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What Is The Point Of Diagnosis?
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I see many threads that discus getting diagnosed. Some people assuredly want a diagnosis, and want to know if it is wheat allergy, gluten intolerance, or some other condition. Others like myself just assume that they have it and go from there.

If not eating gluten makes you feel better, what if any benefit do you get from a diagnosis?

:huh:

If you feel better not eating gluten, don't eat it. Celiac disease it diagnosed through one method. Villus Atrophy is the only positive diagnosis. The blood tests etc. only point to a possibility.

However, just because you have not *yet* developed villus atrophy does not mean that you do not have a problem metabolizing wheat/gluten. You body just hasn't broken down and succumbed to villus atrophy yet. Should you feel like crap, and damage your body to the point where you do have villus atrophy before going gluten free? That just seems like an exercise in masochism.

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My adult son was diagnosed around 11 years ago when, after years of suffering and misdiagnosis (one Dr even put him on anti-depressants!), his new GI doc back then essentially put him on the Atkins Diet for a month (her mother had celiac disease and she thought his history and all symptoms indicated celiac disease). His whole world changed and his problems went away. That was enough for him! Consequently, there are no blood test results, nor biopsies in his medical records. He doesn't care, but over the years there's been a time or two when he changed jobs and had to get a new Dr. because his medical changed, that the new doc said "well you don't know for SURE that you have it." (he still doesn't care if records show it!)

In my case, when my doc finally wanted to look at the possibility of my having celiac disease he asked me to just try eating gluten free and see if it had any impact. I said I'd rather be tested for it, since I knew from my son just how detailed and scrutinous the diet could be - - how gluten is in things most non-celiac people would never imagine (ketchup, salsa, colorings, flavorings, chips, seasonings/spices, and sometimes even ice cream!). I told my doc I wanted to know that the diet was something I medically HAD to be on, and not just something that I could cast aside occasionally when at a celebration (birthday cake!) or while on vacation, etc.

Two viewpoints in one familly!

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The problem with simply trying the gluten-free diet without diagnosis is that there are many hidden sources of gluten that are difficult to discover. Even for the seasoned veteran, living a gluten-free diet takes effort and focus, especially when other people are preparing your food, such as when you travel or dine out. There are also sources of gluten that many people don't initially consider: some soy sauce, some vinegars, some caramel coloring, some cosmetics, lip balms/glosses, lotions, soaps, shampoos, etc. Many people also forget that the products their spouses use can become ingested when you kiss them.

Living a lifestyle that is truly free from ingesting gluten is difficult, and suggesting otherwise ("just try eating gluten free") is a disservice to the Celiac community as a whole. This is why the Celiac Foundation issued a warning against Elisabeth Hasselbeck's new book.

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Villus Atrophy is the only positive diagnosis. The blood tests etc. only point to a possibility.

This is not true, TotalKnowledge. Although there is a substantial risk of false negatives with blood tests, positive blood results for Celiac are close to 100% accurate.

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I think this is a perfectly good question-- but it is from the point of view of somebody who is gluten free already and figured it out by themself. I take my hat off to you for self-diagnosing! Would I had been smart enough to do that! I would have had a very different life.

I agree with you that if you are already gluten free there is no point in the testing-- if you can do the diet. Some people find the diet so restrictive, they need proof that they have to do it and even then they cheat. That's also why dr.s hesitate to tell people to try it out. It is tough.

But when they don't know what is wrong with you and are calling it IBS-D, say, I can see the point. If you have an IBS-D diagnosis (which I was diagnosed with when I was 17 back in 1984-- way before the internet even had helpful sites like this one) you are told:

1. There is nothing you can do about it and it isn't related to anything you are eating and

2. IBS-D does not sem to have any long-term health consequences for sufferers, so don't worry about it and

3. All the tests are going to turn out normal, so there is no point in testing. *%&#@! Talk about frustrating. Of course you believe them asnd continue on your merry way.

Even in the face of a positive celiac blood test back in 2000 they were still calling it IBS. Eight years later (and after losing a couple of organs and developing all sorts of related illnesses including DH) they figured it out. It was a miracle for me. I finally knew what I had to do to feel better. And it worked. It worked fast.

So here's to having a diagnosis. It clarifies things for lots of people.

And here's to people like yourself who were smart enough to avoid all those years of BS (the b= bad in this case) and heal themselves. I couldn't do it.

Lisa

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I am the type of person who really wanted a diagnosis. I did all the testing and everything came back negative for me. (Blood and biopsy.) I was so sure I had celiac when I read about it. My symptoms totally matched. For me, trying the gluten-free diet was really the only thing I could do to potentially feel better. I think it is great if you can get a diagnosis, but unfortunately the diagnositc criteria for celiac leave many of us behind. I don't think there is anything wrong with trying a gluten-free diet to see if it helps. You get to the point of desperation and none of the doctors believe you. So for me, at this point, a diagnosis doesn't really matter. I know my body better than the doctors do. And I am not going to just waste away and die just because my Dr. says I don't have villous atrophy. It would be handy if all the doctors could correctly diagnose us and hand us the "celiac certificate" but unfortunately it doesn't work out that way.

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I am the type of person who really wanted a diagnosis. I did all the testing and everything came back negative for me. (Blood and biopsy.) I was so sure I had celiac when I read about it. My symptoms totally matched. For me, trying the gluten-free diet was really the only thing I could do to potentially feel better. I think it is great if you can get a diagnosis, but unfortunately the diagnositc criteria for celiac leave many of us behind. I don't think there is anything wrong with trying a gluten-free diet to see if it helps. You get to the point of desperation and none of the doctors believe you. So for me, at this point, a diagnosis doesn't really matter. I know my body better than the doctors do. And I am not going to just waste away and die just because my Dr. says I don't have villous atrophy. It would be handy if all the doctors could correctly diagnose us and hand us the "celiac certificate" but unfortunately it doesn't work out that way.

The only way to rule out Celiac Disease in cases like yours would be through a gene test. Even if the gene tests, blood tests and endoscope are all negative, it still does not eliminate the possibility of gluten sensitivity - which can cause serious medical problems, but not villi damage.

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The problem with simply trying the gluten-free diet without diagnosis is that there are many hidden sources of gluten that are difficult to discover. Even for the seasoned veteran, living a gluten-free diet takes effort and focus, especially when other people are preparing your food, such as when you travel or dine out. There are also sources of gluten that many people don't initially consider: some soy sauce, some vinegars, some caramel coloring, some cosmetics, lip balms/glosses, lotions, soaps, shampoos, etc. Many people also forget that the products their spouses use can become ingested when you kiss them.

Living a lifestyle that is truly free from ingesting gluten is difficult, and suggesting otherwise ("just try eating gluten free") is a disservice to the Celiac community as a whole. This is why the Celiac Foundation issued a warning against Elisabeth Hasselbeck's new book.

The problem I have with your first statement is there is very little hidden gluten in food products. The reason people think so is because they don't know what is in food, and most people don't today unless they have a major food issue. My mother argued with me that there was no wheat in white bread and was very adamant about it! I asked her what she thought it was made of.....meringue? I really almost banged my head against the wall. If you know your food and what it is made of, you can figure out if it contains gluten fairly easily. If not, you don't eat it. There is a learning curve on the trickier stuff but it can be learned by anyone who is motivated to do so. It's not rocket science.

Having said all this, why would you think that a person without an official diagnosis couldn't or wouldn't want to do this if they have made the connection that eating gluten makes them feel really bad? Personally, I think being a diabetic (Type 1) must be 1,000X more difficult than being a Celiac because they have to keep track of proteins, carbs, etc. and the amount they eat PLUS inject insulin every day PLUS monitor their blood sugar during the day. Celiacs do not have to be concerned with topical products either, except for lip related products and things like eye drops. That is a choice issue unless they have a topical allergy to wheat and that is backed up 100% by any medical establishment. I am not criticizing anyone who chooses to go all gluten-free whatsoever but it is not a necessity for many, many Celiacs and they do just as well as those who use all gluten-free products. I view that as a comfort level issue.

I always ask people who think they may have a problem but doubt themselves if they continually got hit in the head with a brick, how long would that have to happen before they realize and acknowledge that it hurts? I also think people who say this diet is difficult are doing a disservice to those who are searching for answers but now won't do a dietary trial because they think eating gluten-free is impossible, which it isn't.

I am one of the lucky ones who presented classically and am VERY serio-positive. If I eat even a tiny amount of gluten , it would spike my blood work so, once I got really sick and had the symptoms the doctors look for and recognize, it was easy to diagnose me via blood work. However, it did take 20 years for that to happen, unfortunately. If I had heard of celiac disease 15 years ago, I would have been happy to do a dietary trial because I was so miserable with stomach pain.

If a person needs to see their insides on a photograph to prove they have a problem, that's fine. However, I know Celiacs who were officially diagnosed with

all the photo's to prove it and they still cheat from time to time. You have to cut the emotional ties to food before you can feel comfortable with making changes to your diet and sticking with it 100% and I don't think an official diagnosis is key to do doing that. Many obese people who lose weight successfully and keep it off are in the same mental boat as a Celiac......they have to be comfortable with changing their lifestyle to accommodate their needs because simply "going on a diet" will not work. They have to learn that eating healthy stuff will keep them thin and avoid the crap that everyone else eats. It's also a wonderful thing when a patient has total control over their recovery, without the need for surgery or meds!

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This is not true, TotalKnowledge. Although there is a substantial risk of false negatives with blood tests, positive blood results for Celiac are close to 100% accurate.

While I personally would agree with you about being gluten intolerant, I have read many times (and had my doctor tell me) that the "definitive diagnosis" is through biopsy.

Many of the problems associated seem to go way beyond the villi however and extend to most systems in the body. Gluten intolerance seems like the actual parent problem. Villus atrophy being one symptom there of. This way of looking at it is also in the book "Healthier Without Wheat"

However if you feel terrible when you eat gluten, and feel great when you don't it wouldn't make sense to start eating gluten again, even if Celiac Disease was ruled out. Especially since even with a biopsy you can get false negatives.

The reason I even knew to try a gluten free diet was that my sister has been extremely ill, in and out of the hospitals for about two years with potassium crashes. Why would I risk that over "trying gluten free"? We shared so many of the same symptoms hers was just at a more critical level.

I don't care if I am ever graced with a "celiac diagnosis" I know I always used to feel like I had been run over by a bus, and now I don't. Why would I want to go back?

Edit: My sister still hasn't been "diagnosed" either. She is still in danger of having to go back to the hospital. Her biopsy isn't scheduled till August. Which may or may not tell her anything. Her blood tests were "inconclusive".

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The problem with simply trying the gluten-free diet without diagnosis is that there are many hidden sources of gluten that are difficult to discover. Even for the seasoned veteran, living a gluten-free diet takes effort and focus, especially when other people are preparing your food, such as when you travel or dine out. There are also sources of gluten that many people don't initially consider: some soy sauce, some vinegars, some caramel coloring, some cosmetics, lip balms/glosses, lotions, soaps, shampoos, etc. Many people also forget that the products their spouses use can become ingested when you kiss them.

Living a lifestyle that is truly free from ingesting gluten is difficult, and suggesting otherwise ("just try eating gluten free") is a disservice to the Celiac community as a whole. This is why the Celiac Foundation issued a warning against Elisabeth Hasselbeck's new book.

The post you are linking to talks about the lady that is suing Hasselbeck. If the Celiac Foundation to which that reference is made means the website that these boards are on, then I would incorage you to read this.

http://www.celiac.com/blogs/153/Did-Elisab...-Free-Diet.html

That doesn't sound like any sort of admonishment over her book.

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While I personally would agree with you about being gluten intolerant, I have read many times (and had my doctor tell me) that the "definitive diagnosis" is through biopsy.

Many of the problems associated seem to go way beyond the villi however and extend to most systems in the body. Gluten intolerance seems like the actual parent problem. Villus atrophy being one symptom there of. This way of looking at it is also in the book "Healthier Without Wheat"

However if you feel terrible when you eat gluten, and feel great when you don't it wouldn't make sense to start eating gluten again, even if Celiac Disease was ruled out. Especially since even with a biopsy you can get false negatives.

The reason I even knew to try a gluten free diet was that my sister has been extremely ill, in and out of the hospitals for about two years with potassium crashes. Why would I risk that over "trying gluten free"? We shared so many of the same symptoms hers was just at a more critical level.

I don't care if I am ever graced with a "celiac diagnosis" I know I always used to feel like I had been run over by a bus, and now I don't. Why would I want to go back?

Edit: My sister still hasn't been "diagnosed" either. She is still in danger of having to go back to the hospital. Her biopsy isn't scheduled till August. Which may or may not tell her anything. Her blood tests were "inconclusive".

Let's narrow down the criteria for a Celiac diagnosis once more, just for clarification. Villi damage from gluten can only occur if you have Celiac Disease. You must have the genetics for this, but having the genes does not necessarily mean that you have active Celiac. You can have Celiac without detectable villi damage, or positive antibody blood results. If your blood tests positive for Celiac, there is almost 100% chance that you have it. An Endoscopy can reveal the extent of the damage, but it sometimes does not show any at all even when Celiac is present. If the endoscope test is positive, regardless of blood test results, you have Celiac. An individual can have many problems from ingesting gluten, whether he/she has Celiac or not.

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The problem with simply trying the gluten-free diet without diagnosis is that there are many hidden sources of gluten that are difficult to discover. Even for the seasoned veteran, living a gluten-free diet takes effort and focus, especially when other people are preparing your food, such as when you travel or dine out. There are also sources of gluten that many people don't initially consider: some soy sauce, some vinegars, some caramel coloring, some cosmetics, lip balms/glosses, lotions, soaps, shampoos, etc. Many people also forget that the products their spouses use can become ingested when you kiss them.

Living a lifestyle that is truly free from ingesting gluten is difficult, and suggesting otherwise ("just try eating gluten free") is a disservice to the Celiac community as a whole. This is why the Celiac Foundation issued a warning against Elisabeth Hasselbeck's new book.

I'm going to have to disagree with you on most points of your post. Living gluten free isn't THAT hard. It is if you don't take the time to learn and research and read. There are many websites, books, and support groups that give you the information you need. Eating out does pose a challenge, but that's because of the unknown factor that restaurant kitchens have. The people working there probably have no idea what gluten is, nevermind about cross contamination. It sucks for those who have to be gluten free, but if the option is getting sick or eating at home, I know which I would choose.

You seem to give off an air that being gluten free should only be for people that have been officially diagnosed. Well, some people cannot afford the medical tests necessary for it. Most people have insurance deductables or heck, some may not insurance at all. And a biopsy isn't cheap. Nor is it necessary. If people can eat gluten free and feel better, who is to say they need some piece of paper to tell them not to eat it. It's not like a disease where there is a cure or a medical treatment. It's food! My brother has lactose intollerance. Did he go to a Dr. for a diagnosis? No he quit eating dairy! Problem solved!

I don't think telling people to try eating gluten-free is doing a disservice at all. It might make them feel better. And, I don't know about you, but I HAVE read Elizabeth Hasselbeck's book. It was the first one on celiac disease I read several months ago, and I've read many more since. She explained how she figured out she has celiac disease and she also has a Dr. that is the leading resource of research and diagnosis on celiac disease write the foreword. Not to mention the fact that she recommends people asking their Dr. to be tested. So I'm not entirely sure why you would be against her book. If anything, she has made celiac disease become a more known topic. Her book has put celiac disease on a more public level that people are responding to and can relate to.

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The problem with simply trying the gluten-free diet without diagnosis is that there are many hidden sources of gluten that are difficult to discover.

A diagnosis will not make finding hidden gluten any easier.

Even for the seasoned veteran, living a gluten-free diet takes effort and focus, especially when other people are preparing your food, such as when you travel or dine out. There are also sources of gluten that many people don't initially consider: some soy sauce, some vinegars, some caramel coloring, some cosmetics, lip balms/glosses, lotions, soaps, shampoos, etc. Many people also forget that the products their spouses use can become ingested when you kiss them.

This is only in the learning phase. After getting used to what food works, what products work and what procedures work, a person slides into the lifestyle they've learned and it all becomes habit.

Living a lifestyle that is truly free from ingesting gluten is difficult, and suggesting otherwise ("just try eating gluten free") is a disservice to the Celiac community as a whole.

I disagree. Just try gluten-free can save you years of illness and long term physical damage. Many would have sought higher education or work promotions or bettered our lives if we had just tried gluten-free and felt the benefits instead of relying on dr's so long. For me personally, eating gluten-free is a pleasure when considering the alternative.

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Let's narrow down the criteria for a Celiac diagnosis once more, just for clarification. Villi damage from gluten can only occur if you have Celiac Disease. You must have the genetics for this, but having the genes does not necessarily mean that you have active Celiac. You can have Celiac without detectable villi damage, or positive antibody blood results. If your blood tests positive for Celiac, there is almost 100% chance that you have it. An Endoscopy can reveal the extent of the damage, but it sometimes does not show any at all even when Celiac is present. If the endoscope test is positive, regardless of blood test results, you have Celiac. An individual can have many problems from ingesting gluten, whether he/she has Celiac or not.

I have also seen an overwhelming amount of literature that states that Celiac disease is defined by villus atrophy. Take for example this site:

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

I have also seen what you are referring to described as non-celiac gluten intolerance. For example in the book "Healthier Without Wheat" the author describes gluten intolerance as a much broader problem with celiac disease being a small subset of that problem.

I personally have no problem calling the whole thing celiac disease, or gluten intolerance. Like I said in my first post. If eating gluten makes you feel bad, and you feel better not eating it, then stop eating it. Having to put an exact label or diagnosis on it before doing anything is just letting the damage continue.

There is also a danger of people being told they don't have celiac disease and then them continuing to eat gluten and making themselves sick.

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I have also seen an overwhelming amount of literature that states that Celiac disease is defined by villus atrophy. Take for example this site:

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

I have also seen what you are referring to described as non-celiac gluten intolerance. For example in the book "Healthier Without Wheat" the author describes gluten intolerance as a much broader problem with celiac disease being a small subset of that problem.

I personally have no problem calling the whole thing celiac disease, or gluten intolerance. Like I said in my first post. If eating gluten makes you feel bad, and you feel better not eating it, then stop eating it. Having to put an exact label or diagnosis on it before doing anything is just letting the damage continue.

There is also a danger of people being told they don't have celiac disease and then them continuing to eat gluten and making themselves sick.

I do not think that a doctor should tell someone that does not have Celiac Disease that they have it, but if tests are inconclusive then they probably should try the gluten free diet - as well as in cases of possible gluten sensitivity and intolerance.

I neglected to mention that there CAN be villi damage from medical conditions (such as HIV) other than Celiac, which in some cases must be ruled out by the physican.

Celiac disease is genetic according to experts Dr. Fasano and Dr. Peter Green. They do recognize Gluten Intolerance and Gluten Sensitivity, but do not lump them all together as Celiac, because the terminology is inaccurate from a medical standpoint.

The autoimmune response that a Celiac gets from consuming gluten is not the same thing as what a person with Gluten Sensitivity or Intolerance has - although I am certain that some people, without celiac, have other conditions, resulting frrom gluten, that are very serious - in some cases as bad or even worse than the symptoms that the average person with Celiac has experienced.

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There's no magic that happens with a diagnosis that means you'll stick to the diet and do the homework better. It's information and knowledge and a desire to live a healthy life that does that, not a diagnosis.

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TotalKnowledge, it boils down to this:

Not everyone is like you. Different people are going to have different preferences on how they "know" they can't eat gluten. Some may find a single dietary challenge enough to be convinced beyond doubt that they must forevermore eliminate every crumb of gluten. Some people will not be so certain that gluten is the only possible culprit just by "trying gluten free" and they can't ever have grandma's original-recipe cornbread at Thanksgiving dinner.

And, quite honestly, "just trying gluten free" is a little understating what is necessary to do a *PROPER* dietary challenge. The ONLY thing one should remove is gluten, and not introduce ANYTHING different (so, no subs, because they contain flours a person usually wouldn't use) nor abnormally increase the volume of anything else. And then the challenge should introduce *ONLY* gluten, not something else that the person doesn't usually eat (like, possibly, eggs).

It can take rather a lot of time and effort to do a controlled self-diagnostic, and some people do not have the time or attention to do that. It's a pain in the arse!

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You raise many interesting issues, and ask thoughtful questions.

While I personally would agree with you about being gluten intolerant, I have read many times (and had my doctor tell me) that the "definitive diagnosis" is through biopsy.

The problem with the "definitive diagnosis" being through biopsy is that this was defined 50-something years ago. At that time, the sophisticated blood tests of today weren't in use.

Doctors today still cling to this notion of the biopsy being the "gold standard" of diagnosis. I remain unconvinced of its merits, as those biopsies are a few tiny samples taken from some 22 FEET of intestines, where gluten-induced villi damage can be patchy and invisible to the eye, especially in those who have adult-onset (as in, NOT having decades of damage to make it obvious). A missed patch of damaged villi results in a "non-celiac" diagnosis--what good is that? It seems that blood tests are far more accurate (as in, fewer false negatives), as well as less profit to the doctors/hospitals.

I agree with you that dietary response is far more important than what name you call the tummy ache.

And genetic tests cannot rule celiac out! There have been people on this forum and other forums as well who have biopsy-diagnosed celiac disease, who do NOT fit the supposedly typical genetic profile. Keep in mind that European and Asian scientific community recognize 7 genes as being linked with celiac, while the US only recognizes 2. Also keep in mind that with adult-onset celiac, symptoms might occur well before villi damage, so what is thought of as "gluten intolerance" may very well be "early-stage celiac disease." I recall reading several posts by various members here, explaining that celiac was supposedly ruled out by biopsy, only to be diagnosed years later after there was finally enough damage to be seen on the repeat biopsy.

There are similar discrepancies in other areas of health concerns. B12 deficiency is another example. In the US, you are not considered to be at all deficient in B12 if your serum levels are above 200. But in Japan, you ARE considered to be deficient--and you would be treated--if your levels are less than 550.

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I personally feel that Celiac Disease and Gluten Intolerance are the same thing. Not even with Celiac being on the sever end. There are plenty of other problems that are just as sever as the villus atrophy. I also think it is a much broader problem than certainly the medical community is treating it as.

If we had not been eating wheat since recorded history and had wheat introduced later on in our development as a society then the analysis and treatment of this as a problem would be better diagnosed. If you read much into Yuca (Tapioca), Taro, or Psyllium the possible intolerance is better documented.

Since wheat consumption is so wide spread, I question even the "normal" blood test results from the celiac panel. When they determined what "normal" was did they make sure there were no gluten intolerant people in the study? My guess is no. There could have been people having reactions that brought the average up.

With it being so hard to diagnose, with so much room for error, and without any clear definition of what Celiac vs. Gluten Intolerance vs. other problems with wheat. I think it is more dangerous to not try eliminating it from the diet to see if that is what is making you sick. Is it better to go another 10 year continuously damaging your body because you haven't damaged it enough yet for a diagnosis?

We don't even know if they have covered all the bases with genetic testing. Do they know there are not more alleles out there that can contain the genetic foot print to cause an individual to be gluten intolerant? For example I have seen several references to certain ethnic groups being more likely to carry the allele that can cause it, but I have seen nothing on some ethnic groups such as Native Americans. Does this mean they don't have it? I doubt that. Especially considering that wheat was not indigenous the states(at least I am pretty sure it wasn't here pre-contact but I haven't been able to find a definitive answer on that yet).

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I think your question is such a big issue for patients and doctors. The disease has only recently started becoming more recognized, but doctors still know very little about it and why the body has such a response. In my experience, I HAD to know. It just bothered me that I suffered for so long and I trusted doctors so much that I couldn't understand why the doctor was just as clueless as I was. In any case, doctors still have alot to learn and alot more to study before we can get past the "gold standard" test of endoscopy. (By the way, I hate that phrase now.) There is a great book I just found that helps put some insight into our bodies and wheat and why some people stay on the gluten-free diet when they aren't "diagnosed" with Celiac Disease. The book is called 'Heathier Without Wheat" by DR. Stephen Wangen. My children are going through the testing right now and I have found this book very helpful since they don't have the "obvious" blood results for Celiac Diease.

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<snip>

I agree with you that dietary response is far more important than what name you call the tummy ache.

And genetic tests cannot rule celiac out! There have been people on this forum and other forums as well who have biopsy-diagnosed celiac disease, who do NOT fit the supposedly typical genetic profile. Keep in mind that European and Asian scientific community recognize 7 genes as being linked with celiac, while the US only recognizes 2. Also keep in mind that with adult-onset celiac, symptoms might occur well before villi damage, so what is thought of as "gluten intolerance" may very well be "early-stage celiac disease." I recall reading several posts by various members here, explaining that celiac was supposedly ruled out by biopsy, only to be diagnosed years later after there was finally enough damage to be seen on the repeat biopsy.

There are similar discrepancies in other areas of health concerns. B12 deficiency is another example. In the US, you are not considered to be at all deficient in B12 if your serum levels are above 200. But in Japan, you ARE considered to be deficient--and you would be treated--if your levels are less than 550.

FiddleFaddle...

I agree with you 100%. Dietary response really should be the number one diagnosis as the gluten is obviously doing something bad to our systems or we wouldn't be reacting to it. I also agree with TotalKnowledge that, IMHO, Celiac Disease and gluten-intolerance are one in the same. I mean, when a woman is only a few weeks pregnant her pregnancy hormones are at low levels. As the pregnancy progresses those levels continue to rise. Do we call a woman with early-pregnancy level hormones "sterility intolerant" and only deem her "pregnant" once her levels get beyond a pre-determined point? NO! She's pregnant from the start. There just is no such thing as being a "little bit" pregnant and it's my feeling that what people term "gluten intolerant" is just early celiac disease. As I see it, the whole argument over celiac disease vs. gluten intolerance is just nothing more than someone engaging in an "I'm sicker than you" argument. Silliness.

Also, FiddleFaddle...I'm interested in what 7 genes the Europeans and Japanese have identified as celiac disease genes. I went the rounds with my original doc about the B12 thing. I tested at 251, felt horrible and was having continuous ulcers in my mouth. I took the European recommendations of levels between 1100-1300 to him and strong-armed him into starting the B12 shots. I felt better nearly immediately. I test in at about 1400 now and I'm planning on staying that way and my new doc's ok with it. I'd be interested in knowing about the genes, too, as it seems as though the American health system that thinks it's so grand is actually decades behind.

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I don't believe that celiac and gluten intolerance are the same thing. Celiac is a well defined response by the autoimmune system to gluten. (Well defined doesn't mean easy to diagnose or widely known.) Gluten intolerance has no widely accepted definition. Some people on this site use gluten intolerance as an umbrella term for "something bad happens when I consume gluten" while other use it as specifically non-Celiac gluten reactions. In some contexts, a dietary intolerance is used when the body doesn't produce something needed to digest the item (as in lactose intolerance).

As to why it matters, in general medical issues occur in clusters. If you are have an allergy to one item, you are more likely than the general population to have other allergies. If you are having autoimmune problems such as celiac you are more likely to have other autoimmune issues such as hypothyroidism or diabetes.

My view on the diagnosis is: Celiac disease mimics many other diseases in terms of symptoms. There is no direct test for celiac disease. The method of diagnosis is to test for the reaction of the body to gluten. Any medical test can have false negatives or false positives. Having multiple positive results from different tests, greatly reduces to changes of a false positive. The biopsy isn't the gold standard because of its diagnostic ability alone. It is the gold standard because a positive result on the biopsy is usually the final in a series of tests. I don't think most doctors understand probability well enough to understand that distinction.

The pregnancy anaolgy doesn't hold up because regardless of how far into the preganancy you are the same body sub-system is involved. With the gluten issues, it could be the digestive system, the autoimmune system or a "true" allergy.

Dismissing this as an "I'm sicker than you" argument is just making assumptions about what other people are thinking and that is a non-starter. I'm a biopsy diagnosed Celiac and I know there are people without a diagnosis who have much worse reactions to gluten than I do.

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Here is an interesting article by a doctor who says that villous atrophy should no longer be called the gold standard of diagnosis for celiac disease:

http://glutendoctors.blogspot.com/

In addition, there are many people now who do not believe gluten intolerance is really a disorder or disease but instead a normal response to toxins in food that we are not designed to eat. Check out information on paleolithic or primal eating for more information. There is more and more evidence that gluten (and lectins in beans) cause damage to everyone. Some may have genetic configurations that respond to gluten in more drastic ways, but no one should really be eating the stuff in my opinion (and many others).

I know I have an intolerance to gluten. I don't need a test to prove it. I also believe that I am not sick, I do not have a disease or disorder, and that my genes are just fine, thank you (DQ2, DQ1). I think my body was doing a great job warning me that gluten was a poison and it just took me a long time to listen (after wading through all the misinformation that the backward medical community "experts" put forth). Can't blame them really - they are just listening to all the other so-called experts. After putting in lots of time reading and synthesizing information, I am fully convinced no one should eat gluten. And I am sure, when big agribusiness gets wind of the increasing amounts of gluten-free eating going on out there, that there will be some big propaganda campaigns to convince everyone that gluten is OK. Unless, of course, they find a pill to help your body tolerate gluten, then everyone will be encouraged to take those instead of cutting out gluten.

As I tell my students, always ask who is making money from this? If there is an answer, then the motivation becomes very clear.

Thanks for letting me soapbox ;)

Laurie

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<snip>

In addition, there are many people now who do not believe gluten intolerance is really a disorder or disease but instead a normal response to toxins in food that we are not designed to eat. Check out information on paleolithic or primal eating for more information. There is more and more evidence that gluten (and lectins in beans) cause damage to everyone. Some may have genetic configurations that respond to gluten in more drastic ways, but no one should really be eating the stuff in my opinion (and many others).

I know I have an intolerance to gluten. I don't need a test to prove it. I also believe that I am not sick, I do not have a disease or disorder, and that my genes are just fine, thank you (DQ2, DQ1). I think my body was doing a great job warning me that gluten was a poison and it just took me a long time to listen (after wading through all the misinformation that the backward medical community "experts" put forth). Can't blame them really - they are just listening to all the other so-called experts. After putting in lots of time reading and synthesizing information, I am fully convinced no one should eat gluten.

<snip>

I agree with what you are saying here. Early on in my readings of gluten intolerance, it seemed to be more like that gluten/gliadin was acting like a toxin. Many of the Celiac response seems like what would happen if someone were exposed to a mild toxin over a long period of time. If you look at what would happen if you took a test group of mice, and introduced a toxin into their diet. You wouldn't call the ones that did poorly toxin intolerant. You would be more likely to call the ones that did ok toxin tolerant, or toxin resistant.

When the fda approved Psyllium husk powder, it lists several possible "side effects" of psyllium powder that are very much like the symptoms of celiac disease. Is one set a possible side effect while the other set a genetic deficiency? Since humans can exist without gluten I am not sure how you could even classify it as a disease. Simply put people with gluten intolerance cannot digest gluten correctly. There is probably a reason the body reacts so negatively since it is constantly being exposed to what is to it a toxin.

I also share your reluctance to then be excited by the prospect of some medication being developed so that people can tolerate gluten better. It could just trick the immune system into not defending itself against what is to you a mild toxin. It would make the long term complications of celiac disease much worse, while keeping you from having tummy aches.

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I had very low potassium problems as well, so thankful you and your sister are on the road to recovery! After confirming my DH I cancelled the appt to talk about the biopsy with the GI, I've felt so much better these past few weeks, no way am I doing a gluten challenge...I have nightmares about accidentally eating bread LOL. Its amazing how it affects not just you physically, but emotionally as well, I feel like the sun has finally started to shine in my life..

mini hijack,

I used to live in Wilmington, lived near both Wrightsville and Carolina beaches, last place I lived was right behind the PT's ...oh man I miss living there so much. Hope you're having a beautiful day there, so sniff some salty air for me...I miss running at Wrightsville....sigh

Have a blessed day!

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    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
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