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CGally81

Everything Came Back Normal

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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.

Actually, I insisted on waiting until the hunger went away (because it's insane right now, and there's no way I could last an entire day on just water at the moment!) before taking the tests... and the tests are to check for other things, rather than Celiac itself. He wants to rule out other possibilities, and he knows that I'd have to eat lots of gluten to get a positive result. He told me himself, and I told him there was no way I was going to poison myself for the test. So he decided it would be a good idea to at least do things that didn't require eating gluten. Like the DNA test, and tests for other conditions (to rule them out), and the immunologist visit.

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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.

Since my symptoms are neurological rather than just gastrointestinal, I don't think it's only "gluten intolerance" instead of Celiac. I'd read about the difference between the two; supposedly, people with the intolerance can handle small amounts of gluten, whereas Celiacs can handle absolutely none. Since I got glutened from amounts of gluten I couldn't see, I'm sure I have Celiac.

The gene testing was only done for HLA DQ2 and DQ8, and neither showed.

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Since my symptoms are neurological rather than just gastrointestinal, I don't think it's only "gluten intolerance" instead of Celiac. I'd read about the difference between the two; supposedly, people with the intolerance can handle small amounts of gluten, whereas Celiacs can handle absolutely none. Since I got glutened from amounts of gluten I couldn't see, I'm sure I have Celiac.

The gene testing was only done for HLA DQ2 and DQ8, and neither showed.

Enterolab can test you for the other genes if you feel the need. That was how I figured out which ones I have. Some would call me gluten intoelrant because I don't have those 2 genes, but my doctors firmly diagnosed me celiac years before I had genes tested.

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I would be curious to hear from the posters who are GI whether they can ingest gluten in any amount. I was thinking about what you said and what I have read on this forum. I could be mistaken but I can't remember any incidence of anyone with GI saying they could eat gluten without symptoms.

The way I understand it GI can have the same reactions to gluten as those with celiac disease. There are many who are of the opinion that GI is celiac disease that hasn't done visible damage to the intestine yet. Really I don't think the medical community is in agreement about all the differences between the two. Either way it's the gluten-free diet for us!

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Cgally, not all celiacs are either DQ2 or DQ8. I have read of MANY cases (including some members here) of biopsy-diagnosed celiacs who have other genes.

I believe this is simply a case of the accepted scientific knowledge not having yet caught up with reality.

It used to be accepted scientific "knowledge" that autism was caused by "refrigerator mothers." We know now that that assumption was totally off base.

It also used to be common medical "knowledge" that celiac children "outgrew" celiac after several years, and could then eat gluten with no damage. We know now that that is wrong, also. Those children simply healed from the gluten-free diet; after resuming a gluten-free diet, damage resumed before symptoms did.

My point is, doctors still cling to incorrect, old assumptions as being inarguable fact--and in the case of celiac genetics, it's been proven that you CAN have celiac disease and NOT have DQ2 or DQ8.

Also, if your blood work was done while you were gluten-free or even gluten-lite, then the results are not valid. You must consume the equivalent of 4 slices of gluteny bread per day for at least 3 MONTHS in order for your body to make enough antibodies to show up in blood work.

I believe that the idea that people can have "only" gluten intolerance and can handle small amounts of gluten is a myth, with its root in the above-mentioned idea that children could outgrow celiac.

The fact that some of us can eat gluten with no obvious immediate symptoms does NOT mean that there is no internal damage going on. That one has also been proven by studies, showing that as little as 1/48 of a slice of bread causes VISIBLE villi damage, even in the absence of symptoms.

See http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/ and https://www.celiac.com/articles/38/1/How-mu...liac/Page1.html

I also believe that it is a mistake to get hung up about whether it is celiac disease or "only" gluten intolerance. If it's possible for gluten intolerance to be an early manifestation of celiac, then it's the same outcome either way--a gluten-free diet. Period.

But if you continue to eat small amounts of gluten, thinking that you are "only" gluten intolerant, and not celiac , then I believe you have a very high risk of further damage down the road. As many here can attest, sometimes that damage can be irreversible.

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Okay, I don't want to hijack this thread, but does all this that everyone's writing about DNA testing and there being more than one Celiac gene mean that if I got tested through Enterolab, and they told me I didn't have the genes for Celiac, that might be wrong?

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Since my symptoms are neurological rather than just gastrointestinal, I don't think it's only "gluten intolerance" instead of Celiac. I'd read about the difference between the two; supposedly, people with the intolerance can handle small amounts of gluten, whereas Celiacs can handle absolutely none. Since I got glutened from amounts of gluten I couldn't see, I'm sure I have Celiac.

The gene testing was only done for HLA DQ2 and DQ8, and neither showed.

From what I understand, it all depends on the individual. Many non-Celiac Gluten Intolorance individuals are extremely sensitive -- many are even more sensitive than those who have Celiac.

This is one reason why some people with Celiac go undiagnosed for years, or forever . . . not all of them have visible symptoms. This is frightening because those poor folks villi are being destroyed, and they don't even know it because they feel fine.

I am one of those highly sensitive individuals with gluten-intolorance. I cannot handle even the smallest amount of gluten without getting a reaction. It has definitely been a challenge, but I feel so much better now, it has been worth it.

The difference, at least as medical science now stands, is that those with Celiac have an auto-immune disorder while those with gluten-intolorance do not.

The symptoms can be the same as Celiac (see the list of symptoms in my signature) . . . but someone without Celiac has no damage to villi . . . IF, of course, they have been diagnosed correctly.

However, those with gluten-intolorance MAY have other DQ genes that were not tested, for example, those for gluten ataxia.

I have not been tested for those genes, although because I have other neurological problems, I may very well have the gene for gluten ataxia.

Right now, since I'm following a strict gluten-free diet regardless, I'm currently opting not to go for further testing. I think it is safer not to have anything on my records for insurance purposes.

To the original poster here: Doctors are taking gluten-intolorance more and more seriously by the day. If you have it, you shouldn't need a diagnosis of Celiac for those around you to understand and support you.

There's a good explaination of tests and gluten-intolorance in a book entitled Healthier Without Wheat, by Stephen Wangen. He has a very healthy respect for gluten-intolorance, and he gets quite annoyed with physicians who look only for Celiac and nothing else.

In my blood work, my gliadin came back very high, which can indicate gluten-intolorance. I also did the gluten challenge before they ran the test.

Anyway, if you read Healthier Without Wheat, you'll see that Wangen feels that those who have high gliadin (but all other tests negative) are, in his opinion, definitely gluten-intolorant and should be respected as such.

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From what I understand, it all depends on the individual. Many non-Celiac Gluten Intolorance individuals are extremely sensitive -- many are even more sensitive than those who have Celiac.

This is one reason why some people with Celiac go undiagnosed for years, or forever . . . not all of them have visible symptoms. This is frightening because those poor folks villi are being destroyed, and they don't even know it because they feel fine.

I am one of those highly sensitive individuals with gluten-intolorance. I cannot handle even the smallest amount of gluten without getting a reaction. It has definitely been a challenge, but I feel so much better now, it has been worth it.

The difference, at least as medical science now stands, is that those with Celiac have an auto-immune disorder while those with gluten-intolorance do not.

The symptoms can be the same as Celiac (see the list of symptoms in my signature) . . . but someone without Celiac has no damage to villi . . . IF, of course, they have been diagnosed correctly.

However, those with gluten-intolorance MAY have other DQ genes that were not tested, for example, those for gluten ataxia.

I have not been tested for those genes, although because I have other neurological problems, I may very well have the gene for gluten ataxia.

Right now, since I'm following a strict gluten-free diet regardless, I'm currently opting not to go for further testing. I think it is safer not to have anything on my records for insurance purposes.

To the original poster here: Doctors are taking gluten-intolorance more and more seriously by the day. If you have it, you shouldn't need a diagnosis of Celiac for those around you to understand and support you.

There's a good explaination of tests and gluten-intolorance in a book entitled Healthier Without Wheat, by Stephen Wangen. He has a very healthy respect for gluten-intolorance, and he gets quite annoyed with physicians who look only for Celiac and nothing else.

In my blood work, my gliadin came back very high, which can indicate gluten-intolorance. I also did the gluten challenge before they ran the test.

Anyway, if you read Healthier Without Wheat, you'll see that Wangen feels that those who have high gliadin (but all other tests negative) are, in his opinion, definitely gluten-intolorant and should be respected as such.

Thanks for the heads up on the book Lynayah and info on gluten intolerance. From what you say, it may be there just isn't that much discernable difference between severe cases of gluten intolerance and celiac. I want to read that book... I think doctors need to expand their definitions since eating gluten seems to be hard on a lot more people than just those with celiac. Sounds like testing now for celiac etc. is a hit or miss thing with the current technology as well as theories as to what is actually causing it as well as its effects.

Bea

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From what I understand, it all depends on the individual. Many non-Celiac Gluten Intolorance individuals are extremely sensitive -- many are even more sensitive than those who have Celiac.

This is one reason why some people with Celiac go undiagnosed for years, or forever . . . not all of them have visible symptoms. This is frightening because those poor folks villi are being destroyed, and they don't even know it because they feel fine.

I am one of those highly sensitive individuals with gluten-intolorance. I cannot handle even the smallest amount of gluten without getting a reaction. It has definitely been a challenge, but I feel so much better now, it has been worth it.

The difference, at least as medical science now stands, is that those with Celiac have an auto-immune disorder while those with gluten-intolorance do not.

The symptoms can be the same as Celiac (see the list of symptoms in my signature) . . . but someone without Celiac has no damage to villi . . . IF, of course, they have been diagnosed correctly.

However, those with gluten-intolorance MAY have other DQ genes that were not tested, for example, those for gluten ataxia.

I have not been tested for those genes, although because I have other neurological problems, I may very well have the gene for gluten ataxia.

Right now, since I'm following a strict gluten-free diet regardless, I'm currently opting not to go for further testing. I think it is safer not to have anything on my records for insurance purposes.

To the original poster here: Doctors are taking gluten-intolorance more and more seriously by the day. If you have it, you shouldn't need a diagnosis of Celiac for those around you to understand and support you.

There's a good explaination of tests and gluten-intolorance in a book entitled Healthier Without Wheat, by Stephen Wangen. He has a very healthy respect for gluten-intolorance, and he gets quite annoyed with physicians who look only for Celiac and nothing else.

In my blood work, my gliadin came back very high, which can indicate gluten-intolorance. I also did the gluten challenge before they ran the test.

Anyway, if you read Healthier Without Wheat, you'll see that Wangen feels that those who have high gliadin (but all other tests negative) are, in his opinion, definitely gluten-intolorant and should be respected as such.

Gluten ataxia - does that cause the "zone out and feel like a zombie and be unable to concentrate if you eat gluten" symptom? How about the blood sugar plummet?

My symptoms are both neurological and gastrointestinal.

I'm going through the "hungry all the time" recovery phase (it gets better and worse, though gradually better overall), and my withdrawal symptoms have mostly subsided. Also, L-Glutamine helps stop symptoms in a real hurry, if I'd eaten gluten.

Your list of symptoms includes some that I have, yet you're considered non-Celiac, even with vitamin deficiency! If the symptoms are identical other than the villi damage, then what? Does this mean that the cure for Celiac will not help those who "only" have gluten intolerance? I hope they find a way to fix that! A future cure for Celiac is promising, but the rest of us need something too!

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Does this mean that the cure for Celiac will not help those who "only" have gluten intolerance? I hope they find a way to fix that! A future cure for Celiac is promising, but the rest of us need something too!

If you are referring to the work the Stanford and/or Australian Researchers are conducting -- I think you'll find that many with gluten issues would prefer to continue living Gluten Free.

When I was first diagnosed I thought it would be great if there could be a way to eat gluten safely -- I've changed my mind and now ask -- Why would I want medical intervention for a disease that has cure that is completely within my own power?

I would not wish my worst enemy the life I've led for the past three years -- and the preceding 25 years that our medical system missed prevention of the train wreck in my body -- I am thankful each day that everyone suffering from gluten, whether intolerant or celiac has the capability to improve their health within their own control.

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If you are referring to the work the Stanford and/or Australian Researchers are conducting -- I think you'll find that many with gluten issues would prefer to continue living Gluten Free.

When I was first diagnosed I thought it would be great if there could be a way to eat gluten safely -- I've changed my mind and now ask -- Why would I want medical intervention for a disease that has cure that is completely within my own power?

I would not wish my worst enemy the life I've led for the past three years -- and the preceding 25 years that our medical system missed prevention of the train wreck in my body -- I am thankful each day that everyone suffering from gluten, whether intolerant or celiac has the capability to improve their health within their own control.

This cure will benefit future generations too.

But anyway, I don't intend to go back to whole wheat bread and toast. As an autistic individual, I can't have that stuff anyway; I noticed I felt less "urges" to say/do socially inappropriate things when I stopped eating it.

However, it would be nice to not be paranoid about trace amounts of gluten that I can't see, etc. So yes, I do want a cure for myself.

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Hi CGally,

Regarding the gene testing. A while back I saw an article somewhere on line about researchers finding around 32 or 36 more genes related to Crohns' Disease than what had been previously recognized. It is not like the medical community knows everything there is to know about celiac or any disease for that matter. You know they say about 30% of the US population has the known celiac genes. Yet only about 1% develop active celiac. That is quite a big gap. So 29% of the population should have celiac according to the genes, but don't. Meanwhile there are a large number of people who are branded with IBS (irritable bowel syndrome). Some of the 29% are probably gluten intolerant. It could be that the main trigger for celiac is not even one of the usual genes recognized. I would be interested to know how many of the people branded with IBS carry the celiac genes. There is a big disconnect in the medical knowledge here.

I don't remember the term for it, but there is some study being done on generational genetics now. The idea being that the environment a person lives in can affect the diseases that appear in their children or grandchildren. So say your grandmother starves her first 9 years of life and you end up living a longer than other people on average. Or your grandfather eats plenty of food his first 13 years of life and you end up dying sooner than others. I don't know if this idea is right or not, but it points out some possible complications to exactly determining how genes can affect us. It may not be as simple as you have this gene so therefore you have this disease. Anyway I saw a program on this generational gene thing on PBS a while back, but I ain't no expert on it.

I guess what I mean to say is you won't find a lot of 100% answers on some of these issues. Medical knowledge just hasn't gotten there yet and may never get there for that matter. The old medical joke is still good advice though. If it hurts don't do it. ;)

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Thanks for the heads up on the book Lynayah and info on gluten intolerance. From what you say, it may be there just isn't that much discernable difference between severe cases of gluten intolerance and celiac. I want to read that book... I think doctors need to expand their definitions since eating gluten seems to be hard on a lot more people than just those with celiac. Sounds like testing now for celiac etc. is a hit or miss thing with the current technology as well as theories as to what is actually causing it as well as its effects.

Bea

Agreed!

For me, I assume I may have an undetected auto-immune disorder of one sort or another and eat very carefully. I worry about those who have been diagnosed with non-celiac gluten-intolerance because they might have genes that cause other parts of their body to break down OR they may have been misdiagnosed.

Sadly, some with low-sensitivity gluten-intolerance allow themselves to cheat occasionally thinking that they aren't really doing any damage to their body.

Perhaps they aren't, and I hope that is the case . . . but something in my gut (pun intended) tells me that those with non-celiac gluten-intolerance need to be as careful as those with Celiac.

Time will tell. For now, I am not taking any chances.

CGally81: I guess what all of this is saying is that, right now, you should work really hard at finding books, threads, or whatever documentation you might need to make sure that your family and friends take you seriously. Celiac is, as they say, only "the tip of the iceburg" when it comes to gluten-intolorance disorders.

Just because you might not have Celiac doesn't mean anyone should assume you are not very sick, and it most certainly doesn't mean others shouldn't respect your need to eat gluten free.

Also, if meds for Celiac someday happen (and I predict they will because it is most certainly driving drug companies CRAZY that they can't make any money on us right now), I predict it will aid those with gluten-intolorance, gluten-ataxia, Celiac and whatever else might be out there.

Whether or not the prescription will be safe and worth taking will be another matter, but in the meantime, good for you for hanging on to your hopes. Hope is a good thing.

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CGally81: I guess what all of this is saying is that, right now, you should work really hard at finding books, threads, or whatever documentation you might need to make sure that your family and friends take you seriously. Celiac is, as they say, only "the tip of the iceburg" when it comes to gluten-intolorance disorders.

Just because you might not have Celiac doesn't mean anyone should assume you are not very sick, and it most certainly doesn't mean others shouldn't respect your need to eat gluten free.

Also, if meds for Celiac someday happen (and I predict they will because it is most certainly driving drug companies CRAZY that they can't make any money on us right now), I predict it will aid those with gluten-intolorance, gluten-ataxia, Celiac and whatever else might be out there.

Whether or not the prescription will be safe and worth taking will be another matter, but in the meantime, good for you for hanging on to your hopes. Hope is a good thing.

My family does take me seriously now, actually, even with the tests coming back negative. But I really want to know exactly what I have, so when treatments/cures for various things come out, I'll know what to get, to put a stop to this once and for all.

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My family does take me seriously now, actually, even with the tests coming back negative. But I really want to know exactly what I have, so when treatments/cures for various things come out, I'll know what to get, to put a stop to this once and for all.

I am glad your family is finally getting it. I guess seeing is believing--eventually... Thank heavens for that, eh?

Its good to know what is what but sometimes hard to manifest. As time goes on more will be known hopefully. there are a multiplicity of other areas of the body that gluten can negatively affect than just the intestines.

I am certainly one of those who also has reactions to gluten in other parts of her body as well as the intestines (though for me I did not get D prior to going off all trace gluten)--esp. my lungs and kidneys. Plus it also adversely affected my nervous system and heart etc. and led to multiple mineral and B vitamin deficiencies. It helps to know what deficiencies you might have. Sometimes tracking the symptoms can help you begin to find the shape of the disease.

Using caution and pro-activity will also help you avoid or alleviate other auto immune problems--so in a way knowing you have some of these problems will help you be ahead of the game, especially as you get older. I started out with all kinds of health problems since I was a child for instance but now am a lot healthier than most of the rest of my family--plus look years younger than my age in part I think due to eating a very healthy diet -- which is in fact far better than what most people eat these days.

Bea

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I went to an allergist, and he says it's likely that I have non-Celiac gluten intolerance. He says the "neurological" symptoms (brain fog, depression, after eating gluten) could be considered physical, and caused by non-Celiac gluten intolerance itself.

I turned out negative for food allergies.

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