hey- an elevated ANA just indicates that you probably have some autoimmune action going on in your body. it doesnt necessarily pinpoint to any one- altho what the result looks like may be associated with certain diseases.

i had an elevated "speckled" ANA at 15 years old- and a "butterfly rash" on my face- so for 2 years they tested me for Lupus, and Sjorgens. but that's it... arent doctors just hilariously in a box :huh: ANNOYING. now im 38-> and i know that my Autoimmune Diseases are: Celiac, Hashimoto's & Grave's.

it really pisses me off that i could have been dx with these years, even decades ago... im really frustrated with our med. system.

sorry for the rant

Hey cassP... curious about your butterfly rash. What did it look like and did you find a reason for it? I had that happen to me at about... hmmm age 30-32? It was the dead of winter... hadn't been in the sun, but everybody said ... how did you get sunburned? I didn't really thing to much of it other than... I thought it was wierd. Just curious what causes something like that. :)

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Hey cassP... curious about your butterfly rash. What did it look like and did you find a reason for it? I had that happen to me at about... hmmm age 30-32? It was the dead of winter... hadn't been in the sun, but everybody said ... how did you get sunburned? I didn't really thing to much of it other than... I thought it was wierd. Just curious what causes something like that. :)

i had it in my teens, and thruout my 20s. it just looked like i had a sunburn from cheek across the nose to the other cheek. my GP noticed it when i was 14? and she told my mom that it looked like the rash those with lupus get- so then i wound up going to a Rheumatologist & Dermatologist for 2 years. just got the same stupid blood tests & biopsies over and over... LOVE it how docs just think in a box and dont try to connect the dots. they just kept waiting for me to magically get more than 2 symptoms... but NOOOOOOOO- should we consider another autoimmune disease???? NOOOO- lets just leave it a mystery <_<

ff to my 20s... and now ive got "morning sickness", bloating, painful gas, post nasal drip... and my mom took me to an alternative doctor. as soon as the nurse saw my face- she said it was food issues. they tested me for candida & sent me on my way with probiotics & instructions to eat a "cave man diet". i never did.

then in 1998/1999-> i went on Atkins and then morphed into The Bloodtype Diet. i didnt know anything about Gluten or Gluten intolerance- never heard of it- but except for soy sauce, and maybe a cheat day every month- i was 100% off Wheat, grains, and sugar. that's when the rash went away.

thruought the last 10 years- (before going gluten free)- i went on & off my diet. i got pretty heavy into the "wheat cheating" that i DID start getting malabsorption.. but the rash never came back.

_________________________________

my teenage sister started getting the beet red cheeks 2 years ago.. she's now gluten free and i havent seen her red cheeks since.

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i had it in my teens, and thruout my 20s. it just looked like i had a sunburn from cheek across the nose to the other cheek. my GP noticed it when i was 14? and she told my mom that it looked like the rash those with lupus get- so then i wound up going to a Rheumatologist & Dermatologist for 2 years. just got the same stupid blood tests & biopsies over and over... LOVE it how docs just think in a box and dont try to connect the dots. they just kept waiting for me to magically get more than 2 symptoms... but NOOOOOOOO- should we consider another autoimmune disease???? NOOOO- lets just leave it a mystery <_<

ff to my 20s... and now ive got "morning sickness", bloating, painful gas, post nasal drip... and my mom took me to an alternative doctor. as soon as the nurse saw my face- she said it was food issues. they tested me for candida & sent me on my way with probiotics & instructions to eat a "cave man diet". i never did.

then in 1998/1999-> i went on Atkins and then morphed into The Bloodtype Diet. i didnt know anything about Gluten or Gluten intolerance- never heard of it- but except for soy sauce, and maybe a cheat day every month- i was 100% off Wheat, grains, and sugar. that's when the rash went away.

thruought the last 10 years- (before going gluten free)- i went on & off my diet. i got pretty heavy into the "wheat cheating" that i DID start getting malabsorption.. but the rash never came back.

_________________________________

my teenage sister started getting the beet red cheeks 2 years ago.. she's now gluten free and i havent seen her red cheeks since.

Wow, that's really interesting, Cass... I never related the two either!! My sister will be interested to hear this, as well. Thanks so much for sharing! :)

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    • Yes you are correct. Interestingly my genes in the US are thought to be more associated with RA. Which is something they thought I had prediagnosis. In the Middle and far East they are more likely to be associated with celiac and they are rare genes in Caucasians which I am according to my parents known heritage. I always caution folks not to take the gene tests as absolute proof they can't have celiac because I had one child who had positive blood and biopsy, did well on the diet, then got genes tested in young adulthood and was told they could never be celiac. Of course that resulted in her abandoning the diet. I worry but hope someday doctors will realise we still have a lot to learn about the genetics of this disease. PS While I still have some deformity in my hands my joint pain resolved after a few months on the diet.
    • It seems like you really need a concrete or near concrete answer so I would say maybe you ought to get the gene testing. Then you can decide on the gluten challenge.   Thanks! I am convinced our dogs are there waiting for us. Meanwhile they are playing, running, laughing, barking & chasing. I have another favorite quote dealing with dogs: "If a dog will not come to you after having looked you in the face, you should go home & examine your conscience."  ~~~ Woodrow Wilson ~~~
    • I can't help thinking that all of this would be so much easier if the doctor I went to 10 years ago would have done testing for celiac, rather than tell me I probably should avoid gluten. He was looking to sell allergy shots and hormone treatment, he had nothing to gain from me being diagnosed celiac. I've been messing around ever since, sort-of-most-of the time being gluten free but never being strict about it. I really feel like three months of eating gluten would do my body a lot of permanent damage. I've got elevated liver enzymes for the third time since 2008 and no cause can be found which might be good, I guess. I wonder if it would be reasonable to do the HLA testing first, to decide if I really need to do the gluten challenge. If the biopsy is negative, that is. Squirmingitch, love your tag line about dogs in heaven. We lost the best dog ever last December. I sure hope all my dogs are there waiting for me!
    • Most (90%-95%) patients with celiac disease have 1 or 2 copies of HLA-DQ2 haplotype (see below), while the remainder have HLA-DQ8 haplotype. Rare exceptions to these associations have been occasionally seen. In 1 study of celiac disease, only 0.7% of patients with celiac disease lacked the HLA alleles mentioned above. Results are reported as permissive, nonpermissive, or equivocal gene pairs. From: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/88906  
    • This is not quite as cut & dried as it sounds. Although rare, there are diagnosed celiacs who do not have either of those genes. Ravenwoodglass, who posted above, is one of those people. I think she has double DQ9 genes? Am I right Raven?  My point is, that getting the gene testing is not an absolute determination either way.
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