<<Disclaimer: Verify this information before applying it to your situation.>> List members: Thank- you to all who responded. I was overwhelmed by how many of you responded and very thankful for your words of encouragement. The following is a summary of some of your responses. Many of you said very similar things, so I just cut and pasted a few comments; I received over 60 emails. ------------------------------------------------------------------------------- ...you should never have been GF before the biopsy...obviously, you healed too much to show damage. and 2.response to the diet is another way of diagnosing. ------------------------------------------------------------------------------- ...candida yeast infections often have the same symptoms as gluten intolerance - and eliminating gluten from you diet may retard the yeast - explaining the improvement you mentioned. Take a look at: http://www.candidapage.com/cccomp.shtml - comparing symptoms of candida and gluten intol. Form more general info on yeast issues, look at: http://www.panix.com/~candida/ ------------------------------------------------------------------------- I've heard about a challenge where they insert gluten into the intestines and then test. There's also a cell test (swab on the inside of your cheek) that can give you a definite "no" to celiac -- if you don't have the gene you don't have the disease, if you do have the gene you might have the disease. ------------------------------------------------------------------------- >From what I understand, sometimes they miss the damage to the villi. (You might ask for the slides to be sent to University of Maryland for them to read them.) ------------------------------------------------------------------------- There is an other good site with caring people to answer your questiions: http://forums.delphi.com/celiac/start/ ------------------------------------------------------------------------- What lab did the biopsy interpretation? There are only a few who are qualified to read the results. Also, your GI doctor who performed the biopsy must be experienced and know to take between 10 and 15 samples from the correct portion of the jejunum. These biopsies can also come back false negative because of inexperience of the doctors and labs interpreting the results. ------------------------------------------------------------------------- You might want to have your doctor run a blood test to check the size of your red blood cells. If they are enlarged, it denotes a malabsorption problem, signifying celiac. Also have him run a stool exam, testing for fat in your stool. If there is a significant amount of fat (like 3 times what should be there), that will also signify celiac. Those two tests, plus the fact that the gluten-free diet makes your condition improve significantly, would show that you indeed do have celiac. ------------------------------------------------------------------------- Neither test is 100% reliable. The biopsy is generally considered better, but it can be screwed up, too. For example- celiac lesions in the small bowel are patchy. A proper biopsy takes many samples from various areas. If the doctor doing the biopsy doesn't know that, it can be missed. Another example- total villous atrophy is easy to see, but partial atrophy calls for judgement. If an inexperienced pathologist is on the case, he might miss CD. ------------------------------------------------------------------------- I would strongly recommend you get a second opinion on the biopsy results. Where did your dr. send the pathology specimens? I would urge you to send them to a lab experienced in doing these tests. You can arrange to have them sent to the Unive. of MD. Celiac research center. They are expert in these tests. Also did the lab report on the rate/amount of interepithelial lymphocytes. INflammation could be the beginning of the CD process and so you need someone with expert eyes to look at your specimen. ------------------------------------------------------------------------- 1)They may not have taken enough samples when they did the biopsy- I've heard some people say they need at least 3 dozen from different places in your intestines! 2) they probably took samples only from the upper part of your intestines, nearer to your stomach - the lower part may be damaged 3) you may not have been back on gluten long enough to re-damage your intestines 4) A BIG REASON: inexperienced pathologist / lab. ------------------------------------------------------------------------- 1) You can send your biopsy slides to a lab that specializes in GI disorders and have them evaluate the biopsy (a second opinion). I send mine to : Prometheus, Inc. 5739 Pacific Center Boulevard San Diego, California 92121 (619) 824-0895 Toll Free (888) 423-5227 Fax: (619) 824-0896 2) Get a food allergy blood test using the ELISA testing method. It is an 88 food panel and has gluten, wheat, barley and rye as some of the things to test for. If these come out positive for allergy, and you have to avoid them, does it really matter if you call it Celiac or wheat allergy ? STAY AWAY FROM THE GLUTEN!!! 3) Change doctors. You might indeed have something else wrong. But if gluten makes you so sick, don't eat it. I had to change doctors three times to get a proper diagnosis. ------------------------------------------------------------------------- There is a Dr. FIne in Dallas www.finerhealth.com who has developed a stool test for CD that is supposed to detect CD earlier than the blood tests or biopsy. ------------------------------------------------------------------------- ...these [blood] tests err more on the side of false negatives rather than false positives (in other words, if you have negative blood tests you could still have celiac, but if you have positive blood tests it is very unlikely that you don't have celiac.) ------------------------------------------------------------------------- I would contact Dr. Alessio Fasano at the University of Maryland www.celiaccenter.org. He is a wonderful man. Send him the information that you posted, and he will steer you in the right direction. ------------------------------------------------------------------------- Your situation is not unusual. First of all, ask for a copy of the pathologists report of the biopsy. Second ask for a copy of the slide photograph (done by the pathologist) and have it sent to Dr. Fasano at Univ of Maryland . Many gastroenterologists will do an endoscopy and based on the visual view make a negative determination and not take a biopsy. Some take the biopsy and fail to send it to a "qualified celiac pathologist" who knows how to prepare a slide if celiac is suspected.Some GI's fail to ask the pathologist to look for celiac. Lisa