bigapplekathleen
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by bigapplekathleen
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I just wanted to let you all know that they have FINALLY figured it out. (I posted something on another message with complete explanation if you want to look it up.) My new gastro did biopsies 3 weeks ago that showed Lymphocitic Colitis, which certainly explains A LOT. I am better already on 18 days of 9mg/dayEntocort and 6 caplets a day of Pepto Bismol...
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I don't even have gluten foods in my house. IN fact, they have never been in my house, since I just bought it 2 years ago and it was new. I live alone. My friends don't bring gluten here. I do not eat out at all anymore. I eat no processed foods - just meat, fish and veggies (and a little fruit). That's it. My toothpaste is tom's of maine - which is...
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Ok...complete frustration here... After taking prednisone for FOUR WEEKS, the sores all came back within 48 hours of stopping the meds. I am so angry! My mouth hurts so much. The blood tests were negative for coxscakie and my new infectious disease doc ran all kinds of blood work to check for vitamin deficiencies. There are NONE. So, we have no...
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Actually, you're wrong on the origin of the sores. These are NOT herpes and are not spread sexually. They are purely VIRAL. I have gone over and over this with the specialists. They have been cultured, etc. It is definitely NOT that. K
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So...another question for those of you that have had severe outbreaks like this before... I am now at Day 32 after the sores started, and they are virtually gone. There are still a few in there, and a few pop up each day, but go away fast, since I am still on prednisone. So, now that the mouth is healing, I am noticing that my tongue and inside of my...
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Welll...here's the update... The sores went away with the high-dose prednisone that I took for 7 days, but within 48 hours of the last dose, they came back like crazy and I am in so much pain again with sores everywhere. I went back to the docs again and now they think it's NOT coxsackie virus, but just an outbreak of unknown origin. (Again, common in celiac...
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I am completely recovered now (a week later!). The prednisone was a life-saver for me this week. I was back to normal in just 24-48 hours, and the sores were gone in about 4-5 days. I will follow up with an infectious disease person in 2 weeks, since we don't have the blood work back yet, anyway. (Coxsackie titer takes 2 weeks.) Thanks for all the suggestions...
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Wow. That explains it. I am a private instructor (kids age 4- adult) and a university professor. BUT this appeared before I started teaching this semester, so I picked it up somewhere else! Who knows!?
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Wow...you had coxscakie as an adult? I didn't have a cold at all; no mucous either. I am planning to have my tonsils out really soon, since they are so bad. I can't believe I am even considering that at age 39, but they have little holes all over them and tend to breed infection, no matter how clean I keep them. Plus their size impedes my singing. So...
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He is voted one of the best doctors in the Ny Metro area every year... Board certified in allergy and immunology...tough to go after that in any way...
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He did NOT apologize.
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YOu guys won't believe this...but that allergist actually just called me. I cannot believe it. I told him what the other docs found and how surprised they were about what HE had prescribed and the fact that he gave no steroids or prednisone. He wasn't even aware that someone could get coxsackie as an adult, and without hand or feet rash. And he's an immunologist...
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I just want to add that I called my allergist/immunologist today to tell him how off base he was in his diagnosis on Tuesday and how sick I got because he missed it. I asked him if it could be something contagious, and he kept saying no. He didn't do a culture, didn't do blood work, and wouldn't give me steroids or pain meds. It continued to worsen to the...
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I am not sure if percocet can be cut in half. I will ask the pharmacist. I feel almost no pain now, but I still cannot eat even mashed foods. It is way too painful, considering that my tongue is nearly doubled in size and the sores are still everywhere. I hope that the meds start to work some magic. I have never felt so awful.
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Can you believe that I actually asked my immunologist and my GP (on 2 consecutive days) for both prednisone and lidocaine and they said no. (!) I am firing them both. The pain meds are wiping me out! I see why they tell you not to drive! WOW !
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Well, guys, we finally have what we think is an answer. I spent three hours in the ER and 90 minutes in a different doctor's office (where they sent me after the ER) and 5 more docs looked at me. It's certainly viral in nature, but because of the clusters of ulcers in my mouth, it looks more like hand, foot & mouth disease (coxsacki), even though I...
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That's a very interesting thought. I kept thinking, wow, I stopped my vitamins and BAM! Maybe I should take them right away. I don't have any Lysine here, but will have someone stop and get me some and bring it over. My temp is in the 102 range (going up) so I need to just lay low. Thanks! k
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Thanks for the suggestion... but I am allergic to tetracycline
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Thanks. I am not currently taking ANY oral medications, so that's out. (I started the VALTREX last night, but we called the company and they said it was gluten-free.) I haven't even added new foods in my diet. I am stumped. I am using that mouth wash you talked about. It's different at every pharmacy, depending on what they add, but basically calms it...
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Which brands of L-Lysine are Gluten-free ? Also - you have had EB for 2 years!? The doctors told me 6-12 month recovery to get back where I was. I have some really great days and some horrible (as evidenced by this week). I have had symptoms of EB since January, but wasn't diagnosed til end of May. The infectious disease doc said my bloodwork indicated...
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Ok, old-timers. I really need your help. 12 days ago, I got a couple of canker sores. This is normal for me after getting glutened (which I think had happened at a luncheon at work three days prior to the outbreak). The sores seemed to be going away and then BAM! They got really really bad and have now spread across every surface of my mouth this week...