Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 To all, 1) No Dr will say that achalasia is secondary to Celiac or Dermatitis Herpetiformis since there is no clinical substantiation. Field cases need many years of study. 2) The suspicion is that the Dermatitis Herpetiformis (DH) is causing the A not Celiac Sprue. 3) DH is also a gluten related disease. DH is much rarer than CS. DH causes rashes on virtually all parts of the body. CS symptoms can be completely eliminated by being 100% gluten free. DH rashes will appear even if you are 100% gluten free. Gluten makes the rashes much worse. DH can be very cyclical. That is be very severe for a few months then go away and come back several months later. DH responds to a drug called Dapsone while CS won't. If I accidentally consume gluten I can double up on my dapsone to quell the rashes. Dapsone has no effect on CS. Some evidence as to why the DR's are suspicious and I am convinced that DH is involved with my A. 1) Pictures from my first endo in 1983 had blisters throughout my A. The Dr's at UPMC in PGH all said they had never seen blisters in the E. Since then DH has been clinically proven to cause blisters in mucous membranes while very very rare. 2) My motility studies all indicated "low pressure in the LES". I went to every hospital in PGH and then went to Dr Cohen at Univ of Pennsylvania who was billed as a esphogologist at the time. I think he developed the motility study or manometry. He diagnosed me as "low pressure a". He said there were only three other known cases. 3) An article my DR showed me from a GI medical journal written by a DR at the Cleveland Clinic years later states that if there is "low pressure" in the LES it is not true Achalasia. 4) My Dr does say that it appears to not be true Achalasia but won't go any farther than that. 5) I had my myotomy in 1988. At that time my e was extremely bulged. My Dr said it almost looked like a second stomach with the mucuos growing into the E (barretts). I had dilatations several times prior. 6) I was diagnosed with DH in 1992. My rashes were so severe that I had to grow a beard as I couldn't shave. I had blisters everywhere. Prior to 1992 I had scalp problems for years, chronic athlete's foot etc. I had chronic aspiration and reflux. The barretts was at level 5 or as severe as it gets. I also had some UES problems like it not working and pouring milk into my lungs trying to take a drink. 7) I went gluten free and started on large amounts of dapsone. All of my skin, scalp and foot problems went away. My chronic aspiration and reflux went totally away. 8) By 1997 regular motility was discovered in my E. I pestered my DR for and upper GI and Motility study since I said my swallowing had been getting so much better. (I actually threaded the motility tubes myself through my nose into the stomach without any medication) I was then diagnosed with celiac spure and started making a better effort to go gluten free. 9) By 2000 the barretts went completely away and swallowing had improved tremendously. There was no evidence of celiac sprue in my intestines. Unfortunately I already had the myotomy so that will continue to cause me problems and cause problems in the E. I had a botox in DEC 2002 and had a minor dilatation Wednesday. I started with Losec then prilosec then nexium. I usually have a hard time explaining technical stuff so if I confused anyone please please ask me any questions you have I won't be offended. Kathie, I had a great time with the nurses at West Penn that is until they shot me up. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 -Boy , you hve had a rough time dealing with so many things. I think you have done well. I tis such a high maintenance regeme but you are abviously doing well to keep it under control after all these years. All the best -- In achalasia , watsongm@... wrote: > > To all, > > 1) No Dr will say that achalasia is secondary to Celiac or Dermatitis > Herpetiformis since there is no clinical substantiation. Field cases need many > years of study. > > 2) The suspicion is that the Dermatitis Herpetiformis (DH) is causing the A > not Celiac Sprue. > > 3) DH is also a gluten related disease. DH is much rarer than CS. DH > causes rashes on virtually all parts of the body. CS symptoms can be completely > eliminated by being 100% gluten free. DH rashes will appear even if you are > 100% gluten free. Gluten makes the rashes much worse. DH can be very > cyclical. That is be very severe for a few months then go away and come back > several months later. DH responds to a drug called Dapsone while CS won't. If I > accidentally consume gluten I can double up on my dapsone to quell the rashes. > Dapsone has no effect on CS. > > Some evidence as to why the DR's are suspicious and I am convinced that DH > is involved with my A. > > 1) Pictures from my first endo in 1983 had blisters throughout my A. The > Dr's at UPMC in PGH all said they had never seen blisters in the E. Since then > DH has been clinically proven to cause blisters in mucous membranes while > very very rare. > > 2) My motility studies all indicated " low pressure in the LES " . I went to > every hospital in PGH and then went to Dr Cohen at Univ of Pennsylvania who > was billed as a esphogologist at the time. I think he developed the motility > study or manometry. He diagnosed me as " low pressure a " . He said there were > only three other known cases. > > 3) An article my DR showed me from a GI medical journal written by a DR at > the Cleveland Clinic years later states that if there is " low pressure " in the > LES it is not true Achalasia. > > 4) My Dr does say that it appears to not be true Achalasia but won't go any > farther than that. > > 5) I had my myotomy in 1988. At that time my e was extremely bulged. My Dr > said it almost looked like a second stomach with the mucuos growing into the > E (barretts). I had dilatations several times prior. > > 6) I was diagnosed with DH in 1992. My rashes were so severe that I had to > grow a beard as I couldn't shave. I had blisters everywhere. Prior to 1992 > I had scalp problems for years, chronic athlete's foot etc. I had chronic > aspiration and reflux. The barretts was at level 5 or as severe as it gets. I > also had some UES problems like it not working and pouring milk into my lungs > trying to take a drink. > > 7) I went gluten free and started on large amounts of dapsone. All of my > skin, scalp and foot problems went away. My chronic aspiration and reflux went > totally away. > > 8) By 1997 regular motility was discovered in my E. I pestered my DR for > and upper GI and Motility study since I said my swallowing had been getting so > much better. (I actually threaded the motility tubes myself through my nose > into the stomach without any medication) I was then diagnosed with celiac > spure and started making a better effort to go gluten free. > > 9) By 2000 the barretts went completely away and swallowing had improved > tremendously. > There was no evidence of celiac sprue in my intestines. > > Unfortunately I already had the myotomy so that will continue to cause me > problems and cause problems in the E. I had a botox in DEC 2002 and had a > minor dilatation Wednesday. > > I started with Losec then prilosec then nexium. > > I usually have a hard time explaining technical stuff so if I confused > anyone please please ask me any questions you have I won't be offended. > > Kathie, > I had a great time with the nurses at West Penn that is until they shot me > up. > > > Quote Link to comment Share on other sites More sharing options...
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