BrainTalk Communities 10/2006-8/2011 Archives  

Go Back   BrainTalk Communities 10/2006-8/2011 Archives > Specific Neurological Conditions (A - L) > Gluten Sensitivity / Celiac Disease

Reply
 
Thread Tools Display Modes
  #21  
Old 04-23-2007, 09:26 AM
teaandtoastgirl teaandtoastgirl is offline
Distinguished Community Member
 
Join Date: Mar 2007
Location: near the coast in Maine
Posts: 263
Default

WOW! Judy,

Thanks so much! Leslie
Reply With Quote
  #22  
Old 04-23-2007, 06:25 PM
jcc jcc is offline
Distinguished Community Member
 
Join Date: Oct 2006
Location: WI
Posts: 1,195
Default

Quote:
Originally Posted by teaandtoastgirl View Post
.....on and our experience is anedoctal.

... From our experience, I think our son's specialist will consider suggesting a gluten free diet to some of his other patients. Forward we go. Leslie
I think sharing each others experiences is what has gotten many of us where we are today. At least I sure didn't wait around for the science to fully catch up to satisfy mainstream medicine of my daughter's cryptic non-celiac gluten sensitivity.

I've known a few who have convinced their doctors by their astonishing results thanks to a gluten free diet. Deb in Arizona comes to mind . She proved her seizures were related to gluten, and also reversed her positive ANA's through dietary changes. She convinced her doctor, and I believe he now looks for gluten sensitivity in his Sjogren's patients.

Cara
__________________
The Gluten File
Reply With Quote
  #23  
Old 04-24-2007, 09:00 AM
teaandtoastgirl teaandtoastgirl is offline
Distinguished Community Member
 
Join Date: Mar 2007
Location: near the coast in Maine
Posts: 263
Default

I sent an email yesterday to Dr. Hadjivassiliou and there was a response waiting this morning. he writes:

"The possibility that gluten sensitivity is linked to chromosome 19 is not yet convincing. I do not know of any association with HS. It could just be a coincidence."

For now our experience remains anecdotal, but for us it seems to be working. We press forward nonetheless. Leslie
Reply With Quote
  #24  
Old 04-24-2007, 11:47 AM
NancyM NancyM is offline
Distinguished Community Member
 
Join Date: Oct 2006
Posts: 381
Default

Son of a gun! I think I had this too! Very embarassing, but I used to get boils in my private area, I've just been reading up and it sounds like this might be it. I never mentioned it to my doctor because it was very infrequent and I probably just forgot, and/or was embarassed.

I haven't had any for a long time now.
Reply With Quote
  #25  
Old 04-24-2007, 12:10 PM
Zonulin Zonulin is offline
Distinguished Community Member
 
Join Date: Oct 2006
Posts: 1,150
Default

Interesting discussion! Another very CLEAR example of how our immune systems react to the effects of food, environmental stresses, etc. depending upon our individual heredity. I'm looking forward to learning whether HLA DQ1 is a factor in your son's health issues, Leslie!

Karen
Reply With Quote
  #26  
Old 04-24-2007, 01:44 PM
GFPaperdoll GFPaperdoll is offline
Distinguished Community Member
 
Join Date: Oct 2006
Posts: 251
Default

Wow, what interesting developments. Leslie be sure to let us know what your son's Enterolab results are. I will be waiting... I sent this link to my friend so she could read the posts.
Nancy isn't it amazing the health conditions that we can look back on, that we had forgotten all about... Do you know what genes you have?
Reply With Quote
  #27  
Old 04-24-2007, 02:27 PM
teaandtoastgirl teaandtoastgirl is offline
Distinguished Community Member
 
Join Date: Mar 2007
Location: near the coast in Maine
Posts: 263
Default

"I haven't had any for a long time now."

Nancy,

Did that long time begin before or after becoming gluten free? I know that it can go away for some, like some out grow it, but judging from the sites I've read, lucky are the few who out grow it. you give us hope. Thank you, Leslie
Reply With Quote
  #28  
Old 04-24-2007, 02:47 PM
NancyM NancyM is offline
Distinguished Community Member
 
Join Date: Oct 2006
Posts: 381
Default

I've got one DQ1 and a DQ2.

Maybe these boils are common but no one talks about them? It IS a bit of a sensitive subject... especially when you get them where I got them. Is that a common place to get them?

I didn't get them very often, just every now and then. Maybe once a year. I remember a time when it seemed like I got a few in the same year.

I don't think I had any in the months before going GF so it is hard to say. And I don't think I had them when I was young, maybe they started showing up in my 30's.

Well, I'll be sure and mention this to my NP (gynecologist), I'm due for an exam. Also, I have wondered if another symptom in my nether area might be from an autoimmune disease, I'll have to ask about that. I think that one might be better too.
Reply With Quote
  #29  
Old 04-25-2007, 09:17 AM
teaandtoastgirl teaandtoastgirl is offline
Distinguished Community Member
 
Join Date: Mar 2007
Location: near the coast in Maine
Posts: 263
Default

"Maybe these boils are common but no one talks about them? It IS a bit of a sensitive subject... especially when you get them where I got them. Is that a common place to get them?"


They are not very common, 1 in 300 people in the US. They are also referred to as acne inversa, because they tunnel under the skin before erupting. They are found in the apocrine glands in the regions under the arms, under the breasts, around the waist, lower abdomen, buttocks and groin.

It's true, few talk about them and it is an embarrassing experience for those who get them. It is also very painful. I've read countless blogs of folks living with chronic pain due to these boils.

Puberty is the average onset of this condition, though teens and twenties tells the broader tale. Some women experience them starting in their early 30's . And for some it can be much later in life. Alledgedly it is more common in women than men. But I think maybe women are more vocal about their health- and it gets recorded more frequently than for men.

I was wondering if you have had nay boils since you became gluten free?
Thanks for sharing with us that you have experienced these.

Leslie
Reply With Quote
  #30  
Old 04-25-2007, 10:49 AM
NancyM NancyM is offline
Distinguished Community Member
 
Join Date: Oct 2006
Posts: 381
Default

No, I haven't had any since GF but they were fairly infrequent anyway.

One weird thing I had pre-GF that I haven't had since... my eyelids blowing up to enormous size as I slept. Boy, that was totally weird.
Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off



All times are GMT -4. The time now is 08:48 AM.


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2017, Jelsoft Enterprises Ltd.
BrainTalk Communities Incorporated