Everything Came Back Normal

[CGally81]

This is NOT the news I wanted to hear.

I had a few blood tests. Antibodies came back normal (though I was no longer eating gluten). DNA results just now came back normal. No abnormally low vitamin levels.

Yet, if I eat gluten, I space out, feel like a zombie, lose all my strength, have stomach rumbles that never stop, and have my blood sugar plummet. I'd also been losing weight despite eating MORE than usual (due to the blood sugar drops caused by eating gluten). L-glutamine stops those symptoms quickly. If I don't eat gluten, I don't get them.

Plus, I'm going through gluten withdrawal, and a "hungry all the time" phase that is just nasty.

So what is causing the problem? What do I have if not Celiac? I was having hope for Celiac, because treatments and a vaccine are in development. If I don't have Celiac, then whatever I have might not be curable for a long time. If I do have Celiac, but the cure reacts differently based on your genetic makeup, then it won't help me since I don't apparently have the genes. (HLA DQ2 and HLA DQ8)

[TotalKnowledge]

First off, I don't know how much faith I would have in the Vaccine. It could only mask a deeper problem eliminating the immediate reaction. It could make gluten consumable without the IBS type symptoms, but making all the other problems worse.

Second the only treatment is to not eat gluten which would be the same if your just stop eating gluten to make yourself feel better.

Either way, just stop eating gluten

[CGally81]

First off, I don't know how much faith I would have in the Vaccine. It could only mask a deeper problem eliminating the immediate reaction. It could make gluten consumable without the IBS type symptoms, but making all the other problems worse.

Second the only treatment is to not eat gluten which would be the same if your just stop eating gluten to make yourself feel better.

Either way, just stop eating gluten

The vaccine is meant to cause the immune system to stop attacking gluten, and has already proven effective in mice and pigs. It therefore targets the auto-immune disorder itself, not a specific symptom.

Anyway, I want answers. I want to know if what I have is indeed celiac, or something different. I can't imagine having the celiac symptoms, triggered only when I eat gluten, and yet not having celiac. This is really upsetting to me. Everything is coming back negative.

[TotalKnowledge]

The vaccine is meant to cause the immune system to stop attacking gluten, and has already proven effective in mice and pigs. It therefore targets the auto-immune disorder itself, not a specific symptom.

Anyway, I want answers. I want to know if what I have is indeed celiac, or something different. I can't imagine having the celiac symptoms, triggered only when I eat gluten, and yet not having celiac. This is really upsetting to me. Everything is coming back negative.

My point being that it doesn't address the bodies inability to deal with the gluten, it only effects the bodies immune response to the gluten. Since celiac's cannot digest gluten as well as other people then the body has to deal with the gluten in some manner. If it does not cause an autoimmune response to rid the body of gluten then the gluten will just build up. I wouldn't be surprised if it causes more problems than it solves.

[Swimmr]

The vaccine is meant to cause the immune system to stop attacking gluten, and has already proven effective in mice and pigs. It therefore targets the auto-immune disorder itself, not a specific symptom.

Anyway, I want answers. I want to know if what I have is indeed celiac, or something different. I can't imagine having the celiac symptoms, triggered only when I eat gluten, and yet not having celiac. This is really upsetting to me. Everything is coming back negative.

I had blood tests done and they were negative. But also was told that since I'd been gluten free for quite some time, it would give a false negative and to ensure a true test I would have to willingly eat something I know is bad and be re-tested. I am not doing that...

I got over the fact that I just HAVE to know because I feel tons better being on a gluten free diet and that, to me, is much more worth worrying over a confirmation from a doctor (who, if you read more on this forum can be a bit hard to deal with and seem to be insensitive).

I plan to get an actual DNA test done. It's more expensive, but it will tell you if you carry the gene for Celiac or gluten sensitivity.

[curlyfries]

You could still have a gluten intolerance. Do you feel you need a diagnosis in order to stay gluten free?

If you feel better not eating gluten, that's all you need to know.

And just my 2 cents worth. For me, if a vaccine or cure did come along, I probably would still eat gluten free. It just makes more sense to me to listen to my body, and not try to force it to tolerate something it clearly doesn't.

But that is my personal choice, and I am in no way trying to tell anyone else what choices to make. I respect that everyone has their own opinion.

[CGally81]

I had blood tests done and they were negative. But also was told that since I'd been gluten free for quite some time, it would give a false negative and to ensure a true test I would have to willingly eat something I know is bad and be re-tested. I am not doing that...

I got over the fact that I just HAVE to know because I feel tons better being on a gluten free diet and that, to me, is much more worth worrying over a confirmation from a doctor (who, if you read more on this forum can be a bit hard to deal with and seem to be insensitive).

I plan to get an actual DNA test done. It's more expensive, but it will tell you if you carry the gene for Celiac or gluten sensitivity.

My doctors have been pretty cool, willing to admit they don't know everything, and willing to recommend me to those who might. My regular doctor admitted to knowing little about Celiac, and referred me to the gastroenterologist. Who in turn would like me to get an endo to rule out everything else even if he knows he can't test for Celiac (due to my refusal to eat gluten). Plus he just recommended me to an immunologist.

I am hoping the immunologist gets me some answers.

As for the DNA test, I got it, and it came back negative. I mentioned this all to the supervisor at my office who has Celiac, and he told me "it hasn't been conclusively proven that the genes actually cause it". I'm thinking he's probably right. After all, doesn't 40% of the population have one of these two particular genes? I think it's just a coincidence then.

So, to the immunologist I go, to hopefully get some real answers. After all, an immunologist found that a coworker of mine with lupus also has Celiac, so maybe I'll find out what's up.

[TotalKnowledge]

My doctors have been pretty cool, willing to admit they don't know everything, and willing to recommend me to those who might. My regular doctor admitted to knowing little about Celiac, and referred me to the gastroenterologist. Who in turn would like me to get an endo to rule out everything else even if he knows he can't test for Celiac (due to my refusal to eat gluten). Plus he just recommended me to an immunologist.

I am hoping the immunologist gets me some answers.

As for the DNA test, I got it, and it came back negative. I mentioned this all to the supervisor at my office who has Celiac, and he told me "it hasn't been conclusively proven that the genes actually cause it". I'm thinking he's probably right. After all, doesn't 40% of the population have one of these two particular genes? I think it's just a coincidence then.

So, to the immunologist I go, to hopefully get some real answers. After all, an immunologist found that a coworker of mine with lupus also has Celiac, so maybe I'll find out what's up.

There seems to be some correlation between various autoimmune disorders and gluten intolerance including but limited to Lupus. Some people have an improvement of those symptoms after going gluten free.

I myself had a negative blood test however that is inconclusive since as many as 30% of individuals with gluten problems will have a false negative. I feel better, and a list of around 100 diverse symptoms have either resolved or improved with a gluten free diet. I don't care to go through what it takes to get a "proper" diagnosis. I will just be gluten free and healthy.

[YoloGx]

The tests for celiac often aren't accurate--which certainly is made even more so if you are off gluten already.

Nevertheless, many people "just" have gluten intolerance. My belief is that those with severe gluten intolerance are luckier than those with celiac. I may be wrong, but its my belief anyway that they are less subject to the negative effects of cross contamination of minute amounts of trace gluten.

Is this true or not?? I'd like to know. What do the rest of you think...

If what I think is the case, I'd rather just have severe gluten intolerance than celiac any day...

Bea

[TotalKnowledge]

The tests for celiac often aren't accurate--which certainly is made even more so if you are off gluten already.

Nevertheless, many people "just" have gluten intolerance. My belief is that those with severe gluten intolerance are luckier than those with celiac. I may be wrong, but its my belief anyway that they are less subject to the negative effects of cross contamination of minute amounts of trace gluten.

Is this true or not?? I'd like to know. What do the rest of you think...

If what I think is the case, I'd rather just have severe gluten intolerance than celiac any day...

Bea

My take is that they are probably the same condition, but some triggering even caused the body to deal less well with the gluten intolerance, and celiac's then forms.

[Korwyn]

....I had a few blood tests. Antibodies came back normal (though I was no longer eating gluten). DNA results just now came back normal. No abnormally low vitamin levels.

Blood work has a high rate of false negative. I had repeated blood work which came back negative. I was later diagnosed with Celiac as a result of response to a gluten-free diet and my Enterolab results which showed very high tTG, Gliadin and Casein IgA. My Dad's 1st blood work was negative. They redid his blood work after I got my diagnosis and got a 'borderline' this time. His response has been also very strong. I have another sibling who has been diagnosed though several blood workups were negative. Another friend has DH with negative blood work (5 times) and endoscopic biopsiy were negative, but finally got their DH biopsied and were diagnosed with Celiac.

Take a look at Enterolabs or Prometheus labs.

then it won't help me since I don't apparently have the genes. (HLA DQ2 and HLA DQ8)

How do you know this? Did you get the gene testing done? Also there is significant evidence that other markers are linked, and at least one person on the boards here has a family member who has NONE of the markers, but all of the symptoms.

[CGally81]

My point being that it doesn't address the bodies inability to deal with the gluten, it only effects the bodies immune response to the gluten. Since celiac's cannot digest gluten as well as other people then the body has to deal with the gluten in some manner. If it does not cause an autoimmune response to rid the body of gluten then the gluten will just build up. I wouldn't be surprised if it causes more problems than it solves.

You have a good point. Gluten leaks through the intestine and floats around the body, and the immune system attacks it, hitting every organ in the process.

That's why one treatment under development, AT-1001, works by having your intestines not "open up" so much to let the gluten out, but just enough to allow vitamins and nutrients to flow through.

I think if you were to combine that treatment with the vaccine targeting the immune reaction, then you'd have a perfect cure.

I'll be following any news on the vaccine that comes along, and have already signed up for a Google News alert regarding it (any time the words "celiac" and "vaccine" appear in the same article, I get an e-mail about it along with a link to read the article). I hope no adverse effects are discovered during their 3 year trial. I'd really like to know what happens to gluten that slips through the intestine and does not get destroyed by the immune system. To autistics like me, does it go back to acting like a drug? (I had plenty of behavior problems as a kid and seriously lacking social skills most of my life, along with strange "urges" to say or do seemingly random stuff)

I do hold out hope that this will be cured at least in my lifetime, if not all of ours. I was thinking that it would be cured within 3 years via the vaccine. But more might well have to be done.

[tarnalberry]

You said you'd been eating gluten free at the time of the tests. For how long? If there wasn't much damage to your intestines, it wouldn't take very long before the tests are completely useless. You must be eating gluten for the tests to be accurate.

[CGally81]

You said you'd been eating gluten free at the time of the tests. For how long? If there wasn't much damage to your intestines, it wouldn't take very long before the tests are completely useless. You must be eating gluten for the tests to be accurate.

I went mostly gluten-free in August (still eating Fudgsicles before I learned that "malt powder" has gluten), and took a test in September that didn't show abnormal vitamins or anything like that. I went totally gluten-free (out went the Fudgsicles) in October. I took a test for antibodies and DNA in late November, and just got it back recently. The antibodies looked normal, he said. Something related to gliadin was low, but I wish I'd asked further about that.

So I took those tests after avoiding gluten for quite a while.

The DNA test came back today, and was also normal. I imagine it's possible to have Celiac without HLA DQ2 or DQ8. But still, these constant negatives aren't helping.

Now I'm going to an immunologist soon to see if THEY can find anything.

[TotalKnowledge]

You have a good point. Gluten leaks through the intestine and floats around the body, and the immune system attacks it, hitting every organ in the process.

That's why one treatment under development, AT-1001, works by having your intestines not "open up" so much to let the gluten out, but just enough to allow vitamins and nutrients to flow through.

I think if you were to combine that treatment with the vaccine targeting the immune reaction, then you'd have a perfect cure.

I'll be following any news on the vaccine that comes along, and have already signed up for a Google News alert regarding it (any time the words "celiac" and "vaccine" appear in the same article, I get an e-mail about it along with a link to read the article). I hope no adverse effects are discovered during their 3 year trial. I'd really like to know what happens to gluten that slips through the intestine and does not get destroyed by the immune system. To autistics like me, does it go back to acting like a drug? (I had plenty of behavior problems as a kid and seriously lacking social skills most of my life, along with strange "urges" to say or do seemingly random stuff)

I do hold out hope that this will be cured at least in my lifetime, if not all of ours. I was thinking that it would be cured within 3 years via the vaccine. But more might well have to be done.

I totally missed that you have autism when I first responded to your post. I know that there is a lot of talk about a gluten free diet helping with autism. Coupled with that however is also a casein free diet. Casein is a very similar to gluten. I think there just has not been enough research done in these areas. If eating gluten free and casein free help I say go for it and eat that way. The medical community doesn't know how it all works yet.

I know that my behavior is effected by gluten. Once I started a gluten free diet the torrent of emotions I used to have is now gone. I do not have the same problems with mania, depression and anxiety that I had previously. I also have an easier time avoiding addictive substances such as caffeine and alcohol. I actually managed to quit smoking years ago, but I would imaging it would have been easier to quit if I had gone gluten free then.

[Jestgar]

I plan to get an actual DNA test done. It's more expensive, but it will tell you if you carry the gene for Celiac or gluten sensitivity.

There is no identified "Celiac" gene. Some HLA types are associated with Celiac disease (and other auto-immune disorders) but they have not been shown to be either necessary, or sufficient, to cause Celiac disease.

It's like saying 'being a lawyer is associated with living in Manhattan'. Not all lawyers live in Manhattan, and not everyone living in Manhattan is a lawyer. If someone is a lawyer they have a higher probability of living in Manhattan, but it isn't required.

[CGally81]

There is no identified "Celiac" gene. Some HLA types are associated with Celiac disease (and other auto-immune disorders) but they have not been shown to be either necessary, or sufficient, to cause Celiac disease.

It's like saying 'being a lawyer is associated with living in Manhattan'. Not all lawyers live in Manhattan, and not everyone living in Manhattan is a lawyer. If someone is a lawyer they have a higher probability of living in Manhattan, but it isn't required.

All this time, I'd been hearing that HLA DQ2 and DQ8 are the genes. Everything is coming back negative, so how do I prove I have Celiac to those whom it matters? My family is supportive of me, yet they're going to be VERY skeptical if every test I take comes back negative. I'd been glutened by accident a number of times from things like rotisserie chicken, and had to back out of turkey-eating at Thanksgiving, but now they're going to say "you don't have Celiac" even though I know full well how I feel when I eat gluten, and had complained of the symptoms before I even discovered the problem.

What is there that can conclusively prove it? I hate this.

Right now, for the past few hours, my stomach has been making noises. Not the ones it would make if I'd been glutened, but more like... I dunno, lactose intolerant noises? I've otherwise felt better than yesterday or the day before.

I'm getting real upset. I want to know conclusively WHAT I have, and if it is one day curable, to get it out of my system. Something is clearly wrong with me. Gluten is related to it somehow. I need something conclusive, and I refuse to poison myself for the sake of a test, when it would mean months of recovery afterwards.

[ravenwoodglass]

Something is clearly wrong with me. Gluten is related to it somehow. I need something conclusive, and I refuse to poison myself for the sake of a test, when it would mean months of recovery afterwards.

If you absolutely need to have a doctor tell you what your body is already then you have no choice but to go back on a gluten diet and redamage your body so your doctor can get the proof you want. The gene test is not a diagnostic test and there are more than just those two genes associated with celiac. It sounds like you know gluten is a big issue for you, why do you have to have some doctor tell you what your body has already? Sometimes the only proof we can get is the response to the diet. If you eat gluten and you get sick that is conclusive IMHO.

[CGally81]

If you absolutely need to have a doctor tell you what your body is already then you have no choice but to go back on a gluten diet and redamage your body so your doctor can get the proof you want. The gene test is not a diagnostic test and there are more than just those two genes associated with celiac. It sounds like you know gluten is a big issue for you, why do you have to have some doctor tell you what your body has already? Sometimes the only proof we can get is the response to the diet. If you eat gluten and you get sick that is conclusive IMHO.

I agree. I still want an official diagnosis, as I feel it will help me later. The immunologist might find out if I react to other things. (From my experience, for instance, I don't react to casein or soy. In fact, the supervisor in my office who has Celiac also doesn't react to those, so we might have been spared in that regard)

The official diagnosis could also make it so that, if a treatment or cure is released later, I can get it and have my insurance pay for it. I'm willing to save up in the bank to buy such a cure myself if I absolutely must (heck, I spent $1000 to upgrade my computer once - I'm a gamer, pardon me - so I'll be tight with my money for a long time and just buy the gosh darn cure if I must. And believe me, I do NOT get paid a lot in my lowly government job). There may be other benefits to having an official diagnosis. Plus it would bring me peace of mind.

It just sucks to have the following situation:

Antibodies blood test - negative

DNA test - negative

Endoscopy - likely negative if I did take it (though the doctor recommends I get one, once my "hungry all the time" phase has ended, to rule out all other possibilities just in case I have another disorder that is related in some way)

[happygirl]

You may want to consider the possibility that you do not have Celiac, but a non-Celiac gluten sensitivity, that won't show up on the biopsy, etc.

[CGally81]

You may want to consider the possibility that you do not have Celiac, but a non-Celiac gluten sensitivity, that won't show up on the biopsy, etc.

Perhaps, but I did lose a lot of weight, which I'm putting back on (and I have the hunger to "help" with this), and my symptoms when eating gluten are neurological, not just gastrointestinal. I can't imagine what besides Celiac it could be. I'm also having gluten withdrawal symptoms.

[dmurth01]

Perhaps, but I did lose a lot of weight, which I'm putting back on (and I have the hunger to "help" with this), and my symptoms when eating gluten are neurological, not just gastrointestinal. I can't imagine what besides Celiac it could be. I'm also having gluten withdrawal symptoms.

Sounds just like me! I have the same exact symptoms as you. My TTG IgA test came back weak positive, but doc says that my bloodwork isn't really abnormal. Also, endoscopy showed no visible damage, but I'm still waiting for biopsy results. I should have them by next tuesday.

I'm going gluten-free after my business trip next week, regardless of my results. I ate gluten 2x today, and after both times I felt like I could literally pass out from exhaustion. Going to bed now actually...night and good luck!

[ravenwoodglass]

I agree. I still want an official diagnosis, as I feel it will help me later. The immunologist might find out if I react to other things. (From my experience, for instance, I don't react to casein or soy. In fact, the supervisor in my office who has Celiac also doesn't react to those, so we might have been spared in that regard)

The official diagnosis could also make it so that, if a treatment or cure is released later, I can get it and have my insurance pay for it. I'm willing to save up in the bank to buy such a cure myself if I absolutely must (heck, I spent $1000 to upgrade my computer once - I'm a gamer, pardon me - so I'll be tight with my money for a long time and just buy the gosh darn cure if I must. And believe me, I do NOT get paid a lot in my lowly government job). There may be other benefits to having an official diagnosis. Plus it would bring me peace of mind.

It just sucks to have the following situation:

Antibodies blood test - negative

DNA test - negative

Endoscopy - likely negative if I did take it (though the doctor recommends I get one, once my "hungry all the time" phase has ended, to rule out all other possibilities just in case I have another disorder that is related in some way)

I do understand your frustration. I am a seronegative celiac and my double dose of celiac related genes were not recognized as being celiac related until very recently in the US and many doctors are still unaware of any other genes related to celiac other than DQ2 or 8. I did get an 'official' diagnosis but I was close to death before that happened. I would give anything to have known to try the diet but I didn't. Why does your doctor want to wait until your symptoms reside before doing the endo? That would really insure a false negative. I do hope you are able to get the answers you need.

[Anna and Marie]

hi CGally81!

My blood tests came back negative too and so did the ANA test. I've been tested three times for it but they always come back negative because I have been on a gluten free diet for about five years. The ANA one threw me off 'cause I supposedly have Lupus, another autoimmune disease, but the ANA test came back negative! How is that??

If I were you, and I have been there, knowing that my body is healthy without gluten would give me validation and bring me peace. There are some things that just require a feeling of health and happiness to be confirmed. God bless,

Anna

[ang1e0251]

I think you are going out on a big limb pushing and pushing for a dx in light of the publisized cases of insurance companies denying coverage to some with celiac disease. You want to be included in trials or cures down the road but when trials are conducted, they are very particular about their test subjects. There is a slim chance of you getting in anyway. Have you contacted the team conducting the animal tests? They might be fielding quesitons about who they might consider or what the criteria may be when they are ready for human trials.

You are going to go your own way, of course, this is just my opinion. I would take into consideration that you were gluten-free for your bloodwork so it had to be negative. The only chance for it to be positive is if you are eating gluten in good amounts for 8-12 weeks. The same is true for an endoscopy; worthless if you are gluten-free.

What genes did your test show? There are other genes recognized in other countries as being associated with celiac disease.

Or it could be you are simply gluten intolerant and that will show up on no tests. In that case you have many of the symptoms with no testing to back it up. Your body is clearly showing you what it can thrive on and what causes it to be sick. Listen to it, and if nothing changes, I hope you have the strength to accept what you cannot change.