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#1 jhol

 
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Posted 25 January 2013 - 03:04 PM

ok

so im just browsing the forum ,reading random posts , and just come across one on keratosis pilaris. ive just looked at some pics and realised its what ive got on my thighs and calfs!! id just put the red spots down to being overweight and the fact that the skin is stretched so making the pores more visible (does that make sense)?

and i saw a pic of someone with it on their face!! oh my god - thats it - my rash that ive developed over the last year -unbelievable. :o ive googled it and it seems ( dont know if this is all correct) it can be caused by genetic problems,hereditary, and with a possible link to gluten and dairy ( and celiac). is this correct??

its not something that has bothered me coz i exfoliated and moisturised which at least made it smooth. the only problem was i couldnt fake tan coz it seemed to show up the spots. i just settled for english rose "white" colour lol. but since it appeared on my face its really pissed me off (soz for swearing) ive been moaning about it for months and the other day my mum turned up before id put my make-up on and basically said " god your face is a mess isnt it " err yep - thats what ive been going on about!!!!

so it seems im on the right track with trying to go gluten and dairy free!

on another note, ive read a few threads about having a colonoscopy. my dad died in 2000 of bowel cancer and it was diagnosed as hereditary non polyposis colorectal cancer, so i know all about them ( have to have one every 2 years ). some people mention having one for celiac ( i know this is wrong) but is there any possibility that you could spot any problems in the colon that could indicate a problem with gluten.? ive had a polyp removed every time i had one done! i only ask coz on my last one( im so used to them i usually watch- when im aware lol) i saw a cluster of what looked like blood blisters - probably about ten of them- thought it was strange, remember wondering what they were but must have zonked out again ha! -ive googled them but havent found anything. just thought somebody here might know summat.

maybe all these genetic/hereditary stuff is connected in some way :blink:
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#2 cavernio

 
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Posted 28 January 2013 - 05:51 AM

I had a colonoscopy the same visit as my endoscopy because I had near constant pain on my left side where my bowel is. It came back completely clear EXCEPT for a few nodules at the very start of my colon. The gastroenterologist said that it could be a sign that my small intestines were damaged all the way through (since endoscopies only see the first part of the intestines), and I guess there's probably some overlap of cells and structure of where small v large intestine stops/starts.
What my GI explained to me though was that celiac disease only affects the specific cells of the small intestine, and that in and of itself celiac disease doesn't affect the large intestine. He doesn't know a whole about celiac disease though, as he had no idea that along with destroying the small intestine, it's probably responsible for my peripheral neuropathy (nerve damage).

While I still don't think celiac disease directly affects the colon (I haven't heard anything to say that it would), I believe colon cancer is one of the cancers a non-gluten free celiac is likely to get. I'd imagine that would be because in celiac disease your entire intestinal flora is going to be messed up as what stays in your intestines and then passes through to the colon is going to support different types of bacteria than someone without celiac disease. Also that celiac disease is an auto-immune disorder and so other auto-immune disorders are going to be more likely, eg crohn's.

I'm just discovering my own skin problems though. Being gluten free has somewhat cleared up my face of acne and blotchiness. It still gets bad at times though (bad is relative, it's still pretty good), so I may not be doing a good enough job being gluten-free.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#3 jhol

 
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Posted 28 January 2013 - 02:58 PM

thank-you cavernio for answering,

im in the process of going gluten and dairy free at the moment. im not celiac though (so the tests said)- so finding it difficult to stick with the decision. im adding a few gluten free recipes and snacks a week untill im completely gluten and dairy free. hopefully ill see and feel a difference within the next few months, an this bloody rash on my face and hands will disappear :)
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#4 cavernio

 
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Posted 28 January 2013 - 10:02 PM

Well there's a plethora of tests that can be done which all, of course, have the possibility of being false, just like any medical test I suppose. The current standard for a celiac test is a biopsy of the small intestine, not just blood tests, and you still haven't specifically said you've had that, so definitely consider asking for that test. And false negatives are alot more likely than false positives in blood tests for celiac disease.
My current understanding of celiac disease and gluten intolerance is that celiac disease can affect multiple different T cells but celiac disease in and of itself only affects the 1 type that destroys the small intestine, while the other ones can affect the skin and the nervous system. They might not all show up in one person though. I think you should be able to get a biopsy of your rashy skin in fact and see if there's signs of DH, the skin component of celiac.

Good luck with your diet, and continue reading about your problems. There's a lot of information on the forums and elsewhere that might help you.
Following a totally gluten and dairy free diet is hard. Keep at it even in those times of temptation, otherwise you'll never be able to tell for certain if it's gluten or not. You really have to have 0 gluten and check every piece of food you eat. If you don't know, assume it's not safe.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#5 mushroom

 
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Posted 28 January 2013 - 10:27 PM

jhol has said in another thread that her intestinal biopsies were negative,
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#6 jhol

 
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Posted 29 January 2013 - 12:07 PM

yep thanks mushroom :)

my tests all came back negative- but im determined to get a handle on this diet. everything i bought food wise this and last week have definitely been gluten and dairy free. i even made my own soup, and bought flour ( rice and gluten free) to try to make ... well i havent decided yet but i,ll make something :D might not be eatable ha! but i,ll have a go!!- just a case of seeing how it goes now. it may be wishfull thinking but im sure my joints seemed "looser" not sure if thats the right word... but dont seem to be hobbling about in the mornings like i usually am. im actually waiting for allergy tests at the moment to see if im wheat intolerant- i definitely have a problem with dairy . if the rash doesnt get any better ( but im convinced it will) i,ll talk to docs about a biopsy on it . dont think its d.h though. its not anywhere near as bad as some of the pics ive seen and not insanely itchy.
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