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mitchgam

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Everything posted by mitchgam

  1. mitchgam
    It is possible, although not common to have an allergic (histamine) reaction to the DH reaction. Two separate things, even if simular.
  2. mitchgam
    I know this might sound silly being on a Celiac/DH forum, but you are on a strict gluten free diet, right? You have looked into and stopped eating all foods that contain gluten, meaning things like regular soy source, gum, corn flakes, blue cheese and so on? Even some products labeled gluten free are not really, you have to still read each label. Nothing...
  3. mitchgam
    I have DH BUT, I also seem to have a histamine reaction to the DH reaction. (I am sure there is a better way of phrasing it but thats how it has been explained to me) If I eat anything (including Oats and Barley) that contains gluten within minutes I know it, I feel adrenaline and itchy. If I take 2-4 Daphsone pills it ends within minutes. (and yes I need...
  4. mitchgam
    Do you take the pills in the decreasing amounts 5 pills the first day and 4 the second and so on? and then repeat? or just one shot by the doctor (I have tired both ways and find the pills more effective). Dapsone only seems to work for me if I take it as soon as i feel the attack coming on, it stops the DH attack immediately, but if I am not quick enough...
  5. mitchgam
    Low dosages do nothing for me either. I take the high dosage 5 pills the first day 4 the next and so on. Sometimes having to do it twice, before the attack ends a few days latter. If I catch it early enough Daphone works wonders, but once it continues a few days I switch
  6. mitchgam
    Yes, as do the 3 GP and one Dermatologist I have been to, Two other GP's and 1 allergist didn't have a clue. But, go ahead and suffer with the itch for as long as you can take it, knowing that there is relief out there.
  7. mitchgam
    So, please let people like that suffer for years and years, not taking the short course of steroids necessary to stop the reaction. The fact that I refused to get into a battle of medical studies with you to prove my point, makes you right. My advise stands, take the steroids, then the next time you feel the symptoms, take Dapsone. If Dapsone stops...
  8. mitchgam
    Yes, of course you are right and all of the doctors I have gone to are wrong. Or it is ONLY me that has that problem.
  9. mitchgam
    Welcome to the wonderful world of DH, were all the Doctors can do is guess what you have half the time. First deal with the rash, which has possibly become a systemic histime reaction. Got to a doctor. Take a course (or 2) of steroids to end the rash. Then embark on a lifetime of strict gluten free eating.
  10. mitchgam
    No matter the ultimate diagnosis something needs to be done about your current symptoms, you are having a histaminic reaction, before they also start to effect your breathing. Maybe ask your doctor to give you a steroid or a series or pills (pregnasone?) No, this is not a cure, but at least you will feel human again.
  11. mitchgam
    My skin lesions are typical DH like in any text book to start, they form trails sometimes, just like it says in the text books The fact that Dapsone stops the reaction in the opinion of 3 different doctors is proof enough that I have DH All confined the fact that due to how my body reacts to DH, giving me gluten so I can take a blood test is life threatening...
  12. mitchgam
    I have had biopsy's, 5 of them to be exact, none proved anything, nothing was found. You are caught up in medical semantics. LIke the example I gave you about pulmonary disease. The ONLY thing i can say for certain based on MULTIPLE doctors who I have seen is that i do NOT have a Wheat allergy (which also is a "Celiac disease")
  13. mitchgam
    Sorry, I am not going to argue with you, I have been to too many specialists all of whom agree with what I say to continue a discussion on semantics with you. My brother has no symptoms, yet tested postivie and my son has DH too. When and if your systems get worse as you age, you might rethink your opinion.
  14. mitchgam
    I and every single doctor I have ever been to about this, and I have traveled to specialists in the field would totally disagree. You are welcome to believe that, but it is not true from a medical perspective. DH and Celiac disease are classified as Celiac the same way Pneumonia and TB are pulmonary disease. Both have the same root cause but both effect...
  15. mitchgam
    Years ago, before I figured out what was wrong, I thought I had some form of skin parasites. I found a forum where people who thought likewise would talk about their symptoms, many similar to mine (though some claimed to talk to them). Upon finding out what I had I wrote on the forum about DH and that it might not be Skin Parasites. I was immediately banned...
  16. mitchgam
    While DH is classified as part of Celiac disease it is really an auto immune disease. When you (if you have DH) eat gluten you body sends out antibodies attacking your skin as if under attack. In me it sets off a histamine reaction if left unchecked. Exactly the same as an allergy. I have been to multiple doctors all agree as to what I have, but as one...
  17. mitchgam
    While I respect your right to chose, I do not wish to suffer for months or years with the effect of DH and for the life of me I don't understand why you do. At the first hint of an outbreak i take Dapsone and if not resolved within 2 days I either take the cortisone the doctor gave me or go to him for a shot of it. As I have gotten older the reaction becomes...
  18. mitchgam
    I am not diligent, I eat out all the time, but i have learnt what "should" and what food "should not" contain gluten. Sometimes am surprised anyway, although not often. The fact that your outbreak doesn't end, indicates that you are continually being exposed to gluten, even if you don't know it. Remember your bodies reaction to gluten only gets worse...
  19. mitchgam
    Thank you for your concern I am under the care of a Medical Doctor, who is fully aware or what is going on It is he who gave me the prescriptions to Dapsone and cortisone. I have lived with this for almost 20 years now You are correct my reaction is not a feature of DH As I have said DH brings on a full scale histamine reaction which is what causes the...
  20. mitchgam
    The issue is your admission of a short course of cortisone. If like me where my bodies reaction to the DH sets off a histamine reaction, where my body attacks my skin as if it was a foreign body, a short corse will not stop it. Once thinking it would fade over time I had to be rushed to the ER due to trouble breathing. It takes a full course sometimes...
  21. mitchgam
    Dapsone has many side effects. Some are life threatening. I do not wish to deal with or worry about those side effects. I take Dapsone only when needed and no more then needed. When the attack becomes histaminic Dapsone has no effect on it and only a cortisone stops the attack. For me the attacks progress from my arms to my face to my trachea and I have...
  22. mitchgam
    I have DH also What I have found is that if I do not take Dapsone fast enough or enough of it at the onset of a reaction, the reaction becomes histaminic. Meaning that it no longer is based upon my bodies reaction to gluten itself, but my body is attacking itself Remember DH is an Auto Immune disease not an allergy. I either take a cortisone for ...
  23. mitchgam
    I can only give you my similar experience and what worked It seems that once let go unchecked DH creates a Histamine reaction, long after the offending agent (gluten) has left my system. So, while I take Dapsone at the first sign of a gluten reaction, once that reaction has taken hold (my eyes and trachea swell), I switch to a regimen of Cortisone or go...
  24. mitchgam
    While both Celiac and DH are a bodies response to gluten, they are not the same. While it is easy to lump them together they are totally different from each other medically. DH is an auto immune disease that creates a systemic histaminic reaction. Celiac doesn't. I am not a doctor but have had medical doctors explain the difference in medical terms that...
  25. mitchgam
    You possibly have DH an auto immune disease similar to celiac but for a different reason. Since you are already living mostly gluten free, you will not test positive on the blood test for it. It does not have to be bilateral, although it often is If it progresses or happens during a season when Poison Ivy is not growing, then you will know for sure that...
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