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bigapplekathleen

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

Everything posted by bigapplekathleen

  1. bigapplekathleen

    frustrated with my auto immune disease...

  2. bigapplekathleen
    Hi everyone, Ok... I just need to vent here. Thoughts and suggestions are welcome, though, if you have had experience with the same issues! I have a history of celiac (actually, "non-celiac" gluten intolerance and severe wheat allergy), lymphocitic colitis, chronic apthuous ulcers, ever-changing thyroid numbers - on the low side, thyroid nodules...
  3. bigapplekathleen
    I posted something on here in 2004 about my fabulous dentist in Stamford, CT who was very Celiac-aware and took really good care of me! Unfortunately, he has sold his practice and his office is a disaster now. I don't trust going there at all. So, I am trying to find a new dentist in the town where I now live. I have called 4 or 5 dental offices this morning...
  4. bigapplekathleen
    I continued to have symptoms, too, despite having been gluten-free since 2003. I used the Specific Carbohydrate Diet (it was great!) and the PALEO diet (it was BETTER!). However, they finally figured out that I have Lymphocitic Colitis. Have you been biopsied for that? Apparently they have to take a minimum of 12-16 biopsies throughout the colon to catch...
  5. bigapplekathleen
    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...
  6. bigapplekathleen
    FYI - update... They just diagnosed me with Lymphocitic Colitis... which is the cause of all the previous trouble + more recent ones. (look at my other posts) K
  7. bigapplekathleen
    Just wondering if you are better. One thing I have learned from some other LC patients is that LC often responds to Cipro or Levaquin. (the danger of these drugs, though, is that they can cause tendons to rupture.) I ALWAYS get better on those 2 antibiotics. I have been on Entocort for 19 days now... feeling much better and symptoms are subsiding...
  8. bigapplekathleen
    Hi there, I was just diagnosed with Lymphocitic Colitis 2 weeks ago. I have been on a strict gluten-free diet since August 2003, when I was diagnosed with Celiac. My biopsy 2 weeks ago shows no current sign of Celiac, so that at least shows I am following the diet! So how's this for a story? I have been horribly ill for the past year. It all started...
  9. bigapplekathleen
    I agree with the previous 2 replies, and would like to add that perhaps even the paleo diet might help. Check out the book 'THE PALEO DIET" by L. Cordain. There are some great websites, too. SCD might help you heal. FYI: I was diagnosed as being wheat-intolerant by a French doctor after having repeated infections. She was right, and my celiac blood...
  10. bigapplekathleen
    Hi everyone, I noticed in a lot of posts on this thread that people are talking about SCD diet being low-carb. I guess it COULD be, depending on what you eat, but if you follow the diet suggestions in BREAKING THE VICIOUS CYCLE, the diet is actually pretty high in carbs. The book does a great job of explaining the premise behind the diet and why following...
  11. bigapplekathleen
    Hi everyone, After a 12-week bout with chronic aphthous ulcers (hundreds of them; I was hospitalized), a roller-coaster ride on high-dose prednisone for 11 weeks, and now dealing with daily colchicine (indefinitely) for control of the canker sores, I am back on the SCD Diet (which is very nearly PALEO, except for a some dairy on the SCD). My doctors cannot...
  12. bigapplekathleen
    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...
  13. bigapplekathleen
    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...
  14. bigapplekathleen
    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
  15. bigapplekathleen
    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...
  16. bigapplekathleen
    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...
  17. bigapplekathleen
    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...
  18. bigapplekathleen
    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!?
  19. bigapplekathleen
    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...
  20. bigapplekathleen
    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...
  21. bigapplekathleen
    He did NOT apologize.
  22. bigapplekathleen
    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...
  23. bigapplekathleen
    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...
  24. bigapplekathleen
    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.
  25. bigapplekathleen
    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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