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April 2005 Updates

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I get it on the back of my right leg and right elbow. I have no idea why it's just limited to the right side of my body. My family care doctor prescribed me a steroid and steroid cream. The oral steroid has only made me grouchy and fat! I'm probably going to stop taking it since it hasn't helped the rash much. Good luck getting rid of yours!

Had The rash for years before I went gluten-free. My rash took about a month or two to heal and vanish. When I get glutened the rash areas start to itch a bit- besides being constipated it's my only clue! good luck and be patient

Kaiser offers the full panel, but a primary care MD can not order it -- only a GI. Again, a visual is not needed. Damage is usually severe if it can be seen visually (e.g. Scalloping, etc.). Villi are microscopic though. When you got the referral, you probably should have found a GI on your own by searching through the Kaiser directory and finding one who has some mention of celiac disease in his bio. Too late, but that is kind of how it works. Your PCP does not know the GI docs. The scheduler just makes appointments. So, now, that you have been referred to a GI, you can probably schedule another appointment on your own by passing your PCP. Wait first for the pathologist's report. They might not put it on the patient portal, so get a hard copy for your records. If it is negative and they took four or biopsies, you will have your answer. Then you can consider trialing the diet. If they did not take enough samples, ask for the DGP and EMA tests, including the control test IGA deficiency (which affects 10% of celiacs, but do not quote me on this). You could wait a few years until you think damage is severe enough to find. celiac disease can be hard to diagnose. It can develop at anytime. Don't forget you might have a gluten sensitivity too and not celiac disease. Kaiser responds well to requests in writing. Try the patient portal first before a registered letter. If they are not following the standard level of care, they are at risk for a lawsuit. Be nice. Say something lame in your letter like, "We had such a nice short visit, so I forgot to ask ....blah, blah, blah." My own relatively new PCP is still learning about celiac disease. That is okay. At least she has an open mind.

It is gluten free...I eat it regularly and have had no issues and it tastes yummy. ?

A quick update: I emailed my primary doctor and she is on the same page as the GI doctor, saying the Endoscopy looks normal. Even before we've gotten the biopsy back. By the way, I should mention I'm dealing with Kaiser in the Bay Area, CA and everything I've found about Kaiser on these forums is horrible and similar to my own experience. I specifically asked about all the components of the full celiac panel and that I would like to get it and all she said was: "The lab tests are not perfect. Although they may indicate an increased risk for celiac, they are not as specific as the biopsy." So, now we should just ignore the positive IgG? How am I supposed to know if I'm IgA deficient if they don't test for that? I replied and asked again and she said that Kaiser doesn't offer the full panel. Why not? And I said I want vitamin and iron tests and no reply to that yet.