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New to DH Diagnosis


F250IDI

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F250IDI Newbie

Howdy,

No stranger to forums as I've found them to be a great tool for my interests in motorcycles and old trucks but now find myself needing to educate myself in dealing with Celiac Disease. I'm a male in my fifties now and have had to deal with eczema since I was about six years old that was mostly contained to my feet and legs and outgrew it for the most part in my teens. I would have occasional flare ups but about three months ago my elbows and upper torso broke out in blisters and itched like no tomorrow.

I hoped it would go away and used Cortisone for relief but finally made an appointment with the Dermatologist. As I'm sure most do, I began researching the internet since this outbreak seemed different than my eczema as a child, and wondered if DH was the culprit. When I showed the Doc and expressed my concern he said, "I have dozens come in that think they are Celiac and are not...but you, most likely are". He did two biopsy's, one for a local lab and the other he sent to the Mayo Clinic and a week later it was confirmed.

At the time of the biopsy results I had been gluten-free for two weeks but to my surprise they told me to start eating gluten again as they wanted to do a upper GI scope and needed some lesions to biopsy. I took full advantage and formed a bucket list that ended with pancakes the night before the scope. Still waiting for those results that should come any day and started Dapsone the day after. They have me doing blood work weekly to start and I hope to be off that stuff within a year.

My wife has been gluten-free for the better part of ten years as gluten and dairy just don't agree with her. This has been helpful to me since she knows what the good stuff is and we both do the weekly shopping together and so I've learned a lot already, I am somewhat concerned about hidden gluten though, so I still have much to learn.

Looking forward to meeting other members of the forum.


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cyclinglady Grand Master

Welcome to the forum.  Be sure to browse through the DH section for advice and tips.  

Glad your wife is gluten free.  My hubby was gluten free some 12 years before my diagnosis.  Sure makes it a bit easier!  

 

 

F250IDI Newbie

Thanks for the welcome. Endoscopy results came in the morning confirming Celiac, but they also found cells called Eosinophils which apparently has something to do with white blood cells. They want to do another scope in 8 weeks to see if they're still there.

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    1. - trents replied to Richardo's topic in Dermatitis Herpetiformis
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      dermatitis herpetiformis with all grains

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      dermatitis herpetiformis with all grains

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      dermatitis herpetiformis with all grains

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    • 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 
    • trents
      Welcome to the forum, @Richardo! We sometimes run across terms like "rice gluten", "corn gluten", and "oat gluten" but they are used informally and, technically, it is incorrect to speak of grains other than wheat, barley and rye as having gluten. Gluten is a protein with a specific structure found only in wheat, barley and rye. Other cereal grains contain proteins that are more or less similar in structure to gluten in some ways but are not actually gluten. Having said that, the proteins found in these other cereal grains are similar enough to gluten to possibly cause cross reactivity in some celiacs. Cross reactivity also happens with non cereal grain foods as well that have a protein structure similar to gluten. A prime example is dairy (the protein "casein"). Another example may be soy. Other foods can also cause cross reactivity for different reasons, such as microbial transglutaminase (aka, "meat glue") used commonly in pressed meat products. Just so you'll know, Dr. Osborne's claims have not received wide acceptance in the celiac community and are looked upon with skepticism by the medical and scientific community. Although he is a board certified nutritionist, his doctorates are actually in chiropractic medicine and pastoral science: https://www.drpeterosborne.com/about/dr-peter-osborne/ I am not sure Osborne has the training and background to address the chemical structure that defines gluten. I would encourage you to do some research on what gluten actually is. I have done this for myself and came away convinced that only wheat, barely and rye actually contain the protein gluten. I do not doubt your claims that you have breakouts of dermatitis herpetiformis from consuming these other grains. I am just contending it is not actually from gluten.
    • Richardo
      I was diagnosed celiac about 15 years ago and followed the usual diet restriction on Wheat, barley and rye and did very well on those restrictions with no problems with dermatitis herpetiformis. 4 years ago I started getting bad rashes on my knees and calves, buttocks, around my waist and my elbows and forearms and hands. It seemed to last about 11/2 to 2 months then clear up for a month and come back  again. I never changed anything in my diet and a dermatologist told me I  must getting  cross contamination, which I knew I wasn't.  Finally after struggling with it all that time, I watched a video by Dr Osborne who sited a study done in England showing that ALL grains (rice, corn etc) contain gluten. I went on a totally grain free diet and have now been 100 percent free of dermatitis herpetiformis for over a year. I tried a test and ate corn flour and it started to come back so I'm off all grains again. Long story I know, but my question is, why is practically EVERY celiac site private or Govt only mentioning the BIG 3 and never mentions other grains as a possible means of contamination? I am free  from a horribly uncomfortable condition now and I know there are others who would be encouraged by this.
    • trents
      Your chest pain could be related to the Sarcoidosis. "When it affects the lungs, wheezing, coughing, shortness of breath, or chest pain may occur." https://en.wikipedia.org/wiki/Sarcoidosis   The bowel incontinence could be caused by surgical damage (or scar tissue) to the cauda equina nerve bundle in the lumbar area of the spine. Or, it could be related to unintentional gluten exposure.
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