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Dh And Now Chronic Vomiting

zorilla

By zorilla
in Dermatitis Herpetiformis

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zorilla Newbie
zorilla
Posted

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...

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rumbles Newbie
rumbles
Posted

I did have the nausea/vomiting problem before I knew what was causing the rash and other symptoms (I had both DH and Celiac symptoms before going gluten free). Although never tested for it, I had most of the classic symptoms of beriberi - vomiting, poor concentration, drowsiness, fatigue, apathy, neuritis, paresthesias (numbness, tingling sensations, shooting pains), decreased reflexes, occasional gait (walking, standing, stumbling, clumbsiness) problems, cramping muscles, muscle tenderness, weakness, rapid heat beat, edema, memory problems . . . beriberi is caused by a thiamin (vitamin B1) deficiency. I had plenty of thiamin in my diet, - I had plenty of vitamin supplements in my diet (at least two multivitamins per day, four iron supplements per day, four B-100 supplements per day . . . ), I was taking so many vitamin supplements that I should have bordered on toxic doses, but I didn't, - multiple blood tests I was always on the low side of the acceptable range (and the doctors, knowing how many vitamins I was taking didn't question this!), - but the problem was that I couldn't absorb most of what I was taking, - most of it didn't get through the intestinal wall. Until I knew and took the gluten completely out of my diet, I was fighting a vitamin battle that I couldn't win.

Vitamin B5 (Pantothenic Acid) deficiency is also known to cause vomiting. There are other vitamins and minerals that can also cause vomiting, just as there are other many other causes.

DH is now known to be a form of Celiac disease. Celiac disease is known to cause nutritional disorders along with a host of other problems that can literally effect any and every cell, organ, system in the body, with the ability to impact both quality and length of life if gluten is ingested. Dapsone is only a type of makeup that hides the DH symptom, - it does not stop the internal reaction, nor does it stop the destruction. It may be time to seriously consider joining the growing number of us that live gluten free. Gluten free is not the easy road to take, but it is currently the only healthy alternative for so many of us. Join us! ~ You will find a wealth of information and an abundance of friendly, caring people here to help you through the process and the journey. Every small step leads to a healthier tomorrow, and there are many fantastic people here to be with you and to help guide you as you take those steps.

Wishing you the best of luck, and the best of health! :)

~ Pat

wowzer Community Regular
wowzer
Posted

I'm in Michigan too. I live in Sterling Heights. I have a great family doctor that had just been to a seminar the week before I brought up DH to him. If you were diagnosed with DH, it seems odd they didn't tell you to follow a gluten free diet. I know the Dapsone helps the rash. I know it sure is frustrating. I have a sister that lives in Grand Rapids and is a celiac.

Classicalbook22 Newbie
Classicalbook22
Posted

From all my research: books, articles, internet, doctors visits, and plain old symptoms

DH=Celiac. It's rough but right now there is no "cure" for either other than a gluten free diet. I know the medicin they have for DH is rough for a lot of people, but doctors don't even know what the long term symtoms are. People with DH may not have stomach symptoms, but that doesn't mean you are not doing damage. You could be losing bone density, destorying your small intestines, and raising your risk for colon cancer. All things you have no idea is happening until, usually, it's too late and there is nothing you can do about it.

I had stomach problems for 17 years, and doctors had no idea what was wrong with me. When I was 15 I had my first afair with DH, not fun, in my akward teenage years having to wear long sleeves in summer so people wouldn't see my blisters. I had the obvious stomach problems on top of the DH, but everyone has told me, nutritionist included if you have DH you have celiacs, not always the other way around though. DH is caused by celiacs, for some people. My guess is you could be vomiting because your small intestines have finally started showing damaged, go get a scope done, take a look at your villi, chances are they are flatter than a toad on a freeway. (Sorry I heard that simili somewhere and I am rather fond of it. :P )

Gluten free is hard, but worth it! I will be two years in June, and I don't worry about my stomach or skin anymore (unless I accidently get cross contaminated, which is very rare).

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