<<Disclaimer: Verify this information before applying it to your situation.>> Many of you asked me to elaborate on the details of my recent biopsy and test results. I will try to explain. I've been getting the rash on my lower back for 17 years. 10 years ago, a Dermatologist biopsied it and told me that I had Dermatitis Herpetiformis, and that I should mention it to my Primary Doctor (who was a Gastrointerologist) because it also meant that I had Celiac Disease. I did tell my primary, but he didn't seem concerned. I was going through several surgeries at the time most related to my digestive symptoms. I have a birth defect in my Pancreas which blocks the digestive enzymes from being released into my system. My pancreas still makes the enzymes, but they are trapped, so I have what is known as Autodigestion, (the pancreas eats away at itself). I had major surgery to try to repair it, but it didn't work. Three months previous to that I had a Sub-Total Colectomy due to severe Diverticulititis. Six months previous to that I had a Total Hysterectomy due to lower abdominal pain. I had also been diagnosed with ITP several years before and had mentioned this before my first surgery. They sent me to a Hematologist the day before my surgery, and he said if that is what I had there was no evidence of it. The next day after my surgery, I almost died from internal hemorrhaging. I needed 6 units of blood. After all of this, 6 years later, I was still suffering so badly with digestive symptoms, that I began researching the diagnosis that I had been given in '92 of DH. I knew nothing about Celiac Disease or a Gluten-Free diet. When I saw the obvious connection and read the symptoms, I went back to my primary and asked him to pull up that pathology report from the Dermatologist and review it. I came back a week later, and he said "You have Celiac Disease. Don't eat wheat anymore." Now, I still didn't know much about Celiac Disease, so I said ok....great! A few months later I wasn't any better, and we realized that it was more than just "wheat". I really studied the diet and became totally gluten-free. A few months later I still wasn't any better, and he began talking about "Refractory Sprue", so he decided to do the intestinal biopsy. It came out negative. He told me that just meant that I was adhering to the diet. He also ordered the HLA Type test. I "think" the test was negative for the gene, but I'm not 100% sure. He told me to remain Gluten-Free, and I have since 1997. My rashes began to be more and more infrequent and covered a smaller area of skin when I did get it. From what I understand, the IgA deposits can remain for years after being Gluten-Free. Now to recent events: Due to my husband's job change we ended up with Kaiser insurance. No choice...That's all they offer. Ok. Right from the very beginning, the doctors there decided that they didn't believe the diagnosis. I had my records transferred from my previous primary and from the Dermatologist who diagnosed me, who has since retired. The GI doc at Kaiser ordered the TtG test. It came back negative. I told them that is what was to be expected as I truly was Gluten-free. All of sudden, I get this letter from Kaiser saying that the GI doctors refuse to see me anymore for anything because they don't believe my previous diagnosis's. This has turned into a major battle as they claim there is no record of the biopsy from the retired doctor. They tell me they won't see me until "You bring in the original pathology slides from that diagnosis." The lady at the office where I tried to obtain this piece of evidence laughed out loud at me. So I figured the best way to settle this whole thing was for them to repeat the biopsy when I broke out again. After almost a year of never managing to break out at the appropriate time....(my local Northern Ca. Kaiser's Dermatology dept. is only open for a few hours on Tues. and Thurs.) I finally got in and had to insist that they repeat the diagnosis. He kept insisting that he could tell it was Herpes just by looking at it and that the next time I broke out he would just give me some anti-viral medication and if it went away then we would "know" that's what it was! I stood up for myself and insisted that he was to perform this biopsy. I had brought with me some printed material from the internet explaining the test and the way it was to be done. He told me that he had never seen DH or tested for it. He didn't know how to do it and besides that he didn't even think that test could be done at Kaiser. He left the room and my daughter (my witness) and I both heard the conversation that he was having with the nurse. She explained how to do it and that it was to be sent to a lab in Houston. This is the lab. The University of Texas-Houston Health Science Center. Medical school Department of Dermatology, Laboratory of Immunopathology. Kaiser also performed a biopsy to be sent to their lab for Herpes. It was negative! They told me it would take 30 days to get the results from Houston. I did get Kaiser's lab report back after 2 weeks. After 60 days, and several visits, messages, and phone calls, Kaiser called and said, " OK we have your results...I'll mail them to you. I thought to ask her which lab it came from and she admitted she would have been sending the same Kaiser report that I had already received. I finally called the doctor and left a message that I wanted someone to call me and give me the name, address, and phone number of the lab in Houston, so that I could call myself and ask if they even received the specimen! Three hours later the nurse called me and told me that my Fungal test was negative....WHAT? So, she says oh I'm sorry, I'm reading this wrong. Your DH Test was negative." I requested that she send me the report in the mail. She said they don't usually do that, but she would. I got it today. Well, I got a copy of a fax...handwritten from the lab in Houston that says, "Negative for Dermatitis Herpetiformis" and "no specific deposits including IgA." The diagnosis given was SubCorneal Intraepidermal Pustular Dermatosis. I did find a definition: a chronic, recurrent, benign, blistering rash of unknown etiology. So this is where I am. Totally confused. I feel like I should be the poster child for why we need an official diagnosis before going gluten-free. This is a nightmare. I have also been recently diagnosed with Fibromyalgia/MPS, and it seems that IBS goes along with that. This really needs to be addressed....I've even filed a grievance with Kaiser because the GI docs refuse to see me...EVEN THOUGH I have other digestive problems as well. I haven't seen a GI doc in almost a year! Not that I haven't tried. I am so frustrated. On top of that I got so emotional about the prospects of being able to eat other foods again, that this evening I ate a fast food meal--full of gluten. Please don't berate me...I'm doing enough of that myself..... Cat