Low risk does not mean NO risk. If you're high risk you can have celiac, if you're low risk you can have celiac. 90% of the docs out there STILL think celiac is a RARE disease. We get this kind of stuff all the time. Docs just don't understand that 1 in 133 people have celiac disease. 90% of people don't know they have celiac disease & part of that is because doctors insist that it's rare, it's a childhood disease, that you have to be anemic & rail thin to be celiac, that you have to have rampant "D", that "C" is not a symptom of celiac etc... The vast majority of dcotors are woefully ignorant of celiac. Even those who have some experience in it; don't know much about it. They do not know the patient needs to be eating gluten for the tests. They don't know the full celiac panel. They don't know to take 5 endoscopic biopsies. They don't know oral steroid usage will invalidate the tests. They just don't know. Now, when you take all that ignorance & combine it with the skin presentation of celiac you have a major problem. GI's don't know about dh!!!!!!!! Derms don't know about dh. Derms are more ignorant than GI's are about celiac.
I was officially dx'd after the fact by a nurse practitioner! I did not go looking for an official dx. By that time I knew what I had & was content to go forever w/o an official dx. This dx was a total surprise to me that he would dx me so long after the fact. Later yet, I went to a GI. I won't go into the whole thing but it was like:
He "gets it".
He doesn't "get it".
He 'gets it".
He doesn't "get it".
He got parts of celiac disease & he got parts of dh surprisingly. But he was so misinformed on soooooo much! He absolutely could not understand why I was still getting lesions after being gluten-free for over a year. He actually ordered a celiac blood panel when I told him it was ridiculous b/c I had been strict gluten-free for over a year! And to top it all off, he did not order the full panel!!!!!!!!!!!!!!!!!!!!!!!!!! It was negative of course. But the point is that he thought going gluten-free was magic & that overnight all would be healed. I brought him copies with highlighted portions from the top celiac centers that backed up what I said but he, like so many, could not get past what he learned in med school about celiac (which is woefully inadequate). I "felt" him trying to have an open mind but he could not get past his ego & admit that I could possibly know more about the subject than he NOR that he did not know as much as the leading celiac centers. He actually wanted to do an endoscopy & biopsies on me. Well, again..... useless!!!!! I had been strict gluten-free for over a year (14 months to be exact).
This is a link to the dh photobank here on the forum:
Look at my photos beginning on page 5 (the link) and they continue halfway through page 6. The GI saw me shortly after the photos on page 6. I actually looked worse when he saw me. He stated that he believed I had dh & was therefore celiac but again, he couldn't get past the fact that I was not eating gluten & so why did I have lesions. He wanted me to go for a dh biopsy, still not understanding that dh presents even after going gluten-free until all the antibodies are out of your skin. He still could not grasp the fact that a dh biopsy would come up negative because I had been gluten-free for 14 months!!!!!!!!! Even despite my bringing him copies of these facts from the top celiac centers!
There is a point when you have to realize, your doctor doesn't know everything. And that just b/c they don't know everything, that does not make you crazy.