Sanity Check: Validity Of Enterolab

[Mike M]

Gluten intolerance does not mean Celiac Disease, with all due respect.

Celiac is an autoimmune reaction triggered by the protein found in wheat, barley, malt and rye. Gluten intolerance, is just that, an intolerance, that does not trigger an autoimmune reaction as Celiac Disease does. A gluten intolerance, may be a precursor to Celiac Disease, but they are not the same.

I just don't get it. No where on the Enterolab web site or if you call and talk to Enterolab do they say they diagnose celiac. I certainly did not state this in my post. Enｔerolab for me and my family members　ｗａｓ but a "first step". We had other testing doｎe by other doctors including GI's.

[jerseyangel]

Patti: it's a terrible thing if one can't get their doctor to believe them. I would advise people to simply directly ask their doctor for the celiac blood panel. My understanding is that it is covered by most insurance and since the disease is so prevalent more and more doctors are becoming aware. I told my brother about my test results and he already has found out that he does not have celiac disease. It took less than four weeks and he did not even have to twist his doctor's arm at all.

Agreed-- this is my advice, also. I wish I had a penny for every time I've posted the tests which make up the Celiac Panel. My own sister and mother have been tested because of my diagnosis. Incidently, I was not diagnosed through Enterolab.

Hopefully, the time will come--sooner rather than later--when people will have an easier time getting diagnosed. It's important for all of us, in our own lives, to help increase awareness.

[gfpaperdoll]

Some quite pricey specialist doctors do use Enterolab for their patients, especially the ones that specialize in osteoporosis. are they going to be messing around on here & saying that? uh nooo

I have a friend that tested positive via biopsy & also has a couple of other auto immune issues, she then tested thru Enterolab, to get further information & to let her doctor know about the tests that he now uses for all the rest of his patients.

My sister tested positive via blood work. Then tested thru Enterolab, same thing to see additional information.

I tested positive thru Enterolab. I did not have insurance at the time & really did not want it on my medical records, I knew I had a problem with wheat. I had been wheat light for over 10 years already. One of my grandchildren tested positive & one was negative. They both have it - the negative one has since lost all the enamel on all her teeth - she is 10, she also has an asthma like condition, allergies, constipation, sick a lot, ear infections, walking pneumonia, cavities, gained weight, ever increasing food allergies, rashes, hives, well you get the picture... The positive one is now 12, very small, his pedi keeps insisting that he be tested for celiac every year. He tested positive once for one blood test - so his mom said, but then negative & now he refuses to have any blood drawn, he does not want to be on the diet, & his parents both of which also have a gluten problem are not on the diet.

By the way all the above are double DQ1. My mother died of colon cancer. (too long to list all her health issues) Do I think that means that we do not have "celiac" no I think that with all the problems I have had my whole life, that I have had a gluten problem since birth - when I screamed for the first year of my life, they said I had bad "colic"... I really do not care if it is called celiac or gluten intolerance. I know that I have an autoimmune issue. I think that celiac is a small piece of the gluten intolerance problem. I think if you only have celiac that you do not have as many health issues as a gluten intolerant person has.

The reason I think this is that the gluten intolerant still get villi damage (once we are almost dead) in addition we get colon cancer, stomach cancer, throat cancer, brain issues-including MS type stuff, diabetes, arthritis, eye problems, osteoporosis, depression, and well the other 250 common problems associated with a gluten problem.

On this forum there is a very divided opinion. Those that only believe that celiac is the only problem and that DQ2 & DQ8 is the ONLY celiac genes & they do not like Enterolab. That will never change. People have their opinions, & we are free to voice them, much to the chagrin of the "celiac=positive biopsy & positive genes" people.

& yes, the percentage of the U.S. population that have a "gluten problem" is huge!! Food is the most powerful medicine that we have. We do not know how to use it. It is my opinion what we breathe, eat, or put on our skin is the basis for most all disease.

[Fiddle-Faddle]

Don't forget that the diagnostic criteria for celiac (damaged villi or DH) does not happen overnight. That is why testing on young children is not accurate.

Your body may produce antibodies to gluten (and to your thyroid, skin, joints, brain, whatever) well before you have damaged villi. If you think about it this way, then damaged villi (the gold standard diagnosis of celiac) is end-stage celiac--"gluten intolerance" was the beginning stage.

I think it's important for those who have positive antibody tests and a slew of other related autoimmune disorders to realize the importance of staying off gluten, whether or not people call it celiac or "just" gluten intolerance.

It does often happen that people might be on a low-gluten diet for whatever reason (Asian heritage, low-carb diet, personal preference), and have celiac--but not have had enough to trigger the severe damage that people tend to associate with celiac, so they slip through the cracks.

[Cinnamon]

I don't think anyone would ever say that Enterolab is a substitute for a doctor's diagnosis. The thing is that many go to the doctor and find that they are dismissed, or the doctor really doesn't know much about it, or they had a blood test which came back negative, or they are already off gluten and don't want to go back on for testing. In that case, Enterolab is something people can do on their own, not to get a diagnosis, but to get some important pieces of information.

My son was having only neurological symptoms. The doctor didn't know what it was and referred me to a neurologist, who didn't know what it was, and referred me to another specialist, who didn't know what it was. I discovered on my own that wheat seemed to be causing problems and took him off it myself. The next time he went to the regular doctor, I discussed it with him, but he never suggested testing of any kind, he just said something along the lines of, "if it seems to be bothering him, yes, keep him off it." We had no diagnosis and he didn't suggest any. But yet I wondered about some things. If he was a celiac, did he have vitamin deficiencies? Does he have the gene? The doctor didn't seem knowledgeable and I can't just go to a gastroenterologist on my own without a referral from the GP.

So then I considered doing the Enterolab test. I knew it would not provide any diagnosis. I just wanted to see if he had antibodies and I wondered about his genes. I decided to go ahead and test my daughter as well, since she has always had a "nervous stomach", though nothing really serious, seemingly. When I got the results back, it gave me several useful pieces of information.

First, it showed me my son did not have antibodies. Okay, that doesn't explain why he's reacting to gluten, but it's a piece in the puzzle. It showed me his fat malabsorption was normal. Okay, that's good to know, he probably doesn't have serious vitamin deficiencies. I saw the genetic test. He had the DQ2 celiac gene and the DQ1 gluten sensitivity gene. Okay, that's very helpful to know. He's predisposed to problems with gluten, and now I also know to watch his 2 older brothers, and myself, and my husband.

Then I got my daughter's report. I was shocked to see that she did have antibodies to both gluten and dairy. I never would have suspected the dairy. It doesn't tell me why, but it does tell me she needs to be off dairy, as well as gluten. Her malabsorption score was normal, so that was reassuring. She also has the same genes. Also good to know.

Like someone said, in a perfect world, we'd all have excellent, knowledgeable doctors who could give us an accurate diagnosis, but since that's not the case, I think Enterolab can give a few answers, at least, as long as you go into it knowing it will not diagnose anything and is not a replacement for good medical care, if you can find good medical care.

[ShayFL]

Right. I have not been on these boards as long as many. That is why I said "I" have not seen......It is just my experience so far.

It is much like the argument over whether sugar is evil, Glutenese should be used, carbs in the diet or vaccinations. There will be people on both side of the fence. And quite frankly it makes life so much better this way. It forces us to "think" and not be "sheep". These discussions should be a catalyst for self research regardless of how knowledgeable some of us might sound.....An individual is responsible to see their own doctors, do their own research and listen to their own instincts.

Scott Adams wrote up a very nice article on Dr. Fine/Enterolab:

https://www.celiac.com/articles/759/1/Early...e-MD/Page1.html

Hey I make mistakes. I was misquoting that Europe has discovered 7 new Celiac genes....this was not quite right. The have discovered 7 new genetic regions....a little different. I made the correction and linked to the actual research in a recent genetic thread.

But the question here is do I think Enterolab has validity and my answer was and still is YES.

I was especially pleased with the genetic testing because my symptoms have always been primarily neurological. Very minor GI. I tested NEG for the 2 primary Celiac genes and had NEG blood work.

But my instincts were telling me gluten/wheat could be an issue. Enterolab showed I have 2 copies of a gluten sensitivity gene. And after I learned that, I found research to support that those genes DQ1 are most commonly associated with neurological symptoms with regard to the Celiacs that do not carry the primary genes. Bingo!!

It was EXACTLY what I needed to get me to try a strict gluten-free diet. And guess what? After the first month, I realized that I didnt have my normal 2 migraines. I have not had a migraine since except one small one after I got CC at Whole Foods. 6 months and migraine free!!! My vertigo is also MUCH improved and my neuropathy in my hands and feet are almost nil. Depression lifted as well. My neurological symptoms have responded to a gluten-free diet.

And with me it isnt placebo. That does not work on me though I wish it did. Over the last 12 years I was told by numerous M.D.s and Holistic practioners that I had this or that and each time I believed them and did what they told me to do with no luck.

Enterolab was VALID for me. That's all I can say.

[sbj]

Do you see the serious problem we have here with some posters?

[gfpaperdoll]

I do not know any gluten intolerant people that believe that some gluten intolerant people can eat a low gluten diet. That is just supposition on someone's part. Do they have any studies to back that up - no they do not. Have they followed someone for 25 years that is gluten intolerant & on a low gluten diet. No they have not.

I do not believe everything that I read, even from a celiac organization. If I did I would be dipping my head in gluten filled shampoo everyday.

[Fiddle-Faddle]

sbj, you are TOTALLY missing the fact that before a celiac person eats enough gluten to cause visible villi damage (and that differs from person to person), they will be diagnosed as gluten-intolerant!

I, too, don't care what celiac group came up with your quote. They are simply wrong to generalize that way.

By their definition, a celiac who for whatever reason has not yet damaged their villi will be told that they can safely eat low-gluten. As gfpaperdoll points out, there are no valid studies showing this to be true.

That's like telling someone who is allergic to peanuts that they can safely eat small amounts of peanuts UNTIL they have an anaphylactic reaction, and only then will they be considered truly allergic.

[sbj]

Hey GFpaper doll:

I am not trying to piss anyone off. I am urging people to get tested for celiac if they have issues. It's that simple.

Yesterday you wrote:

"I think if you only have celiac that you do not have as many health issues as a gluten intolerant person has."

That's just not very empathetic - and you're wrong - we have to be on the watch for type 1 diabetes, anemia, osteoporosis, GI cancers, intestinal lymphoma, and a host of other things. You might think those aren't health issues but I do! And like you said yesterday, I have a right to voice my opinion. I'm not gonna sit idly by while you tell me I don't have health issues. I'm not gonna let you mislead people into thinking that celiac disease is not a big thing compared to gluten intolerance. Sorry - I'll post until the forum moderators kick me off.

"I do not know any gluten intolerant people that believe that some gluten intolerant people can eat a low gluten diet."

That's something because just yesterday you wrote that you yourself were on a wheat-lite diet for ten years!

"I do not believe everything that I read, even from a celiac organization. If I did I would be dipping my head in gluten filled shampoo everyday"

Do you believe anything that you read? Do you believe stuff you read from a gluten-intolerance group? Because that's what I quoted from - not a celiac organization (I even provided links). Do you only believe stuff on forums that already gibes with your opinion? It doesn't make sense to walk around with blinders on the rest of your life, pretending the medical world doesn't exist because they don't agree with you. It doesn't make sense to wonder if you have celiac if you are suffereing with symptoms.

If you are having digestion issues get tested for celiac disease and see a gastroenterologist. (And don't eat shampoo with gluten!)

[jerseyangel]

Sorry - I'll post until the forum moderators kick me off.

Please read board rule # 1 before posting.

Thanks!

"Do not be abusive or otherwise out of line towards other board members. Show respect for each board member, no matter what you think of their views. This is not a place to quarrel."

[sbj]

Hi Patti:

I appreciate the warning. I did not feel as if I was getting abusive - although I strongly disagree with that poster.

"I think if you only have celiac that you do not have as many health issues as a gluten intolerant person has."

I thought that comment was out of line and disrespectful. It made me angry and I'll bet others who suffer with celiac disease were a bit surprised to see such diminishing of our health issues. Doesn't that poster deserve a warning?

Just wondering, honestly. We are all suffering here. This comment certainly seems to qualify as out of line and disrespectful. I hope that I will not be the only one who is warned while others are permitted to disrespect all of us who suffer with celiac disease.

[jerseyangel]

SBJ--It wasn't an official warning, and in retrospect I should not have quoted you in my post. I seized on your moderator comment. My friendly reminder goes for everyone.

This is a passonate subject, granted. Let's just try to keep our tone civil

[sbj]

Thanks, Patti. There seems to be diminishing returns here. I was merely trying to let people know that they should get tested for celiac disease and that it is different than gluten intolerance. I was trying to politely say that the Enterolab tests were no substitute for a diagnosis. I understand that some people disagree - obviously! What I did not expect was the anger and dismissal (keep it to the topic!, your health issues are nothing compared to mine). That was shocking and perhaps I reacted. I should know better - this is an anonymous forum and everyone is free to speak their mind. I don't want to stop that.

I continue to think that my message - get the celiac blood panel - is uncontroversial and is good advice. I never intended to provoke the sorts of reactions I am reading. I am a bit surprised and disappointed.

[cruelshoes]

Scott Adams wrote up a very nice article on Dr. Fine/Enterolab:

https://www.celiac.com/articles/759/1/Early...e-MD/Page1.html

Actually, that article is Dr. Fine talking about himself. Scott may have included it in his newsletter in 2004, but the words are from Dr. Fine about Dr. Fine. Probably not a great deal of objectivity there.

All we have to say whether Enterolab's results are valid is our own opinions. Since they have never published their results, we do not have scientifically validated evidence that their results are accurate and can be relied upon. It seems suspect to me that the vast majority of people who take the test get positive results. Perhaps it is because the people who use Enterolab are more likely than not to have problems with gluten, or perhaps it is because their test is faulty. How will we ever know?

In my opinion, if Dr. Fine had such a revolutionary test that could stand up to peer review he would have published his results years ago. Having said that, I'm happy for people who get the answers they need from Enterolab.

[lizard00]

Thanks, Patti. There seems to be diminishing returns here. I was merely trying to let people know that they should get tested for celiac disease and that it is different than gluten intolerance. I was trying to politely say that the Enterolab tests were no substitute for a diagnosis. I understand that some people disagree - obviously! What I did not expect was the anger and dismissal (keep it to the topic!, your health issues are nothing compared to mine). That was shocking and perhaps I reacted. I should know better - this is an anonymous forum and everyone is free to speak their mind. I don't want to stop that.

I continue to think that my message - get the celiac blood panel - is uncontroversial and is good advice. I never intended to provoke the sorts of reactions I am reading. I am a bit surprised and disappointed.

I, too, appreciate your passion.

The reason this is becoming a pot stirring event is that there are people, MANY people here, myself included, who either had a Celiac panel or want a panel... it's not always that easy. If I had listened to the initial advice of my doctor, BECAUSE of the results of my blood panel, I'd be eating gluten right now, being sick all of the time. In a perfect world, everything would be as simple as you make it seem. But you were a "lucky" one. You were diagnosed by ACCIDENT, which means that you didn't have to go through what some us have had to go through. Doctors looking at us like we were crazy, telling us we can't POSSIBLY have Celiac because...

Personally, I haven't used Enterolab. To me, and this is me, it just didn't seem quite right. But that's my opinion, and I certainly can't fault someone who has tried and the medical community has ignored. I thought about using Enterolab at one point, but decided against it for a number of reasons, not all of for my previous statement.

It took me two GI's to find someone who understood and was willing to work with me. Yes, they are there, but I also live in a fairly big city. Some folks don't really have the option to choose their doctor, it's chosen for them by the sheer fact that maybe, they're the only one in town.

You have some VERY valid points, and understand, I'm not totally disagreeing with you or trying to shut you down. But, please remember that there are two sides to every issue, and things aren't always as easy as they appear to be.

[fedora]

wow,

honestly this post sort of made my belly hurt.

to answer the ORIGINAL posting:

I tested postitive for gluten and tTg antibodies through enterolab

MY dd did NOT. She tested negative on gluten, ttg and casien antibodies through enteroab. She has also had her total IGA levels tested(in a blood test) and is not deficient.

For the tangent of why would anyone even go through enterolab:

HEre is my story. I will be honest, I feel judged for my decision by certain people here. Not all of us were so lucky to get a celiac diagnoses easily. It took me 23 years. Many of those years were awful and painful and terrifying. At 12 I remember thinking, I am going to die. And for the last several years I was afraid, afraid my colon would explode like my father's, or I would get intestional cancer, or go crazy.

I went through enterolab because I was already off gluten. I did not know about traditional tests when I went off gluten. I had already been gluten lite for years(ate no wheat except when cheating). I knew instantly that no gluten was the answer after I stopped eating it. THEN I found out about testing. I had a choice, continue gluten free or go back on it to get blood tests. I read blood tests can give a false negative PLUS I had been gluten lite for years. I ate lower gluten containing foods(not wheat) like oats and spelt but not every day. I felt my chances were high I would have a false negative.

ALSO I suffer from NEEDLE PHOBIA and high anxiety. Why? I have always been afraid of needles, and at 15 I got a horrible injection for a bone scan. It went horribly. My veins are deep and hard to find. So it is so easy for you to sit and say go get blood drawn, no biggy. It is a huge deal for me. I logically know anxiety makes my life harder, but it is one of my crosses to bear and I do my best to deal with it.

ALSO, I have insurance that I pay for( I am self employed) and I have a very high deductable. I would pay for all my testing either way. I would rather not give the insurance anything to hold against me. And they will.

ALSO, the physicians assistants here think you have to be scrawny with chronic diahrea to have celiac. I would have had to wait to see my Doctor(the one who originally suggested celiac to me 5 years ago but did not test me for it because I did not have chronic diahrea-I had chronic constipation followed by pooping tons).

ALSO I got the gene testing done through enterolab to help figure things out for myself AND my children.

so I went through enterolab. An opinion was brought up wondering why anyone would spend almost $400 to validate not eating gluten or cheating when the diet helps. HMMM. Well I would have had to spend MORE than that(because of my high deductable) to get the blood work, and then what if it was negative? And I would not have known my genes. At least with the enterolab test I know my genes too. The gene test can make all the difference in whether someone thinks they need to be incredibly careful about CC or not. Who are you to judge what I do with my money? I do give money to charity and volunteer my time too.

I never even told my dr about enterolab. I talked to him on the phone a couple months into the diet. Then I went to see him about 5 months into my gluten free diet. I brought in a large list of my symptoms and what has gone away or gotten vastly better since giving up gluten. He DIAGNOSED me as having celiac based on my dietary response. He was the one who first told me about celiac and gluten(I did not know what they were) 4 and a half years before I went gluten free. Stupidly I would go see his physicians assistants after that who were no help with anything ever.

As far as my daughter, she had the blood test anti-tTg IgA and total IGA levels and a wheat allergy test done. Both negative. I had requested ALL the celiac tests done and the PA did not make sure they were all run. She said my daughter did not have celiac and sent us on our way. My daughter had not grown at all in almost a year and is tiny. And she had other symptoms. so we did enterolab. Her tests were negative AND she doesnot have celiac genes. I am happy for her.

We can disagree without being judgemental or mean. Please lets be supportive, even if we do not agree...

[lizard00]

wow,

honestly this post sort of made my belly hurt.

Fedora,

I'm sorry if I upset you with my post.

It was not my intention to upset anyone with my post, but rather to show that there are two sides to every issue.

[Jestgar]

An opinion was brought up wondering why anyone would spend almost $400 to validate not eating gluten or cheating when the diet helps. HMMM. Well I would have had to spend MORE than that(because of my high deductable) to get the blood work, and then what if it was negative? And I would not have known my genes. At least with the enterolab test I know my genes too. The gene test can make all the difference in whether someone thinks they need to be incredibly careful about CC or not. Who are you to judge what I do with my money? I do give money to charity and volunteer my time too.

But why test at all? If you know gluten makes you feel bad, why not just take it out of your diet?

[sbj]

Fedora:

I'm sorry you feel that I am being mean or judgmental. Not my intention. I encourage everyone who feels better on a gluten-free diet to do what they feel is best. I also encourage people to try for a celiac diagnosis if at all possible. You can't get such a diagnosis from Enterolab.

You say, "I had a choice, continue gluten free or go back on it to get blood tests." There are many, many people like you who know that they are gluten intolerant but who aren't sure if they have celiac disease. Most don't think it is important to get a definitive diagnosis via biopsy because they feel much better on a gluten-free diet. Many others can't get a diagnosis for some of the reasons you mention - doctor won't give me the test, insurance too expensive, scared of needles, etc.

Is that a fair summation? (And please note: I'm not addressing those who have actually had the celiac blood panel and have tested negative for the disease even though they have symptoms of gluten intolerance. Just about those who refuse to take the celiac panel.)

I'd like you and those who refuse to test for celiac to consider something.

When you are diagnosed with celiac disease a gluten-free diet is not always the only treatment.

• People with celiac disease need to have blood tests to look for nutritional deficiencies due to malabsorption. They may need treatment in addition to gluten-free diet.
  
• People with celiac need to watch for iron deficiency anemia and osteoporosis. If you are diagnosed with celiac you should check your bone density. Other than a gluten-free diet you might need additional treatment for low bone density.
  
• People with celiac are under greater risk for other autoimmune conditions, such as thyroid disease, type I diabetes, joint diseases, RA, and liver diseases. Your doctor can run tests to look for all of these and he/she can then prescribe treatments - in additon to a gluten-free diet.
  
• Perhaps most importantly, celiac disease involves the activation of a particular type of white blood cell and this puts patients with celiac disease at an increased risk to develop GI cancers, in particular intestinal lymphomas. Your doctor might want to give you a colonsoscopy or run a CT scan to look for signs of tumors. He might want to test your blood for cancer cells or perform a urine cytology for the same.
  

Confirming celiac disease is a personal decision. But if you have celiac and don't know it you might have low bone density or anemia or lymphoma or diabetes or thyroid disease. You can treat all of these conditions but you'll never know unless you test for them. And you might not test for them unless you know you have celiac disease.

The person with celiac disease needs to monitor himself or herself for a whole bunch of things. Someone with celiac needs regular followup with their doctor not just the diet. God forbid you have celiac disease but don't know it - you might not be getting all the treatment you need - you might be putting yourself at risk. In many cases there's a lot more to treatment than the gluten-free diet.

[Jestgar]

• People with celiac disease need to have blood tests to look for nutritional deficiencies due to malabsorption. They may need treatment in addition to gluten-free diet.
  
• People with celiac need to watch for iron deficiency anemia and osteoporosis. If you are diagnosed with celiac you should check your bone density. Other than a gluten-free diet you might need additional treatment for low bone density.
  
• People with celiac are under greater risk for other autoimmune conditions, such as thyroid disease, type I diabetes, joint diseases, RA, and liver diseases. Your doctor can run tests to look for all of these and he/she can then prescribe treatments - in additon to a gluten-free diet.
  
• Perhaps most importantly, celiac disease involves the activation of a particular type of white blood cell and this puts patients with celiac disease at an increased risk to develop GI cancers, in particular intestinal lymphomas. Your doctor might want to give you a colonsoscopy or run a CT scan to look for signs of tumors. He might want to test your blood for cancer cells or perform a urine cytology for the same.
  

If you continue to eat gluten.

And other autoimmune diseases can occur independent of Celiac, so your doctor should be aware enough to test for them if you present with symptoms.

My doc only ran anti gliadin, which was negative. I saw no need for any other testing. One of my brothers had the whole panel run, all negative. Does this mean we don't have Celiac? That my thyroid was removed (years ago) unnecessarily? That I don't have psoriasis? That my brother doesn't have diabetes? A positive test is positive, but a negative test, or no test, doesn't mean that the other risk factors can be ignored.

So again, I ask, what's the point of testing?

[Fiddle-Faddle]

When you are diagnosed with celiac disease a gluten-free diet is not always the only treatment.

• People with celiac disease need to have blood tests to look for nutritional deficiencies due to malabsorption. They may need treatment in addition to gluten-free diet.
  
• People with celiac need to watch for iron deficiency anemia and osteoporosis. If you are diagnosed with celiac you should check your bone density. Other than a gluten-free diet you might need additional treatment for low bone density.
  
• People with celiac are under greater risk for other autoimmune conditions, such as thyroid disease, type I diabetes, joint diseases, RA, and liver diseases. Your doctor can run tests to look for all of these and he/she can then prescribe treatments - in additon to a gluten-free diet.
  
• Perhaps most importantly, celiac disease involves the activation of a particular type of white blood cell and this puts patients with celiac disease at an increased risk to develop GI cancers, in particular intestinal lymphomas. Your doctor might want to give you a colonsoscopy or run a CT scan to look for signs of tumors. He might want to test your blood for cancer cells or perform a urine cytology for the same.
  

Confirming celiac disease is a personal decision. But if you have celiac and don't know it you might have low bone density or anemia or lymphoma or diabetes or thyroid disease. You can treat all of these conditions but you'll never know unless you test for them. And you might not test for them unless you know you have celiac disease.

The person with celiac disease needs to monitor himself or herself for a whole bunch of things. Someone with celiac needs regular followup with their doctor not just the diet. God forbid you have celiac disease but don't know it - you might not be getting all the treatment you need - you might be putting yourself at risk. In many cases there's a lot more to treatment than the gluten-free diet.

All these are equally true for those with gluten intolerance.

I repeat what I said in my previous post: many people with a diagnosis of gluten intolerance are actually in the early stages of celiac disease, but don't have enough villi damage to receive an official diagnosis of celiac.

Most doctors would not diagnose me with celiac. I did not have obvious villi damage several years ago, I had a rash that was consistent with DH--but the biopsy was negative. However, that test and bloodwork were run after I was already gluten-free for a month, AND had been on prednisone.

My only positive bloodwork was for IgG, and that was more than enough to convince me to go gluten-free, AFTER reading of the experience of the long-time posters here on this board.

I also had autoimmune thyroid disease, reflux, high blood sugar and had just started joint pain, all of which either disappeared or greatly improved after going gluten-free.

I know you mean well, but you are grossly oversimplifying something in a way that would mean that many, many gluten-intolerant/celiac people would fail to get diagnosed based on your criteria.

[happygirl]

And some forms of gluten intolerance are believed to be separate from Celiac.

Open Original Shared Link

[sbj]

Fiddle-faddle:

"I know you mean well, but you are grossly oversimplifying something."

What am I oversimplifying? The symptoms of gluten intolerance? I'm not even addressing gluten intolerance - I'm addressing celiac disease diagnosis. What are you talking about?

"In a way that would mean that many, many gluten-intolerant/celiac people would fail to get diagnosed based on your criteria."

If I have suggested that people who are suffering from symptoms don't get diagnosed I don't see it in any of my posts. Could you pont this out? Where have I said - "Don't get diagnosed, you don't have celiac." In fact, even though I don't quite trust Enterolab I said to go right ahead and do it. I also suggested you continue with a gluten-free diet if you feel it is helping.

I only suggest that you also do a celiac blood panel. How can that be bad advice?

If you are gluten intolerant per Enterolab and you go ahead and get the bone density testing, the nutritional deficiencies testing, have a colonoscopy and endoscopy, get cancer screening, etc. then I'm all fine with that! In fact, that's my entire point!

My concern is for those who self-diagnose, go on a gluten-free diet, and then say "That's enough" because their symptoms go away. If you have celiac disease and you only go on the gluten-free diet then you aren't doing what you should be doing. That's not difficult to understand. I'm not diminishing the symptoms of those who suffer from gluten intolerance. I'm urging diagnosis for celiac (if you can). What the heck is wrong with that? I feel like I'm in the Twilight Zone - how could my advice possibly harm anyone?

And jestgar - No, these symptoms do not only present only if you continue to ingest gluten. If you are recently diagnosed with celiac disease you might have low bone density right now with no outward symptoms. You might have malabsorption right now with no symptoms. You might have intestinal lymphoma right now. You might need other treatments beside a gluten-free diet right now. It's important to diagnose celiac because then your doctor will have all the justification he needs to look for these other things. And you are honestly suggesting that the same doctors who can't seem to diagnose gluten intolerance will have no problems diagnosing other autoimmune diseases?

Are you honestly and sincerely suggesting that people not bother getting tested for celiac? Excuse me - everyone on this board please excuse me - but I will continue to suggest you get tested for celiac disease if you present symptoms.

Cue Twilight Zone theme ...

[ShayFL]

I am just glad that I am not the one passing the hot potato in here.

In the 5 plus years I counseled people with health issues, I can honestly say that I did not judge anyone for the doctors, herbs, supplements, diet, methods, testing, etc. they choose for themselves. Even if they make a mistake. It is theirs to make and they should not be judged for being human and wanting to do what they felt was right for them at the time.

The only person we can convince of anything is ourselves. So people...you can come in here till your blue in the face standing your ground....but you will not make a believer out of anyone but yourself. You will not win because the players in here are in different ball fields.

Full Celiac panel, biopsy, gene testing, Enterolab, gluten-free diet trial, acupuncture, supplements, herbs, biofeedback, witchdoctor....who are we to judge?

We should all be able to make our own decisions about our health and be supported for doing so. We should also be able to come in here and give our honest experience about something we tried (Enterolab) without being attacked and judged.

And now I will move on to other threads where people actually need help...........