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jeannine

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Everything posted by jeannine

  1. jeannine
    Thanks! I'll have to remember those!
  2. jeannine
    I just wanted to add my story as well. I walk about 50 miles a week- and kept gaining weight. The doc's would all tell me to lose weight- well, how- I can't exercise any more than I am! I also have dh- finally dx'd after 18 months with very few gastro symptoms. I have been gluten-free for about a month, the dh is healing, bit by bit and every once...
  3. jeannine
    We were meeting some friends for lunch and they picked the restaurant. Canyon Cafe in the Quarry. Anyway, I contact the restaurant and tell them that I have Celiac and do they offer a gluten free menu. No, they don't offer a menu, but ask to speak to the manager because almost everything on their menu can be made gluten-free. So, I ask to speak to...
  4. jeannine
    That looks a lot like dh. I was diagnosed with dh after having the rash for 18 months. I have been gluten-free for about 3 weeks, but was told by my derm that it could easily take a year for it to go away. Dapsone is not an option for me (and I'm sure it would not be for your ds, either) so I was given lidocaine (sp) which is topical and numbs the rash...
  5. jeannine
    Thanks for your replies! I did talk to the husband- and he didn't have any tests done. I told him he needed a new doctor. It seems that he was given a cream for the ringworm and told that he could have some gluten daily (approx one sandwich a day). He told me that his doctor is the best and very "cutting edge." Whatever that means! Oh, well. To...
  6. jeannine
    After 18 months of hell in the form of dermatitis herpetiformis, I was diagnosed. It took multiple skin biopsies and duodenal biopsies. So, I tell a friend and she tells me her husband was just diagnosed as well. I asked about how he did with the testing and she said no testing- he had ringworm and had diarhea for about a week and went in for the ringworm...
  7. jeannine
    RoseTapper, I'll see how it goes with the gluten-free and I am hoping that the rash will clear on it's own. I originally broke out 18 months ago so I'm not sure how long it will take with the diet alone. It is getting hot here in Texas and I want to be able to wear shorts At least I'll have a week before I talk to my doc again to see if I notice any...
  8. jeannine
    I went back to my derm today. He is a resident and always needs to have someone else come in. Well, today he was able to bring in 2 doctors, both with experience with DH. They agreed, with out a doubt, that this evil, evil rash is DH. They told my doc to take 2 biopsies to make sure. They gave me some numbing ointment (heavy duty stuff) and said the...
  9. jeannine
    Well, my follow up isn't until May 1- so much for the 2 weeks. Cruelshoes- that is interesting about the polyps. I learn something new every day! Thanks! Jeannine
  10. jeannine
    Just wanted to add that a lot of marinades have wheat in them! I didn't know that until I found out that McDonald's grilled chicken has wheat products in it! Here is the entry from their website: Grilled Chicken Breast Filet: Chicken breast filets with rib meat, water, seasoning (salt, sugar, food starch-modified, maltodextrin, spices, dextrose, autolyzed...
  11. jeannine
    I just had my scope and biospy 2 days ago. Two weeks before that I saw the gastro for the first time and when we scheduled the biopsy I was told to eat gluten- and lots of it, some at every meal. I was soooo sick, I have (I think) dh and broke worse than ever and lost over 15 lbs in the 2 weeks (I'm overweight so that wasn't as horrible as it could have...
  12. jeannine
    I went in yesterday and had a liver biopsy, upper scope and a doudenal biopsy. I never saw the doc after since a emergency came in and he was called in. The nurse showed me (and gave me my own set) of pictures of the scope. She told me that my fundus was covered in polyps and doc removed 10. I asked about diet and told her I was no longer eating gluten...
  13. jeannine
    Well, another day another 2 pounds! After the biopsy, I am going to go gluten-free- really gluten-free (not the half-baked job I was doing). This is just crazy, losing so much weight so quickly, feeling like crud, and the rash is everywhere but my face now! I am now sick enough to know that even if my tests come back negative, I have to do something...
  14. jeannine
    I have been seeing a dermatologist for a rash that I believe to be DH. The doc doesn't know what it is. The rash has been around for over a year and I've been seeing the derm for 8 months. He finally added my history to my rash and sent me to a gastroenterologist. I talked to a MD, resident and PA while there. They looked at my history but not so much...
  15. jeannine
    Thanks for your replies! I always learn so much when I come here. The dermatologist did a "general" biopsy back in Aug/Sep and isn't interested in doing a specific one. He scrapes the rash about every other visit and looks under the microscope and just tells me he doesn't see anything there. He is a resident and always has to call in a more senior dr...
  16. jeannine
    I have a non-diagnosed rash that I sincerely believe to be dh. It is on both my lower legs, both hips, both sides of my waist. I have gone gluten-free (for a few weeks) and have not really noticed that much of an improvment (I, however, no longer wake up scratching in the middle of the night). A couple of nights ago we ate out, and though I tried to be...
  17. jeannine
    I've been gluten free for a couple weeks and already feeling soooo much better and the horrible rash was fading fast from my rear end and not itching and burning so much on my lower legs. Well, yesterday, we go to church and I had a huge brain cramp and received communion. Ugh! Last night started with tingling and I woke up with my back and legs on fire...
  18. jeannine
    Yes, I have convinced myself it is dh. I have been looking for an answer for a long time and doctors kept pointing at different auto-immune thingys. I have read a lot about dh and celiac over the last few weeks- and it has been like a light going on inside my head. Which I know doesn't mean that I have dh, but it sure would answer a lot of questions for...
  19. jeannine
    I went back to my derm today with regards to the rashes (now on my lower legs, lower back, rear end, lower stomach and neck). I feel like I'm going to rip my skin off- or at least I wish I could. At my last visit we talked about dh and why it seemed to fit, but he had to call in a more senior doctor that prescribed anti-biotics (which I did not finish)...
  20. jeannine

    ARCHIVED Moving Rash?

    jeannine posted a topic in Dermatitis Herpetiformis

    I've posted a couple of times about the rash on my legs and recently about a new outbreak on my lower back. Well, the rash on my legs is fading and the rash on my back is growing. I started eating gluten-free several days ago. Would this be a "normal" dh thing? Earlier this week I finished the 2 weeks of treatment a derm put me on because he thinks...
  21. jeannine

    ARCHIVED New Breakout

    jeannine posted a topic in Dermatitis Herpetiformis

    Yesterday my lower back started itching like crazy. Then I kept waking up because of the rash on my legs and the itchiness on my lower back. When I woke up this morning I looked in the mirror and, with no great surprise, saw the same rash on my lower back that has plagued me on my lower legs for a year now! I had agreed with the dermatologist to do another...
  22. jeannine
    Thanks, Trillian! I am almost expecting a negative test result because there seems to be a lot of false-negatives. My gp told me to start a gluten free diet next week (after I finish the antibiotics and cream the last derm gave me). Jeannine
  23. jeannine
    I saw my new GP today and was pleasantly surprised. After relating my last year with her (including seeing umpteen doctors and several misdiagonsis for several other diseases) and talking to her about my conversation with the dermatologist about celiac disease and DH she said that she just sat in on a discussion about celiac disease- and she ordered the...
  24. jeannine
    Hi Wildflowers, I'm sure others with much more experience will be along to help you out. The only treatment for celiac disease is a gluten free diet- would you be willing to try that for awhile to see if that helps your symptoms. A lot of people here are self-diagnosed and have been helped greatly cutting gluten from their diets. I, myself, am waiting...
  25. jeannine
    Thanks so much! By the way, I've been married for 17 years and have 4 kids and I love most Army doctors! I don't have any complaints with my treatment over the last year (except the last one!). I really like the fact that they are always training so they are usually up on things, and in some ways I like to see so many- it never hurts to have another opinion...
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