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Plain And Simple, Do I Have Dh Or Not?

jesse

By jesse
in Dermatitis Herpetiformis

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jesse Newbie
jesse
Posted

Okay,

Since the summer of 2004 i have been on a gluten free diet strictly and have had what i would call success. what i'm asking everyone who reads this and replies is if if do have DH and most importantly am i a celiac.

before you read any more paragraphs, im warning you that i might be a little graphic w/ my description of what i believe to be DH. basically if you are not of the strong stomach then you might not want to read anymore.

okay, when i was young, 8-10, i got erosions on the skin on my legs typically. they were not itchy though were abnormal and not something that i was comfortable w/ as a kid so i showed them to my mom. she didnt know what they were either, and i never got them looked at by a doctor as they would come and go periodically. the average size of these erosions was about the size of half dollar coin, say and inch in diameter or so.

time went by and as i got into my teenage years i began to get acne. this wasnt bad until i got into high school by say tenth grade. by this point i would have widespread acne on my shoulders and upper back area plus chest. i wouldn't go swimming in gym or do anything outside that would put me in a position to take off my shirt. this got so bad that the acne was porous like and would bleed sometime errupting just by moving my shoulder the wrong way! pretty nasty i know... sorry. i also got a red rash on the upper part of my back in between the shoulder blades. it is still there till this day.

this continued well until after high school into my early 20's and was unrelenting. it was just on my back though, it encroached on my face to some lesser degree and occasionally on the top of my head in the hairline. on my scalp i was very itchy and began losing hair. i began using different hair shampoos to see if any would help which was like russian rouelette to be quite honest as some seemed to max out the damage and hair loss.

finally a break, on my way down to VA my sister gives me a call and tells me that she is diagnosed w/ as a celiac. i didnt understand what this meant until she explained it to me, so i made a stop at a cinnabon and decided it would be my last bit of bread for a week. i felt typical at the time then the next few days went by w/out much notice of a difference. by the time a week had passed my skin was a little better, that and i lost about 12 pounds!

i had decided to keep the diet for an indefinite period and searched out foods that i could eat, tinkering the diet to make sure there was no flaw in there w/ any kind of wheat in the products and they were either specifically "gluten free" marked or were products that i shouldnt have much worry in like ground beef or chicken.

now pushin 2 1/2 years later on a gluten free diet my skin has cleared up dramatically on my shoulders and upper back, though i still get facial acne plus some occasional acne there plus the chest too.

another thing, about a year ago i went and had blood work done to see if i am a celiac due to a bad case of stomach pains and diahrea to the point where it was completely liquid for a week or so. the tests came back negative which wasn't reassuring, though i've stuck w/ the diet.

about a month ago, i noticed some purplish dots on the tops of my toes, this concerned me immediately. i checked webmd and searched it out and one possibility it had was lupus. im still not certain of this, but am planning on having it checked out.

so now i leave it up to you for some constructive criticism, do i have DH or is what im describing something else?

please leave some comments if you have an opion on this i'd like to hear from as many people as possible on the topic. also if youre in the pittsburgh, pa area and can recommend a dermatologist i would appreciate it.

also, only the best to all of you out there reading this, or not, who are celiac's.

only the best,

Jesse

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wowzer Community Regular
wowzer
Posted

Jesse, If you have been gluten free for that long a blood test would come back negative. From all those symptoms you explained, it sounds like it could be DH. I had a negative blood test too. I really thought my symptoms fit DH. I finally went gluten free the beginning of this year. I have a little sister that was diagnosed at a year with celiac. I think the odds are like 20% if you have a sibling with celiac. I know when I googled for rashes and saw some of the DH pictures, they reminded me of some outbreaks I've had over the years. I know the more I've read on this site the more symptoms I have had over the years. I'm not sure how much this helps, but many on this site are self diagnosed for celiac.

RiceGuy Collaborator
RiceGuy
Posted

I've read comments from others who say a skin biopsy can be a pretty good test if done properly. I think the consensus is that the sample must be taken near a rash spot, but not on it.

I've read the DH rash commonly has a tiny peak in the center - like a little pimple, but more pointed.

I'm sure others will have better responses than I on this issue.

Oh, there is one other thing - iodine can make DH flair up. So for those who are trying to get relief, it may help to limit iodine consumption. Though the body does need it of course, so it's not advisable to try avoiding it altogether. Using non-iodized salt is a no-brainer (good quality sun-dried sea salt will have iodine). Kelp is LOADED with iodine.

  • 2 weeks later...
Classicalbook22 Newbie
Classicalbook22
Posted

You body can take a long time to heal, it took my small intestines over a year to go back to normal, that is with 17 years undiagnosed. It sounds like DH to me. Give your body some time to heal, but don't rule out going to the doctor's either. Keep a food journal. If you are eating "normal" food, perhaps they changed their ingredients and now contain gluten that you were not aware of. Make sure you are not cross contaminated by anything, shampoo, soap, loation, call companies! That's the only safe way to find out. Treseme (one of their shampoo's I'm not sure which) contains a wheat protein, a lot of salon products do as well, ask at your salon if you can read the labels on their shampoo. If I am cross contaminated blisters show up on my arms, they usually go away in a week or two, but it takes time, sometimes they show up a long time after I am contaminated, 3 or 4 days even.

Talk to a doctor, but keep up gluten free. DH is not fun, it never goes away, GOOD LUCK!

tarnalberry Community Regular
tarnalberry
Posted

the only way to know for sure is to get an accurate biopsy. :/

  • 5 weeks later...
jesse Newbie
jesse
Posted
  • Author

about a month ago i stopped eating iodized salt & almonds w/ salt on them plus using dial gel soap, and have had nite and day differences in DH i would typically have.

i recommend anyone w/ dh to give this diet a go as it might work for you.

thanx again for the tip riceguy....

what kind of shampoo would you guys recommend now?

lmk,

jdog

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