<<Disclaimer: Verify this information before applying it to your situation.>> Alison's right about many things. But, I don't think anyone meant that an "official" CD diagnosis with positive blood tests & biopsy results wasn't desireable, but simply not possible for many people for a variety of reasons I will not discuss here. IMHO, the lack of an "official CD diagnosis" shouldn't stop anyone from confidently listing celiac disease on their medical health history, especially since some doctors believe celiac disease is any form of permanent gluten sensitivity regardless of lab or biopsy results. Most facilities such as hospitals, day care centers, nursing homes, doctor's offices, etc. don't require documented proof that you are celiac, have arthritis, hypothyroid disease or anything else to treat you appropriately. That's been my personal experience as well as my experience working as an RN in doctor's offices, hospitals & nursing homes for the past 12 years. When a new patient is admitted, they or their family supply the health history which is duly noted in their chart. If they look at past medical records at all, it's usually to check for treatment guidelines such as medication dosages. No doctor requires the original documentation of osteoarthritis or diabetes, or hypothyroidism to continue care. If you say you've been on insulin for diabetes, blood pressure meds for HTN, or the gluten free diet for celiac disease for "X" number of years, that's generally accepted w/o anyone asking for "official proof" of the diagnosis. While it may be true that you might not get insurance reimbursement for dietary services for CD if you don't have the official CD diagnosis under your belt, I believe most people who are savvy enough to self diagnose celiac disease & follow the diet probably don't need dietary services anyway! I'd advise any gluten sensitive individual or parent/care-giver of a gluten sensitive person who is transferring care to a new doctor, health care facility or day care to list celiac disease as a diagnosis & leave it at that. Does anyone think that a 60 old celiac would be required to document proof of a diagnosis that was made 40 years ago? Of course not. Medical records aren't usually even available for that long. If you state "gluten intolerant" on your health history, this will not only confuse your care givers, but cause them to question the credibility of the diagnosis, etc. That's exactly what happened to me when I went to see a couple of specialists about issues not directly to celiac disease. These were not good encounters. But, when I've seen specialists & simply listed celiac disease on my health history without confusing the issue with other terms such as gluten sensitive, etc., I was treated with more respect. Since more & more physicians now days are beginning to accept the diagnosis of celiac disease based upon symptoms & the response to the GF diet w/o the need for positive biopsy & blood work, I don't believe anyone self diagnosed celiac should feel they are lying to simply list celiac disease on their health history. What many non-medical people don't realize is that "official diagnoses" are nothing more than a consensus of doctor's opinions. When you get down to brass tacks, doctors are only "practicing medicine" and one doctor's opinion isn't necessarily more valuable or true than another's opinion. Doctors have the legal aurhority to diagnose disease regardless of what the consensus opinion is. Most medical insurance providors simply accept the opinions that are agreed upon by the greatest number of doctors. But some insurance companies recognize & accept the diagnoses of any MD or DO as "official" simply because they are medical doctors with the legal athority to diagnose & treat diseases. There's really no official, one true, absolute and eternal divinely appointed aurhority on any one disease. Medical terms for diseases are just tools physician use to communicate with one another. Once a doctor hears the term osteoarthritis, he knows what that describes & how to treat it. When he hears the term, celiac disease or Graves disease, he knows what that describes & how to treat it. Medical diagnoses are not absolute truths, but only discriptive terms to aid in continuity of care. And these descriptive terms often change over the years as new information and research becomes available. So, if you are a self diagnosed celiac, take confidence in that knowledge & use the term "celiac disease" to help yourself receive the best health care you can. I need to clarify here that I'm not advising people to self diagnose a variety of diseases, transfer care & try to get new doctors to treat them for that. That would be insane becasue you could cause yourself serious harm. Besides, no doctor in his right mind would treat a serious disease with potent drugs w/o solid evidence of the disease to back him up. But with celiac disease which is treated with a harmless diet that you you are your loved one desparately needs, go for it! I also want to clarify that the CD like symptoms can be the result of other disease conditions. So if you continue to have symptoms of CD even after being on the GF diet, you should seek medical attention to either get treatment for or rule out these other conditions. Valerie in Tacoma *Support summarization of posts, reply to the SENDER not the CELIAC List*