Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Diagnosis And Statistics

gfp

Recommended Posts

gfp Enthusiast
gfp
Posted
According to the study the mean period of gluten exposure was 2.4 years, although it was likely longer as recent studies have shown that many celiacs are asymptomatic for many years before damage occurs that is severe enough to cause obvious symptoms.

Yet another article proving conslusively thay celiac disease is actually caused by the actual biopsy. ???

Using the biopsy as the gold standard 100% of patients not biopsied did not have celiac disease. So statistically only patients biopsied had celiac disease. The control (blood tests) do not have celiac disease since they didn't have a biopsy.

Meanwhile celaic STARTs with the biopsy, those of us who suffered before the biopsy presumably were making it up since to have celiac disease you must have a biopsy.

This seems like some stupid catch-22. Any study that studies celiac disease has to use the biopsy as a gold standard... (or be ridiculed) and regardless of any other symptoms for it to be called celiac disease they need a biopsy? Every time blood tests are compared its with biopsy as a gold standard and presumed to be 100% reliable...

Am I the only person thinks this is ironic?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


tom Contributor
tom
Posted

The whole thing just pisses me off.

jerseyangel Proficient
jerseyangel
Posted
Meanwhile celaic STARTs with the biopsy, those of us who suffered before the biopsy presumably were making it up since to have celiac disease you must have a biopsy.

The whole thing just pisses me off.

Yes it does me, too. :(

ravenwoodglass Mentor
ravenwoodglass
Posted

Hopefully someday they will realize that celiac is a 'spectrum' disorder and to only use total villi destruction as a diagnostic proof when so many are effected in so many other ways is frankly inhumane. It's too bad they insist that we be almost dead before they will diagnose, many times our lives are severely impacted long before that occurs.

gfp Enthusiast
gfp
Posted
  • Author
Hopefully someday they will realize that celiac is a 'spectrum' disorder and to only use total villi destruction as a diagnostic proof when so many are effected in so many other ways is frankly inhumane. It's too bad they insist that we be almost dead before they will diagnose, many times our lives are severely impacted long before that occurs.

In your case the damage was both severe and not completely repairable...

I just don't see how if every single study uses biopsy as the only positive that we will ever get to that point.

celiac disease seems to be one of a very select group of diseases that is DEFINED by a test.. and because it has such a high false negative rate any suite of tests where the biopsy is positive and EVERY OTHER test is positve (including dietry response and the patient actualy getting better) they seem happy to throw out every other test...

Its impossible to actually prove the false negatives because the test is definitive... catch-22

cruelshoes Enthusiast
cruelshoes
Posted

I agree that it is frustrating that people have to suffer so long to get a diagnosis. It's really hard sometimes to reconcile making oneself sick to get a positive biopsy.

Hypothetically

An executive decree has just passed and we are now the head of the Celiac Consortium of the World. We have to decide the best way to diagnose people. What would be our proposal? What would strike the ideal balance between diagnosing the right people (not misdiagnosing positive or negative) and keeping the suffering to a minimum? Something that could be scientifically validated I mean, not just a "listen to your body" kind of thing.

This is not a challenge, but a serious question. I too was close to death when I got my diagnosis, and would like to make it so others do not have to go through the same.

motif Contributor
motif
Posted

in my opinion biopsy doesn't make sense, if you feel better without gluten you just go gluten free diet and that's it.

Why to do biopsy? to proof what?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


gfp Enthusiast
gfp
Posted
  • Author
I agree that it is frustrating that people have to suffer so long to get a diagnosis. It's really hard sometimes to reconcile making oneself sick to get a positive biopsy.

Hypothetically

An executive decree has just passed and we are now the head of the Celiac Consortium of the World. We have to decide the best way to diagnose people. What would be our proposal? What would strike the ideal balance between diagnosing the right people (not misdiagnosing positive or negative) and keeping the suffering to a minimum? Something that could be scientifically validated I mean, not just a "listen to your body" kind of thing.

Ok, first thing we need a study BUT that study needs a control.

Italy manages to screen everyone at school.

Scientifically you can't have a perfect test.... you need to have one that has either flase negatives or false positives but screen everyone at school and awareness sky rockets. We need more accurate controls on blood tests, most studies have to presume that celiac disease is so rare in the general population that serology for the general population is used as a control. We need realistic figures for all age groups, not apply a general figure to toddlers...

The next big flaw in most comparitive diagnostic studies is that people actually get gluten-free diets when they say they do. Unfortunately we know this is often not the case.

For a control we ned a set of volunteers who are given only food tested to be 100% gluten-free. Supposing we had the resources we would rent a huge house and gut the kitchens .. make them 100% gluten-free and carry out the tests here. The house would need to be in a area NOT growing wheat...

No food would be allowed in that was not TESTED... (and I mean tested ... full whack GC-MS so the house needs its own lab, sterile of gluten)...

Everyone in the study, controls and not would be fed 100% tested food... we would be tested daily for blood counts .. and the fluctuations mapped.

A second house would house the "eating gluten group". Everyone here would be the "normal test" and also get blood tests daily... anyone who then tests positive would be moved to the gluten-free house and removed from the control group.

JennyC Enthusiast
JennyC
Posted

It frustrates me when people, including doctors, act like the only way to get diagnosed is to have a positive biopsy. More and more it's becoming widely accepted that positive Ttg tests, along with the celiac panel, and positive dietary response are acceptable means of diagnosis. In theory positive Ttg can be associated with other autoimmune disorders, for example some forms of liver failure or autoimmune diabetes, but if you also have the celiac symptoms and they improve on the diet and after time and your Ttg drops, that seems like excellent proof of celiac disease. Sometimes I feel like some people think I sidestepped diagnosis for my son because I did not have him biopsied, but I feel 100% confident in my decision. Can the people who have positive blood work and negative biopsies who go back on gluten say the same?

Jestgar Rising Star
Jestgar
Posted
Scientifically you can't have a perfect test.... you need to have one that has either flase negatives or false positives but screen everyone at school and awareness sky rockets. We need more accurate controls on blood tests, most studies have to presume that celiac disease is so rare in the general population that serology for the general population is used as a control. We need realistic figures for all age groups, not apply a general figure to toddlers...

I have a theoretical test. It would be pricey, if it works at all, but it would be fairly accurate. Unfortunately, it would be difficult to get the money to test it. The medical community accepts only biopsy proven Celiac disease, and I just don't happen to believe that a destroyed intestine is the definition of the disease; it's just one of the symptoms.

Dunno. I've actually been thinking about this for a while. Maybe I'll see if I can get my boss to foot the bill for a few trials (on myself - no biopsy) to see if it would even work.

jerseyangel Proficient
jerseyangel
Posted
The medical community accepts only biopsy proven Celiac disease, and I just don't happen to believe that a destroyed intestine is the definition of the disease; it's just one of the symptoms.

I've never heard it put exactly this way before, but yes--that is a perfect explanation. Perhaps, the villi damage is mearly a symptom, and one that some get later rather than sooner.

I hope you get to do your testing, Jess--I would be most interested in hearing about it.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Like many things in the medical community, it comes down to $$$$.

The doctors don't earn a penny if you change your diet and your symptoms go away. Neither does the pharmaceutical industry.

But the doctors, pharm industry, and hospitals/surgical centers all get quite rich just from your endoscopy. The doctors and the pharm industry get even richer when you have to buy meds that supposedly "treat" your symptoms while you continue to eat gluten, thereby causing more and more damage.

The insurance industry, of course, supports this 1005, as they are also funded in part by the pharm industry.

The whole thing is shockingly unethical.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748
    dcarter1682
    Newest Member
    dcarter1682
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.