Enterolab

[Rachel--24]

I hate to see people, who are trying the diet just in case in helps, have no improvement after a month and don't know if the problem is that they're not doing the diet 100% yet, or if they're chasing another rainbow that will lead to even more disappointment.

Not everyone gives up on the diet after one month. I've been on the diet for 2 years now even though I knew there had to be more going on with me within the first 3 or 4 months. I plan on remaining gluten-free until all of my other problems are resolved....at that time I will challenge it and see what happens.

I think people should trust their instincts and listen to their bodies. If you follow the diet and still feel like things are not right....maybe there is more involved. Its not always as simple as the gluten-free diet will solve everything or solve nothing. Its sometimes just one symptom stemming from another issue....and for that reason I think people should remain on the diet while pursuing other possibilities as Vincent already stated.

People dont have to stop their diet in order to look into other possibilities...they can do this while remaining gluten-free just as I (and many others) have done.

Anyone can spend the $$ for Enterolab if they feel they need that paper to try the diet. However, I dont think alot of these people are aware that this test isnt diagnostic of Celiac and that having gluten sensitivity genes is pretty much guaranteed. I know I wasnt aware of this when I spent $350 on the the test.

I know alot of foods arent good for me to eat right now due to leaky gut and other issues. Gluten and dairy are at the top of a very long list. I just dont eat the foods that cause me harm. If I were just learning of Enterolab now I wouldnt pay Dr. Fine to tell me what I already know.

[Mtndog]

I didn't do the Enterolab testing (although I thought VERY seriously about it). I really pursued an MD diagnosis which took about a year and a half. I NEEDED something to tell me that I wasn't crazy (I know- I am crazy but that's another story ).

I basically had borderline positive bloodwork, a negative endoscopy and at first a very positive response to the diet. By the time I saw the GI I see now, who thought doing a gluten challenge just for a "gold standard' biopsy was BS because of how sick we knew it made me, I had been gluten-free for about 15 months so she just did the gene test and decided the gene and the posistive dietary response were enough for a diagnosis.

I think people have done a good job of critically analyzing the pros and cons of Enterolab, but I'm for Enterolab if you need that confirmation that you are gluten-sensistive for any reason (complying with the diet, not driving yourself crazy).

Being published in a peer-reviewed journal would validate what he is doing, but it SEEMS to me he's more dedicated to helping people find, at least some, answers. Even if it's only one piece of a puzzle, it's a piece.

[VydorScope]

I was considering Entorlab for validating my gluten challenge for my son since his communication is still limited (hey is is only 3!) All we have to go by is his behavior and his stools which all look normal. On further investigation we found out that Entrolab ONLY tests IgA making it useless for us since his IgA score originally was 0.1 at the height of his sickness. IF they also tested IgG, which his was elevated at that time, then we would seriously consider the IgG test through them to validate or cast doubt on our conclusions based on his outward response to the challenge.

So I do think there is good use for their testing (esply ppl like me WITH OUT MEDICAL INS making seeing a GI not really an option), just not in my case this time.

[Rachel--24]

Being published in a peer-reviewed journal would validate what he is doing, but it SEEMS to me he's more dedicated to helping people find, at least some, answers.

I have to agree with this. I do think Dr. Fine is legit and that his intentions are good. I think he is sincere in what he is doing. However, I think he will run into problems once (or if) he publishes for peer review. I dont think the tests will be validated and I dont think they will ever be accepted by mainstream. This is just my opinion though. I do hope he proves me wrong.

[chrissy]

do you think this has anything to do with the reason that he hasn't published yet------"he's getting everything ready for publishing" is easy to keep saying, but isn't he running the risk of losing support from people the longer he puts it off?

[Rachel--24]

do you think this has anything to do with the reason that he hasn't published yet------"he's getting everything ready for publishing" is easy to keep saying, but isn't he running the risk of losing support from people the longer he puts it off?

He does risk losing the support of people the longer he puts it off. He cant put it off forever....eventually people will truelly begin to lose faith. I think that either way he's going to lose support...but by putting it off he is probably doing alot better than he will be once he publishes.

Thats my feeling anyway....I think if he were 100% confident in the valididty of the tests he would have published by now. I do realize that things take time but he's been saying that he's "almost there" for quite some time now.

[Nantzie]

Nancy...I did not say everyone would still continue to have problems...I said the vast majority who test positive for gluten antibodies through Enterolab still continue to have problems despite the diet.

I always have you in mind as being an exception since you are the only one I'm aware of on this board who got well and does not carry a Celiac gene. There may be one or two others....but the vast majority do not experience this kind of improvement.

Just from posting on this board for 2 years I can see that most people continue to have symptoms...sometimes even worse after removing gluten.

Okay Rachel... Forget Enterolab and the pros and cons, I've just got to say something off-topic here.

I wasn't going to address this because I didn't want to make waves, and wanted to keep this on-topic, but this is really eating at me and I'm just going to have to say something.

First of all, I really respect and admire how you and so many other people in the OMG thread do so much to help people "when the gluten-free diet isn't enough", as the thread's subtitle says. All of the awareness that is brought to the board about Lyme and thyroid and Crohn's and other food and chemical intolerances is incredible. You give hope, encouragement and new paths to people who don't fit into the celiac box. So many people find answers just because you're here.

Please, have some respect for other people who also don't fit into the celiac box, and those that are trying to help them, even if it's regarding something you don't agree with. Inferring that non-celiac gluten intolerance isn't to be taken as seriously as celiac can have life-long consequences for people who might be thisfriggingclose to finding an answer.

And come on, I am absolutely not the only person here, or an anomaly of only two or three, who had significant and life-changing improvement on the gluten-free diet. Saying that is so uninformed. Even my own little GI doctor told me that he has 3 or 4 patients who do not have celiac, but whose symptoms completely went away on the gluten-free diet. My regular doctor, the last time I saw her six months ago said that she had 7 people who had normal blood tests and normal biopsies who had immediate and dramatic improvement on the gluten-free diet. That's one set of doctors in one town.

Just because someone doesn't have one of the two celiac genes doesn't mean they don't have an autoimmune response to gluten. Researchers know that they haven't identified all of the genes that are responsible for gluten issues. Let's not carve a line in rock over issues that have only been researched for about the last 10 years. It's going to be a long road of a lot of research before we find all the answers to any of this.

You wouldn't stand for someone inferring that Lyme shouldn't be taken seriously because you KNOW from personal experience how very serious it is. And I'm not going to stand for people inferring that gluten intolerance isn't to be taken just as seriously as celiac or thyroid or Lyme or anything else that people are suffering with. Because I know from personal experience too.

I would never infer to people that they shouldn't take Lyme seriously. Because I don't have it and don't know anything about it. Please give the same respect and leeway to people who have gluten intolerance and not celiac.

Nancy

[AndreaB]

Just because someone doesn't have one of the two celiac genes doesn't mean they don't have an autoimmune response to gluten. Researchers know that they haven't identified all of the genes that are responsible for gluten issues. Let's not carve a line in rock over issues that have only been researched for about the last 10 years. It's going to be a long road of a lot of research before we find all the answers to any of this.

You wouldn't stand for someone inferring that Lyme shouldn't be taken seriously because you KNOW from personal experience how very serious it is. And I'm not going to stand for people inferring that gluten intolerance isn't to be taken just as seriously as celiac or thyroid or Lyme or anything else that people are suffering with. Because I know from personal experience too.

Well stated Nancy. I also agree with the fact that gluten intolerance is to be taken seriously, and also that the discovery of genes isn't necessarily complete.

I also agree that if symptoms don't totally resolve after some time (and that's different with everyone), or if new symptoms appear that further testing should be pursued.

[Mtndog]

Well stated Nancy. I also agree with the fact that gluten intolerance is to be taken seriously, and also that the discovery of genes isn't necessarily complete.

I also agree that if symptoms don't totally resolve after some time (and that's different with everyone), or if new symptoms appear that further testing should be pursued.

It has always bothered me that doctors make a distinction between gluten-intolerance and Celiac. They make gluten-intolerance sound like lactose intolerance- oh, you can eat it but you'll have a reaction. No damage done though.

I think that is WRONG (and i see a GI who is a celiac specialist at one of the best hospitals in the country and their literature states this). And even if it is right, why would you chance it?

[confused]

Okay Rachel... Forget Enterolab and the pros and cons, I've just got to say something off-topic here.

I wasn't going to address this because I didn't want to make waves, and wanted to keep this on-topic, but this is really eating at me and I'm just going to have to say something.

First of all, I really respect and admire how you and so many other people in the OMG thread do so much to help people "when the gluten-free diet isn't enough", as the thread's subtitle says. All of the awareness that is brought to the board about Lyme and thyroid and Crohn's and other food and chemical intolerances is incredible. You give hope, encouragement and new paths to people who don't fit into the celiac box. So many people find answers just because you're here.

Please, have some respect for other people who also don't fit into the celiac box, and those that are trying to help them, even if it's regarding something you don't agree with. Inferring that non-celiac gluten intolerance isn't to be taken as seriously as celiac can have life-long consequences for people who might be thisfriggingclose to finding an answer.

And come on, I am absolutely not the only person here, or an anomaly of only two or three, who had significant and life-changing improvement on the gluten-free diet. Saying that is so uninformed. Even my own little GI doctor told me that he has 3 or 4 patients who do not have celiac, but whose symptoms completely went away on the gluten-free diet. My regular doctor, the last time I saw her six months ago said that she had 7 people who had normal blood tests and normal biopsies who had immediate and dramatic improvement on the gluten-free diet. That's one set of doctors in one town.

Just because someone doesn't have one of the two celiac genes doesn't mean they don't have an autoimmune response to gluten. Researchers know that they haven't identified all of the genes that are responsible for gluten issues. Let's not carve a line in rock over issues that have only been researched for about the last 10 years. It's going to be a long road of a lot of research before we find all the answers to any of this.

You wouldn't stand for someone inferring that Lyme shouldn't be taken seriously because you KNOW from personal experience how very serious it is. And I'm not going to stand for people inferring that gluten intolerance isn't to be taken just as seriously as celiac or thyroid or Lyme or anything else that people are suffering with. Because I know from personal experience too.

I would never infer to people that they shouldn't take Lyme seriously. Because I don't have it and don't know anything about it. Please give the same respect and leeway to people who have gluten intolerance and not celiac.

Nancy

Well from someone who had a postive blood work and no celiac gene, i know not all of the celiac genes have been found.

paula

[AndreaB]

Well from someone who had a postive blood work and no celiac gene, i know not all of the celiac genes have been found.

Paula,

Are you a DQ7?

[Rachel--24]

Please, have some respect for other people who also don't fit into the celiac box, and those that are trying to help them, even if it's regarding something you don't agree with. Inferring that non-celiac gluten intolerance isn't to be taken as seriously as celiac can have life-long consequences for people who might be thisfriggingclose to finding an answer.

Nancy,

First of all I think you are way off base here and totally misinterpreting my posts. Although I agree with most of what you are saying I do not agree with your impression of me or of my views on non-celiac gluten intolerance...or Lyme for that matter.

So since you brought the issue up...I will address it here and now.

Inferring that non-celiac gluten intolerance isn't to be taken as seriously as celiac can have life-long consequences for people who might be thisfriggingclose to finding an answer.

Fisrt...I did not infer that Celiac is more serious than non-celiac. An autoimmune response is an autoimmune response is an autoimmune response. Scientifically they are NOT the same and lets not pretend that they are.

An intolerance due to other causes CAN be temporary....an intolerance due to Celiac Disease is life-long. Clearly they are two seperate things and we cant fit everyone into the "Celiac box" that you speak of.

Obviously I remain on this diet because I take the intolerance just as seriously as I would if it were Celiac...however, I do believe that this wont be permanent if my other problems are resolved in the future.

In no way have I stated that people should not take this diet seriously...EVER...in any of my posts during my 2 years on this board. I'm sorry if the fact that some people DO NOT have celiac in some way offends you. People do want to have an understanding of the difference between the two.

Regarding the diet there is no difference...we all know that. As long as someone is intolerant to gluten they should not consume it...period. If the gluten intolerance is caused by another issue which can be resolved...why is this somehow a threat to you or others who are on this diet??

Everyone has the right to have all the info put in front of them so that they can decide for themselves which road to take in searching for answers to their health problems.

I came on here to give my opinion on Enterolab and for some reason you are offended that my opinion differs from your own. My experience has been different from yours and as I stated earlier...MANY people posting here that have went through Enterolab and did not have clear results for Celiac are still having problems. The fact that the OMG thread is well over 1000 pages clearly demonstrates this issue.

My statement does not infer that Celiac is "more serious"...my statements are based on the fact that a non-celiac intolerance is generally caused by something which hasnt been identified....which is why many people dont have complete resolution of symptoms.

To assume that EVERY person has Celiac (regardless of lab results) and that the conditions are "one in the same" may deter a person from looking further into why they still dont feel right.

I believe that whether the cause of the gluten intolerance is Celiac, or candida overgrowth, or bacteria infection, or leaky gut, or mercury....etc...etc...the diet is still equally important. Therefore I do not understand your fears. Why does it offend you that someone who hasnt had the success that you've had may want to look into other causes for their symptoms?? It really shouldnt bother you...the important thing is that people get the answers they need to regain their health.

If gluten is only one small piece of a larger puzzle...well then its good that they found this board and learned what they need to know about the diet...but still....why insist that every person should stop here. If they still dont feel right and want more answers...then they deserve to get those answers.

I think its truelly amazing what the diet has done for you and I'm happy you got the desired results...unfortunately not everyone is so lucky. I see it everyday on this board...people struggling with the same stuff I've been struggling with the past 5 years.

I dont go around the board responding to these people as I would like to...out of respect for you and any others who may take offense. The discussions remain in the OMG thread unless someone asks for info. outside that thread.

I have respect for you and all those here offering assistance re: the gluten-free diet. Everyone does a fabulous job. I dont know why my stance on Enterolab somehow makes you feel as if I have no respect for those of you trying to help others as well. You make it sound as if whenever I dont agree with something that is said....I am interfering or trying to prevent people from getting help?? I simply stated my opinion on Enterolab....this is an open forum and I'm not the only one who is expressing concern over the validity of these tests. I'm entitled to my opinion just as you are. I do not attack others for having differing opinions....I have never done that. I have respect for your opinions and I would hope that you could also have respect for mine.

My regular doctor, the last time I saw her six months ago said that she had 7 people who had normal blood tests and normal biopsies who had immediate and dramatic improvement on the gluten-free diet. That's one set of doctors in one town.

Both of my own GI's could say the same about me....and NONE of my Dr.'s have ever questioned that I DO have gluten intolerance. They also were very certain that I need to be on this diet regardless of my genes and regardless of the negative blood/biopsy. The improvement was THAT dramatic.

So...I have never disputed the fact that the gluten-free diet is very effective when a person is having an immune response....I've been there and this is why I stay on the diet. All of my previous Dr.'s and all of my current Dr.'s have been in agreement that I should not consume gluten.

In my case Celiac is not the cause of all this...therefore even though I had remarkable improvement...I was still not back to where I would like to be....not even close. I have many other food intolerances and I dont feel that this is "normal" and I wasnt willing to accept a growing list of intolerances and sensitivities based on Dr. Fines unproven test. I have since found out that I'm not alone in feeling this way.

Just because someone has dramatic improvement on the diet doesnt mean that all their problems are over. If you were to talk to my previous Dr.'s they might tell you that I made dramatic changes just by eliminating gluten and that I'm fine today...they might count me as one of their 7 patients who have "gotten better" on the diet alone...with no gene and no celiac diagnosis. They dont know what I'm dealing with now because they dont see me anymore.

So yes...you can count me into the group that had immediate and dramatic improvement on the diet.

Just because someone doesn't have one of the two celiac genes doesn't mean they don't have an autoimmune response to gluten. Researchers know that they haven't identified all of the genes that are responsible for gluten issues. Let's not carve a line in rock over issues that have only been researched for about the last 10 years. It's going to be a long road of a lot of research before we find all the answers to any of this.

I am very aware that not all genes have been identified at this time. 1-2% of diagnosed Celiacs dont carry either gene....my own GI would not consider my genes in ruling out Celiac based on the fact that there are unidentified genes.

My point is not about the genes....although if I DID carry a main Celiac gene I would consider remaining gluten-free for life even if I'm not positive for Celiac. For myself.....with being as sick as I was and having all negative tests for Celiac and negative genes...and lack of total improvement on the diet...I think its fair to say I dont have Celiac. What Dr. Fine indentified was elevated anti-gliadin antibodies caused by a very leaky gut due to other conditions.

If someone (such as yourself) has no Celiac genes and still recovers completely from the diet alone...why would I have a problem with that?? I wish everyone could have those results. I dont care about the genes....if the diet worked for me and all was normal now....I would not be concerned about genes....I would only be happy that I'm feeling good and that I had an answer.

My concern is that there are people (such as myself) who do NOT recover completely and who do not have any real indication of Celiac other than Dr. Fine's test. I'm concerned about people here with "sensitivity" genes being told that they have Celiac...because the genes dont matter...the traditional tests dont matter....the fact that they are not improving doesnt matter...etc..etc.

People should know that Enterolab is not diagnostic and that the "sensitivity" genes are not accepted by anyone outside of Enterolab. This is the only reason I brought up the genes. So that those who are under the impression that this means they have been diagnosed can fully understand that *everyone* carries these genes....they dont mean anything IMO.

I have always said the BEST test is simply listening to your body. If you remove gluten and improve....and continue to improve...then you have your answer. If you remove gluten and improve...but not to your satisfaction...there *may* be other issues getting in the way of healing.

You wouldn't stand for someone inferring that Lyme shouldn't be taken seriously because you KNOW from personal experience how very serious it is. And I'm not going to stand for people inferring that gluten intolerance isn't to be taken just as seriously as celiac or thyroid or Lyme or anything else that people are suffering with. Because I know from personal experience too.

I would never infer to people that they shouldn't take Lyme seriously. Because I don't have it and don't know anything about it. Please give the same respect and leeway to people who have gluten intolerance and not celiac.

To me this is the most troubling part of your post. I have NEVER siad that Lyme is more serious than gluten intolerance...or anything else for that matter. I think you are very much missing the point....which is that in SOME cases....there is a real and "indentifiable" cause for the gluten intolerance. The gluten intolerance did not manifest on its own...something caused it to happen.

This does not make gluten intolerance any less serious...it means that if Celiac is NOT the cause and the diet is NOT the whole answer....it might be worthwhile to find out what might be behind the gluten intolerance.

I will use Autism as an example....the gluten-free/casien free diet is VERY helpful to these kids...some do have Celiac but the majority do not....still the diet can help tremendously. These kids have infections and leaky gut and a whole host of other problems which have caused them to become intolerant to gluten. Eliminating gluten (although improvement may be dramatic) is generally not going to solve the puzzle of Autism. Adults sometimes have similar puzzles.

I take gluten intolerance very seriously and I although I'm not here to argue I really dont appreciate your uninformed and unsubstantiated statements regarding my views on gluten intolerance/Celiac. Its simply untrue.

You are making blind assumptions that really have no basis. I dont think of Lyme as more serious than Gluten Intolerance....and I had to laugh at your comments. If you had actually read any of what I've written about Lyme on the Omg thread you would have read that I dont think Lyme is causing ANY of my symptoms. I am not very concerned about Lyme....of all my problems its actually the least of my worries. Also my Lyme infection was only found because of testing....its not the cause of my illness...its not a very active infection in my body at this time.

Of course its presence is not helping my situation so I'm now treating it...but its not my biggest concern. Many people have Lyme and dont ever get sick from it....it depends on the state of the immune system. In my case...my immune system seems to be dealing with the Lyme just fine for now....it has not gotten out of hand.

I appreciate that you feel as if you need to stand up to people who infer that gluten intolerance is not serious. However, as far as I know I have never inferred this...so I'm not sure why you are directing your accusations towards me??? I have been talking about the benefits of the gluten-free diet for quite some time now. In fact NancyM...who now posts regularly on this board first learned of gluten intolerance because I was speaking out about it on other boards...in this case a thyroid board.

Even though we are on different sides as far as Enterolab and possibly other issues....this does not mean that I dont have respect for everyone who is on the diet....for whatever reason they choose to be on it. When I spoke out about gluten intolerance on other boards I was not attacked....nor was I told that the board was not about gluten intolerance. Some people were interested...others were not....clearly some were helped by the sharing of information....if one person benefits...its well worth it to me in the end.

As I learn...I share with all who are interested. I am very disappointed that just because I have been diagnosed with other conditions (not Celiac) leading to gluten intolerance....some people are less than supportive. Does it really matter HOW I became gluten intolerant?? Arent we all on the diet to be as healthy as we can be...for whatever reason. Is it somehow troubling to you that other things can cause gluten intolerance?? I'm clearly not alone....many people on this board and other boards share the same problems and gluten intolerance is a part of that.

Please give the same respect and leeway to people who have gluten intolerance and not celiac.

I'm really lost as to what this last statement is implying.

I have gluten intolerance and not Celiac. I'm no different from you except that my gluten intolerance is surrounded by other problems...and I did not experience the miraculous results that you did. I dont think I've ever disrespected you or anyone else who found the diet to be all they needed to be well.

If anything....its those of us who HAVENT gotten miraculous results and are still searching for all the missing pieces...that have been attacked and disrespected as I have been in this very thread. Its very disappointing and I would have expected more from members of this board.

I never mentioned Lyme Disease in this thread and I very rarely mention it in other threads (outside of the OMG thread).....only when someone asks about it do I address this topic. In this thread 2 posters have brought it up as if it has anything to do with Enterolab or the discussion we're having. Clearly people have issues with Lyme Disease being a possible cause for gluten intolerance??

I dont know...but since I've been here on this board MANY diseases have been brought up....some of which I've never even heard of....yet people are freaking out about Lyme and now going WAY off topic to bring it up when its totally irrelevant to the discussion at hand.

I'm really sorry if my diagnosis somehow makes you feel as if I should not be posting here or that I'm disrespectful to people with gluten intolerance because I was found to have Lyme. One doesnt cancel out the other...I have both issues....plus more.

To say that I dont have respect for people with gluten intolerance is totally ludacris...I have gluten intolerance myself and I dont disregard that. I may be gluten-free for life...I may not be...that remains to be seen. Please have some respect for those of us who *may* be able to overcome this....and who dont fit into your "gluten free cures all" box.

After all....it was not I who attacked you...or anyone else...it was the other way around.

As far as Enterolab....I can state my opinion and my beliefs based on my own experience and what I've witnessed here on this board...and you can do the same. The tests arent proven....his methods arent proven...nothing about Enterolab is proven so all we can do is state our opinions.

I feel as if you are the one who did not provide leeway for an opinion which differed from your own. I have always been open to the opinions of others and I dont insult people or make false accusations....here on this board or anywhere else.

[chrissy]

WOW!!!!! what happenned? i have never seen rachael say ANYTHING disrespectful about ANYONE------i have a great deal of respect for the things that she says.

i have seen this kind of attack on a person on this board several times----and was baffled almost every time and wondered why the offended person had gotten offended. i sometimes wonder if they have another agenda?

[AndreaB]

i have never seen rachael say ANYTHING disrespectful about ANYONE------i have a great deal of respect for the things that she says.

Neither have I. I appreciate all the time she has put into researching things out with her health and sharing what she has learned.

[tarnalberry]

If it makes you feel any better, research is being done in Italy to use stool testing as an improved way to identify immune markers that indicate celiac disease, much like what he's doing. Research takes *a long time* to get into the mainstream - sometimes decades - so it doesn't really surprise me that not much has happened yet.

[VydorScope]

WOW!!!!! what happenned? i have never seen rachael say ANYTHING disrespectful about ANYONE------i have a great deal of respect for the things that she says.

It is an internet forum, completely devoid of all emotional context and body lang. 80% of all lang is NON VERBAL, and completely missing from this medium. The human brain can not stand missing data, and in absence of data will often MAKE IT UP. Thus the readers see things in posts that the poster did not mean. This is normal, and unconscious. It is life on the internet, and most ppl get used to it after a while and make a serious attempt to not do that, but it is still underlying human nature and tough to beat back.

[jerseyangel]

I have always been open to the opinions of others and I dont insult people or make false accusations....here on this board or anywhere else.

This is true. I have Celiac, but yet have ongoing problems with food intolerance. It is in this context that I got to know Rachel and regularly post on the OMG thread. There is no judgement there, by Rachel or anyone.

We're all just trying to do the best we can. I like Vincent's point about emotional context and body language being absent on a forum like this. Most of the time, we work around that--sometimes though, as in life, something strikes a nerve.

[confusedks]

Nancy and Rachel,

I see both of your points. I, like BOTH of you, think Gluten Intolerance is JUST AS VALID as Celiac. I think the reason I started this thread is because I felt like when I went to the Celiac Foundation, they told me I "needed" to get diagnosed. I think that people have strong reactions to gluten even if they don't have the Celiac Gene. I am and will keep looking to see what all of my symptoms are from. Again, mine are all textbook of Celiac. Since I don't really know if you can get severe iron-deficiency anemia from a gluten intolerance, versus Celiac?! I don't know, but I know I am still looking for answers because I too want to know it's not all in my head (which I know it's not ). Also, has anybody gone gluten-free and then had to have an endoscopy and go back on Gluten? If so, how long did you have to go back to gluten before having the biopsy?

Again, thank you for all the extremely helpful responses.

Kassandra

[AndreaB]

Also, has anybody gone gluten-free and then had to have an endoscopy and go back on Gluten? If so, how long did you have to go back to gluten before having the biopsy?

Again, thank you for all the extremely helpful responses.

Kassandra,

I wouldn't recommend going gluten free and then going back on it at a later time for a biopsy. You have to eat equivalent to 3-4 pieces of bread for 6 months and then it is still hit and miss, especially if you had healed a lot in that time.

I've heard and read some bad stories about challenges for biopsies. You can make your situation much worse. If you want to do the biopsy then get it done soon. I don't remember if you are already gluten free. If so, for how long. If it's been a short time and you want to go the biopsy route then you'd probably be ok.

I also forget....did you have positive blood work?

[debmidge]

My wife and I each had all of the Enterolab tests for the gluten, soy, egg, casein, fecal fat and yeast. We sent the samples in separately, about a month apart, so that they couldn't have been mixed up. All of the positives and negatives were the same for both of us, with numbers that were very close as well. One of the genes was also the same for us. I had classic Celiac symptoms, very bad, and she had none.

P.S. we're not related, lol.

This is not as unusual as it appears ....my husband has a cousin who married a man with similar genes - they found out after a second child was born with a genetic mutation and the couple went through genetic testing in order to find this out...they were told that they had similar genes and not to attempt to have any more children. Both of these people were born and raised in USA and are not related.

[debmidge]

There have been a few who have posted on this board that say they have gotten neg results. They are few and far between, which I would suspect since before most ppl will shell out a almost $400 for the full test, they usually are sick enough to make it worth their while. I would say of ppl taking his test, prbly 90-95% do have celiac disease just based on human nature. Just like doctors see sick ppl all day long, yet most ppl can go several days with out seeing a sick person. Sick ppl seek out doctors, and ppl with celiac disease seek out entrolab.

THats purely conjecture of course, I have no access to entrolabs records to say anything official.

What Vincent is stating is true - and in insurance we call it "adverse selection." Meaning, those most suseptible to having a claim are going to be the people who take out the insurance. For instance, an insurance company starts advertising that they will write Flood Insurance for all - no one is rejected - well everyone who lives near water or gets flooding will apply and they will be the majority of the new applicants. This is the same for alternative testing methods of celiac disease. Those who traditional medicine have overlooked and are advanced in their celiac disease will be the majority of those getting tested thru Entrolab or other outside - easily accessible labs.

As to Entrolab, they are providing test results that are open to interpretation as it's not confirming true celiac but antibodies levels (genes aside)....The trick is to determine if the postive result is celiac or other intolerance.

My husband was diasgnosed by antibody blood test and was high positive; by the time he decided to finally get endoscopy he was healed (with residual ulcer which was healing by that time). So there was no definitive "celiac" diagnosis but he does have celiac disease as he had some relief from going gluten free. But yes, he has other intestinal issues which we've yet to discover the root. We are of those who when first diagnosed thought that going gluten free would be the answer; but it didn't happen that way. After 2 years of gluten-free diet it became clear to us that celiac isn't the entire disease that he is dealing with. Yes, we "hung our hats" on it being celiac disease alone and were disappointed. Was it false hope? No. Medical science does not have a full handle on this disease as yet....my husband is one of those cases that gluten-free diet has helped but he remains sickly and frail and has other intolerances (soy, etc.)

I don't think there's enough "end-result" research on this disease (celiac disease). Not yet at least. What makes someone's health problems clear up entirely when they go gluten-free and some don't.... Rachel has indentified some of her other health issues and she's been very focused on this and sharing her information in the OMG thread. Her journey thru celiac disease and beyond has been very comprehensive and much of it overwhelming - I don't think we (me & my husband) could withstand the ups and downs she did and her attempts at isolating her food intolerances and how traditional medicine has failed her.

Perhaps it also depends on how long you've been undiagnosed celiac - we know that the longer you run undiagnosed or misdiagnosed you develop more intolerances...

There's is certainly more to celiac and gluten intolerance than Entrolab or blood testing or endoscopy is currently revealing to medical science. There is a place for Entrolab - it's not the entire puzzle, just another piece of it and as the expression goes, don't throw the baby out with the bathwater. We need as many medical professionals in our corner as we can get. Dr. Fine himself certainly has the credentials but obviously he's not too concerned about getting "published." I dont' know what goes into being "published" but I wonder if it takes years of research/studies and perhaps Entrolab hasn't been around long enough and there's not enough data yet.

[Rachel--24]

I don't think there's enough "end-result" research on this disease (celiac disease). Not yet at least. What makes someone's health problems clear up entirely when they go gluten-free and some don't....

Debbie....I agree that there is not enough research and still alot we dont know about autoimmune disease in general.

I've thought alot about why some people get better while others do not....or why there sometimes appears to be a "honeymoon" phase once a person goes gluten-free....but then months later many symptoms reappear....additional intolerances, etc.

My only guess is that the "trigger" which set off Celiac in the first place is sometimes a stressor on the body which came and went. Possibly the immune system got a handle on it and even though Celiac Disease was triggered...the stressor which caused it is no longer an issue....or its an issue that the immune system can cope with.

Other times the stressor may still be present and remains unidentified. This would make sense as to why the honeymoon period. Removing gluten allows for the immune system to rest and deal with whatevers going on....but once again things begin to build up and then other foods may then start causing the same problems that gluten did.

So if the "trigger" is still there and remains unidentified...healing may never be complete and through the years other autoimmune diseases may pop up....depending on genetic susceptibility, etc.

This is just speculation on my part....after all the research it makes the most sense to me.

Her journey thru celiac disease and beyond has been very comprehensive and much of it overwhelming

It is overwhelming and I'll never say to anyone that its been easy.....its been hard and sometimes even scary to me. I think if I had been sick many years I would not have the strength or the determination to pursue all this. Its only because things deteriorated so rapidly for me that I felt as if something went really wrong somewhere and if I can identify it I can get my health back. I felt like I got robbed of all my dreams in the blink of an eye....as I'm sure you and so many others have felt.

I remember all of your story and I know its been a very rough road for both of you.

[confused]

Paula,

Are you a DQ7?

Yes I am dq7

paula

[Nantzie]

Rachel,

I stated that my comments toward you were off-topic and that I wasn

[CarlaB]

My theory is that gluten intolerance can be a condition in and of itself. I believe that there are at least a couple of specific forms of gluten intolerance that are not symptoms of something else, but are independent conditions.

The way I and some others on the board view non-celiac is as a condition in and of itself.

The way you seem to be presenting your view is that it's a symptom of something else and not a condition of it's own.

I think it can be both. I think some people genuinely have gluten intolerance that tests negative for celiac. DH is a perfect example! Though many with DH will have villous atrophy. If celiac can affect the skin and the intestines, can't it affect other areas, too? It just doesn't make sense that it wouldn't.

Nancy, you are the perfect example of someone who is gluten intolerant ... all health issues stemming from gluten intolerance, and you don't even have the celiac gene ... and if I were in your shoes I would claim celiac disease, too. No doubt. The only time I wouldn't claim celiac is if I was trying to differentiate between the two for educational purposes --mostly that would be here on the board.

On the other hand, Rachel and I are perfect examples of gluten intolerance coming from other health problems. Daily on this board I see people who probably more likely have Lyme Disease than gluten intolerance or celiac ... some of them see my signature and PM me ... sometimes I PM them ... and in some cases I will mention it outright in a thread, though that is usually under two circumstances:

1) They are exploring their testing options and mention joint pain, fibromyalgia, etc. more than GI issues -- in this case I just suggest their testing include Lyme testing as it could go either way.

2) They are not seeing improvement on the gluten-free diet and have started to explore other food sensitivities with no luck.

Nancy, you usually post on those threads and give your experience. I find that your experience next to mine gives the poster more options. I see that as a positive.

Today I PM'd someone because they had GI symptoms but lived in a Lyme endemic area. Because they were GI symptoms, I didn't mention it on the thread and even in the PM I just mentioned that they might want to be tested for Lyme at the same time they're tested for celiac. The response -- Yeah, that's the other thing I was looking into. This person has had a tick bite.

Enterolab does say that everyone has gluten sensitive genes, unless they're Asian with 2 DQ4. That would mean that most of the world would be gluten intolerant. This is why I don't recommend testing children of someone who doesn't have a celiac gene in the absence of symptoms. I understand that DQ1 is being looked into. Yet this would be my recommendation. Yours might be different.

This is all the beauty of an internet forum. None of us are professionals, rather we're people who can share their experience. The fact that we all have such different experiences to share means that people can read all we have to say and come to their own conclusions. The fact that we all have different manifestations of the same problem gives depth to the board.

In the end, we are all here to help. We share a common goal.