Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

O.m.g I Love This Forum


jhol

Recommended Posts

jhol Enthusiast

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:


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cavernio Enthusiast

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.

jhol Enthusiast

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 :)

cavernio Enthusiast

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.

mushroom Proficient

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

jhol Enthusiast

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748

    Tdodge
    Newest Member
    Tdodge
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.