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jeannine

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About jeannine

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  1. 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 in awhile I have a small flare. Can't do dapsone. Since going gluten-free, I have lost 16 lbs. and have so much more energy. Good luck! Jeannine
  2. 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 the manager, told he is unavailable. Tell the waiter that I need a gluten-free plate, could the chef come out and talk about this. Then the waiter comes back and just says the fish and the salads SHOULD be fine. I ordered a salad- dang, am I getting sick of salads (I'm allergic to shellfish and fish). I was frustrated that no one was there to help me and answer my questions. Apparently, it all worked out because I didn't have a reaction. Well, we won't be going there again! Jeannine
  3. 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 so I don't scratch it. Also keep your son's nails very short. I sleep with gloves on to keep me from scratching while sleeping (though I usually wake up glove-free). Jeannine
  4. 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 each his own... Jeannine
  5. 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 and was told that was a result of celiac disease! He was given a cream for the ringworm and told to go gluten-free. I'm just a little bit frosted because she made it seem like if I slapped some anti-fungal cream on my dh it would be gone in a day or two. Ok, my question is: is anybody really diagnosed that easily? And what does ringworm (fungal) have to do with celiac disease? Thanks! Jeannine
  6. 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 change at all with the rash. Thanks for your reply! I'm glad to hear that someone noticed an immediate improvment for dh with the diet alone- that gives me hope! Jeannine
  7. 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 biopsy will be looked at here in San Antonio and should have the labs back in a week. At that point, I should be able to start dapsone. I go back to gastro on 1 May to get the results of my duodenal biopsy. The derm told me to start the gluten-free diet immediately. I'm glad to finally have an answer (even if it did take 18 months!) Jeannine
  8. 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
  9. 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 yeast extract, hydrolyzed [corn gluten, soy, wheat gluten] proteins, garlic powder, paprika, chicken fat, chicken broth, natural flavors (plant and animal source), caramel color, polysorbate 80, xanthan gum, onion powder, extractives of paprika), modified potato starch, and sodium phosphates. CONTAINS: SOY AND WHEAT. You have to be really careful when eating out! Jeannine
  10. 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 been). I won't find out the results for about 3 weeks. The day of the scope, I didn't eat anything, of course. Yesterday, no gluten. Today the rash is not as bad- which is saying a lot for me. Just want you to know that others have gone through it, and it is a painful, nasty experience! You need to decide (and I'm sure you know) why you feel that you HAVE to have a dx. I say this because this board is chockful of stories about people that never got a dx, but did go gluten-free and have felt so much better. It is also full of warnings about false negatives- even in biopsies. Doctors rarely order the right blood tests and few labs do them well. And for the biopsies, well it is easy to get a piece of healthy tissue when there could be damaged tissue a cm away. It is definitely a hit or miss situation. In the end, you, I and everyone else going through this has to decide for ourselves what we are going to do about it. In the year and a half that I have had my rash I have seen over a dozen doctors and been on over 20 meds (hubby is in the US Army so it is rare to see the same doc more than once and I present an unusual case so they always like to bring someone else in just to see). And if I've learned nothing else, I have learned the medicine is a very INexact science. Please, ask the doc how much gluten he feels you should be ingesting a day (some say a piece of bread a day and mine was a lot more). Then decide what you are going to do if the tests come back negative. Good luck! Jeannine
  11. 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 starting immediately. She said there was no mention of "seeing" celiacs so I should wait until I see the doc again- I'm calling for my followup appt today. First, anyone else with stomach polyps? Does that have anything to do with celiacs? I've been taking prevacid, and now nexium, for about 2 years, but now don't think I have GERD, but celiacs. Second, does the doc normally just "see" damaged villi? I thought that is why they did a biopsy... Anyway, no more gluten for me- the only parts I don't have the rash are my feet, hands and face. Thanks! Jeannine
  12. 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! It is up to me and not some doc reading some lab report. Thanks for your responses! Jeannine
  13. 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 at the rash and decided to do a liver biopsy (my AMA is off the charts) and a biopsy for celiac. The MD said there is no way that I could have celiac because I'm not a "classic" case. The resident just said that I was interesting. The PA said that she is sure I have celiac and the biopsy will be definitve. Ok, my problems are- fear that the biopsy will be normal (which sounds strange, but unless I get something that actually helps the rash I am going to go completely insane). And the PA told me to eat lots of gluten before the biopsy. Well, I'm as sick as a dog- I hadn't completely given up gluten, but now I'm eating a ton and have lost 12 lbs in less than a week and I don't spend a lot of time outside of the bathroom or bed. I'm 80 lbs- I guess 68 lbs now!- overweight, so part of that doesn't bother me so much. What happens if the biopsy comes back negative? I've read a lot of stories here of biopsies being negative because they hit a "healthy" spot. Does everything just end there? Or do I go back and start everything all over? There is a family history with celiac and other autoimmune disorders. Thanks! Jeannine
  14. 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 to look- and they have all said one of the following: dry skin, nonspecific dermatitis, fungal, inflamed hair follicles. This has been going on for over a year! At my next appt I am going to demand a biopsy for dh- which they keep telling me I can't have because I have not been diagnosed with celiacs (which I haven't been tested for even though I have many of the symptoms). I've been on 20 different meds for this since it started and nothing helped so I don't understand why they won't listen to me. Talk about frustrating! Thanks again! Jeannine
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