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- Morgan Tiernan replied to Morgan Tiernan's topic in Dermatitis Herpetiformis5How to navigate living with dermatitis herpetiformis
Hey @Rogol72! thanks for your very helpful response. Those videos are great and super educating! I’ve forwarded them to my family members too as often it can be very difficult to explain to those around you just what you’re going through. Though, I’m fortunate that they’re super supportive and keen to help me get to the bottom of the problem. I...- coeliac
- dermatitis herpetiformis
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- Morgan Tiernan replied to Morgan Tiernan's topic in Dermatitis Herpetiformis5
How to navigate living with dermatitis herpetiformis
Hi Trents, thank you so much for your help and support. Yes it’s not ideal from my surgery practice. This is just one of the many problems I have experienced with them, we’ve had to pay to go to a private consultant now instead (I’m from South Wales in the UK, spot on about the spelling of “coeliac”! I completely forgot there was another way of sp...- coeliac
- dermatitis herpetiformis
- (and 1 more)
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- Lynnard replied to Lynnard's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Waiting on biopsy results but wanted opinion on bloodwork
Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease. I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have... -
- trents replied to Lynnard's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Waiting on biopsy results but wanted opinion on bloodwork
Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short.... -
- Lynnard replied to Lynnard's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5
Waiting on biopsy results but wanted opinion on bloodwork
Thank you! This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made. Or does it matter because presumably recommendation of gluten-free diet will...
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By Morgan Tiernan · Posted
Hey @Rogol72! thanks for your very helpful response. Those videos are great and super educating! I’ve forwarded them to my family members too as often it can be very difficult to explain to those around you just what you’re going through. Though, I’m fortunate that they’re super supportive and keen to help me get to the bottom of the problem. Interesting how you mentioned soaps and shower gels irritating too! Is it better to rinse off the sweat straight after exercising just with some cool water? Additionally, is minimising soap in those areas during showering helpful too? Or is there a particular soap that may be helpful! I have some more questions about dapsone too, if you don’t mind me asking. As mentioned in my response to Trents, I take prednisolone for when I am glutened or when my symptoms become too unbearable. With oral steroids it’s usually a 4 week dose as I have to reduce my dose to slowly come off them. How long can you take dapsone for? Can it impact your immune system in the same way as oral steroids (I have to be super careful I don’t pick up any infections whilst on my steroids as my immune system is compromised.) Yes, I’m from South Wales in the UK. Though my grandfather is Irish, explaining my surname (very well spotted!) -
By Morgan Tiernan · Posted
Hi Trents, thank you so much for your help and support. Yes it’s not ideal from my surgery practice. This is just one of the many problems I have experienced with them, we’ve had to pay to go to a private consultant now instead (I’m from South Wales in the UK, spot on about the spelling of “coeliac”! I completely forgot there was another way of spelling it around the world!) The dermatologist I have been seeing over the last few months has been amazing. And thank goodness for places like google and forums like these, I don’t think I would’ve ever thought it could be gluten! Interesting about the iodine. I’ll definitely start to limit this out of my diet. It makes sense as the places of irritation are places I sweat or pressure points (wrists, waist etc.) Dapsone was mentioned in my last appointment also. He’s reluctant to put me on it just yet, probably just until this biopsy is done so we can confirm for definite. At the moment I’m being put on prednisolone (oral steroids) every time I either become glutened or my symptoms reach an ultimate. I think he’s said if I need to be in them for any more than 3 times a year, dapsone will be more considered. I’m keen to go on it as every time I come off the prednisolone I can see the blisters creeping back. I’ve got loads that have burst on my hairline. I also start to get flaky/peeling skin as well which I’m not sure is related? As well as limiting iodine, is there anything else that might help irritation with sweat? Is it better to wear more loose fitted clothing? Can I apply something to stop the irritation of sweat whilst i’m exercising? Thanks for all your help so far! I will keep you all updated on my journey! -
Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease. I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way. I appreciate your information and advice!
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Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short. I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense? The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease. Yes, you are correct in stating that both conditions require a gluten free diet. So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not to have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.
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Thank you! This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made. Or does it matter because presumably recommendation of gluten-free diet will be the protocol??
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