Negative Dna Test... Now What Do I Do?

[splash]

Three months ago I tried out a gluten free diet and it resolved a lifetime of issues. My GP took a blood sample and I didn't have the celiac antibodies, but I knew the test might not be accurate and he said he still thought I was celiac.

Still, the diet became more difficult and I am now super sensitive to smaller traces of gluten. I have heart palpitations in reaction to gluten that are more pronounced now, and I get more severe confusion, weakness, and achiness in addition to GI problems just with a little bit of gluten. But a few days without gluten and I feel great.

I went to a GI doctor to get confirmation that I have celiac disease, but I didn't think I needed it. I guess I just wanted to know if it really was a lifetime sentence that I could never again touch gluten. If I am going to be a spectacle in restaurants and make my friends turn their kitchens upside down to avoid crumbs, I just wanted some evidence to respond to "it's not going to kill you."

But my DNA test was negative. My GI doctor says it's a new kind of test, but he couldn't explain it and told me that he was still giving me a clinical celiac disease diagnosis. But what am I supposed to do with this information? The DNA test was supposed to tell me if I could rule out celiac - so it was negative, can't I rule it out?! Can I go back to having normal soy sauce and barbecue sauce without looking at labels and just deal with some symptoms every now and then? I reeealy want to have stuffing at Thanksgiving :-) What does this mean?! I am totally confused and upset.

[ravenwoodglass]

I am glad your doctor had enough sense to tell you that even though you don't have one of the two recognized celiac genes he would still consider you to be celiac. Not all the genes for celiac disease have been found and you may carry a gene that is a celiac gene in another country but not here. I am an example of that. Here I am considered gluten intolerant, which needs the diet as much as 'true' gene recognized celiac, but in Japan the gene I carry is a major celiac gene. The truest test to tell whether you need the diet is what you have done. You eliminated gluten and felt better, now even a little bit is causing you symptoms. That really is a good thing because your body clearly recognizes gluten as a poison and is trying desperately to tell you to stay away from it. I know this is not the answer you wanted to hear but you really do need to consider yourself as your GI does and stay away from gluten.

[hathor]

There are some diagnosed celiacs even in this country without the so-called "celiac genes." You can also have just as serious nonceliac gluten intolerance with different genes. Either way, you have to avoid gluten.

(What genes do you have BTW?)

If you want/need a confirming test, try Enterolab. Their tests are supposed to be more sensitive and to pick up damaging antibodies before their level has had a time to build up in your blood. Also, did you have the blood testing after going gluten-free? If so, the test wouldn't be valid. Plus it has a fairly significant rate of false negatives.

It sounds like you have a good doctor. He isn't hung up on the results of the blood test or the genes. He is looking at your response to diet, which is the best test of all. Whether you are officially "celiac" in someone's mind, though, isn't the important thing. If you get sick from eating gluten, you shouldn't eat it.

I don't have a "celiac gene." But I get sick if I eat gluten. I feel better when I don't. I have positive Enterolab tests (to everything ) I have the gene that has been linked in some research to neurological problems due to gluten. This is enough for me to try to avoid every little last bit of gluten, whether or not someone calls me celiac or not.

[Ursa Major]

It is too bad that here in America they are still so hung up on those two 'official' celiac disease genes! I am planning on getting the gene test done with Enterolab as soon as I have the money (daughter is being tested now, more important), just to see which genes I have. They test for a lot more genes than other labs.

And you can have stuffing with your turkey! For Thanksgiving (it is in October here in Canada) we cooked everything gluten-free, including a gluten-free stuffing. Buy a loaf of gluten-free bread and make stuffing out of that. Everybody loved it, and I, who is the only gluten-free person here, hardly got any it was that delicious!

[splash]

Thanks everyone for your helpful answers. I admit I was a bit excited that maybe I could have a slice of pizza again if I really wanted one, but the funny thing is that I now see pastries and breads and they look like poison to me. I'm not sure if I'll have the stomach ;-) to dare eat pizza again!

But what I'd like to know is whether gluten just gives me brain fog but doesn't do permanent damage... I mean, I'm inclined to think that I can relax about the microscopic amounts now and just avoid having actual bread and pastries. Is that reasonable? My biggest concern is that if, one day, I were to get pregnant, would that lax attitude be dangerous to my child?

I had my DNA sample taken from a blood sample. Here's what my test results say (conducted by Quest Diagnostics):

HLA Typing for Celiac Disease - Results

HLA-DQB1 - 05(DQ5) 06(DQ6)

HLA-DQ2 - Negative

HLA-DQ8 - Negative

It also says that 97% of celiac patients carry either HLA-DQ2 or HLA-DQ8 or both. What is the other 3%??

I am tempted to have ONE bite of something, just to see what happens. But now there's nothing with gluten in my kitchen! :-)

[nutralady2001]

Go with your gut ( lol) instinct. I've known for the last 12 months I've been gluten intolerant(did the challenge) but was always "Am I or aren't I" celiac some days it was just too hard I'd see people roll their eyes if I said I was gluten-intolerant . Bits of gluten snuck in here and there, eg I was taking iron tablets for my deficiency not realizing they had gluten in them....derr ...didn't even think to check and I was feeling so cr*ppy anyway

I had to have an endoscopy/colonoscopy because I was severely iron deficient so had a bowel screening done and there was evidence of blood in both lower and upper gastro-intestinal tracts in all 3 samples.

Guess what ..........the gastro did biopsies and....tah-dah!..I have Celiac Disease.I am nearly 60 and have had what was diagnosed as IBS since I was 12, diagnosed with eczema when I was 15 but now I know more ( thank God for the internet) and have seen photos I believe what I had was dermatitis herpetiformis

I live in Australia where our labelling laws are just about the strictest in the world as far as listing ingredients/ allergens on processed products and we have an absolute paradise of gluten-free products ( yes even pizza dough lol)

I have just discovered a quarterly FREE magazine with pages and pages of gluten-free recipes and products , of course it is put out by Orgrans so they are in effect advertising their products but goodness me what a range they have

It takes a bit of getting used to but once you know what you are doing it gets so much easier.I lived on fresh fruit to begin with lol, me who barely ever ate fruit....and I still eat it

I love the gluten-free pasta, was a bit tricky to cook at first and it would go mushy lol but am getting better .

I also have Hashimoto's Disease which is auto-immune ( killed off my thyoid gland) AI disease goes back at least 5 generations in my family( mianly Type 1 diabetes and rheumatoid arthritis) 2 of my 3 children have AI disease ( Type 1 diabetes and lichen planus a skin disease very similar to psoriasis) so that is something to think about is there AI disease in your family?.................good luck!!!

[hathor]

From my research (which means "correct me, anybody, if I'm reading this technical stuff wrong"), DQ5 & DQ6 are two versions of what used to be lumped in as part of DQ1. Indeed, I see now that my genes are the same as yours and I was told I was double DQ1.

If you search you will see that gluten-sensitive DQ1 folks react to small amounts of gluten (at least, those of us who post do ...) and that DQ1 is also linked to neurological damage from gluten (as are DQ2 and DQ8).

I wouldn't just go by symptoms. You cannot tell whether lasting damage is being done each time you consume gluten. Do you want to wake up one day with a small intestine incapable of absorbing nutrients, a neurological disorder, an autoimmune disease, osteoporosis, or cancer?

If your body reacts so badly to eating something, it is telling you something.

You had a dramatic improvement when you eliminated gluten. You feel awful when you have a tiny speck of it now. Your genes are consistent with those of a number of us on this board. Maybe I don't have the "celiac genes" accepted in this country, but I had all the antibodies Enterolabs tests for, plus malabsorption. My genes, the same as yours, didn't rule out adverse consequences for gluten consumption.

Not trying to be harsh, but I want to impress on you the potential seriousness of ignoring what you know about your gluten sensitivity. The potential consequences aren't worth the momentary pleasure of what glutened item you may eat.

If you feel you need a positive test to keep you to the straight-and-narrow (I did), as I said before, you could do the Enterolab testing. Perhaps if you see the documented antibodies and, perhaps, a high malabsorption score, it will be easier to commit yourself to this diet.

[Fiddle-Faddle]

There are people who have posted on this board that they had biopsy-diagnosed celiac, which is incontrovertable evidence that they do, indeed, have celiac. However, they also had negative gene tests.

This means that the gene tests can NOT rule out celiac. Period. Having the so-called celiac genes means that you are more likely to develop celiac than a person without those genes--but it's no guarantee either way.

your dietary response is a far more accurate diagnosis.

If your body is screaming at you that gluten is poison to it, why ask what to do now? Isn't it obvious?

[lonewolf]

Going gluten-free resolved pretty much all my health issues. I was SURE it was Celiac Disease. My GP was sure too and wanted to run the gene test to "confirm", since I wasn't about to eat gluten again to be tested. I came back negative for DQ2 and DQ8 and wasn't told what my genes were. I was really confused, because I'd had such a dramatic recovery. So I can't "officially" call myself Celiac, but my own common sense tells me that I need to be strictly gluten-free for life.

My son was having symptoms, so we had him tested through Enterolab and did the gene test too. He came back with double DQ7, which means I have at least one copy of it. Interestingly enough, research is starting to show that DQ7 may very well be a celiac gene too.

Bottom line - if gluten makes you sick, stay away from it. Don't fool yourself into thinking that the medical community has all the answers. If you get sick from a small amount, your body is reacting in ways that you might not even be aware of.

[Fiddle-Faddle]

So I can't "officially" call myself Celiac, but my own common sense tells me that I need to be strictly gluten-free for life.

I know that there are many causes of gluten sensitivity/celiac. That said, I don't think that celiac can possibly have as narrow a scope as many think. In other words, I don't think that celiac is ONLY diagnosable in people with certain genes, or in people who had a positive biopsy.

We already know that the gene thing is incomplete--enough people have biopsy-diagnosed celiac to prove that that definition is incomplete. And enough people have had misread or mismanaged biopsies and found through later evidence (biopsy. bloodwork, or genetic testing) that they DO have celiac to prove that the biopsy is not an accurate enough diagnostic standard. And DH is considered a firm diagnosis of celiac, even without any villi damage.

If we are stuck with this archaic idea of celiac only being definable by intestinal biopsy, than at least we should consider that gluten intolerance is a "pre-celiac" condition that is likely to evolve into full-blown celiac without avoidance of gluten.

If it walks like a duck, quacks like a duck, poops like a duck....

[nora-n]

Yes, you are double DQ1 (DQ5 and 6 are subgroups of 1) and just type in hadjivassiliou in pubmed.com or google and you find lots of articles about DQ1 and measurable neurological damage by gluten.

I think I must be DQ1 as well, as I react very neurologically to gluten.

There are even forums for neurological symptoms of gluten, and guess what , there are DQ1 there.

One put up a website Open Original Shared Link where there is more info.

nora

[hathor]

If it walks like a duck, quacks like a duck, poops like a duck....

OK, I've had my laugh for the day. This is so good I'll probably steal your joke

[splash]

nora_n - I read the article "Gluten sensitivity as a neurological illness" by the author you mentioned, Hadjivassiliou, and I have to thank you enormously for the reference. I'm surprised, frankly, that my GI doctor did not recognize the positive DQ1 typing that my tests show as a positive result for my diagnosis - and am very relieved to know that my neurological symptoms weren't just in my head!!!

I have to admit, I'm bummed that this really does mean no more beer for me - ever (! ... is there any chance the DQ1 gene is only sensitive to wheat, not barley?) But the fact that I haven't once been tempted by the amazing pastries I face every morning at my coffee shop says something. I got my test back almost a week ago and the wildest I've been willing to go is to have a little blue cheese on my salad. Whoaaa. And sure enough, I have been paying for it in the bathroom for two days now.

Which leads me to my next question: if DQ2 and DQ8 are supposedly the gastro celiac genes, and DQ1 is just a neuro gluten gene, how do I have ALL of the symptoms if I don't have DQ2 or DQ8? It seems like I can react differently each time, at random. A few weeks ago I had some CC'ed soup from Whole Foods and had immediate runs followed by serious confusion the next day. I had to walk out of a business meeting. This time, with the blue cheese, no brain fog (just maybe a bad mood). And why are we not calling the DQ1 sensitivity "celiac disease"? Is there no villi damage with sensitivity? I'm positive that with the weird vitamin deficiencies and GI issues I've dealt with my whole life, there must be some serious villi injury going on with me. (Don't ask me to get a biopsy, I'm having no part of it.)

I'm probably splitting hairs at this point. The DQ1 info is much needed confirmation, and clearly the research needs to continue on additional genes. Maybe I should show some of these articles to my doctor!

[Fiddle-Faddle]

I have to admit, I'm bummed that this really does mean no more beer for me - ever

No, it doesn't!! Redbridge beer is gluten-free--it's brewed from sorghum, and people tell me it's really good. (Don't ask me, though,--I've always hated beer )

[jmfrisch]

No, it doesn't!! Redbridge beer is gluten-free--it's brewed from sorghum, and people tell me it's really good. (Don't ask me, though,--I've always hated beer )

There is beer here in Japan made 100% from soy beans. Officially it isn't beer to avoid high beer taxes that are based on the malt content. Going gluten free isn't all bad, you get to drink cheap beer!

There are actually about 5 different brands that make gluten free beer now. Maybe I should export it to you guys overseas!

[Ginsou]

I have to admit, I'm bummed that this really does mean no more beer for me - ever (! ... is there any chance the DQ1 gene is only sensitive to wheat, not barley?)

Guess you haven't noticed the www.redbridgebeer.com ads on this website. I purchase it at Walmart and liquor stores, and several supermarkets. I've never been much of a beer drinker, it always bloated me. I'm now retired, travel to Mexico and the southwest, and discovered Corona with a lime in it was just the thing to have with tacos or pizza.

Since being recently diagnosed celiac, nothing hits the spot like corn tacos and Redbridge beer with a lime in it.

[nora-n]

Good you found the Hadjivassiliou references useful. I doubt your gastro doctor has bothered to read the articles but I have read a nrwegian article in the doctor's bi-monthly paper about neurological symptoms from gluten, and they briefly mentioned hasjivassilout but they try to explain the neuro symptoms with vitamin deficiencies....when in fact ther are antibodies found in the central nervous system or whatever, it is autoimmune and not vitamins....

There are several other DQ1 at the braintalk and the neurotalk forums, and they have gastro symptoms too. I have too. we seem to be even more sensitive to gluten than the DQ2.

I live in Norway and here we have the codex wheat starch in a lot of gluten-free food, but I cannot even have that. they say at the above forums that DQ1 seem to be more sensitive than the usual celiacs.

Open Original Shared Link

Open Original Shared Link

nora

[num1habsfan]

I wouldn't rust any tests on Celiac. You're lucky to have a doctor who believes you that if nothing shows up on the tests you still have it. I got sent on the diet before I was able to get tested even otherwise it likely would have killed me from dropping the lbs so fast. If you feel better on the diet and are super sensative too, don't change your mind. Stick to it. we are all the only ones who know our body, so listen to what your guts are saying!

~ Lisa ~

[saravan1]

I hear Budweiser makes a gluten-free beer that is readily available . I don't drink alcohol, but my daughter is in college and she drinks enough for both of us. She's being tested for celiac and she was pretty bummed, but finding out about Bud's gluten-free beer seemed to help.

[splash]

I hope everyone had a great gluten-free Thanksgiving. I made it through a meal with 13 non-celiacs and had two full delicious plates with nothing that made me sick! Hooray for good family and friends.

I'm accepting it all much better after all this good information and - probably even more key - after such overwhelming support from loved ones. I don't regret seeking the testing, all part of the path to acceptance even though it was harder to understand than I expected. It's a very psychological thing to deal with this diagnosis (and it doesn't help that the gluten produces mood swings on top of that!) so time is probably the best help. I feel much more certain about myself and my health than I did 4 months ago - and certainly more than ever in my life.

So if there's one down side, I'm sorry to say it, but gluten-free beer will never live up to the real thing. What I'd give to have a sampler of good beers one more time: Guinness, Heifewiezen (with slice of orange), maybe some Rogue Dead Guy, and finish up with some good old Red Hood IPA! Alas, I guess I'll take health and happiness instead! :-)

Happy holidays, everyone.