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Has Anyone With Dermatitis Herpetiformis Tried Terrasil?

ncallier

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ncallier Newbie
ncallier
Posted

Has anyone with dermatitis herpetiformis tried Terrasil? I am suffering horribly from some skin problem that I think is associated with my Celiac Disease, but I really don't know what it is because I can't get any of my doctors to examine it. They just suggest that I hand it off to someone else

Sorry, but I must vent a little bit! I have unresponsive doctors whose only advise is to adopt a gluten free lifestyle and see another specialist for my symptoms. They ALL obviously think that I am too stupid or something on that order to understand what that means, because that is all they can offer in the way of relief.

Immediately upon getting my diagnosis, I did and continue to follow a gluten free lifestyle. I do not cheat; I try very hard to make sure that my family/ I do not cross contaminate any surfaces or food that I come in contact with.

I really don't know what to do at this point. I have screamed and cried and cursed and fumed at the lack of care from the doctors that I have loved and admired over the years.

Please respond! I need some support and don't feel that I am getting any from my doctors, i.e. allergist, gastroenterologist, endocrinologist, general practiticioner, dermatologist...

Also, please forgive my pity party, but I feel so lost and alone. (I even hate that I admitted that!)

Thanks so much for addressing my issues!! ;)

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saintmaybe Collaborator
saintmaybe
Posted

Has anyone with dermatitis herpetiformis tried Terrasil? I am suffering horribly from some skin problem that I think is associated with my Celiac Disease, but I really don't know what it is because I can't get any of my doctors to examine it. They just suggest that I hand it off to someone else

Sorry, but I must vent a little bit! I have unresponsive doctors whose only advise is to adopt a gluten free lifestyle and see another specialist for my symptoms. They ALL obviously think that I am too stupid or something on that order to understand what that means, because that is all they can offer in the way of relief.

Immediately upon getting my diagnosis, I did and continue to follow a gluten free lifestyle. I do not cheat; I try very hard to make sure that my family/ I do not cross contaminate any surfaces or food that I come in contact with.

I really don't know what to do at this point. I have screamed and cried and cursed and fumed at the lack of care from the doctors that I have loved and admired over the years.

Please respond! I need some support and don't feel that I am getting any from my doctors, i.e. allergist, gastroenterologist, endocrinologist, general practiticioner, dermatologist...

Also, please forgive my pity party, but I feel so lost and alone. (I even hate that I admitted that!)

Thanks so much for addressing my issues!! ;)

I don't have dh,but I understand about the lack of care from doctors. I went to a dermatologist and got hit for a huge bill to boot, for them to suggest using clearasil for the chronic acne on my back. Thanks, doctors, the thought had never occurred to me. /sarcasm They then also laughed at me when I asked about the connection to gluten sensitivity. I swore off that ENTIRE HOSPITAL, after that experience. There's plenty of research that makes the connection to all kinds of skin disorders. A) I don't want a doctor/doctors who aren't up to date with current research and B. it's just f***ing rude to laugh at your patients.

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    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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      By knitty kitty · Posted

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    • NanceK
      My only proof

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      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
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