Jump to content

tinpins

Advanced Members
 View Profile  See their activity

  • Posts

    85

  • Joined

  • Last visited

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by tinpins

  1. tinpins
    Yes ... thanks for reminding me ... so many food allergies that I have to pick my way through the allowable food list. I'm finding lots of good resources and recipes online. I don't know if it was you who recommended keeping a food journal, but what a huge help that is. I'm not usually forgetful but when the war is being waged in my gut my brain joins in...
  2. tinpins
    Progress! It's so good that you can swim without too much discomfort. That's wonderful actually. I don't know enough about Dapsone to be able to comment ... other than to say that sounds like a positive as well. Now that my lesions are less itchy I too can stand being out in the sun for short periods of time in the garden. A month ago I would not have been...
  3. tinpins
    Thanks squirmingitch ...That's my big smiley brave front ... I'm like everyone else here and have my meltdowns and times of feeling overwhelmed. Some days are really tough but here I find encouragement and hope : ) I'm back to the drawing board now with my food choices. I'm going to focus on SCD and see how I fare. My doc got me an appointment to see a dietitian...
  4. tinpins
    Incredible ... as one gets back the simple little pleasures like a lukewarm shower without pain, the realization of how much DH robs you of starts to become apparent. It's been years of coping, so one adjusts! I ordered my medical ID bracelet today ... it will be my reminder of how lucky I am that I have a condition that I can control without medication or...
  5. tinpins
    3 weeks tomorrow and there is some definite improvement ... for the first time in over 15 months I was able to have a shower and not be in pain from the water on my back. So my DH has subsided in intensity in only 3 weeks. Still covered in lesions but they are not as itchy or painful and there are no new eruptions. That's huge But the gut issues/pain...
  6. tinpins
    Hopefully the increased levels of Dapsone will help you ... please share the outcome. I feel the same way as you about not letting this thing control my life ... but some days it controls mine and there's nothing I can do about it. I used to swim regularly but chlorine is not my friend and I had to stop because I was getting debilitating migraine headaches...
  7. tinpins
    Your journey sounds tough and I would find not being able to swim very disheartening. This condition is so challenging ... the roller coaster effect of the symptoms and emotions is hard to deal with ... yes I confess overwhelming at times ... and I am so thankful to have found this forum. Our specialists and PCP/GPs are great at diagnosing and prescribing...
  8. tinpins
    I don't like wearing stuff on my wrist ... but I dislike DH more. Partly it will be my "crutch" too when I feel like I might be inconveniencing someone by being too particular. My own visual reminder of what's most important
  9. tinpins
    A positive report: Two weeks into my life without gluten and there is a definite improvement ... less itchy, bleeding much less and no significant new eruptions. This is a huge improvement after all this time. Still major gut issues but that will hopefully resolve itself too given time and all the help I can give it. I'm going to buy myself a medical alert...
  10. tinpins
    This really helps .. thank you again. Soy and corn are out for me and I'm only using fermented milk products in small doses. This is why I'm being so cautious about a probiotic ... I know I need it but I don't want to worsen the journey so I'm being careful. Well, I believe you did say earlier that DH changes your life and wow does it ever. I'm just ever...
  11. tinpins
    Within days of removing gluten from my diet the rash became less itchy. 12 days into my "no gluten for life" journey I no longer need to use extreme measures like ice packs to give me relief. The itch is lessening and the dermatologist could not find any new lesions to biopsy Plus other symptoms were alleviated almost immediately (headaches). My intestines...
  12. tinpins
    Thank you. Thank you. I've been reading these doctor's articles in particular. There's a ton of information to sift through and analyse. Open Original Shared Link Open Original Shared Link and besides my diet (which was really good before the DH diagnosis) I know I have to start probiotics ... I've been reading through the forums but ... just...
  13. tinpins
    The importance of probiotics. Not sure if I should ask this here or start it in another thread. My head is spinning from reading so many different opinions about probiotics Like here where there are 5 articles pertaining to this subject by Dr Art Ayers: Open Original Shared Link or here: Open Original Shared Link I've read through...
  14. tinpins
    I'm listening. (Hugs back to you) Watery cabbage soup with a few rice pasta noodles thrown in and apple sauce on the supper menu today. I'm gonna graduate from this class! The alternative isn't even an option. What a ride
  15. tinpins
    Not sure about the date ... it didn't look suspicious but it's out ... "my work up the nerve" is going to take a bit of reassuring : ) I'm on a mission right now to find "safe" foods for myself and it's quite a forest of information to wade through. I consider your input (along with other graduates from this class : ) to be my life-line to a better...
  16. tinpins
    All I can say this morning for anyone coming here for advice is "listen to the elders" ... those who are sharing their long journeys and have invaluable advice to pass on. 10 days into my new gluten free life and there is some improvement ... so yesterday I added two new things to my rather bland diet and that really did me in. A pear and some dates....
  17. tinpins
    I've just been diagnosed with dermatitis herpetiformis and the condition from my personal experience is indescribably itchy. This link would be good to read for clarification: Open Original Shared Link Here's an excerpt from the article: “All regions are liable to invasion … the face and scalp, elbows and knees, and palms and soles. Th...
  18. tinpins
    I'm lucky I live in a large city and have access to a top notch allergist/GP/dermatologist. I've had so many negative tests in the past that having another won't make an iota of difference to me. Life has been too miserable for the last 15 months and now I know why. Just hope my poor villi haven't suffered too much from all the torture it has endured from...
  19. tinpins
    May 16, 2013: Diagnosis - dermatitis herpetiformis Question asked in my presence by my Allergist to his Resident: "What percentage of people that present with dermatitis herpetiformis have celiac disease?" Then without letting the resident respond he answered his own question: "That was a trick question. All people that present with dermatitis...
  20. tinpins
    How about this: Open Original Shared Link
  21. tinpins
    That's a business opportunity ... a body length ice pack. We can laugh and make fun but how uncomfortable this wretched journey can be. I'm a week off gluten and there is some improvement with some symptoms like the headaches and nasty stomach aches but the killer itch persists and has spread to my head. Never mind ... stay on the course and eventually...
  22. tinpins
    The support and encouragement you so kindly share is a very precious gift. Thank you so much. Putting all the paperwork together from my medical history is probably not helping me at the moment. But I need to do it so my doctors don't have to waste any more time. It is like fitting all the pieces of the puzzle together and seeing the whole picture finally...
  23. tinpins
    These are great links ... thanks
  24. tinpins
    It's hell alright ... it's as if my body is saying "where's my gluten fix?" ... more eruptions, more itching, no headaches but a "numb" feeling in my head and a sense I will burst into tears if anyone looks at me the wrong way. And I had a stomach ache last night after supper which was so disappointing after almost a week free of them. I'm keeping a food...
  25. tinpins
    I'm new to this board but I'm not new to what you have just experienced and just wanted to share what I learned. I had an severe anaphylaxis reaction which began during exercise and thankfully a hospital was nearby because my throat was closing because of the instant all over body swelling. I've never been so scared in my life. I've carried epipens ever since...
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.