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Is This DH? (large Pic)

jt321

By jt321
in Dermatitis Herpetiformis

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jt321 Newbie
jt321
Posted

46070364.webp

Little history...

- Had rash when a baby, doctor thought I had an egg allergy but later retracted this, no other rashes that I'm aware of until 11ish, I'm 22 now.

- Had stomach aches that started around 11, diagnosed with IBS

- Around 11 as well started getting "scalp acne", mainly the scalp blackhead/folliculitis/keratin plugs that a lot of people post about here

- Found out about Celiac a few years ago, I'm Irish and Scottish so I really thought I had it. Literally have every main symptom of this disease

- Got blood work done twice, negative

- Had endoscopy done, negative

- I've tried variations of a gluten-free diet because I lift weights, and every time I do I feel AWESOME, it's just so hard to stay on the diet. My skin clears up, no more diarrhea/stomach aches/and I just feel better.

- Had Enterolab test done that says I have gluten intolerance, "28" for the antigliadin in stool, and minor lactose intolerance, "11"

- Few weeks ago started tracking each food I eat again because I found out my sister has the same blackhead things I get, so I thought maybe I do have Celiac afterall (genetic)

- The only foods currently affecting me are Wendys Chili (sometimes), Wendy's croutons or Wendy's saltines

- If I eat just foods I KNOW are safe, I never get stomach aches and my skin looks perfect

- Here's where the problem comes in....

- I tested myself by adding some gluten back into my diet after being off of it for awhile (the wendys croutons and 4 saltine crackers, I ate them this morning)

- Within an hour or so of eating the croutons and crackers, I got itchy skin, bloated, then really foul smelling diarrhea that I usually get when I have a stomach ache that wasn't a lot of volume, it almost seemed like just the small amount of croutons and crackers i ate had come out

- I noticed the rash on my stomach was starting to get a little bigger after eating the crackers...so I figured hey that rash must be DH and I got diarrhea, I definitely have Celiac then right?

- Well, I wanted to confirm this for sure so I went to the store and boat a loaf of bread. I ate 6 pieces of bread and 2 hours and 30 minutes have gone by now and I haven't had a stomach ache yet? I haven't had any bowel movement at all yet. I'm not going to eat anything at all until my next bowel movement comes and MAKE SURE I don't have diarrhea. This is getting ridiculous for me. I don't even feel itchy or anything. Just a little bloated and distended stomach, but I've had that for years. (I'm 6' about 180 lbs and have always looked fat/bloated no matter how low my body fat was, lowest 10% or so)

- Is there any of you guys that sometimes eat wheat and don't get symptoms, but other times you eat it and do?

- The only other thing I can think of is trying the wendys saltines and croutons by themselves tomorrow when i wake up, and see if i get sick. maybe im intolerant to the sunflower oil/canola oil/soybean oil and not gluten after all?

- I'm attaching the picture of the thing on my stomach that looks like DH. It is directly over my rib and this "scarred area" has looked like this since I was 11. The little bumps just keep going away and coming back or staying there permanently small, and sometimes growing larger, then back smaller again. It's never been 100% gone since I've gotten it. Never had it biopsied, but had pimple-like thing biopsied on my neck that the dermatologist said wasn't DH.

- It looks somewhat like this, with bigger DH blisters around it: Open Original Shared Link

- Each of the little "spots" you see, is actually a keratin plug like in keratosis pilaris, i can sometimes pop the plug out, but it is extremely hard on this skin right on my stomach. i get them elsewhere (neck,chest,scalp,face) and i can pop them easier.

- All my skin issues mostly go away on a gluten-free diet, but I've never stayed on it longer than 2 weeks

- What do you think about the picture? DH or not?

- My mom/sisters have chronic migraines and my dad just got diagnosed with Parkinsons, I have his doc testing him for Celiac now incase he just has gluten ataxia (he gets stomach aches like me too, but never talks about them, he doesn't believe he has any issue with Celiac, even though he told me he use to get recurring carbuncles, I'm thinking they were just infected versions of the blackhead things I get now whenever I get "glutened"/whatever is causing my problems

- I'm probably going to get a pill cam done, i just don't have medical insurance so that's why i haven't done it yet

- My last gastroentologist said with me having diarrhea since I was 11, I either have Celiac or Crohns, but I didn't want to do the colonscopy since he said I had one or the other. He did the endoscopy and said I had no problems, but I don't think he looked everywhere he was supposed to, which is why I want to get the pill cam)

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RoseTapper Newbie
RoseTapper
Posted

The photo definitely looks like DH to me....and I might be able to shed some light on why you sometimes get DH when eating gluten and sometimes you don't. You see, you need to ingest BOTH gluten and iodine to produce DH. That's why it happens when you eat crackers (probably that contain iodized salt) and not when you eat bread.

You might consider reading Dr. Peter Green's book, "Celiac: The Hidden Epidemic." He includes this information about iodine. That's why a diagnosis of celiac escaped me for so many years--I didn't understand that BOTH elements are necessary to produce DH symptoms.

jt321 Newbie
jt321
Posted
  • Author

The photo definitely looks like DH to me....and I might be able to shed some light on why you sometimes get DH when eating gluten and sometimes you don't. You see, you need to ingest BOTH gluten and iodine to produce DH. That's why it happens when you eat crackers (probably that contain iodized salt) and not when you eat bread.

You might consider reading Dr. Peter Green's book, "Celiac: The Hidden Epidemic." He includes this information about iodine. That's why a diagnosis of celiac escaped me for so many years--I didn't understand that BOTH elements are necessary to produce DH symptoms.

Wow, can't believe I didn't know I had to eat iodine too. Well, I didn't eat gluten the rest of the day and tried to eat soy/canola oil/sunflower oil/gluten and I had no diarrhea like I usually do, and the spot on my stomach was mildly inflamed.

I woke up this morning and had my first bowel movement since eating the 5 pieces of bread, and it was soft, not exactly diarrhea, but it had a weird texture I'm not sure I've seen before.

I'm going to eat a lot of bread/iodine today and see what happens.

The spot from yesterday is definitely smaller now. It always seems like this though, which is how I know my diarrhea/skin problem is related to what I eat.

If I fast or end up starting work early and not eating for most of the day, I have no stomach issues, skin looks perfect, not irritable. It's like my life turns upside down when I eat, and the issues only go away when I stop eating/stop eating certain things, which really screws my life up.

lovegrov Collaborator
lovegrov
Posted

Looks a lot like DH. You can have a dermatologist look at it and biopsy it.

richard

jt321 Newbie
jt321
Posted
  • Author

All I had today was triscuits, not sure if the salt had iodine or not. Should I just get a thing of iodized salt from the store and eat it with bread or something?

Also, these 3 little bumps came up behind my knee (never them there before) on Monday, the day before I ate a little bit of gluten from Texas Roadhouse.

They kind of look like the DH on my stomach. One bump has a white head to it, and theres 2 other ones around it. It's very itchy, itchier than whatever is on my stomach.

img0328nv.webp

img0327w.webp

jt321 Newbie
jt321
Posted
  • Author

I think those last 2 pictures are some kind of insect bite, they look a little different.

Anyway, I had to pop the main sore on my stomach from the earlier pictures because I don't like having a white head just sitting there. It didn't look like the typical DH rash/contents. It was more like a stringy pus-like substance, with a keratin plug at the end. Exactly what I get in my scalp, on my neck, sometimes face.

Here is what the spot looks like now, I don't think it really looks like DH, but I am 100% positive this is caused by some food, and when I take gluten out it goes away.

img0330tl.webp

img0330tl.webp

From everything I've read I'm pretty sure it's called follicular keratosis/keratin plugs/keratin spicules/Lichen Spinulosus/Phrynoderma.

I've been told by doctors I have scalp folliculitis/scalp acne. No doctor has ever looked at my skin rash on my stomach, but it's the same type that I get on my scalp.

It says phrynoderma is caused by vitamin/mineral/essential fat defeciencies, when I take all my vitamins/zinc/copper/etc. and don't eat gluten they go away.

I'm thinking Celiac/gluten sensitivity causes the vitamin/mineral deficiencies (I've had labs that show low vitamins/copper/zinc/and low iron for a guy), and therefore causes follicular keratosis/phrynoderma. I think it should be associated with celiac disease along with DH, but I've only read about it in one book about celiac disease, never seen it mentioned anywhere on the internet.

jt321 Newbie
jt321
Posted
  • Author

Just found something new while looking up phrynoderma...

Prurigo nodularis is a differential diagnosis for phrynoderma, and I found some articles that say prurigo nodularis is caused by gluten sensitivity:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

My rash looks more like prurigo than DH I think.

Oh well, I'm just going to stop eating gluten and iodine for a month and see what happens.

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