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mamat78

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by mamat78

  1. mamat78
    So tonight I at spagetti for dinner...I want to chop my legs off. There is no doubt in my mind I need to quit eating gluten. In saying that, the derm that I saw last week phoned and wanted a new celiac blood panel done. Not sure why. I just had one done in march and it was negative. I also see my gp next week and am going to look into a few other things...
  2. mamat78
    wow, that sounds bad! I know that I have flare ups that are worse than others but it seems that when they come, they stay for what feels like forever and lately, it seems like longer each time. I need a bit of time to make a decision as to whether or not the dx is really important to me. I think for piece of mind, it is but really, for all the waiting, it...
  3. mamat78
    That is my fear...waiting for a new outbreak just to get at dx? I am not sure I am wanting that as this outbreak is going on almost 6 months and just starting to maybe die down. My story, in a nutshell, is that I have had what I think is DH for several years now and it is getting progressively worse and seems to take longer to get rid of each time...got...
  4. mamat78
    So for those who know my story...I finally got into a derm and he wants to wait for "fresh" leisions before doing a biposy. So, the wait goes on. What he said was...yes, he thinks it could be DH by the look of it but based on blood results, it isnt pointing in that direction. I argued with him on this point and said that a neg blood screen does not mean...
  5. mamat78
    I have also read that high doses of b-12 supplement can help with DH symptoms. I am taking 3000mcg per day now...as well as higher dose of vitamin C (2000mcg) I have no idea if any of these things will help but it may be worth a try! I cannot tolerate dapsone so I will have to rely on gluten free if the dx is of DH
  6. mamat78
    So with Dapsone, it will not likely show a positive biopsy? I am actually only putting it on the worst areas and leaving it without anything on the other areas in fear of exactly that! I am not gluten free at this point. My appointment is still a week and a half a way...seems like forever!
  7. mamat78
    So, 4 or so days on dapsone topical and then now I have misplaced it! I haven't had any since yesterday AM and my legs are on fire tonight! It was definately helping. Actually, even more than I thought until I was off for 24 hours. New breakouts happening tonight. So frustrating. I have 4 kids and have a feeling that one of them either grabbed it to look...
  8. mamat78
    well, so far I am not seeing any side effects from the topical dapsone so that is good news. As far as the working factor, it is hard to tell becuase it does seem better but then I am always wondering if I am imagining things in hopes that they are working! It still has itchy times but again, like the oral dapsone, the itch seems less intense. I will let...
  9. mamat78
    I had total CBC done as well and the only above normal reading (twice) was hemoglobin was just above the high normal. it was: 152 (ref 118-151)
  10. mamat78
    I know that there are a lot of threads about understanding results...now I see why! I went back to gp to get my blood test results as well as my results for DH skin test. Turned out that my skin wasnt tested properly and she only tested for some other skin conditions. As far as the blood results go, I think they are negative... TTG: 5.9 (ref 0-2...
  11. mamat78
    I did go back to the doctor on tuesday, 2 days after I went off of dapsone. By the time I went to my doctor I was feeling better but it did take quite a while to get out of my system. In fact, up until yesterday, I was still unusually tired. She didn't seem too concerned especially because I was feeling better after coming off of the drug. The dark urine...
  12. mamat78
    Well, I contemplated trying to get into see my dr today after work as I was still feeling very weak, muscles were tired and then my pee turned really dark (that actually started last night but I paid more attention today). Towards the end of the day though, I started to feel a little better and managed to actually have energy for the afternoon of my work...
  13. mamat78
    yes I have stopped. Still feel really shaky and weak.I had to turn the heat down as I feel overheated or something too. Just all around yuck! I am at work today so hopefully I can just work through it as I am a middle school teacher! No time to slow down here!
  14. mamat78
    yes I have stopped. Still feel really shaky and weak.I had to turn the heat down as I feel overheated or something too. Just all around yuck! I am at work today so hopefully I can just work through it as I am a middle school teacher! No time to slow down here!
  15. mamat78
    THanks for the reply's. I am not going to take it until I see my doctor again which is tuesday. I am definately feeling weird, even after 12 hours although I am up and around now. I cant get in very easily to my doctor so is Tuesday fine? Or is this something I should be trying to get in right away?
  16. mamat78
    I posted on an old thread but I think I need to start a new one. I just thought about it yesterday that I think the Dapsone that I am taking (only 50 mg/day) is really affecting me. I was expecting nasea and so when I didnt feel that way I figured I wasnt experiencing any side effects. Well, I am feeling more and more crappy as the time goes on. I have...
  17. mamat78
    Instead of starting a new thread, I will add to this one...Today (and yesterday for that matter), I feel like I am in a state of permanant fog. I have zero energy and just want to sleep. Unfortunately I have 4 kids and a husband who works away and is currently gone. I have been on dapsone for 10 days now and I don't think I noticed any side effects. I felt...
  18. mamat78
    FLared up again as soon as I ate bread...I did this incase I need a retest on tuesday when I go back to the dr. Within an hour, My entire body starts crawling but the breakouts are where I am already dealing with the rashes (both legs). I feel horrible and very little energy. REgardless of what the results are, I will be going gluten free as I feel like I...
  19. mamat78
    I have an appointment to go over my results on Tuesday but becuase of what I learned AFTER she did the swab wrong, I am assuming that it will come back negative. I wanted her to be able to retest right then and there if it was negative and so I went back on gluten but boy am I paying for it. How much gluten do I have to be ingesting to be considered enough...
  20. mamat78
    Is it really possible that even after being off gluten for 6 days that I am reacting through my skin even worse than I was before I went off? I have been on Dapsone for 9 days. After 3, I went off of gluten because I was getting frustrated with the rash and the stomach symptoms I get when I eat gluten.(BTW I was to the point where I was still itchy periodically...
  21. mamat78
    I am not diagnosed...yet, but I have had a nickel rash from my belt consistently for about 8 years. It is there most of the time but with regular cortisone cream, it stays under control. awful, awful place for a rash! I also get severe DH (if thats what it turns out to be!). I go to doc on Tuesday to review my results.
  22. mamat78
    Hopefully you get the answers you are looking for! Dr's can be great but they can also be very frustrating. Mine didn't even consider celiac the first time I mentioned it (over 2 years ago) but gave me the blood requisition anyways (which I didn't do) and then the fill in doc that I went to said to me "that doesnt really look like just atopical dermatitis...
  23. mamat78
    I feel much better tonight after eating dinner. I am tired and ready for bed though!
  24. mamat78
    I have to say that my rash is sooo much better already. It is not gone but it will be a while as I have had it since december so even when it settles down there will be dark red spots that will need to fade. The itching though is minimal (usually once or twice a day I get a small area that will be itchy but no bleeding for 2 days now which is huge improvement...
  25. mamat78
    I am also new to this whole thing but what I can say about gluten free eating is before you have to go spend a whole bunch of money to try to "replace" gluten foods (like pasta, breads etc) try going whole foods like fruits,veggies, meats, nuts. There are lots of gluten free deli meats as well. At least those are good, quick grabbing foods that arent too...
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