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Everything posted by esammarie

  1. I am so glad to hear someone else had this experience and I love your boss's decree! Thank you so much for sharing. It really helps!
  2. Oh, that's really good to know! I will look into it. Thank you so much!
  3. Welcome to this scary yet comforting and healing place called "I have celiac disease!" I was diagnosed only a month ago and I have found this site ENORMOUSLY helpful and comforting. I am not experienced enough, I don't think, to offer much advice except to say that I felt that feeling of sadness, of anger, of hopelessness. It seemed so enormous - ALL those things I'll never eat again! It felt overwhelming. But then I read and read and got great advice here and I found that there are all kinds of things that are safe and yummy for us to eat and I felt better! I won't be Pollyanna and say it's easy; it's not. But it is SO worth it and after a while I know this will feel like second nature and I won't be afraid to go to group meetings or out to dinner and I will be proud of the wonderful foods I introduce people to. That will be GREAT!!! I have DH, too. That's how this started. And I had "female" problems. After the last miscarriage four years ago I said I just wasn't meant to be a mom. But then I read on this site and on many other sites that celiac disease definitely is a factor! And it makes sense, if you aren't nourished, if you body is missing all the nutrition it should be getting because the GI system can't absorb them, if your body is producing antibodies against itself, well, then it makes sense that a baby can't grow under those circumstances. Again, others are more knowledgeable than me and I hope I haven't said too much. I just want you to know there are great people here and they are right - you CAN do this and you will be GLAD you did when you feel better than you've ever felt before! A hug for you for couragel
  4. This is very funny! Thanks for sharing it!
  5. Three times now, since going gluten-free after the diagnosis of DH and celiac, my "plague" or DH has erupted after eating lunch at work. Each time I had a super-yummy completely gluten-free lunch: a gluten-free Applegate Farms turkey dog on Kinnikinnik gluten-free brown bread with gluten-free mustard and some fresh lettuce. Today it was a GlutenFreeda's gluten-free dairy free veggie burrito with canned organic peaches in their own juice. I was worried. What was it??? What had I eaten? I carefully heated things in the office microwave that I cleaned and then washed my hands then my stuff was heated in the packaging I had made for them in my own kitchen. I had heated food in the microwave before..........and then I realized what it was. My keyboard!!! I usually eat lunch at my desk, often working on the computer. Have done it for years. Of course there are crumbs in the keyboard. I can see them. I tried to clean them out and wipe down the keyboard regularly but here's the thing. Most other lunches I ate with a fork or spoon. The past two lunches were finger food. Gross, I know that, too. I got a new toaster and other things but this is the same old keyboard!!! Lessons learned: stop eating over the keyboard (it's just not a good idea no matter what I'm eating); get a new keyboard; stop eating with my fingers, even if it's a sandwich! Kind of funny, but not really. My own sloppiness made me sick. Dumb dumb dumb. On the bright side, these new foods really taste yummy!
  6. I've had fibromyalgia since 1988 and was diagnosed with celiac disease with dermatitis herpetiformis last month. For my fibro, I take 40 mgs of amitriptyline (Elavil) every night - have on and off for years. It was the first treatment back in 88 and the best for me, though I have to say that since the celiac diagnosis my fibro has been acting up, but that could be because I stopped running because it really made the DH worse. Now that the DH is under control with the gluten-free (still working on the gluten-free; I've accidentally glutened myself a few times so far, which is very frustrating) diet, I need to get back to running because it makes me feel so good. I tried Cymbalta several times but it's really hard on my stomach and it made my muscles twitch and caused constant yawning even though I wasn't tired. Maybe you could try the old classic amitriptyline. It's really cheap, too!!
  7. My DH was discovered by the Physician Assistant Sheila Mayo in the Dermatology dept. at Emory Clinic - Clifton Road. She works under Dr. Michael Sarradet. Dr. Jamie MacKelfresh also in the same Derm. dept. specializes in DH and she's the one who read my biopsies and diagnosed the DH. It can be tough to get an appt. with the doctors but you can get in pretty quickly to see Sheila. That's good because while you are there, she can call in the doctors to consult. So you see the doctor just not exclusively - this is a nice way to jump the line, so to speak. I owe these doctors a lot because it never occurred to me the rash was anything like celiac. I thought I had a severe allergy but couldn't figure out to what. I never would have thought to ask for a biopsy, except I was concerned about family history of carcinomas. It's weird. It was good to be there, too, because then I went over to GI and Dr. Keilin did the GI biopsy and endoscopic exam and the blood tests and here I am, confirmed with celiac disease and working on healing. Good luck!
  8. I'm with you; the pathophysiology of DH is quite interesting. There are some great online discussions to check out - they really helped me understand my DH and why it does what it does: http://emedicine.medscape.com/article/1062640-overview (this is not written for the average lay person and so the very medical terminology can be a bit tough but it's a really thorough discussion of the disease) This one is more reader friendly: http://celiacdisease.about.com/od/whatisce...matitisHerp.htm I hope these are helpful. I'm dealing with a new breakout about 4 weeks into the gluten-free life. I'm thinking I cross-contaminated myself after making my niece a hotdog on a regular bun. I must not have washed my hands and counter carefully enough before making my own lunch. Dumb mistake!
  9. How fabulous!!!! It is worth bragging about. The rash, which I call Plague, can look terrible and make you feel worse. I, too, feel elated that my knees don't look so purple and scabby. The scars are there but they aren't as angry looking and new breakouts of Plague haven't happened since I was diagnosed and went gluten free in September. Congratulations and flaunt those legs!!
  10. Oh my goodness!!! I am so sorry you are going through this! Autoimmune diseases definitely are linked. If you have one, it's more likely that you'll have another or another. There are several articles and reports about this on this website and on trusted sources like www.csaceliacs.org, the website of the Celiac Sprue Association. I found the book Gluten-Free Living for Dummies really helpful. It's very informative and comforting at the same time. It helped me not feel so depressed about just being diagnosed with celiac disease and dermatitis herpetiformis. Thank goodness the doctors put you in the hospital and are taking this seriously and not brushing you off, though hospitals aren't great places to be. My sister just was diagnosed with Sjogren's and they said she's negative for celiac antibodies at this time and doesn't have lupus at this time. They were not surprised that she and I developed our symptoms at the same time - I am 42 and she is 41. They thought I had lupus back in you college years but it really was fibromyalgia (and maybe even when this celiac stuff started) .Our Grandmother had Hashimoto's and one of her daughters - my mom's sister and our aunt - has RA. I guess it all is in the family! Finding comfort and "kindred spirits" here on this forum has really helped me. I hope it helps you, too. If I can help in any way, please contact me. I will pray for you and wish for the doctors to do their best to get you on the road to good health!
  11. Welcome! I, too, am new to this. Just diagnosed a few weeks ago. I too, have felt depressed and anxious but have been working through the grief stages and moving on the living and loving stages. I found the following books really, really helpful: Living Gluten-Free for Dummies and Gluten-Free Cooking for Dummies. Got them on (Company Name Removed - They Spammed This Forum and are Banned). I love the "Dummies" book line. These gluten-free books are written by someone who really knows and has been living the gluten-free life. I don't know if you have Whole Foods in your neighborhood. They have a really strong commitment to gluten free products. Things are carefully labeled and researched. They keep a list of gluten-free products on their website, specific to the geographic region and store. Check them out! For great bread and bakery items, check out Kinnikinnick - they sell in retail health food stores like Whole Foods and they also do online sales. The Gluten-Free Mall on this website has good products, too. If you love pasta, then check out DeBoles rice pastas and corn pastas - all gluten-free and I like them a lot. Kroger and Publix and other regular grocery stores carry the line, though you may have to ask the store manager to stock the gluten free products for you - most managers will do that. Lundbergh Farms has great gluten-free and dairy free risotto mixes as well as rice pastas that are quite yummy. Classico pasta sauce clearly labels their products that are gluten free and they do use good manufacturing practices to segregate and minimize cross-contamination. Maggiano's Restaurant has gluten-free pasta and a whole gluten-free menu. You need to call ahead to let them know you are coming but they will be happy to accommodate you an the gluten-free pastas are good. Don't know if you have a Pizza Fusion restaurant in your area (it's a smaller chain) but if you do, they have a really good gluten-free pizza crust and sauce, as well as soy cheese. They also have great regular pizza for the non gluten-free people. I hope this helps you! Keep posting and reading here. It's been enormously helpful to me and could be for you, too!!!
  12. Yes, that certainly does sound like DH. I have it - confirmed by biopsy of perilesional skin and all positive antibody blood tests plus positive GI biopsy. Definitely do see a dermatologist. That's who diagnosed my rash - I thought I had some allergy but couldn't figure out to what. It was a shock to get the DH diagnosis, but good because it led to the rest of the testing and confirmation of celiac disease. The gluten-free diet has made the rash go away. I also had to get rid of all skin lotions, soaps, and other toiletries that have gluten (and a lot do!) because they really annoyed my skin. Iodine and sulfa drugs also aggravate DH. Please get yourself checked! You don't have to suffer!!!!
  13. I share the concern about the amount of sugar and carbs, especially from legume flours that can cause gas and bloating, consumed all at once. Before suspecting contamination or a celiac issue, I'd think about the digestion problems resulting from consuming three donuts with the ingredients they contain - and while your GI system is still trying to heal from gluten damage and may not be processing everything normally. Even people without celiac disease can have GI distress from eating lots of refined sugar products in one sitting. I'd also want to consume a good amount of water to help the system stay hydrated for digestion. So sorry something yummy and exciting caused you so much trouble!
  14. Thanks, friends, for all of your advice and support. I decided to have the endoscopic exam and I am glad I did because not only did it show "severe scalloping" and damage to the duodenum to confirm the celiac disease diagnosis, they also found a nasty throat infection and esophagitis resulting from the infection, which explains my difficulties swallowing. So now it's beyond a doubt I have celiac disease and I have meds for the throat infection. back on the gluten-free diet and am hoping this DH will get better soon! Many thanks again!
  15. I am really lucky. I went to the dermatologist after my primary doctor didn't know what this recurring rash was. I've had it on and off for two years. On my elbows, knees, sometimes spreading to my arms and my feet. I thought I was allergic to something and went crazy and spent a lot of money changing shampoos, conditioners, skin cleansers, makeup, etc. I finally gave up and went to the dermatologist and the physician assistant suggested a biopsy because she, the doctor she practices under, and the resident (the perks of working at a university with a teaching hospital and health care system) didn't know what it was. I was shocked when it came back with suspected DH and even more surprised when the peri-lesional biopsy also said DH. Blood tests all concurred. You know, there are pre-cancerous cells, pre-cancer growths, particularly on the skin and in other places. Could there be such a thing as pre-celiac, or pre-DH? If you had pre-cancerous cells on your skin they would act swiftly to remove them and study them and they would watch you. Why not the same for celiac disease? Why not the same for DH? Do you have to be one day negative and all of a sudden positive? I am sure it happens over time. It would have to develop gradually, just like an infection builds and then hits full force. I am so sorry you have to suffer this way. Work with what works for you. If you feel better gluten-free then you should be gluten free!
  16. Thanks so much, to each and every one of you! I talked with the nurse practioner in the GI dept (I work for a major research university with a major healthcare system) and explained how I was feeling really sick - haven't been to work since last Wednesday because of the GI symptoms and the intensely itching rash and I am just feeling depressed by all of this. She said, "You saw Dr. So-and-So, right?" I replied, "No, I've never met the man. I saw you." I explained my concerns and she said I "have to have the biopsy. It's the only way to diagnose celiac disease." I replied, "Not according to the NIH (thanks to you all, I know this!)" I related the NIH advice and she said, "No. That's nice but you need the biopsy." I said, "I don't need it but I understand why you want it done. All I ask is for some help to get through it." Finally got an antidepressant to help with the wild mood dive. I will be fine. At this point, I want to keep with the biopsy so I can tell the doctor to his face that this is not the way to handle patients and he might want to rethink his approach. My job is promote service learning, so that's what I am going to do!!! Serve, listen, and learn. It ain't just for students. :-)
  17. Would that be related to the brilliant irony of Tom T. Hall? Love it!
  18. thank you! I really appreciate your perspective and I am so sorry you had to suffer all of that. I am glad you are doing better!
  19. Thank you!!!! I know the small intestine biopsy can show nothing for folks with DH. It just seems silly to waste the money - especially now when there is a raging debate about health care reform and "over use" of "the system." You are one of several people who have said the same thing. I just want to be well and happy. Thank you!
  20. For those of you with DH, can you please help? I had two positive skin biopsies - first of lesional skin and then, because the first suggested DH, of peri-lesional skin by immunofluorescence. Came back with DH diagnosis. Had blood tests and they came back like this: 313 for T. Transg IGA. 79 for A-Gliadin IGG and 205 for A-Gliladin IGA; A-Endomysial AB = positive; Endomysial IGA GIV = 1:320. Doctors said that was clearly indication of celiac disease. I went gluten-free for 10 days: the rash started to clear and I felt much better, though startled that this was what I have (it was the last think I expected. In fact, I never thought this rash of two years was anything more than an allergic reaction to something I couldn't define). But last week the GI doc said I had to go back on gluten and have endoscopy and biopsy of the small intestine. So I started intesting gluten again and I feel horrible. Do I have to have the GI biopsy? Could I say no? Is there a good reason to go for this? I am getting depressed and sad, not to mention sick. Of course, the rash has reappeared and my gut is a mess. I don't want to devolve into depression. I'm thinking I could benefit from antidepressant medication just to get through this. Please help!
  21. To KahlelFamily - that rash sounds definitely like DH. I am so sorry you've had to suffer like this! Did they tell you to try corticosteroid cream?
  22. Thanks for the advice! It seems strange to have to suffer towards a biopsy when the blood work and the skin biopsies are pretty clear - there's no doubt about it. I am thinking of canceling the biopsy, especially since it's not foolproof and it has some risk. I just want to feel better! As soon as the second skin biopsy with immunofluorescence came back with the diagnosis of DH, I started the gluten-free diet. I was one week into it and my skin really cleared up. Then the blood tests came back with the positive markers and high titers so my Primary Care DR. said I should see the GIist, who immediately said I had to go back on a regular diet and schedule the endoscopy and small intestine biopsy. That was last week and my DH rash immediately returned and my insides just feel like it's on fire - either it's diarrhea or the opposite and I am so frustrated. I am thinking of following your advice. Thank you!
  23. I don't understand it, either, but the doctor says I have to do this. I read and read and it seemed that the second biopsy of peri-lesional skin that confirmed DH by immunofluorescence, which it did, plus all the positive blood tests (all very positive and with high titers) that it was a done deal. The doc wants the trifecta - so I have to poison myself, they say. What was your experience? Is this wrong or as awful as it seems? I want no room for question - the skin biopsy plus blood tests seemed positive enough. Advice?
  24. Thank you all for sharing your stories. They really calm me and help me feel less frightened and sad. Though I do feel sad. I developed two years ago what last month was diagnosed as dermatitis herpetiformis a few months after having the Nissen Fundoplication surgery to correct horrible acid reflux. That procedure was much needed and made a world of difference - much fewer asthma episodes and fewer sinus infections. Then the weird rash. I Googled "knee and shoulder rash" and it returned nothing of value. So I tried "Knee and elbow and shoulder rash" and still nothing. It would come and go, or so it seemed. It got much worse when I traveled and now I know why. When traveling I ate much more gluten then when at home. Great microbrews, regional cuisine, so yummy but I would itch and itch and so I went crazy thinking it was the shampoo, the conditioner, the soap, the skin lotion......it was none of those things, but I didn't know that! Now I do. Positive biopsy of lesion and positive biopsy of peri-lesional skin returned the DH diagnosis, which was a huge shock. Then they took six vials of blood which returned very positive results for all the markers. That's enough for me but no, I have to continue to consume gluten, which is making me very sick, in preparation for endoscopy and biopsy on Friday. I've had many endoscopic exams - when I was diagnosed with IBS plus fibromyalgia two decades ago, when I was being diagnosed with GERD and then studied to discover the GERD was "structural," blah blah blah. This celiac disease reality which isn't reality until I suffer some more really will be fine - the "preparation" is what sucks. I must have had the markers....just didn't know it. My sister just was diagnosed with Sjogren's. She tested negative for the celiac markers but it's all related. One disease is related to another. It doesn't have to be one-to-one. It could be diagonal or cross-town. Peace and peace and good health to you all.
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