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Genetic Test Negative

jknnej

By jknnej
in Coping with Celiac Disease

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jknnej Collaborator
jknnej
Posted

Ok, I have been gluten-free for 18 months. My dr said 18 months ago that I had a 50% chance of having Celiac. Only one of 3 blood tests came back positive and it wasn't the important one that they really use to dx people. Biopsy was fine, no signs of Celiac. I have been gluten-free anyway.

Six weeks ago I had a genetic test done and yesterday I got results. Negative. I asked the nurse and she said they did an entire genetic panel and it was all negative. She and the doctor say there is NO way I could have Celiac.

Sooo, what I need help with is this: if I don't have Celiac what other issues could I have with wheat? Could I simply have an allergy? or gluten intolerance? And if so, are you damaging your body if you eat wheat?

My dr says I should re-introduce wheat but I am not doing anything until I research it a bit more.

Help! I am so confused. I do feel better without wheat but there are also times when I accidentally ingest gluten and don't get sick at all.

I guess what I want to know is, If I am definitely not Celiac but have some sort of other gluten issue, could I damage my body?

Help!!

jennifer

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Ursa Major Collaborator
Ursa Major
Posted

Jennifer, my understanding is that being gluten-free will help a lot of people feel better that are, like you, not genetically predisposed to celiac disease or not even officially gluten intolerant. You may have some sort of sensitivity to gluten, or a wheat allergy (which you may want to test for).

What symptoms do you have (or had) on gluten? Are you sure you don't react at all to it? My most obvious reactions are delayed by a whole week now!

If you find that you feel better gluten-free, that's the way to go. On the other hand, if you are in doubt, you could try what will happen if you reintroduce gluten. Mind you, problems may creep up on you so slowly, that you may not realize you have a problem for a few months.

I thought I was fine with dairy again, and ate yogourt and ice cream for several weeks, before I realized that slowly but surely my backaches were getting worse, and that I was getting gassy again. So, I eliminated the dairy again, and my back is slowly getting better.

If you do have a problem with wheat, you would be damaging your body in ways other than damaging your villi I believe. Most likely it will be your nervous system that would be affected.

Unfortunately, you are the one who has to figure it out and make the ultimate decision of staying gluten-free or quitting the diet, because nobody else has to live in your body and feel what you feel. I understand how confused you must feel right now, and hope that you will be able to figure it out and make the right decision.

Nantzie Collaborator
Nantzie
Posted

From what I remember, the genetic test that they do through doctors offices only tests for the main genes. (DQ2 and DQ8 I think...) If you can find out what lab they used, we can probably figure out if that's all they test for, of if they test for all the same genes that Enterolab tests for. There are a lot of us here who have DQ1. Read my sig line for more on that.

So if you feel better gluten-free, then you've got some sort of gluten intolerance. It could be an allergy. It could be candida.

You might want to consider doing some testing through Enterolab. That seems to be the only place that is thorough and tests for all the genes.

Nancy

AndreaB Contributor
AndreaB
Posted

I'd have to agree with Nantzie. I used enterolab for my family. I am also allergic to gluten.

CarlaB Enthusiast
CarlaB
Posted

I have two DQ1 genes, too, which predisposes you to be non-celiac gluten intolerant. I am every bit as sensitive to gluten as a celiac and get sick for a week or two if I get even a little bit of gluten, yet, I am not a diagnosed celiac.

I would do more research on what genes you do have. Put them in google and see what comes up. Read some of Dr. Fine's articles, he's a little more well-versed on non-celiac gluten intolerance. Also, remember that about 5% of celiacs don't have the genes for celiac either.

You might be fine going back on gluten, but you might have a valid reason for avoiding it. My 18 year old daughter has at least one gene for gluten sensitivity from me, don't know what she got from hubby. She and I lived together in Indiana after the rest of the family moved until she graduated, so we had a gluten-free apt. She has never had symptoms, but she feels so much better off of it, that she still has not gone back to her old ways of eating. Many just feel better without it.

oceangirl Collaborator
oceangirl
Posted
I have two DQ1 genes, too, which predisposes you to be non-celiac gluten intolerant. I am every bit as sensitive to gluten as a celiac and get sick for a week or two if I get even a little bit of gluten, yet, I am not a diagnosed celiac.

I would do more research on what genes you do have. Put them in google and see what comes up. Read some of Dr. Fine's articles, he's a little more well-versed on non-celiac gluten intolerance. Also, remember that about 5% of celiacs don't have the genes for celiac either.

You might be fine going back on gluten, but you might have a valid reason for avoiding it. My 18 year old daughter has at least one gene for gluten sensitivity from me, don't know what she got from hubby. She and I lived together in Indiana after the rest of the family moved until she graduated, so we had a gluten-free apt. She has never had symptoms, but she feels so much better off of it, that she still has not gone back to her old ways of eating. Many just feel better without it.

I, too, would find out exactly which genes they tested for. I have two DQ1 genes (gluten intolerance) and definitely feel better without it. (gluten) I was very sick, but had a negative biopsy. You are smart to arm yourself with more info. You might want to keep a food log with symptoms on it as you reintroduce wheat, if you do. That might help you "catch" changes that support the need to be off it if they occur. good luck.

lisa

lonewolf Collaborator
lonewolf
Posted

I've also had genetic testing and don't have either of the 2 main celiac genes. But no one can convince me that I don't have serious problems with gluten. I originally did an ELISA test that showed high on gluten, wheat, barley and oats (not rye for some reason) and that is why I went "gluten light" 10 years ago. Like you, there's no way to test for anything else since I've been gluten-free for so long. You could still develop autoimmune problems. I have psoriasis, had arthritis that was determined to be autoimmune and a kidney problem that the doc said was "probably autoimmune" and I have thyroid issues. The arthritis and kidney problem are both in remission, and I KNOW beyond a shadow of a doubt that they are related to gluten intake. So yes, I think you could still damage your body if you don't have the main celiac genes. Listen to your body and stay gluten-free.

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jknnej Collaborator
jknnej
Posted
  • Author

I just called the dr and they are going to mail me my results. The nurse didn't know off the top of her head which genes they tested for.

I have had an Enterolab test, I think.....isn't that when they do the whole food panel? It came back wheat and yeast...is that the test where it rates the allergy from 1 as the lowest to 4 as the highest?

AndreaB Contributor
AndreaB
Posted

Enterolab is a stool test. They test for intolerances to gluten/dairy/soy/egg/yeast. It has nothing to do with allergies. For intolerances they list anything 10 and over as an intolerance. My allergy testing read no reaction to high on a bar graph. Others may list 1-4. That wouldn't have been enterolab.

Guest nini
Guest nini
Posted

I do know that they have not yet mapped all the Celiac genes, just the main ones. That aside, I believe that wheat/gluten is toxic for EVERYONE and everyone would benefit from a gluten free diet. So you may not have Celiac, so what. You feel better off gluten. It could be that they just don't have your particular gene type mapped yet, it could be you are just sensitive to gluten or it could be an allergy. Either way the end result is still the same, you still need to avoid gluten.

I truly believe that if EVERYONE gave up on gluten we would see major improvements in all kinds of health conditions... diabetes, depression/anxiety, obesity, cancer, arthritis, and so many more.

gluten is truly a toxic protein

loraleena Contributor
loraleena
Posted

You can be gluten intolerant without the gene. You don't have to have celiac to be gluten intolerant. Same diet anyway.

kelliac Rookie
kelliac
Posted
I do know that they have not yet mapped all the Celiac genes, just the main ones. That aside, I believe that wheat/gluten is toxic for EVERYONE and everyone would benefit from a gluten free diet. So you may not have Celiac, so what. You feel better off gluten. It could be that they just don't have your particular gene type mapped yet, it could be you are just sensitive to gluten or it could be an allergy. Either way the end result is still the same, you still need to avoid gluten.

I truly believe that if EVERYONE gave up on gluten we would see major improvements in all kinds of health conditions... diabetes, depression/anxiety, obesity, cancer, arthritis, and so many more.

gluten is truly a toxic protein

You are sooooooo right!

bigapplekathleen Contributor
bigapplekathleen
Posted

Hi jennifer,

I was in the same place as you a little over a year ago. When I was first diagnosed as 'celiac', I had some of the really old types of blood tests (that most MDs don't consider valid anymore). I was high on one of them, showing borderline celiac. Based on that, i went on a gluten-free diet. I got horribly sick every time I ingested gluten, yet had other food allergies, so always wondered if perhaps it really wasn't celiac. Finally, Dr Green at Columbia did the genetic tests (CeliaGene) for HLA something-2 and HLA something-8. I was negative on both. He said, however, based on my medical history, that I was one of teh 5% of celiacs who don't carry those two genes. So, I actually decided to try a gluten challenge to just 'see' if I could handle wheat again. I was so sick within three days and just got worse and worse and worse. I passed out twice and got a severe infection. (My immune system was always compromised by gluten.) I had sores all over my mouth, body aches, and gained 15 pounds in 2 weeks. I stopped the gluten challenge before we could do a biopsy; it wasn't worth it. It took me MONTHS to recover from that, and I am just now losing the weight I had gained. Trust me, I have had every test imaginable for other things, and nothing came back. I didn't have bacterical overgrowth or candida or any of the other things that can mimic celiac. However, I am very sensitive to ALL grains.

Here are the things that are helping me to heal now. I got the book BREAKING THE VICIOUS CYCLE and followed the diet very carefully for one month. This takes incredible will-power, but is well worth it. It's the first time I remember having normal stomach sensations and bowel and intestinal habits. I found a naturopathic physician who is helping me narrow down other food intolerances. (MY complete skin testing revealed 21 food allergies and blood tests showed 50+; that was done through my allergist throughout the past 3 years.) I am taking many supplements now to re-establish the good bacteria in the gut and to lessen my tummy issues. I have also read and followed the PALEO DIET for 4-6 months at a time, certainly whenever my stomach acts up.

I would strongly advise against a gluten challenge. Others told me not to do it, and I didn't listen, and paid the price. I was miserable.

And, by the way, some of you may have seen my other post about health insurance. I have recently applied for a new policy, since my COBRA is ending. I was denied coverage based on gluten intolerance. It didn't even matter that I am not officially 'celiac.' So, there's another reason to just do the diet and not try to get medical answers for all of it.

best wishes,

kathleen

mamaw Community Regular
mamaw
Posted

Nini, I totally agree with you......

mamaw

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    • trents
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