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Furious, confused, and REALLY tired of this.

MissTeaMuse
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RecoveredCeliac Apprentice
RecoveredCeliac
Posted
On 2/20/2023 at 11:41 AM, DebJ14 said:

Our son was being treated for pericaditis and lupus when he was a teen.  Because he was on large doses of Plaquenil, NSAIDs, and Prednisone he was prescribed a PPI.  Instead of just a 14 day course as now recommended, he was on it for nearly 2 years.  He was misdiagnosed, so the only drug he actually needed was the steroid for the pericarditis. It was drug induced, not systemic lupus.  Once we knew that, we began the process of weaning him off the drugs under medical supervision.  He ended up with NAFLD, which the gastro pinned on the combo of all those drugs  for such a long time.  Even now almost 25 years later he has horrible gut problems. 

you should sue

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DebJ14 Enthusiast
DebJ14
Posted
19 minutes ago, RecoveredCeliac said:

you should sue

We did!

DebJ14 Enthusiast
DebJ14
Posted
On 2/12/2023 at 8:58 AM, Grammy9 said:

Diagnosed 3 years ago by GI. At age 73. Never been sick in my life. You’re right it is totally overwhelming. Especially when you have a spouse that can’t understand it. I have DH reaction. But the gut pain is unreal. Dermatology tests showed allergy to wheat - negative! Sure! Allergists and dermatologists are not always the best source for diagnosing Celiac. Celiac many times comes with lactose intolerance. I tried lactose free milk. Took time for me to realize that I was still reacting to that. Oatly milk is the only one I can tolerate. Added vitamins. Huge improvement. I thought at my age it was time to enjoy eating out more. NOT! Not happy to be cooking at home but healthier. We travel a lot! Always have gluten free snack in my purse. Thought I could leave my kitchen as is. NOT! Convincing my husband was something else. It is overwhelming no doubt. But a good GI and accepting what you need to do to stay healthy will make a big difference. Hang in there. It will get better. 

I have Celiac, dermatitis herpetiformis yet I am not allergic, nor sensitive to wheat!  Celiac and dermatitis herpetiformis is the autoimmune reaction, which is different from an allergic reaction.

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    1. trents
      - trents replied to suek54's topic in Dermatitis Herpetiformis
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      Awaiting dermatitis herpetiformis confirmation following biopsy

      You might also consider a low iodine diet as iodine is know to exacerbate dermatitis herpetiformis. But be careful with that as well as there are health problems that can accrue from iodine deficiency.
    2. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
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      Awaiting dermatitis herpetiformis confirmation following biopsy

      Hi, Yes, the rash has gone. I still get the itches but there is nothing to see now, apart from a lot of discoloured areas where the rash was worst. Occasionally I get a single lump come up, a bit like hives, but no bigger than a pea and it goes after 24hrs and a steroid cream application. And yes, giving the gluten-free diet 110%. Very careful...
    3. trents
      - trents replied to suek54's topic in Dermatitis Herpetiformis
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      Awaiting dermatitis herpetiformis confirmation following biopsy

      Welcome to the the celiac.com community, @suek54! Is the Dapsone getting the rash under control? Are you practicing a gluten free diet yet? The only known cause for dermatitis herpetiformis is celiac disease.
    4. suek54
      - suek54 posted a topic in Dermatitis Herpetiformis
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      Awaiting dermatitis herpetiformis confirmation following biopsy

      Hi Im new to this game, so bear with me. May through to December last year totally miserable, covered literally head to toe in the worst rash ever, itching like I just cant explain. After seven different medics told me just to "keep putting the cream on, whatever it is will go in the end" finally one lovely doc diagnosed dermatitis herpetiformis...
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      Healthy Gluten Free Foods low sugar that you found?

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    • trents
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By trents · Posted

      You might also consider a low iodine diet as iodine is know to exacerbate dermatitis herpetiformis. But be careful with that as well as there are health problems that can accrue from iodine deficiency.
    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Hi, Yes, the rash has gone. I still get the itches but there is nothing to see now, apart from a lot of discoloured areas where the rash was worst. Occasionally I get a single lump come up, a bit like hives, but no bigger than a pea and it goes after 24hrs and a steroid cream application.  And yes, giving the gluten-free diet 110%. Very careful about any cross contamination.  This is my fifth autoimmune condition so well and truly on that bandwagon. 
    • trents
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By trents · Posted

      Welcome to the the celiac.com community, @suek54! Is the Dapsone getting the rash under control? Are you practicing a gluten free diet yet? The only known cause for dermatitis herpetiformis is celiac disease.
    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Hi Im new to this game, so bear with me.  May through to December last year totally miserable, covered literally head to toe in the worst rash ever, itching like I just cant explain. After seven different medics told me just to "keep putting the cream on, whatever it is will go in the end" finally one lovely doc diagnosed dermatitis herpetiformis. Biopsy 6 weeks ago and Dapsone, which I seem to be tolerating OK so far.  The NHS is in permanent backlog so no result yet but just wanted to say hello to anyone else with this maddening condition.
    • xxnonamexx
      Healthy Gluten Free Foods low sugar that you found?

      By xxnonamexx · Posted

      I know gluten free proteins like eggs and yogurt but nuts especially trail mixes are tricky as they are hard to find certified gluten free trail mixes especially w/o added sugars. I agree subscription boxes are hit or miss I think I have found RXBar with simple ingredients no added sugars gluten-free might be a great protein bar.
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