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Tried To Post And Wiped Out


Rosebriar

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Rosebriar Newbie

I spent time and thought constructing my story that I thought would benefit others. I first found the POSTING directions confusing. There should be a simple icon for a new member to add their comments and story other than NEW TOPIC. My entire entry was wiped out without warning. It makes me not want to use the site. I have had Celiac for over 25 years and have had experiences to share. Is there a time limit on this forum?

Also the Quick Access is confusing to me as a newcomer. I just want to post!

Disappointed.


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Lisa Mentor

I am sorry that you have had difficulty with your first post. Welcome and please feel free to share your experience.

missy'smom Collaborator

Welcome!

Make sure that you click "add reply" after typing your response. If you click "preview post" you still need to click "add reply" after that. I failed to do this quite a few times when I first joined and had my posts erased. Don't give up. You can click on "reply" at the bottom right on any post that you want to respond to. That person's comments will show up and you can leave them or erase them. There is no time limit. Just keep in mind that if you're posting a longer response it is sometimes helpful to those reading it if you break it up into smaller paragraphs.

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    • trents
      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
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      Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back positive for dermatitis herpetiformis. The important thing is to get a definitive diagnosis of dermatitis herpetiformis. What you've described sounds like classic dermatitis herpetiformis though. Hopefully, your Dermatologist has come across dermatitis herpetiformis before and performs the skin biopsy correctly as trents mentioned. I've had the blisters on the knees, hips, forearms/elbows or anywhere that pressure is applied to the skin ... from clothing or otherwise. They itch like nothing on earth, and yes salt from sweat or soaps/shower gels will irritate a lot. I've been on Dapsone and it is very very effective at eliminating the dermatitis herpetiformis itch, and improved my quality of life in the early stages of getting on top of dermatitis herpetiformis while I adjusted to the gluten-free diet. But it does have various side effects as trents said. It can effect the red blood cells, lowering hemoglobin and can cause anemia, and requires regular blood monitoring whilst on it. You would need to consider it carefully with your Dermatologist if you do have dermatitis herpetiformis. Here's a very informative webinar from Coeliac Canada discussing everything dermatitis herpetiformis related.  https://www.youtube.com/watch?v=PAdmsNiyfOw I've also found this recent interview with a Dermatologist about dermatitis herpetiformis to be educational.  https://www.youtube.com/watch?v=rZnLeKutgUY Keep the chin up and keep advocating for yourself for a proper diagnosis. Though it sounds like you're on top of that already. Are you in the UK or Ireland? I'm curious because your surname is Irish. 
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      Thanks again everyone! Twenty mins on here way more helpful than both Dr's combined 😅
    • trents
    • trents
      I would go for four weeks to ensure a valid test, if you can tolerate it, that is.
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