Negative Genetic Test After Eighteen Years?

[leelee20]

This is an odd and long-winded question, basically I am a college student who was diagnosed with celiac waaaaaay before it was popular '91 and now have been told that my genetic test is negative...but, wait for it....I STILL GET SICK.

Hi I haven't posted in a long time. I had a series of tests done in august/september/october and found out (thankfully) that I was negative for chrone's disease and also for colitis(sp?), to my great surprise I also found out my celiac test was negative. I have been on a celiac diet since I was a year old, so it wasnt that surprising that there wasnt any intestinal damage (they did a colonoscopy) but the GENETIC TEST WAS NEGATIVE. Uh, yeah, I was shocked. I started eating all kinds of crap, drinking loads of beer etc etc. gained weight like crazy for the first month or so and didnt feel so great in general, granted I had also stopped exercising. I assumed that I felt crappy because I was eating copious amounts of junk, or because this stuff was new to my diet.

Then I cut all that crap out, went vegetarian and started eating everything healthy, wholegrain bread, fruit, beans, tofu, soy milk etc etc just an all around a perfect diet. And I feel like s$#&e, still. My stomach is bloated; I have migraines and diarreah very often, I'm tired a lot, I'm on anti-depressants (whole other set of issues but I think it's gotten worse since I went off the celiac diet).

My doc said I probably have IBS, but I don't think so. I can tolerate huge amounts of fruit, bell peppers, onions, all the stuff that is supposed to set you off if you have IBS. I think it's the gluten, because while I still occassionally got sick on the celiac diet, I felt loads better. But people keep telling me its probably psycho-sematic, and because I was told for 18 years I couldnt eat gluten, I get sick when I eat it, which I seriously doubt. IS THERE ANY WAY THAT THE GENETIC TEST IS NEGATIVE; BUT I'M STILL CELIAC???

[kitten37]

Again I don't fully trust science. It is a process discovered by man and we are not infallable, the same goes for tests. A few years back I got the west nile virus. I have never been so sick in my life. Being an extremely health consious active person it hit me like a mack truck. They ran blood samples which came back negative for the virus. I had a rash so bad all my skin peeled off along with every other symptom. My mom pushed the doctors more due to how sick I was getting. Turns out the blood test was a false negative. So never take 1 test as the end all and be all. If you feel better eating the diet you did before then it may just be in your best interest to eat that way.

[ravenwoodglass]

What genes did they test for? If they only tested for the two celiac genes that are recognized in the US and you carry one of the 7 that are newly recognized, they will tell you that the gene test is negative. I was a full blown celiac who saw lots of stuff go into remission on the gluten-free diet but the gene test I had done 5 years after diagnosis showed I don't have a 'celiac' gene either. At least by US standards, here it is linked to RA, but in Japan it IS a recognized celiac gene. We have to remember that gene testing is in it's infancy, there is much, much more to be learned.

The true test is how you do on the diet, followed strictly.

[gfpaperdoll]

Yes, welcome to the world of the "gluten intolerant". You might want to get the gene test thru Enterolab.com - they will also test for the gluten intolerant genes.

You could have two copies of the DQ1 gene - if so - that is why you are so sick, that is a bad combination to have. I have two DQ1 genes & all my family does also.

Do you have any other food allergies? neurological symptoms when on gluten? If yes, most likely you are DQ1...

many, many people are suffering because the doc tells them no way do they have celiac because they "do not have the genes" - ha, bunch of baloney...

there is no such thing as a disease called IBS, just as there is no such thing as a disease called vomiting... just something the doctor can say when he has no idea why you are sick & have paid him $150.00 for an office visit...

[leelee20]

Yeah, I knew the IBS thing was crap. My doctor kept forgetting that I had been on a celiac diet for 18 years, too.

He was like "Well let's see, no damage to your villi so you must not have celiac" and I was like, "uhh...well you see I have been religiously avoiding gluten for 18 years as I have told you numerous times over numerous office visits--so their wouldn't be any damage"

and then he did the genetic test and was like, "your negative, congratulations, you can eat wheat."

and I did ask if they tested for all of the genes, I knew there was more than one, and he didn't seem to know what I was talking about.

what do you mean by 'neurological symptoms'? I should know what that means...I have headaches a lot, in the front of my head, and the sides; I sleep waaaay too often, though the antidepressant (wellbutrin) has helped a bit, AND I have this bizarre pain under my chin, almost everyday, I think that's where some glands are located? Feel just sort of mentally foggy a lot of the time. diagnosed with depression recently, too.

The thing is I am so sick of doctors being like, "well, uhh beats me. avoid onions" and the whole pain-under-chin thing is going to make me sound like a hypochondriac lol. So I haven't pursued this very much, as far as seeing a doctor. And being 19 y/o means they take you even less seriously lol.

Yes, welcome to the world of the "gluten intolerant". You might want to get the gene test thru Enterolab.com - they will also test for the gluten intolerant genes.

You could have two copies of the DQ1 gene - if so - that is why you are so sick, that is a bad combination to have. I have two DQ1 genes & all my family does also.

Do you have any other food allergies? neurological symptoms when on gluten? If yes, most likely you are DQ1...

many, many people are suffering because the doc tells them no way do they have celiac because they "do not have the genes" - ha, bunch of baloney...

there is no such thing as a disease called IBS, just as there is no such thing as a disease called vomiting... just something the doctor can say when he has no idea why you are sick & have paid him $150.00 for an office visit...

[leelee20]

I don't know what genes they tested me for, I knew there was more than one and I asked about that, but all he said was that it was negative and I could eat gluten. yeah....thats worked out well, I look about 3 months pregnant half the time thanks to the bloat. lol.

[curlyfries]

I also have that "weird pain' under the chin[ actually it's on both sides under the jaw]. Is that what you mean? It really is a difficult sensation to explain. The doc felt around but said my lymph glands were fine. This is the first time I've seen anyone else mention this. I've been gluten-free since Jan. and still have the problem. Does anyone out there have any insight on this?

Lisa

[leelee20]

yeah, I'd be willing to bet it's the same thing, sort of a throbbing sensation near the jawbone; when I got tested for mono my doc said the glands were normal, as well.

I also have that "weird pain' under the chin[ actually it's on both sides under the jaw]. Is that what you mean? It really is a difficult sensation to explain. The doc felt around but said my lymph glands were fine. This is the first time I've seen anyone else mention this. I've been gluten-free since Jan. and still have the problem. Does anyone out there have any insight on this?

Lisa

[curlyfries]

Mine doesn't feel like it's throbbing. It aches, but there's also a.....I guess I would say a sharp pain, but that's not really a good description either. The more I think about it [your post has got me paying more attention than usual], it seems when it's acting up, like it is now, I have an excess of saliva on both sides of my tongue. Hmmm,.... I think I need to google salivary glands.

[curlyfries]

I found a possibility. It could be either an infection or Sjogren's. It's not likely to be a blockage or tumor, as I have it on both sides. I get sore throats often, and just recently got over one. I also have dry eyes and my throat occassionally "seizes up" on me because it suddenly dries out. I had thought about being tested for Sjogren's, but was going to wait til I saw my ob/gyn. She's good about ordering tests and I don't have much faith in my family dr.

[fedora]

leelee20,

Why were you getting more tests done? Apparantly you have some other health issues. What were they before you started eating gluten again? Maybe you can't eat soy.

There are scientifically documented cases of people having celiac disease without the 2 main genes, DQ2 and DQ8. This percentage is small, but real. It irratates me that big medical hospitals in US don't recognize this and say someone has to have these 2. I researched it alot, and found documented studies done in Europe and Mexico. In the European study 6% of the celiacs had other genes than the 2 main ones. So take that U of chicago!

[Ursa Major]

leelee, you obviously can't eat gluten. You would do well to immediately get back onto a gluten-free diet. Soy is a bad idea as well.

Depression is one of the many recognized symptoms of celiac disease/gluten intolerance. I say, get off gluten, and the antidepressant. Your depression is caused by eating gluten again. But don't just quit the antidepressant, but taper off it slowly, as those are addictive and you might get withdrawal symptoms.

[leelee20]

I got more tests done because even when I was on the celiac diet I was tired a lot of time; slept too often, had other depression symptoms; I still had stomach-aches diarreah and bleeding (every few months). The most irritating thing, in terms of functioning is the foggy-headed feeling and the being tired most of the time. I tested negative for lyme; mono (though they did say that I had had it and some point; I'm guessing about three years ago in sophomore/junior year of highschool), chrones and colitis.

My doc said that usually people allergic to soy have a skin reaction; which I don't have at all. My skin doesn't react when I eat gluten, either.

When I saw a psychiatrist for depression (this was after I went off the celiac diet) I had labs done testing potassium and iron and my thyroid...and just about everything else and it was all normal. I do believe the depression has a physical component but it is difficult for me to tell how much of it is physical because I lost a parent a couple years ago, lots of family issues etc etc etc. I am inclined to believe that part of it is the gluten, though, since I am usually a trooper, as they say, and my symptoms seem more physical than mental most of the time.

leelee20,

Why were you getting more tests done? Apparantly you have some other health issues. What were they before you started eating gluten again? Maybe you can't eat soy.

There are scientifically documented cases of people having celiac disease without the 2 main genes, DQ2 and DQ8. This percentage is small, but real. It irratates me that big medical hospitals in US don't recognize this and say someone has to have these 2. I researched it alot, and found documented studies done in Europe and Mexico. In the European study 6% of the celiacs had other genes than the 2 main ones. So take that U of chicago!

[fedora]

leelee20,

I am so sorry that you have continued to have problems. Have they been continuous through out your life? Your parents must have seen much improvement to have kept you off gluten. If now you are worse eating it, I would not. It doesn't matter if it is extreme celiac or just horrible gluten intolerance.

I don't see why everyone with a soy problem would have skin issues. Some may not. There are also other food intolerances out there.

But what got my attention was lymes. If you did not get tested through IgeneX I would get retested through them. Lymes can be difficult to find. IgeneX has the most sensitive testing. The other labs do not have as sensitive of tests(or so my awesome DR friend tells me and others here too). You may want to check out the lymes thread here if you haven't already.

I understand about feeling like the depression has a physical component. I could always feel it coming. I am so sorry about your parent, you have my deepest condolonsces.

Take care, and hoping you find healing

[gfpaperdoll]

leelee, neurological can include what you have which is migraines, depression, foggy brain - that kind of stuff, plus more!!

for jaw pain have ya'll checked out TMJ? You would need a full bite guard to see if it makes the pain go away. I would go to a good dentist & get that checked out - it can also cause headaches... I still wear my bite guard - I am 61 & had to have braces & TMJ work done when I was 40. (such a youngster,hehehe...)

leelee, you need to take a critical look at your gluten-free diet & get off all carbs like gluten-free substitute foods & grains. Just go back to whole foods, meat, fish, seafood, veggies & fruit.

You also probably have other food intolerances to go along with the neurological problems & gluten intolerant genes you obviously have. I would start with eliminating dairy, (all dairy), soy, all artificial sugar & sodas, grains, white potatoes & then it would be check out nuts, eggs... & whatever else you think could be causing a problem.

I would also double check all vitamins & makeup & personal care products.

& start taking B12 - we all need B12...

[leelee20]

I'm going to try an elimination diet this week, and go back on meat. I KNOW that the vegetarian fake-meat stuff makes me sick because I'm literally bent over after I eat it, probably b/c of the huge amounts of gluten/soy/whatever else is in it. So I didn't even eat much of that, but the whole vegetarian diet I think exacerbates whatever intolerances I do have b/c before I didn't eat many carbs at all, and after I got off the celiac diet and went vegetarian I had to eat a lot of them. I don't really eat dairy at all, but I'll try to cut out the eggs, the grains, the soy and stick to veggies and meat. thanks for your insights. My psych is sort of unifomed about all this and she'll prob think I have an eating disorder or I'm going on a fad diet or something if I tell her I'm going off of carbs. When I told her I was a vegetarian she said that that was probably my problem and I probablyl had an iron deficiency. Which I knew I didnt because I eat more frickin beans than anyone one the planet lol. I didn't really bother trying to explain my dietary issues to her b/c I tested negative for celiac and she just would not get it.

leelee, neurological can include what you have which is migraines, depression, foggy brain - that kind of stuff, plus more!!

for jaw pain have ya'll checked out TMJ? You would need a full bite guard to see if it makes the pain go away. I would go to a good dentist & get that checked out - it can also cause headaches... I still wear my bite guard - I am 61 & had to have braces & TMJ work done when I was 40. (such a youngster,hehehe...)

leelee, you need to take a critical look at your gluten-free diet & get off all carbs like gluten-free substitute foods & grains. Just go back to whole foods, meat, fish, seafood, veggies & fruit.

You also probably have other food intolerances to go along with the neurological problems & gluten intolerant genes you obviously have. I would start with eliminating dairy, (all dairy), soy, all artificial sugar & sodas, grains, white potatoes & then it would be check out nuts, eggs... & whatever else you think could be causing a problem.

I would also double check all vitamins & makeup & personal care products.

& start taking B12 - we all need B12...

[ravenwoodglass]

My psych is sort of unifomed about all this and she'll prob think I have an eating disorder or I'm going on a fad diet or something if I tell her I'm going off of carbs.

I don't know if I would even share this with her right away. You can get carbs from sources other than grains. Fruits and Veggies have carbs as do things like wild rice (actually a grass not a grain if memory serves me today ). Many of us do have issues with soy so it is a good thing you are eliminating it. It may make a big difference eating unprocessed for sure gluten-free,CF,DF, SF for a while. You could hold off telling her about your diet changes and when you are feeling better then you could tell her why. Sometimes it takes our healing to make real believers of some doctors.

[curlyfries]

for jaw pain have ya'll checked out TMJ? You would need a full bite guard to see if it makes the pain go away. I would go to a good dentist & get that checked out - it can also cause headaches... I still wear my bite guard - I am 61 & had to have braces & TMJ work done when I was 40. (such a youngster,hehehe...)

I hope I did this quote thing right I know that I have TMJ, and this pain is totally different, it definitely feels glandular in some way. But if yours is throbbing, Leelee20 , you might look into that.

[curlyfries]

Guess I didn't do it right. Well, you get the picture

[nora-n]

Hi, about that throbbing feeling below the chin, I have this too when my thyroxine dose changes, or if I eat goitrogenic foods. Hypothyroidism or hyperthyroidism is quite common in celiacs.

Here is a link about the gene thing

Open Original Shared Link

Open Original Shared Link some were DQ7

and DQ9 has been reported too in celiacs

and Dr. Hadjivassiliou found that about 20% of gluten ataxia patients are DQ1...

I have IgG antibodies to yeast and beans and kiwi and molluscs. I had a food panel done. and I do not tolerate any milk or traces of milk.

nora

[leelee20]

Sorry to bring back an old thread...

So I've been gluten free for about a week and I feel AMAZING. I can concentrate again! just in time for finals. I've been able to exercise for more than 20 minutes at a time, too. My stomach is almost flat again. Of course; everyone thinks I'm a hypochondriac b/c my test was negative but whatever, I feel better....I don't think I'm ever going to see a GI doctor again...because clearly they have no idea what they are doing. I can't believe he was just like, oh you should go back on gluten after 18 years....

I'm going to get that TMJ thing checked out when I go in for a physical, I looked it up and it sounds like what I have. I know my thyroid is ok b/c I had it checked like 2ish months ago; like evveryyybody on my mother's side has thyroid problems, but I lucked out, I guess.

[leelee20]

Sorry to bring back an old thread...

So I've been gluten free for about a week and I feel AMAZING. I can concentrate again! just in time for finals. I've been able to exercise for more than 20 minutes at a time, too. My stomach is almost flat again. Of course; everyone thinks I'm a hypochondriac b/c my test was negative but whatever, I feel better....I don't think I'm ever going to see a GI doctor again...because clearly they have no idea what they are doing. I can't believe he was just like, oh you should go back on gluten after 18 years....

I'm going to get that TMJ thing checked out when I go in for a physical, I looked it up and it sounds like what I have. I know my thyroid is ok b/c I had it checked like 2ish months ago; like evveryyybody on my mother's side has thyroid problems, but I lucked out, I guess.

[ravenwoodglass]

Sorry to bring back an old thread...

So I've been gluten free for about a week and I feel AMAZING. I can concentrate again! just in time for finals. I've been able to exercise for more than 20 minutes at a time, too. My stomach is almost flat again. Of course; everyone thinks I'm a hypochondriac b/c my test was negative but whatever, I feel better....I don't think I'm ever going to see a GI doctor again...because clearly they have no idea what they are doing. I can't believe he was just like, oh you should go back on gluten after 18 years....

I'm going to get that TMJ thing checked out when I go in for a physical, I looked it up and it sounds like what I have. I know my thyroid is ok b/c I had it checked like 2ish months ago; like evveryyybody on my mother's side has thyroid problems, but I lucked out, I guess.

So good to hear you are feeling better! Hope all goes well on your finals.

Something that has helped me a lot with mouth discomfort and tense muscles there is a bit of accupressure. Pinch the area between the thumb and the index finger where the web is. Do it high into the web area right where the thumb and the finger join. You should feel a bit of discomfort at first when you hit the right spot. Sqeeze and release for about 5 minutes or so and then switch hands. It will help your jaw muscles relax. I found out about this when I had a tooth infection and used the spot for pain control until I could get the infection resolved. I was amazed when I realized I was no longer grinding my teeth at night and I could feel the jaw relax. You may want to give it a try, it certainly can't hurt and may help.