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MrsChoplin

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  1. Small update if anyone is interested.....

    I've been gluten-free for 1 month now. It sucks, lol.

    The rash is still very there but the itching/crawling/burning feeling IS less intense though never totally gone.

    I still find myself in denial asking myself if I REALLY have Celiac Disease...... but I do. I know I do. The blood, the rash, the way I feel..... Man. I just want to feel better.

  2. 14 hours ago, jonked said:

    Well that's me told. I'm really pleased you've adjusted and are getting well Pamela, but I think perhaps you've forgotten the learning curve, the frustration, the mistakes. I came to this forum because I don't know anyone else in my situation in real life and I wanted a space to vent, without having to deal with friends who mostly think I'm crazy. This subsection is after all called 'COPING with Celiac disease', not 'Living happily with...'

    I'm sure I will create a new lifestyle, and will adapt - I'm at least 90% there - but it's not easy. The change in lifestyle can put huge strain on relationships and be incredibly isolating. I think also it's particularly not easy if you don't have a formal diagnosis and therefore you tend to lack support from friends and family and sometimes even question your own sanity, which doesn't help you be 100% vigilant either. But surely this forum is a place where you should be able to whinge, even if you've been careless or downright stupid?

    I agree with you. 

  3. akohlman--I am exactly 1 month from being diagnosed and still going through cleaning out of all the gluten foods from my life. I have really bad Dermatitis Herpetiformis but other wise I had no reason to think I had something like Celiac Disease. That being said, I TOTALLY understand. For me... its hard to be sick and not feel sick if that makes sense.....

     

    I'm going to make the changes. I'm going to live a gluten-free life but like you... I STILL am devastated. I'm overweight... so obviously I don't have a healthy relationship with food, LOL, so I'm DYING at the idea of never eating Pizza Hut, Chili's Pasta, Red Lobster Pasta, McDonalds, etc. I don't care what anyone says.... that is a HUGE adjustment for me and I'm still reeling from the "loss".

     

    That being sad.... I have 3 children and a husband depending on me and I'll do all I can to lengthen my lifespan so.... Here is to new journeys.

     

    YOU ARE NOT ALONE in your sadness!

  4. & this is why I've already fallen in love with this forum!

    Insightful.

    I believe I have Celiac. I literally felt like I was "home" when I discovered DH Rashes and Celiac Disease. I told my husband, I'm not glad I have this but I'm glad I know why I've had the issues I've had for the past 2 years!

     

    I spoke with my husband at length about this over lunch and I think we've decided to skip the GI for now. I DO have an official DX from my Derm. that says I have DH/Celiac so I'm going with that.

    We have 3 children and I already had their blood work done last Monday. Waiting on results. I'd be a good portion of my bank account that at least 2 of the 3 have it because of issues over the years that I'm now realizing seem linked to celiac disease.

     

    Thanks so much for responding. I appreciate it!

  5. Hi everyone! I absolutely love the information I've learned since I joined this forum a few weeks ago.

    Now.... I have to be "that person" and ask for your non-medical-professional advice.....

    I've had a rash for almost 2 years--my PCP as well as my Dermatologist have tried to figure out what it was for quite some time and had trouble doing so.

    One particularly bad night, I started googling rashes (as I did almost monthly) and I stumbled upon Gluten Allergy-- Dermatitis Herpetiformis. Every thing matched to a T.

    I called my doctor on the Monday and asked her to order a full Celiac Panel. She did.

    The results are attached to this post.

    She called me and said "You are clearly Celiac" and referred me to a NEW dermatologist that is "educated" in dealing with celiac disease and DH. I went and saw the Derma 2 days later, she said "No need to biopsy.....you are clearly Celiac". There is that "Clearly Celiac" comment again.

     

    So..... this is my question. We have decent but not good insurance. I'm paying a LOT of money to see these doctors, run these tests, etc. If I am so CLEARLY Celiac.... why do I need to see a GI or have an endoscopy? I'm already looking at $600 in bills and the GI and Endo would put me closer to pay 2K out of pocket.

     

    Can I go gluten free? See if my DH improves? Is the GI NECESSARY? Has anyone NOT gone to the GI and just went gluten-free?

    Capture.PNG

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