Getting Officially Tested, Trial For Treatment As Well?

[CGally81]

My boss mentioned to me that it might be a good idea to get "officially" tested for Celiac. I already know gluten is the enemy, from my own experiences, including being accidentally gluten a few times (frosting on an otherwise gluten-free cupcake, crackers on fish, Fudgsicles, and a rotisserie chicken from ShopRite). And I know I feel better if I don't eat it, plus I've mostly (not entirely) gone through the "abnormally high hunger" hump. So there's no denying I have this problem. Plus my symptoms are more neurological rather than gastrointestinal.

My boss said that she knows someone with cancer, who somehow was allowed to try out an experimental cancer treatment not yet available to the public at large, and is doing much better on the treatment. She said that maybe if I was officially diagnosed with Celiac, I could sign on somehow for an experimental treatment (one is in the works, that is said to work by preventing your body from releasing too much zonulin and therefore letting gluten go through and setting off the immune system, and there's an experimental cure as well). Do you think that might be the case?

How do I get to sign up to try the experimental treatment? Are there benefits to being officially diagnosed for Celiac? Believe me, I want a treatment/cure as soon as I can, though I doubt I'm in any minority here when I say that!

What do you recommend?

Plus, what would such a treatment center be called? Searches on Google Maps for "celiac" only bring up Celiac advocacy centers and such, but no actual treatment center.

[Lisa]

There are no "treatment" centers. As you know, the only treatment is controlled by what you ingest.

Here is some information you may be interested in.

Open Original Shared Link

[Mey Marie]

My boss mentioned to me that it might be a good idea to get "officially" tested for Celiac. I already know gluten is the enemy, from my own experiences, including being accidentally gluten a few times (frosting on an otherwise gluten-free cupcake, crackers on fish, Fudgsicles, and a rotisserie chicken from ShopRite). And I know I feel better if I don't eat it, plus I've mostly (not entirely) gone through the "abnormally high hunger" hump. So there's no denying I have this problem. Plus my symptoms are more neurological rather than gastrointestinal.

My boss said that she knows someone with cancer, who somehow was allowed to try out an experimental cancer treatment not yet available to the public at large, and is doing much better on the treatment. She said that maybe if I was officially diagnosed with Celiac, I could sign on somehow for an experimental treatment (one is in the works, that is said to work by preventing your body from releasing too much zonulin and therefore letting gluten go through and setting off the immune system, and there's an experimental cure as well). Do you think that might be the case?

How do I get to sign up to try the experimental treatment? Are there benefits to being officially diagnosed for Celiac? Believe me, I want a treatment/cure as soon as I can, though I doubt I'm in any minority here when I say that!

What do you recommend?

Plus, what would such a treatment center be called? Searches on Google Maps for "celiac" only bring up Celiac advocacy centers and such, but no actual treatment center.

You really need to get tested and diagnosed. I think you might be getting ahead of yourself. And once you are diagnosed witch can take a while then you should talk to your Dr. They my have some happy news for you.

[CGally81]

You really need to get tested and diagnosed. I think you might be getting ahead of yourself. And once you are diagnosed witch can take a while then you should talk to your Dr. They my have some happy news for you.

Happy news? I sure hope so.

My doctor admitted he knows nothing about celiac. At least he's honest (I'd read horror stories of people whose own doctors didn't believe them, and even some who kept insisting it had nothing to do with gluten).

But what kind of "happy news" might I get?

Where would I go to get diagnosed? Gastroenterologists pretty much only detect celiac if there's significant blunting of the villi, and I'd been going gluten-free for a while. Well, mostly gluten-free, until I learned I'd still been getting glutened off Fudgsicles, and I removed those 2 weeks ago. But still, GE centers are said to have a high rish of false negatives.

So where would I get diagnosed at least for the genetic test, allergy tests, or other tests that are more conclusive?

[tarnalberry]

An experimental trial will not take you if you have not had a biopsy proven diagnosis. That's just standard practice for any celiac trial I've ever seen.

Additionally, while I am in favor of medical research, it's worth knowing that the zonulin-modifying drug that's being tested will NOT stop the autoimmune reaction - it occurs in the gut, not the bloodstream. It will reduce the likelihood of the antibodies created entering the bloodstream. It is a treatment only for contamination, not for being able to eat otherwise regularly gluten-containing food (like crackers on fish or fudgscicles).

Due to the downsides (insurance problems with a "pre-existing condition", ditto on life-insurance), I'm actually not a huge fan of an official diagnosis, when there isn't any significant treatment advantage, and the best treatment is one you do yourself without the intervention of a doctor. My view, however, is only my opinion, and I honestly do not think there is a *right* answer on this one. You have to figure out what is the best way to go for you and your life.

[CGally81]

An experimental trial will not take you if you have not had a biopsy proven diagnosis. That's just standard practice for any celiac trial I've ever seen.

Additionally, while I am in favor of medical research, it's worth knowing that the zonulin-modifying drug that's being tested will NOT stop the autoimmune reaction - it occurs in the gut, not the bloodstream. It will reduce the likelihood of the antibodies created entering the bloodstream. It is a treatment only for contamination, not for being able to eat otherwise regularly gluten-containing food (like crackers on fish or fudgscicles).

Due to the downsides (insurance problems with a "pre-existing condition", ditto on life-insurance), I'm actually not a huge fan of an official diagnosis, when there isn't any significant treatment advantage, and the best treatment is one you do yourself without the intervention of a doctor. My view, however, is only my opinion, and I honestly do not think there is a *right* answer on this one. You have to figure out what is the best way to go for you and your life.

I see your point about not letting insurance know. On the other hand, if I'm officially diagnosed, then once that vaccine comes (the one that's supposed to train the body to tolerate gluten again), I'll be able to possibly get a referral from my doctor to go get it, thus possibly letting my insurance cover the cost of the vaccine. Though I'll pay out of my own pocket if I have to, since ending this problem would be a huge relief.

I would like to at least get the DNA test or other such tests. My doctor admits he knows little about celiac, though he did refer me to a biopsy (which I chose not to go to, since I figured that if their false negative rate is so high, and I'd been going gluten-free, why bother?). How would I get about getting myself referred for tests?

And btw, to be honest, I expect to live gluten-free even after the vaccine. I'm autistic, and it's been discovered in the past few years that while gluten is a poison to celiacs, it's essentially a drug (along the lines of opium) to autistics. So I'd avoid most gluten even after the vaccine for a different health reason. It would still be an improvement!

[ENF]

When we did Enterolab we just filed a claim with the insurance company, and were reimbursed for most of the costs. No doctor of ours was involved in this at all. As you probably know, the results from Enterolab are not a diagnosis - they only show if you have genes and/or antibodies that are associated with Celiac and/or gluten sensitivity. The only accepted diagnostic tests for Celiac are the blood tests and endoscopy.

It's possible that you may still have enoungh villi damage left, since going gluten free, to get positive diagnosis from an endoscopy. I've had several such tests, and the last one showed villi damage even though I was gluten free for over a year.

[happygirl]

Drug trials will not take you unless you are biopsy-proven Celiac.

[CGally81]

When we did Enterolab we just filed a claim with the insurance company, and were reimbursed for most of the costs. No doctor of ours was involved in this at all. As you probably know, the results from Enterolab are not a diagnosis - they only show if you have genes and/or antibodies that are associated with Celiac and/or gluten sensitivity. The only accepted diagnostic tests for Celiac are the blood tests and endoscopy.

It's possible that you may still have enoungh villi damage left, since going gluten free, to get positive diagnosis from an endoscopy. I've had several such tests, and the last one showed villi damage even though I was gluten free for over a year.

Since my doctor admitted that he knows nothing about celiac, how can I get to such a lab and get such results? What would I search for on Google Maps to find such a place near me?

[mbrookes]

It seems to me that the first logical step would be to ask your present doctor to refer you to a GI who is familiar with celiac, possibly at a teaching hospital if there is one near by.

[ENF]

Since my doctor admitted that he knows nothing about celiac, how can I get to such a lab and get such results? What would I search for on Google Maps to find such a place near me?

You don't have to travel, EnteroLab does it through the mail. Again, EnteroLab's results are not considered to be a "diagnosis".

[CGally81]

It seems to me that the first logical step would be to ask your present doctor to refer you to a GI who is familiar with celiac, possibly at a teaching hospital if there is one near by.

GI? Gastro Intestinal? Teaching hospital?

He initially did refer me for I think an endoscopy, but I turned it down because at the time, I assumed they wouldn't find any villi damage, if I'd been going gluten-free for a while. I'd read there's high risk of false negatives for people who'd been going gluten-free.

What's the blood test about? That considered a good diagnosis? How can I get that?

[CGally81]

Drug trials will not take you unless you are biopsy-proven Celiac.

Biopsy as in the intestine check? What if my villi are no longer flattened? Is there any other way to be confirmed Celiac?

Btw, do you think this will affect my ability to get the vaccine later when it is released? I'm afraid that if I do a good enough job of living gluten-free for a few years, the visible damage will be undone, and I might not be able to prove that I have Celiac, and therefore unable to obtain the vaccine.

[CGally81]

Okay, how do I get signed up for the DNA check and such? The blood test to find out? My doctor admits he knows little about celiac, so he wouldn't know what kinds of blood tests to sign me up for, though at least he believes me about being celiac - about my self-diagnosis.

I know I could get to a GI doctor through him. He was originally going to sign me up for one, which I turned down, because I decided that the risk of false negatives was too high. But I might get one after all, if this is the only way to be accepted for drug trials. How do I sign up for drug trials though? This is something I'd have to actively do, right?

Anyway, how do I sign up for the DNA and blood tests for celiac, to confirm it for good?

Also, is there a way to determine the degree of gluten sensitivity? My family has a hard time believing that a simple CRUMB could be dangerous to my health. I had to explain that, since my body sees gluten as a disease, it builds antibodies against it to fight even the smallest amount, just like with actual disease - hence, small amounts will set it off. That made it more understandable, but still, I need to find out how sensitive I am, if possible, so I can at least be armed with that information.

[ravenwoodglass]

Okay, how do I get signed up for the DNA check and such? The blood test to find out? My doctor admits he knows little about celiac, so he wouldn't know what kinds of blood tests to sign me up for, though at least he believes me about being celiac - about my self-diagnosis.

I know I could get to a GI doctor through him. He was originally going to sign me up for one, which I turned down, because I decided that the risk of false negatives was too high. But I might get one after all, if this is the only way to be accepted for drug trials. How do I sign up for drug trials though? This is something I'd have to actively do, right?

Anyway, how do I sign up for the DNA and blood tests for celiac, to confirm it for good?

Also, is there a way to determine the degree of gluten sensitivity? My family has a hard time believing that a simple CRUMB could be dangerous to my health. I had to explain that, since my body sees gluten as a disease, it builds antibodies against it to fight even the smallest amount, just like with actual disease - hence, small amounts will set it off. That made it more understandable, but still, I need to find out how sensitive I am, if possible, so I can at least be armed with that information.

To get the DNA tests from Enterolab just put their name in a search engine to find them and then follow the instructitions they give you. They will send you a kit for stool sample collection and a swab to rub on the inside of you cheek for the gene tests.

Even if you were a firmly biopsy diagnosed celiac I would still encourage you to think long and hard before going into a drug trial for celiac. Usually these are blind trials with some folks getting the drug and some not but both groups will be given gluten. Then they look and see who reacts and who doesn't to the gluten they are being gliven. You would not know if you were in the group who gets the drug or the group that does not. So your risk of being made ill is pretty good IMHO.

The blood tests are going to be useless for you, as will the biopsy without a lengthy gluten challenge. You could go back to gluten eating for 3 months and then ask for the blood tests and biopsy but if you have an issue with gluten your body is really not going to like it.

When explaining it to your family, celiac is the disease, gluten is the toxin, or poison. When you injest gluten even in small amounts it starts an antibody reaction trying to protect you from the poison (gluten). It can start that reaction with even a very tiny amount reactivating the antibodies they then flow through the system causing the symptoms to flare.

[CGally81]

To get the DNA tests from Enterolab just put their name in a search engine to find them and then follow the instructitions they give you. They will send you a kit for stool sample collection and a swab to rub on the inside of you cheek for the gene tests.

Even if you were a firmly biopsy diagnosed celiac I would still encourage you to think long and hard before going into a drug trial for celiac. Usually these are blind trials with some folks getting the drug and some not but both groups will be given gluten. Then they look and see who reacts and who doesn't to the gluten they are being gliven. You would not know if you were in the group who gets the drug or the group that does not. So your risk of being made ill is pretty good IMHO.

The blood tests are going to be useless for you, as will the biopsy without a lengthy gluten challenge. You could go back to gluten eating for 3 months and then ask for the blood tests and biopsy but if you have an issue with gluten your body is really not going to like it.

When explaining it to your family, celiac is the disease, gluten is the toxin, or poison. When you injest gluten even in small amounts it starts an antibody reaction trying to protect you from the poison (gluten). It can start that reaction with even a very tiny amount reactivating the antibodies they then flow through the system causing the symptoms to flare.

Thanks! Do you think being proven to have the gene will help my chances later of being able to get the vaccine when it is finished and released to the public? I'd need "proof" that I have Celiac, right? I hope this would count as proof, despite the fact that the DNA merely shows my risk of getting it.

And good point about the drug trials. I'd hate to get the placebo, think I genuinely have the treatment, and get upset that "it" isn't working.

[tarnalberry]

No, DNA would not be "proof". But you may not need a blood or biopsy test for the doctor to decide you should have the potential vaccine. The criteria for the two are going to be vastly different.

Why is DNA not proof? Because about a third of the population has at least one gene for celiac. But only 1% of the population has celiac. Having the gene does not mean that the gene has been triggers - it can be silent all your life without a triggering event.

[GFinDC]

Hi CGalley81,

Prometheus Labs does celiac blood tests. I add a link to their web page. I haven't used them but they sometimes advertise on this board. I imagine others have used them. You might get more info on testing by checking out the pre-diagnosis and testing forum here. I'm sure there are other labs that do the antibodie tests too.

Open Original Shared Link

[VioletBlue]

There already is a cure; it's called a gluten free diet. That's all the "cure" I need or want.

How do I get to sign up to try the experimental treatment? Are there benefits to being officially diagnosed for Celiac? Believe me, I want a treatment/cure as soon as I can, though I doubt I'm in any minority here when I say that!

What do you recommend?

Plus, what would such a treatment center be called? Searches on Google Maps for "celiac" only bring up Celiac advocacy centers and such, but no actual treatment center.

[CGally81]

There already is a cure; it's called a gluten free diet. That's all the "cure" I need or want.

Well, for me the idea behind getting cured permanently is not so much to splurge on gluten (I'm autistic and shouldn't eat it because autistics convert gluten into opiates in their brain, so it's bad for me for a different reason that I'd been unaware of my whole life), but rather, so I won't have to freak out about, say, a possible bread crumb or any other miscellaneous cross-contamination. If my body can tolerate CC, that's good enough for me. My new diet consists only of healthy foods for the most part.

[CGally81]

Hi CGalley81,

Prometheus Labs does celiac blood tests. I add a link to their web page. I haven't used them but they sometimes advertise on this board. I imagine others have used them. You might get more info on testing by checking out the pre-diagnosis and testing forum here. I'm sure there are other labs that do the antibodie tests too.

Open Original Shared Link

Thanks. I might check them out. I hope they have a lab in New Jersey. I'd rather not do this by mail, but I'll do what I have to in order to get an "official" diagnosis.