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Questions About Celiac Disease


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4 replies to this topic

#1 Gutcheck

 
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Posted 03 August 2004 - 10:01 AM

I am a celiac patient. I've known that I had Dermititus Herpediformus (sp?) for about 20 years. Recently I had the gut-scope done to me and found I have Celiac Sprue. Since being diagnosed with D.H. long ago, I have taken Dapsone every day and kept eating whatever I wanted. Upon learning of this new development, I have decided to try to go 100% gluten free and see if it affects how I feel. But I have some questions that I need answers for:

1. Does the amount of gluten ingested affect the amount of villi damage done? In other words, is one little particle of gluten like a duodenal atomic bomb - flattening villi in all directions - or is it dependant on how much gluten you have eaten in determing the amount of damage done?

2. They told me if I went gluten-free that my villi damage was not permanent and they would begin growing back normally. What is the time period for this rejuvenation?

3. Is Dapsone bad for you?

4. Is "Ezekial" brand bread really Gluten Free? Dr. Phil's wife said it was.

5. What about 1-a-day vitamins for men and Tums?

Thanks in adavance for any information you can give me.


And when will Bard'sTale Beer be available? It's supposed to be the only Gluten-free beer available.
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#2 lovegrov

 
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Posted 03 August 2004 - 11:38 AM

If you have DH andd celiac you don't need to just "try" going gluten-free, you NEED to go gluten-free. While one crumb of gluten will not flatten all your villi, continued exposure to gluten can slowly make you sicker and sicker. You also remain more likely to develop certain cancers and other autoimmune diseases. It's possible you could go along for years with no problems, or things could slowly pile up until you end up in the hospital, like I did.

Dapsone can have severe side effects in some people, but thsoe side effects are rare and can be montiored with regular visits to the doctor. I took it for more than 20 years but wasn't aware of the connection with celiac.

Ezekiel bread is not gluten-free. Some claim sprouted wheat is OK but I wouldn't take the chance. Spelt is also off-limits. We all keep our fingers crossed for Bard's beer. They're trying to find ways and places to distribute it now.

richard
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#3 Forty320

 
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Posted 08 August 2004 - 03:54 PM

Just thought I'd mention, my mum used to sprout wheat regularly, but tests revieled the sprouts were not gluten-free.
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#4 Niteyx13

 
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Posted 08 August 2004 - 05:30 PM

http://www.ramapovalleybrewery.com/

Also has gluten-free beer, but I don't think they ship. They are located in the NY area from what I can see. =)


Deanna
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#5 DawnI

 
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Posted 11 August 2004 - 09:36 AM

please make sure you stay gluten Free.........it gets easier as you go along and everyone is here For you.
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Dawn
Son - age 11 Sean, dx 4/03
daughter - age 4.5 Hope dx 7/04
In memory of husband Bob - undiagnosed celiac disease that lead to lymphoma - March 5, 2003




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