i was diagnosed with DH almost 20 yrs ago.i've been taking dapsone ever since.the dapsone took away the breakouts and itching so i have almost never followed a gluten free diet.3 yrs ago i began having chronic vomiting.no drs can come up with a reason besides stress.over the yrs i have really been disappointed with DRs.until recently they had never heard of DH and actually accused me of trying to get a prescription of dapsone,which they say is a steroid.i've been to a gastrologist who never did any tests and told me the vomiting was from stress.
my primary dr ordered alot tests because i kept pushing him to.i had an upper Gi,an ultrasound,a scope,a gastric emptying test,and a catscan because i get headaches.everything came back normal including extensive blood work.i was referred to another gastrologist about a month ago.i told him about not following the gluten free diet and that maybe i was having digestive problems now.he said he didn't think so.he ordered blood work and a gallbladder functioning test.the person that did the test and the radioligist both said that they had never seen this result before.they said that my small intestine was so high that they had problems seeing my gallbladder.last week i called the specialists office to get my test results.the nurse told me that my small intestine was wrapped around my gallbladder and this was causing my gallbladder not to empty correctly.i was so happy that finally my vomiting would be gone.
today i went to the gastrologist and he told me that my gallbladder was a little slow emptying but removing it would probally not stop the vomiting.he was really rude and told me that the blood test showed that i didn't have spruce.i said well i still have a gluten intolerane and he told me no.i asked why does my skin break out then and he said why does alot things happen to people?he said that i was on dapsone because i had a skin condition and that it didn't look like it was doing much good(i have multiple scars from outbreaks?)i told him if i don't take dapsone that every part of my body is blistered;even the ends of my fingers turn black.he said that the people that did the test didn't know anything because they weren't drs.he thinks i have cylic vomiting syndrome which really doesn't have any cause and i said yeah and there's no cure either.
anyways i don't know where to go from here.after 3 yrs of vomiting daily i feel like giving up.you can't make any plans to go anywhere or do anything.i stay at home unless i absolutely need to leave the house for drs appointments,grocery shopping etc.he acted so rude that i think he thinks i made up having the gluten intolerance.has anyone had the vomiting problem or had a test showing their small intestine wrapped around their gallbladder?i'm sure gluten has caused this but i need to find a dr that knows what they're doing.i live in michigan...