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What Is The Point Of Diagnosis?


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#31 Tim-n-VA

 
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Posted 12 July 2009 - 01:04 PM

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.


I guess I wasn't clear. I never meant to imply that you had to have the gold standard diagnosis to have Celiac. I think many people, including doctors, misunderstand the concept of varying levels of certainty. The biopsy in conjunction with a blood test and dietary response leaves very little chance of a misdiagnosis. That makes it a "gold standard". It doesn't mean that the only means of getting a correct diagnosis is via the biopsy. Not knowing which isn't justification for saying they are all the same.

Somone who has a positive blood test but a negative biopsy could have another auto-immune disease (source). Or they could have a less advanced case of Celiac. Or they could be a gold standard diagnosed Celiac who had been gluten free for a long time but had an accidental glutening shortly before the blood test.
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#32 tarnalberry

 
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Posted 12 July 2009 - 02:26 PM

and to add to what tim-in-va said, negative blood work but a positive biopsy can be caused by other things. not as common, but still possible. enteropathy (destruction of the villi) has been documented other causes - including dairy. (this is rare and I do not suggest that we should all go dairy testing if we're otherwise feeling fine.)
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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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#33 bittykitty

 
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Posted 12 July 2009 - 02:43 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 hink 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.

I'll also admit that one of the reasons I started looking at being tested was to have a quick end to explaing why I can't eat at family gatherings,restraunts,office parties,especially for my significant other,who isn't exactly being doubtful,but just cannot seem to grasp the whole picture(The old"I'm sure they have SOMETHING you can eat"), and co-workers that make idiot comments("I wish I couldn't eat all that stuff.Then I'd lose weight too!").But in reality, why would I waste money on tests for something I already know?I've likely been misdiagnosed by doctors for 24 years of my life..all the behavioral problems I had (depression,compulsive acts,sometimes borderline autistic behaviors)went away as soon as I changed my diet.The dozens of doctors I saw over the years never made a mention of a possible food intolerance.The three hospital visits in the last year for unexplained vertigo,severe joint pain, and a completely insatiable appetite despite the fact that I was sleeping most of the time I wasn't at work,and NOBODY thought to test me.It took a desperate juice fast for three days in November ,then food re-introduction for me to figure it out.Why should I trust the medical community when they had so many chances in the past to catch it,but couldn't?
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#34 darlindeb25

 
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Posted 12 July 2009 - 05:46 PM

So much bouncing back and forth in here...good discussion.

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.


Villi damage can occur without celiac disease. Also, as others have stated, specific genes are no longer considered "only" celiac genes by everyone, this opinion has changed. The whole problem with diagnosing celiac is, they really do not know enough yet, and are guessing, they only think DQ2 and DQ8 are the only celiac genes, time will tell.

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.


I totally agree, and it's a great read, Dr. Stephen Wangen makes so much sense.

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.


There are many doctors who would argue this point. Gluten intolerance is definitely real, and not an "umbrella term" for those of us who are dealing with it. Even Dr. Green is now stating that gluten intolerance is very real, and even more widespread than celiac disease.

I found this today, and article posted today:

http://nutritionrese...ealth-problems/

GLUTEN INTOLERANCE: Because gluten affects the small intestine (creating small holes in the lining causing “Leaky Gut Syndrome”), among intolerant patients, digestion will be adversely affected which can lead to bowel problems, nutrient malabsorption, and even internal poisoning. Some sources also claim colon cancer can be the eventual result. Leaky Gut Syndrome allows foreign particles (whatever is in the gut, including bacteria) into the bloodstream. This leads to symptoms which are signs that there is something amiss.

“Gluten intolerance is a broad term which includes all kinds of sensitivity to Gluten. A small proportion of Gluten intolerant people will test positive to Celiac Disease test, and so are called Celiacs (~0.5% of the population). But most Gluten sensitive people return negative or inconclusive results upon Celiac testing. The correct term for these people is Non-Celiac Gluten Sensitive (NCGS) and may be as many as ~15% of all people or 1 in 7. The most accurate and effective way to identify NCGS is to do an Elimination Diet.”


1 in 7 people are gluten sensitive/intolerant, 15% as opposed to 0.5% being celiac. It's not about who's sicker, it's about getting better, living a healthy life again. We all want the same thing. I will continue to tell people I have celiac disease/gluten intolerance, even though I actually have no definitive diagnosis of celiac, although, my PCP believes I am a celiac. Thats good enough for me, that and the change in my life since going gluten free 9 years ago.
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#35 lcarter

 
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Posted 12 July 2009 - 06:27 PM

Why should I trust the medical community when they had so many chances in the past to catch it,but couldn't?

Oh! Right on!!! I feel the same way. I am so frustrated with the medical community and the way I have been treated [or more correctly "ignored"] concerning my digestive problems since I was an infant... for over 60+ yrs. Many, many doctors had a chance to catch it...but NOT ONE of them ever so much as mentioned the possibility of celiac. Oh, I have heard "pyschosomatic illness", "nervous stomach", "IBS"- a number of times, and "lactose intolerance"...mind you, all without any testing! So, out of necessity, I am self diagnosed, too -- not because I didn't want a medical diagnosis or try to seek one, but because I never found a doctor that knew anything about digestive disorders [that included 3 gastroenterologist] or one that was interested enough to try and help me figure out what was causing my problems. Now, that the medical establishment is waking up to Celiac, I just can't justify to myself why I would want to submit to the torture I would have to go though by going back on a gluten inclusion diet, just so some doctor "might" see something on an endoscopy test or in blood work. Since beginning the gluten and dairy free diet, for the first time in my life: I have gained a normal weight, have no more mouth ulcers, no more nausea from meals, no more diarrhea and projectile vomiting episodes, and especially, no more ER visits doubled up in pain because my intestines are so swollen they are almost totally closed, etc..... [The only thing I ever found that ended one of these dramatic episodes was to quit eating for 3 days and live only on liquids...followed by 2 days of rice and applesauce...then, gently start back on "normal" food..that is, until the next episode hit. I never did have symptoms continuously. It was episodic and seemed to be more of a delayed reaction that would build up over days. So, it was really difficult to pinpoint the exact cause.] I really could have used some help with professional medical intervention...instead I suffered for years until I decided to try the diet on my own after discovering Celiac on the internet. What a dramatic difference the diet has made in my life!
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Gluten + Dairy + Fructose Intolerant, Osteoporosis, Hasi's/ Hypothyroid, Sjogren's, Migraine Deviate with Visual Aura, Peripheral Neuropathy, DQ2 and DQ8 negative [Prometheus Labs]

#36 Tim-n-VA

 
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Posted 13 July 2009 - 03:58 AM

There are many doctors who would argue this point. Gluten intolerance is definitely real, and not an "umbrella term" for those of us who are dealing with it. Even Dr. Green is now stating that gluten intolerance is very real, and even more widespread than celiac disease.


Saying it is an umbrella term is not the same as saying it is not real, it is saying that it is a real thing that could be more than one thing. The quote you included even said this:

Gluten intolerance is a broad term which includes all kinds of sensitivity to Gluten.


As a side note, my preference would be for the phrase "gluten sensitivity" versus "gluten intolerance" to avoid the confusion with digestive intolerances like lactose intolerance. The Dr. Green quote above switches between the terms. From what I've read, Enterolab uses gluten sensitivity.
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#37 shendler

 
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Posted 13 July 2009 - 04:13 AM

I was told I did not have by two doctor's. My biopsy came back negative but two blood tests were 100x normal. They would always diagnosis me with something else. I was always tired but to the point where I could sleep 14 hours a day and still be tired. I didn't feel depressed, but because there was no medical reason for me being tired I was depressed. When I asked about frequent smelly bms I had IBS. Or I was eating too much at once and I should eat smaller meals. When I had an episode where I passed out and was sleeping for three days straight. I had a seizure unrelated to seizure disorders and that I shouldn't worry unless it happens again.

Having a diagnosis was important to me because I felt like I wasn't being taken seriously. I am feeling much better now that I'm gluten free and I am happy I decided to avoid gluten on my own. I just think if doctors avoid people's symptoms and do not take this seriously, who will.
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#38 Lisa

 
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Posted 13 July 2009 - 04:51 AM

As a side note, my preference would be for the phrase "gluten sensitivity" versus "gluten intolerance" to avoid the confusion with digestive intolerances like lactose intolerance. The Dr. Green quote above switches between the terms. From what I've read, Enterolab uses gluten sensitivity.



I agree tremendously Tim. The interchange between "gluten sensitivity" and "gluten intolerance" have created great misunderstanding, confusion and frustration here on C.com for the many years that I have been involved.
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#39 OptimisticMom42

 
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Posted 13 July 2009 - 04:52 AM

Hello all,

Maybe we should be discussing Celiacs Spectrum instead of celiacs vs. gluten intolerence.

United we stand, divided we fall.

I enjoyed this lively, thought provoking discussion.

Take care, RA
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#40 TotalKnowledge

 
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Posted 13 July 2009 - 05:28 AM

I agree tremendously Tim. The interchange between "gluten sensitivity" and "gluten intolerance" have created great misunderstanding, confusion and frustration here on C.com for the many years that I have been involved.


I personally don't like gluten sensitivity. It seems to underemphasis what is a very serious condition. I guess the same could be said for the intolerance label, but I think that one is to a lesser degree. I also think disease is a misnomer. I don't really have a suggestion to fill the gap. Perhaps Celiac Spectrum. It works better than the others.
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#41 darlindeb25

 
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Posted 13 July 2009 - 08:33 AM

As a side note, my preference would be for the phrase "gluten sensitivity" versus "gluten intolerance" to avoid the confusion with digestive intolerances like lactose intolerance. The Dr. Green quote above switches between the terms. From what I've read, Enterolab uses gluten sensitivity.


My preference is "gluten intolerant". Gluten sensitive does not cover an intolerance. I am not gluten sensitive, I am gluten intolerant...my gluten intolerance was a digestive intolerance, no confusion in my mind. I lived with diarrhea daily, I am still dealing with malabsorption problems...definitely gluten intolerance.

I personally don't like gluten sensitivity. It seems to underemphasis what is a very serious condition. I guess the same could be said for the intolerance label, but I think that one is to a lesser degree. I also think disease is a misnomer. I don't really have a suggestion to fill the gap. Perhaps Celiac Spectrum. It works better than the others.


I agree totally. Gluten Spectrum includes it all, including celiac...good idea RA. Gluten sensitivity does underemphasis a very serious condition, that's why there is gluten sensitiviy, and gluten intolerance.
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!




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