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What Is The Point Of Diagnosis?


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#1 TotalKnowledge

 
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Posted 10 July 2009 - 07:24 AM

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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#2 LDJofDenver

 
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Posted 10 July 2009 - 07:55 AM

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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Diagnosed 8-8-08 (I think I'll remember that date!)
Positive blood panel
Endoscopy a little later on confirmed, via Small Intestine Biopsy
Adult son diagnosed Celiac in his late 20s
Suspect my Mother undiagnosed Celiac

#3 GlutenFreeHub.com

 
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Posted 10 July 2009 - 08:20 AM

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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#4 ENF

 
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Posted 10 July 2009 - 09:04 AM

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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Celiac diagnosis from positive blood work & endoscope (2005)

Serologic equivalent: HLA-DQ 2,3 Subtype 2,8 (double Celiac genes)

#5 Lisa16

 
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Posted 10 July 2009 - 09:24 AM

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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#6 no-more-muffins

 
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Posted 10 July 2009 - 09:50 AM

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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No-More-Muffins
Blood and biopsy negative 6/2009, Diagnosed with IBS, "mildy active colitis" (My Dr. didn't tell me this, I saw it on the patho report)
Enterolab results negative for gluten, soy, casein, yeast and egg (maybe I have low IgA)
Gluten free diet starting post-endoscopoy 6/2009
I have found that I not only react to gluten but to soy as well. I'm still working on the dairy elimination and trial.

#7 ENF

 
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Posted 10 July 2009 - 10:27 AM

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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Celiac diagnosis from positive blood work & endoscope (2005)

Serologic equivalent: HLA-DQ 2,3 Subtype 2,8 (double Celiac genes)

#8 Gemini

 
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Posted 10 July 2009 - 10:50 AM

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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#9 TotalKnowledge

 
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Posted 10 July 2009 - 10:58 AM

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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#10 TotalKnowledge

 
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Posted 10 July 2009 - 11:19 AM

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.co...-Free-Diet.html

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

 
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Posted 10 July 2009 - 11:43 AM

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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Celiac diagnosis from positive blood work & endoscope (2005)

Serologic equivalent: HLA-DQ 2,3 Subtype 2,8 (double Celiac genes)

#12 Diana7182

 
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Posted 10 July 2009 - 11:56 AM

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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#13 ang1e0251

 
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Posted 10 July 2009 - 12:12 PM

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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#14 TotalKnowledge

 
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Posted 10 July 2009 - 12:59 PM

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.nid...es/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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#15 ENF

 
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Posted 10 July 2009 - 01:20 PM

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.nid...es/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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Celiac diagnosis from positive blood work & endoscope (2005)

Serologic equivalent: HLA-DQ 2,3 Subtype 2,8 (double Celiac genes)




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