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Finally, A Doc Who Is Willing To Test!


pikkulintu

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pikkulintu Rookie

Had an appointment with my doc this morning for an unrelated issue. Mentioned to her that the rash that I've had for approx 2 months and had shown her a week prior (which I believe is DH) has spread and gotten worse. I wanted to ask for a celiac blood panel test and was fully prepared to fight for it as from what I've read, doctors can be somewhat reluctant to test.

 

To my suprise, after asking me a few questions, she recommended I be screened for celiac without me even asking! Finally! This was the third doctor I had showed this rash to and the first who asked if I had ever been diagnosed with a wheat allergy after looking at it. She's given me a referral for a dermatologist who she said would take a biopsy and hopefully provide some answers. Find out the blood test results in a few days or so and dermo appointment is in a week.

 

First hurdle in getting a blood test is done! Now to tackle the biopsy and hope it's done correctly.

 


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cyclinglady Grand Master

Yippee!   :D

mamaw Community Regular

GREAT......  just make  sure  they understand  how  to do  the  correct   biopsy.....clean  skin next to a  fresh lesion.....Glad  things  are  brighter  with  finding  a  doc....

dancingmama Newbie

Glad you are getting tested and they are taking you seriously! 

pikkulintu Rookie

Thanks for the support guys - much appreciated! :D

squirmingitch Veteran

Do NOT stop eating gluten until ALL testing is done & you have the results in your hot little hands okay? That includes the dh biopsy. Find out if the GI will want to do an endoscopy -- if they will want to do that then you have to STAY ON gluten until that's done.

Just FYI, 60% of those with dh test negative on the blood panel & have fewer positives on the endoscopy. Make SURE the GI takes 6 biopsies on an endoscopy not just 2 or 3 or 4.

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    • Richardo
      I've never had problems with quinoa but I always rinse it well before cooking in case it's processed with other grains. I think quinoa is classified as a seed. I can't eat grains at all but I can eat all seeds. Ain't the human body a pandora's box of surprises??? 
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      @Richardo, I'm in the same boat as you! I can't handle certified gluten free oats at all. Quinoa is the worst, even when I soak it in water and then wash under the tap for 10 minutes ... I have a reaction. It must be an immune system reaction to the proteins in these gluten-free grains. 
    • trents
      We are all different and our immune systems are unique. I will say, however, that I have not gotten the impression as a moderator and reading hundreds and hundreds of posts on this forum over the years that a dermatitis herpetiformis outbreak caused by grains other than wheat, barley and rye is common. But perhaps it is more common than we have realized and it could be why it it is seems to be common that those who suffer from dermatitis herpetiformis struggle to keep it under control. Perhaps there are qualities found in all cereal grains besides gluten that are contributing factors. Also, have you tried a low iodine diet to see if it helps with your dermatitis herpetiformis? Reportedly, reducing iodine helps some folks afflicted with dermatitis herpetiformis.
    • Richardo
      Ok thanks Trents. I had the lesions biopsied and confirmed dermatitis herpetiformis, so I guess dermatitis herpetiformis can be associated with other grains not typically gluten. I appreciate your comment and I'll give Dr Osborne the benefit of the doubt because without him I would never have known of my grain intolerance and would still be suffering today. I simply never read anyone explain how grains could worsen dermatitis herpetiformis and I feel that information should be made much more readily available. Hey if someone tries going grain free and there's no improvement, no loss, however it drastically changed my life for the better and could at least be offered as a suggestion to sufferers from dermatitis herpetiformis. The other option is Dapsome and I wouldn't want anyone taking that chemical if there was a more natural solution. thanks again 
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