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What Does This Look Like And What Can Help?

boriquaabe718

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boriquaabe718 Rookie
boriquaabe718
Posted

Hey everyone, I was told by my doc I had an elevated sprue count so I've started gluten-free... I have what a previous doctor called eczema and wanted to see what others thought... excuse the pics... and it oozes and scabs but doesn't heal.../Users/stefanicourtois/Desktop/IMG_0467.webp... can somebody tell me if the link worked...thanks Abe

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Jestgar Rising Star
Jestgar
Posted

umm.. You can't post images in this forum...

skyyblues Newbie
skyyblues
Posted

I created an acct in flckr and then posted the link. I personally would like to see as I have horrible outbreaks of eczema and have gone gluten free. It has helped my other issues greatly but I am still having problems with my skin. Here are my pics.

Open Original Shared Link

It can take up to a year to clear the skin from everything I have learned in here. They are some very helpful and understanding folks. The last week I have come to know I am not a freak and there are people that understand what it is like. My family and friends mean well but they have no clue as to what it is like day to day....Case in point I had to go in on Mon as I was having a bad reaction to something. Doc gave me a choice of shot of kenalog and prednisone orally or admission to the hosp. I took the steroids - I HATE them.. :angry: I will admit that my blisters are gone on hands and the rest of me has faded pretty well - lots of spots on legs still - I have removed 97% of the damaged skin on my hands and am healing pretty well. This will only last until I get back off the prednisone then we can cycle alll over again. I am having trouble remembering what it is like to take a shower and enjoy it. Instead I cry from the pain, get out to dry and can feel the moisture being sucked from my skin. It is weird but you might understand.

I am sorry I started to ramble again. D--- steroids get me going... Well welcome and good luck getting the link set up. May your blisters be few and far between! B)

boriquaabe718 Rookie
boriquaabe718
Posted
  • Author

ok... i have a flikr account so now some of you may look at this rash and give me an opinion...

Open Original Shared Link thx, Abe

boriquaabe718 Rookie
boriquaabe718
Posted
  • Author
I created an acct in flckr and then posted the link. I personally would like to see as I have horrible outbreaks of eczema and have gone gluten free. It has helped my other issues greatly but I am still having problems with my skin. Here are my pics.

Open Original Shared Link

It can take up to a year to clear the skin from everything I have learned in here. They are some very helpful and understanding folks. The last week I have come to know I am not a freak and there are people that understand what it is like. My family and friends mean well but they have no clue as to what it is like day to day....Case in point I had to go in on Mon as I was having a bad reaction to something. Doc gave me a choice of shot of kenalog and prednisone orally or admission to the hosp. I took the steroids - I HATE them.. :angry: I will admit that my blisters are gone on hands and the rest of me has faded pretty well - lots of spots on legs still - I have removed 97% of the damaged skin on my hands and am healing pretty well. This will only last until I get back off the prednisone then we can cycle alll over again. I am having trouble remembering what it is like to take a shower and enjoy it. Instead I cry from the pain, get out to dry and can feel the moisture being sucked from my skin. It is weird but you might understand.

I am sorry I started to ramble again. D--- steroids get me going... Well welcome and good luck getting the link set up. May your blisters be few and far between! B)

one thing I would suggest is when you have it under control... try not to take any hot baths or hot showers... you need to let your bodies natural oils resurface on your skin. It sounds hard but use a wet warm rag to wash the other parts of your body that aren't irritated and need cleaning.... Good luck...abe

ravenwoodglass Mentor
ravenwoodglass
Posted
ok... i have a flikr account so now some of you may look at this rash and give me an opinion...

Open Original Shared Link thx, Abe

Has a dermatologist looked at that lesion? A derm can do a biopsy of the tissue next to the lesion and look for the antibodies that will be found with DH. DH is usually small blisters that can cluster and form a larger lesion but it is hard to tell from the photo if that is what that is.

lovegrov Collaborator
lovegrov
Posted

Becky's skin problems look nothing like my DH did. Abe's is a little closer but can't tell from that one photo.

richard

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boriquaabe718 Rookie
boriquaabe718
Posted
  • Author
Becky's skin problems look nothing like my DH did. Abe's is a little closer but can't tell from that one photo.

richard

hey, richard thanks for replying... sorry the pic isn't clear enough... this rash starts off from what is like an itchy pimple without the white, it oozes then scabs but never heals?? is that description similar to yours? I've been gluten free for about 2 weeks... does it take a while for the body to heal itself after going gluten free? and is there a detoxing or die-off? thx for looking `ABe

lovegrov Collaborator
lovegrov
Posted

My DH was essentially itchy blisters filled with clear fluid -- looking almost like a burn blister. Very difficult to heal after popping. Mostly on pressure points like knees, elbows, scalp.

My DH went away almost immediately, but that's unusual. Most people report that it can take up to 18 months. I took me about 10 months to return to what I considered a normal level of energy, though.

richard

BigDogz Explorer
BigDogz
Posted

I'm still awaiting a Celiac diagnosis, especially since my doc has been stonewalling on doing any tests. I've been reduced to going with the home testing route in order to get definitive answers. But, the more I read all of the posts on this forum, the more certain I am that I have celiac disease.

1.) I'm "inexplicably" B12 deficient.

2.) I have many of the symptoms, both intestinal and extra-intestinal, listed as possible with celiac disease.

3.) ALL of my symptoms went away when I went gluten-free for a month.

4.) ALL of the symptoms (and a few I hadn't recognized) came back within 12 hours of resuming a "regular", gluten diet.

5.) I had 48 hours of terrible abd. cramps with liquid, horribly foul-smelling diarrhea after resuming the gluten diet.

6.) I had mildly elevated thyroid antibodies but not enough that my doc would say I have Hashimoto's thyroiditis.

The other thing that I'm beginning to suspect is that I have a mild case of dermatitis herpetiformis. Several years ago, about the time my intestinal symptoms seemed to intensify, I started getting a mildly itchy rash on each butt cheek. I thought my dogs might have brought fleas into the house but it didn't make sense that the only place they would bite would be my butt. Also, treating the dogs, my home and all of the linens didn't help. I show horses and wear breeches, or riding pants, that are form fitting and stretchy much like baseball pants. I thought, possibly, the red, raised, slightly itchy and very painful when the tops got knocked off lesions were just "sweat pimples" or inflamed follicles from friction, although I couldn't understand why I would suddenly develop them after riding for 30 years and not getting any. Thinking about it now, I can remember getting some of these lesions that WERE really itchy on my ear. The only thing about mine is that they don't seem to get a well-defined blistered top like most of the photos show. Either way, the lesions are there when I'm eating wheat and they were gone when I wasn't so I'm pretty confident in saying they are DH. If my home celiac disease test comes back positive for celiac disease, I don't think I'll bother getting a biopsy with a dermo. If the results are negative or equivocal, I think I'll probably pursue the biopsy as I understand that having DH is confirmation of having celiac disease even if blood tests are negative.

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    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      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! 
    • trents
      Waiting on biopsy results but wanted opinion on bloodwork

      By trents · Posted

      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.
    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      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??  
    • trents
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      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
    • Rogol72
      How to navigate living with dermatitis herpetiformis

      By Rogol72 · Posted

      Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back positive for dermatitis herpetiformis. The important thing is to get a definitive diagnosis of dermatitis herpetiformis. What you've described sounds like classic dermatitis herpetiformis though. Hopefully, your Dermatologist has come across dermatitis herpetiformis before and performs the skin biopsy correctly as trents mentioned. I've had the blisters on the knees, hips, forearms/elbows or anywhere that pressure is applied to the skin ... from clothing or otherwise. They itch like nothing on earth, and yes salt from sweat or soaps/shower gels will irritate a lot. I've been on Dapsone and it is very very effective at eliminating the dermatitis herpetiformis itch, and improved my quality of life in the early stages of getting on top of dermatitis herpetiformis while I adjusted to the gluten-free diet. But it does have various side effects as trents said. It can effect the red blood cells, lowering hemoglobin and can cause anemia, and requires regular blood monitoring whilst on it. You would need to consider it carefully with your Dermatologist if you do have dermatitis herpetiformis. Here's a very informative webinar from Coeliac Canada discussing everything dermatitis herpetiformis related.  https://www.youtube.com/watch?v=PAdmsNiyfOw I've also found this recent interview with a Dermatologist about dermatitis herpetiformis to be educational.  https://www.youtube.com/watch?v=rZnLeKutgUY Keep the chin up and keep advocating for yourself for a proper diagnosis. Though it sounds like you're on top of that already. Are you in the UK or Ireland? I'm curious because your surname is Irish. 
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