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Misinformation On Dh Website

Fiddle-Faddle

By Fiddle-Faddle
in Dermatitis Herpetiformis

Recommended Posts

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

There is a frequent poster on dermatitisherpetiformis.org.uk who insists that celiac is rare, that DH is extremely rare, and, worst of all, that wheat is an important part of a balanced diet and that NOBODY should go gluten-free unless absolutely necessary. :ph34r:

I have provided links and information, but to no avail. This guy is really convinced that a wheat-free diet is unhealthy. :blink: He also parrots the typical doctor's mantra that a gluten-free diet is "severely restricted, and therefore unhealthy." Even the administrator there seems to defer to him, and only says that people should contact their doctors and a nutritionist before even considering beginning a gluten-free diet.

I am giving up, but thought that some of you might be able to provide better information than I did. I am concerned, as I observe him advising newbies with iffy blood work that they shouldn't even try a gluten-free diet unless they have a positive biopsy.

The particular thread is Open Original Shared Link

THANKS!

P.S. I wasn't sure where to post this, but if it belongs in the DH section instead of this one, feel free to move it!

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lovegrov Collaborator
lovegrov
Posted

Ron obviously hasn't slightest idea what he's talking about. Sad.

richard

kenlove Rising Star
kenlove
Posted

He must work for the US Wheat Exporters Assoc.! <_<

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
  • Author

RICHARD!!!!! You and I are in total agreement!!!!!! :) :) :) :) :) WOO-HOOOO!!!!!

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
  • Author

Sorry, Richard, I got a little carried away there. :rolleyes:

I'm just glad to see that I'm not the only one who thought that he was incorrect.

Phyllis28 Apprentice
Phyllis28
Posted

Fiddle Faddle,

I agree Ron is not correct. There is certainly no harm in trying a gluten free diet to see if it improves ones health. I think that "restrictive" can be interpreted two different ways. The way you and I think of it, that there are plenty of gluten free foods and that wheat, oats (Not Certified Gluten Free) rye and barley are only a small part of the food available. For other or possibly most people, I think "restrictive" is synonomous with "inconvenient". Food planning and cooking are simply part of being gluten free diet and this is not "convenient" for most people. You have already pointed out the positive aspects of a gluten free diet. The one thing I did not see anywhere in the post was something along the lines of "Being gluten free is better less restrictive than being sick".

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
  • Author

Excellent point, Phyllis!

Wow, 30 YEARS gluten-free! You can certainly say you've "been there, done that!" I can't imagine what it must have been like to have to be gluten-free 30 years ago. Kudos to whoever diagnosed you back then, too!

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lovegrov Collaborator
lovegrov
Posted
RICHARD!!!!! You and I are in total agreement!!!!!! :) :) :) :) :) WOO-HOOOO!!!!!

Wanted to send this privately but couldn't.

I'm kegler14 in that thread. You're absolutely right there and he appears to be a moron.

I know we sometimes disagree and sometimes might even be somewhat rude to each other (at least I have been), but, well, we each have very strong opinions on certain subjects. I'm trying to tame my tongue.

richard

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
  • Author
I'm trying to tame my tongue.

richard

Yeah, me too!

I'm still reading that thread, and am awfully tempted to cheer you on to NOT tame your tongue!!! :P (But you are doing a very good job there!)

Did you notice-- he said, "I was gluten-free for 12 years," not "I have been gluten-free for 12 years?" Implication is that he is no longer gluten-free. And then he mentioned Mexican food, which is certainly better than say, Panera, but is by no means guaranteed to be gluten-free.

No wonder he still has a rash. And no wonder he's so cranky.

(arrrggghhhh--trying ....to...hold....my..tongue..... :rolleyes: )

Snow Angel Newbie
Snow Angel
Posted
Did you notice-- he said, "I was gluten-free for 12 years," not "I have been gluten-free for 12 years?" Implication is that he is no longer gluten-free.

(arrrggghhhh--trying ....to...hold....my..tongue..... :rolleyes: )

I have read there a little for several weeks now and I believe its because he found he's not Celiac...or believes that to be the case anyway...I really hate the arguing over there..awesome post Fiddle Faddle.

"Open Original Shared Link

Due to a misdiagnosis, I was on a gluten-free diet for 12 years. I never felt any difference though...not even one bounce.

Ron

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
  • Author
I have read there a little for several weeks now and I believe its because he found he's not Celiac...or believes that to be the case anyway...I really hate the arguing over there..awesome post Fiddle Faddle.

Ah, that makes things much clearer! Thanks, Snow Angel.

It IS possible to be misdiagnosed with celiac. I do know of someone who had a bacterial gut infection, who was misdiagnosed with celiac, and experienced no improvement on the gluten-free diet, after which the bacterial infection was found, treated, and the symptoms finally went away.

But I doubt that in Ron's case. For one thing, he writes that he still has a bilateral rash. For another, from the things he's posted, it sounds like he was gluten-lite rather than gluten-free--apparently, he went out for Mexican food all the time.

I think it's too bad that he is such a frequent poster there, because he writes with such authority, all the newbies are going to believe him and will end up with years more of symptoms. I'm astonished that Annie lets him continue to post such obviously inaccurate information.

It's great that she has a website and forum devoted to DH, but it's a total waste of time going there.

Sad. :(

  • 2 weeks later...
Snow Angel Newbie
Snow Angel
Posted

Annie closed it ..I can't say I blame her.

Open Original Shared Link

The Dermatitis Herpetiformis Online Community is closed

It is with regret that I've finally reached a decision to take down this web site.

I originally set up the DHOC to

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
  • Author

Thanks again, Snow Angel.

I hadn't gone back to the site, so I had no idea she'd closed it. I can see why she came to that decision, though.

Archived

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