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

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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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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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