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What Is The Point Of Diagnosis?


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#16 Nancym

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Posted 10 July 2009 - 01:37 PM

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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#17 tarnalberry

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Posted 10 July 2009 - 01:54 PM

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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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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#18 Fiddle-Faddle

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Posted 10 July 2009 - 07:31 PM

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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#19 TotalKnowledge

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Posted 12 July 2009 - 06:31 AM

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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#20 fripp017

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Posted 12 July 2009 - 06:53 AM

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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#21 BigDogz

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Posted 12 July 2009 - 07:30 AM

<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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#22 Tim-n-VA

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Posted 12 July 2009 - 08:12 AM

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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#23 lbd

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Posted 12 July 2009 - 08:12 AM

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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#24 TotalKnowledge

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Posted 12 July 2009 - 09:00 AM

<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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#25 tiredofbeingsickandtired

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Posted 12 July 2009 - 09:13 AM

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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#26 Nancym

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Posted 12 July 2009 - 09:21 AM

I completely agree with you TotalKnowledge. :D
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#27 TotalKnowledge

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Posted 12 July 2009 - 09:37 AM

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!


PT's Grill? I work across the road from PT's grill. Well the one near Wrightsville anyway. There is a new one in Porter's Neck. There is also a Cook Out on College road that I am sure is biting into their profit margin.

None of which I can eat I might point out lol.

I also stopped eating pork :( No NC BBQ for me.
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#28 tiredofbeingsickandtired

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Posted 12 July 2009 - 09:48 AM

I love BBQ, the best place near where I am in Raleigh is Hog Heaven which I'm sure is not gluten free. But there isn't I food I miss that would be worth going back to feeling so horrible for. I'm not tempted to cheat, I'm so glad to finally start to feel "normal".


I understand what you're saying. I wish that the Dr.s had caught what was going on with me before I got so ill. But I have all the answer's I need. My kid's Dr (who used to be my Dr) still questions celiac because I haven't had the biopsy even though DH was confirmed... but I just politely remind her that there is a drastically different person standing in front of her who is confident about the diagnosis. The kids are getting tested soon, I'm trying to get them to eat more gluten because they've had so much gluten-free food with me. But my son who has had awful stomach problems/joint pain told me the other day he wasn't eating it anymore...because it makes him feel too bad. I'm not going to push it at all because I know how he feels.
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#29 BigDogz

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Posted 12 July 2009 - 11:36 AM

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.


If the scope and biopsy are such a wonderful diagnotic tool for Celiac, how do you explain those people who have positive blood tests and yet show no villous changes on a biopsy? Or what about those that have a confirmed diagnosis of DH but still have negative intestinal studies? Is it due to that person not having been exposed to gluten long enough to show an auto-immune response in the gut? Who knows.

Which, of course, brings me right back around to my opinions on intolerance vs. celiac disease. Could it be the allegedly "intolerant" are just 'fledgling' Celiacs who haven't been "intolerant" long enough, i. e. very early in the celiac disease process, for an auto-immune response to show up? Could it be that they WOULD show an AI response eventually if they'd continued consuming gluten? Anything's possible. We just don't know enough about celiac disease to say that the only "true" Celiac is the one showing an AI response. Secondly, doctors are JUST NOW coming around to the idea that there is such a thing as pre-diabetes...those people whose sugars remain "inexplicably" elevated but not to the point where they are considered diabetic. Frankly, it's just a ridiculous splitting of hairs and what's even dumber is the way some doctors still ignore it until the sugars become such a problem that it sits up and slaps them in the face! By that time, the damage is done and that's how I feel about the gluten intolerant label. The whole intolerant name gives people the impression that "Well, it's not celiac disease, so I can cheat a little whenever I want." Who knows what damage that attitude and misperception is doing to people?
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#30 sneezydiva

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Posted 12 July 2009 - 12:04 PM

I really wanted a diagnosis, not so much to convince myself, but to convince others. I was at a point where I KNEW in my gut (no pun intended) I had Celiac disease. I knew from internet research the chances of testing false-negative on the blood test were high, and I resolved to go on the diet regardless. Well, I did test negative to Celiac, but I also tested positive to a wheat allergy. Plus,the allergist disagreed with my GI that the Celiac test was negative, he said it was inconclusive, and told me to avoid all gluten, not just wheat. I am a believer that most gluten-intolerance is Celiac that hasn't progressed far enough to be picked up by current testing methods.

I had already been dabbling with the diet before (which probably messed up the blood test), and got a lot of eye rolling and skepticism from family and friends. All that stopped when the doctor bestowed the wheat allergy diagnosis on me. People who accused me of being lazy in the past have apologized to me now that they understand the reason and have seen my dramatic recovery. That wouldn't have happened without a diagnosis.

So I think it is always worth it to at least try to get a diagnosis. But if results are negative, don't let that stop you from doing what you know must be done. Another reason to try is the more people who are diagnosed, the more the food industry will have to adapt, and that will make life easier on everyone, whether you are "officially" diagnosed or self-diagnosed.
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Celiac blood testing negative July 2007
Confirmed diagnosis of wheat allergy by skin test Dec 2007
Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)
Gluten-free since December 2007

Life Long Symptoms
Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted
Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.
Severe "sinus" headaches

More Recent Symptoms
IBS symptoms
Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.


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