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How is celiac disease diagnosed?

The traditional approach to diagnosing celiac disease is a three-step process:

  • Perform a biopsy of the lining of the small intestine. This is a surprisingly easy procedure which takes only a few minutes, although small children are usually sedated first, which adds to the cost and complexity of the biopsy. If the villi are damaged (flattened or atrophied mucosa), go to step 2.
  • Place the patient on a gluten-free diet for six months or longer and then perform another biopsy. If the villi are healed, go to step 3.
  • Put gluten back in the diet for six months or longer, and then perform a third biopsy. If the villi are again damaged, then the diagnosis is complete. At this point, the patient goes on a gluten-free diet for life.

Many doctors now feel that step number three is unnecessary, and some feel that even the second biopsy may be unnecessary. Part of the reason for this change in thinking is the development of three useful antibody blood tests: endomysial, reticulin (IgA), and gliadin (IgG and IgA). If the patient has been eating gluten regularly and all three tests come back positive, there is a very high chance that the patient has celiac disease. If all three tests come back negative, then it is very likely that the patient does not have celiac disease. Mixed results, which often occur, are inconclusive.

All of the laboratory tests that can be performed are strongly affected by a gluten-free diet. Tests will return negatives if the individual has been on a gluten-free diet for some time, and there is much debate about the length of time a patient must return to a gluten-laden diet before being tested. It probably depends on many factors: the level of damage that was done before starting a gluten-free diet, the length of time the person has been gluten-free, the amount of healing that has occurred, and the sensitivity of the individual to gluten.

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A tentative diagnosis of celiac sprue is usually offered if the patients symptoms clear up after some time on a gluten-free diet. This is often followed by a "challenge" in which one of the offending grains (usually wheat) is eaten to see if the symptoms reoccur. However, this approach is much less desirable than having a firm diagnosis from a combination of antibody tests and one or more biopsies.

Because a gluten-free diet precludes accurate testing, if you suspect celiac disease, it is advisable to have diagnostic tests performed before starting a gluten-free diet.

Some physicians will accept positive antibody tests, one biopsy, and improvement on a gluten-free diet as sufficient for diagnosing celiac disease. Many other doctors prefer to perform a second biopsy, feeling that if it shows normal villi after a period of eating gluten-free then the diagnosis is confirmed. There are still some doctors who prefer the three-step approach mentioned above, though most view this as unnecessary.

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4 Responses:

 
L. Mersky
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said this on
10 Jun 2012 4:13:57 PM PST
I received good information about confirming a diagnosis.

 
Willow
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
02 Mar 2013 5:34:48 PM PST
I am not supposed to eat gluten but I do anyway, and now I have side pain (left) and I have diarrhea. This has been happening over a year now. Is this bad??

 
Terri W Murray
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
02 May 2013 12:15:55 AM PST
To: Willow, At its worse celiac can be very disabling. Along w/digestive pain and diarrhea, does eating gluten make your stomach swell and extend as if 10 months pregnant? Is the gas so volumous, the passing process is as painful as it is musical? Do you have lesions like small sores on your hips and buttocks? But the number one sign that you are dealing with a severe intolerance is the distinctly different odor associated with your movements. Celiac BMs have a stench that is so foul and so bold it cannot be easily contained nor quickly eradicated no matter what. If after you use the throne, others who come in contact cannot resist making loud, rude comments, then it is time to eat a couple days of wheat heavy meals and on the third day deposit early morning samples in a clean jar and take it to the lab for analysis. Watch out for the warnings given above. Just a few years ago, I saw several GI specialist, one called himself the top celiac physician in the Bay Area, the other was THE number one GI man on the left coast. Yet in spite of my delicately informing them, neither seemed to understand that when one has consumed NO gluten for four years that there was no way I could have any anti bodies! Duh! Shucks my local GI told me I could not have the disease because had part African-American blood. (Yes "Blood") Even I knew the doctor credited for "discovering" celiac was Irish and his introductory study said that people who adhere to the AFRICAN CULTURE where the diet does not consist of gluten causing grains (wheat/barley/sometime oats) but easier digesting grains like millet did not tend to have significant numbers of celiac suffers. So it has nothing to do with one's genes, or bloodline, but how much wheat is consumed and one's ability to digest it. Take lactose intolerance. Yes, certain groups of people tend to have it more than others, but this still goes back to the culture's diet, how much milk and dairy products they tend to consume, and how often, the body's means of metabolizing and what other foods are consumed in combination that can aid or harm said metabolization rate. These are also issues you, Willow must take into account when you speak with your doctor regarding your gluten consumption. Please also remember there lots and lots of hidden gluten in foods you'd never dream would have it. Also find out the list of alternate names the gluten is hidden under like most starches and many additives. That's alot to take it but there one more big ONE... Don't put it off! I let my pain specialists tell me my digestive issues were no big deal. I should not be upset because I had to evacuate my self digitally. I let them tell me it was just a little constipation caused by the opiates, when I knew better. I let them talk circle around me. A year goes by and next , they're removing a totally dysfunctional 85 foot mega colon, and my two day hospital stay turned into 2 code blues, 48 day stay w/ 30 days on-line, needle-only TPN feeding (no food, no liquids), discharged with internal bleeding for 6 mos, requiring 4 transfusions that lead to a 70 lb weight loss in 3 mos, as it turned out was all caused by a post-op complication; a grapefruit size pancreas tumor, benign, the adventure capped off with 5 very painful major fistula surgeries, all failures. So should you get anything from this email, get this:) If you value your health/life , pain and dysfunction are signs something is wrong. Do not wait. Insist on seeing a GOOD specialist NOW and 2) If its celiac, it stinks to high heaven! Good Luck. May it be something small and easily fixed, like eat more fiber. But if it is celiac. Write again and I'll tell you all the best gluten -free stuff that won't cost you and arm and a leg.

 
fred bailey
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said this on
11 Feb 2014 9:39:51 PM PST
Too funny. I'm just hours into finally researching gluten free and I'm just laughing my butt off. Ever think that people that commence a gluten free diet do well because they actually quit eating man made crap? After only a few hours of research, I've found out that I mostly eat gluten free foods, salads with turkey, fruit. After a few hours, I'm reminded of a friend of my dad's, some 40 years ago. He quit eating bread in hopes of losing weight, he did.




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