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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 Celiac.com's FREE weekly eNewsletter   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

Gene Testing?

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I've suspected my daughter and myself both have celiacs or at least sensitivity to wheat. My GP ordered a gene test for myself and it apparently came back negative.

I'm a little confused if gene testing is the same as antibody testing? Also, is a gene test impacted by being gluten free at the time of testing?

I have many symptoms of celiacs, as does my daughter, and we've found that these symptoms abate with a strict gluten free diet. I'm unsure if we should try to find out if we do indeed have it again or if the gene test is a failsafe method of diagnosis, regardless of gluten in the diet.

Thank you kindly

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Genetic testing is not the same as antibody testing.

The gene test looks for markers that are associated with celiac disease. Two are typically checked for--DQ2 and DQ8--although there is growing evidence that others may be associated. Many people carry the genes without ever developing celiac disease. Your genes are your genes and your diet will not affect testing them.

Doctors in Europe are increasingly recognizing that there are cases of celiac disease, confirmed by positive biopsy, in patients who do not have either DQ2 or DQ8.

Regardless, if your symptoms abate on gluten-free diet, you know what you need to do to be well.

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Thank you for your response. I was just reading about the NCGI and if not Celiacs, my daughter and I have that, for sure. I have so many symptoms of celiacs starting from a young child and during a gluten challenge I ended up in hospital with such severe pain, twice.

I am wondering, does celiac do anything to your bowel? I was having horrible symptoms when going to the toilet and the GP ordered an endoscopy (years ago) to find a possible cause. Nothing was found other than a lot fo pain during it - which they blamed Endometriosis on the outside of the bowel.

What is the consensus here about traces of gluten for somebody with NCGI? Can a Celiac consume something containing a wheat derivative that claims to be gluten free?

Thanks again. I might ask the GP what gene he tested for. I'm in Australia so I'd imagine it is a standard test most Aussie Drs do.

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Sorry to hear your genetic test was not definative. It sounds like your diet trial was overwhelmingly positive, though. Antibody tests would false negative, if you are not eating gluten. What do you need to prove to yourself and others that a gluten free diet is right for you?

Well, I wish you well in your discoveries.


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Thank you for your comments. I don't need to prove anything about this way of eating but I find it difficult to be so demanding about my daughter's diet without being able to say definitively that she is Celiac. I have other children with allergies and it's easier to discuss with the full knowledge there but in this case, I worry that people just perceive me as being over the top given the other child's extreme allergies.

My daughter has been suffering ulcers in her mouth and headaches again so I was starting to question how good we've been with keeping gluten out of her diet versus just assuming it's viral and not related.

Also, my youngest daughter is now 3 and has just started getting dark bags under her eyes and on/off again tummy aches and runs. She's not shown other signs of allergy per se, other than a vague hives reaction to something we can't yet pin-point. She does have mild asthma though so it's likely she has something wrong in that department. I'm just wondering if we should be keeping her gluten free also. She only eats it infrequently, which is why I was wondering if it was the cause of her troubles.

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I just wanted to update and it turns out both our bloods were for antibodies so therefore are virtually useless, given we were gluten free.

The GP offered to do me another test, with a challenge and even the gene testing if I desired.  He explained exactly what you all did, about how that's not really a guarantee either way and that ultimately it could still turn out to be gluten intolerance which requires the same abstinence.  

He's got my history of bowel and autoimmune etc, troubles and he feels that quite strongly I either have Celiac Disease or the Gluten intolerances and that the testing is really not required if I find a gluten free diet helps.  I felt so reassured by his comments that he's quite up to date with a lot in the Celiac world.

I spoke about the other children and he believes we should just maintain our gluten free status.  I think our third might need to be strictly gluten free if she keeps displaying symptoms although it may prove more difficult as she's quite the food monster.  :)  

Thank you again.  I feel quite resolved about things now and I'm just going to explain to people that we are Gluten Intolerant/suspected Celiacs.  I have found it difficult to justify why we make things difficult with our diet without a distinct diagnosis and now I don't, so thank you all for that.

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    • Pain wise a glutening celiac gets me more central gut pain and much worse with sharpness, urge to vomit, gurgles etc. UC is more along the the outside edges of your abdomen from the sides, lower area around the belt line, and upper area right under the rib cage, and is more of a boat and pleasure pain like your intestines are huge feeling.  UC triggers alot more gas, and makes you want to lie down I get the urge to massage and press on the pressure areas as it seems to help.
      Timing wise Celiac glutening I notice within 20-60mins and main vomiting starts in 1-3hours after eating it. UC flare you get it like 4-18hours or later depending on transit time of your food. A glutening will normally result in both a celiac reaction and a later UC reaction. For me a gluten CC or consumption issue also causes neurological symptoms, this is not true for some people but for me I also have a gluten ataxia, so the anxiety, panic, fog, mind looping, numb hands, loss of coordination or straight up motor loss is definite sign for me. Others will have to keep track with a food diary to nail down there own as every person can have a slightly different reaction.

      I also find with UC I do not directly vomit, Sometimes with UC it can trigger constipation and if not remedied in 12-24 hours leads to m system backing up and vomiting. Celiac can also cause me constipation but there is a slight difference in where it seems to get stuck at first. Hard to explain but you can sort of feel it. Also I find a gluten celiac response will result in a week or more of constipation issues. Starting mid section then moving to the outside gut area and  but some people do not get these and get D instead. So this is not very reliable.

      UC flare ups for me with my damage also always have bloody stools, worse flare ups its not just streaks but clots. Red and Dark red show it is in the large intestines. If you get tar like black  and red it is either a sign it is way back in the large intestine or in the stomach or small intestine. This makes my Anemia SOO much worse. Imagine how you feel with the loss of blood coupled with inability to efficiently absorb nutrients like iron and magnesium

      Thing to recall is UC is mostly the large intestine while celiac is mostly the small, so symptoms and trying to get the feeling of where the problem is can help.  Also if you get a glutening expect to have the UC flare up right after the celiac flare up.

      NOTE it is hard for me to say still, on the exact details and clarity, it has been since june of last year that I had a major gluten consumption issue. UC I get more regular but without the direct comparison in a while my memory is a bit iffy. Just trying to recall those exact pains and feelings from that last time. Also UC seems to wax and wane in and out while almost always being present for months in the background you just feel a bit off in the gut. SO many triggers, I felt that for years I swear til I went to this keto diet and dropped all fruit, sugar, carbs, and grains. Could have been the anemia, but I think it was more of a combination of the inflammation, bleeding, gas, and just being uncomfortable.
    • Hi!  I wasn’t sure where to post this inquiry so I’m sorry if it is in the wrong place!  My blood work was negative for celiac although biopsy was suspicious.  I have severe joint pain and GI issues so have decided to eliminate all gluten to see if that helps. I hear I may need to supplement my diet with vitamins to make up for what I’m missing, but I don’t know what vitamins they are!  Can anyone help? Thanks, Sarah
    • Hello everyone Thank you so much for all your contributions and tips, I'm sorry for my absence but I've had a big project deadline to complete. Over all, I think things are on the mend for me too.  I was quite cynical at the doctors' approach at first. I'd have much rather had a scope to find out what was happening, instead of being prescribed three months of omemprazole or zantac to see if it helped.  Unfortunately the gen on the zantac contraindictaions list stipulated that zantac should only be prescribed if your doctor is sure what is wrong with you, as it might otherwise be covering up cancer!  Those aren't the things a hypochondriac wants to read!  Anyway,  during this that time I've taken one months of omeprazole (20mg) and as that gave me D I changed to two months of zantac (most days only 75mg a day, but doubling the dose on odd occasions when the burn seemed to come back).  During much of this period I've tried to keep my diet low in fat, spicy food, drinking very little caffeine, drinking strong camomile and slipper elm, and I think a key help has not eating for a 12 hour stretch overnight because I think that really helps the stomach heal.  I hope my system is finally recovering and hope to come off the zantac towards the end of this month.  It is hard to phase these things out slowly when you are already on the minimum dose, but all the tips about marshmallow, licorice and slippery elm etc will no doubt come very helpful then!   I have come to the conclusion that this is a new weakness in my system and I'll have to be very careful to avoid gastritis in the future, by no longer taking asprin (unless the doctor ever tells me I have to), not over doing fat, greasy food, etc.  The last time I drank some sparkling wine or fizzy drinks was awful, so I shall avoid them too. Throughout this time probiotics have helped me with the C, upper left quadrant pain  and wind that the zantac seems to have produced! And of course all the help from you guys. Will keep you posted Whitepaw on life post-zantac!
    • Ennis, can you tell us how to tell the difference between a UC flare and a glutening? It must be confusing for folks diagnosed with both to know at first which it is that is happening.
    • i ended up with dairy intolerance over 10 years ago, and celiac over 4 years ago, then this year got ulcerative colitis diagnosis.

      Dairy issues are caused by the fact the enzymes to digest it are produced by the tips of your villi, these are damaged first and most by the disease and you end up with dairy intolerance. Some people can add it back after a few years of healing. Other allergies and intolerance issues will also develop the longer your on gluten.....it will really just shorten the list more, as damage ramps up, digestive issues arise, and your body starts confusing other foods as a culprit and developing allergies.

      Your UC complicates things and is honestly going to make you much madder then the Celiac as per its flare ups. UC common triggers are gluten, soy, dairy, and in some cases like mine it is triggered by carbs and sugars like glucose and fructose.....yeah I had to go grain free and change to a nut, seed, leafy low carb veggies and egg white diet.
      Since you can not have nuts but do not mention meats I can say your lucky. I developed a issue where I can not digest meats due to my damage. I might suggest you look into a keto/paleo diet. Where you eat meats, eggs, leafy greens. a higher fat/protein diet.

      Now after 8 months on this diet I am seeing even more improvement and had have several issues resolve and am putting on weight.
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