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KJEANNE's Photo KJEANNE SparkPoints: (39,576)
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11/20/07 10:39 A

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Hi JOYFULCANARY:
I was also diagnosed with DH, but that was over 35 years ago! I also have major problem with constipation. So once I started the GF diet, I could see and feel the results: mainly with the constipation. When I am GF, the bowel movements are fast and easy not dry and hard. The lesions did go away after a short time on the GF diet. They have never returned.

Dot brings up a good point: everyone reacts in a different way. The longer you are on the GF diet; your body will begin to feel normal as it heals. Once I got to that point I could tell right away if I had gluten. For me the first symptoms are gas and abdominal bloating. Then depending on how much gluten I has, constipation, herpes breakout, aches in my major joints, muscle soreness, hot flashes, etc.


Do not look where you fell, but where you slipped.
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JOYFULCANARY's Photo JOYFULCANARY Posts: 52
11/19/07 2:24 P

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Thanks, Walksfar! I did get sick last night from eating something, so maybe my body can tell me - I just didn't notice it in the past.

 
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WALKSFAR's Photo WALKSFAR SparkPoints: (69,203)
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11/19/07 1:40 P

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Hi everyone, I'm here.

I took Dapsone way back in the 80s. I checked it out for side effects and didn't like what I read. My doctor never told me that I could control the blisters just by changing my eating habits. I found it out on my own. I wouldn't take Dapsone for any amount of money!

When I ingest gluten it take anywhere for 1 to 2 weeks for me to get blisters. Used to be, I'd lose track of what I'd eaten so I wouldn't know what caused it. Since I've been tracking my food here on Sparkpeople, I can go back and look for foods that might be the culprit. Usually it is somthing hidden... unspecified "food starch" gets me now and again.

Eveline

Being a Christian isn't about religion. It's about a relationship with the One who made us. I'm so thankful to be one of His.

I can do all things through Christ who strengthens me. Philippians 4:13

Do not ask the Lord to guide your footstep, unless you are willing to move your feet.

God grant me the serenity to accept those I cannot change, to change the one I can,
and the wisdom to know itís me.


books.txtriker.org


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DOTSLADY's Photo DOTSLADY Posts: 10,021
11/19/07 11:53 A

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From what I've heard at our local celiac support meetings, the dapsone really helps, esp at first. I think as the diet works it's magic, you gradually stop using the dapsone. You might use it for 9-12 months - not sure. I don't have DH. (For all intents and purposes, DH is CD. I think what you're trying to say is that your symptoms are not "stereotypical" GI-related?) Me either. Mine are neurological, though I had SOME gastro. I have been gf for 20 months and still don't know if I've been glutened because I don't react as easily as others. I'm thinking I might get brain fog, but that's it.

Sometimes, I *kinda* think I should take a piece of bread and just eat it to see what happens. Then I get ahold of myself, knock myself around a bit, and say, 'What are you THINKING!' emoticon It's totally not worth rehealing after all my conscientiousness. (+ I've read where some people after having gone gf, eat gluten without problems for months - then they have their reaction. Guess it depends how long it takes to damage the immune system.)

Walksfar, who hasn't been on for a long time, has DH. She, if I remember correctly, reacts to gluten with blisters, but I'm unsure how long it takes to get the reaction. Maybe private msg (PM) her and see if she's around to help. Ask her if she's off dapsone too, etc.

Unfortunately, all of us react differently and you have to keep that in mind.

I hope someone else with DH can offer you some better ideas.

KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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JOYFULCANARY's Photo JOYFULCANARY Posts: 52
11/18/07 4:06 P

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My dermatologist put me on a gf diet and Dapsone. I've read some pretty scary stuff about it, and was wondering if anyone else has/is taking it?

Also, I have DH, but not CD, so it is hard for me to tell if I have eaten something with gluten in it. The only time I got sick from eating gluten-containing food was a week or so ago after I ate the Zaxby's Club basket (before being diagnosed). How can I tell if I am eating gluten? My skin doesn't react immediately, so it's really hard to tell.

Edited by: JOYFULCANARY at: 11/18/2007 (20:51)
 
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DOTSLADY's Photo DOTSLADY Posts: 10,021
3/14/07 4:38 P

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That's funny, cause I used to put my meat in my pants seam and flush it when mom/dad wasn't looking! I gagged when I'd eat eggs, so they were out too (just had testing and I'm allergic to yolk - but eggs in a cake or bread is okay?!) And really, I didn't care much for cake ... but LOVED European breads (and ate them even with indigestion).

When Atkins diet came around I never looked at it cause I knew I couldn't do it - to think it might have made me feel better, too! I will eat ground beef, chicken and turkey. No soy for me either as soy affects thyroid hormones and I have hypothyroidism. (Or does it affect absorption of thyroid meds? can't remember cause of my thyroid? lol)

KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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KJEANNE's Photo KJEANNE SparkPoints: (39,576)
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3/14/07 2:20 P

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My daughter has been a vegetarian since birth! She has never liked meat. She always ate her veggies, fruit, beans, and grains but just played with her meat. In her teens she declared that she was a vegetarian. My husband and I just laughed and said we already knew that. Every now and then sheíll have some meat (usually chicken) and then get sick. So for her, being a vegetarian is just giving her body what it wants/needs. And yes, she is very bright!

I am the other end of the spectrum. I love meat! Beef! Yum! Turkey! Yum! Lamb! Yum! Fish! Yum! Chicken Ė yuck!

Do not look where you fell, but where you slipped.
African proverb


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DOTSLADY's Photo DOTSLADY Posts: 10,021
3/14/07 1:21 P

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KJeanne - I went over there initially to let them all know that IBS was a symptom for celiac - only to learn that my lifelong constipation *was* IBS - I'd NEVER known!

I hope you continue with your gluten free journey. I guess you know that there's an increased risk of GI cancers and non-Hodgkin's with untreated celiac (and DH is considered celiac). You're lucky to have such a daughter - and I hope she's been tested for celiac too! Vegetarians, in my estimation, often are trying to "fix" something inherintly wrong with themselves via diet - except it's the gluten that is causing the problems. I only speak from my experience though (I was not an animal rights activist with my choice). She sounds bright.

KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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KJEANNE's Photo KJEANNE SparkPoints: (39,576)
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3/14/07 10:39 A

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Sure DOTSLADY, feel free to post my reply. Teel me more about the IBS Forum. This is the start of day-three gluten free. My 21 yo daughter is very happy about my choice and is my biggest cheerleader. She is a very healthy vegetarian who listens to her body when making decisions about what to eat. She would like to see me do the same.

BTW I have tried going gluten free about 2 months ago and was successful for about 2 weeks. When I started eating gluten, I noticed some subtle changes in my body: fatigue, less alert, and an outbreak of herpes! My body was sure telling me something, but I didnít want to listen at that time.



Do not look where you fell, but where you slipped.
African proverb


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DOTSLADY's Photo DOTSLADY Posts: 10,021
3/13/07 4:23 P

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You have a great story KJeanne! The pregnancy thing I've NEVER read anything like it the whole year I've been immersed in reading about celiac.

When I low-carb it, I do much better in losing weight. My body's been telling me for years to do that, but I kept listening to the USDA food pyramid and eating as much fiber as I could (this was pre-celiac dx)! UGH! I keep saying I'm going to do sugar free, too, but I'm weaker than I thought. lol

Do you mind if I copy and paste your reply to the IBS forum? I'm thinking this may be of interest to them on some level.

Edited by: DOTSLADY at: 3/13/2007 (16:24)
KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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KJEANNE's Photo KJEANNE SparkPoints: (39,576)
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3/13/07 4:08 P

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I was diagnosed with DH at 20 after my doctor took a biopsy of a lesion. She put me on a sulfa medication that made me very ill then put me on a gluten-free diet. The lesions healed but the best part about the Gluten-free diet was I was no longer constipated!! I used to take a book with me to the bathroom because I knew I would be in there for minimum 20 minutes to have a BM. After 3 days on the gluten-free diet I had a 20 second BH!!! WOW! What motivation to stay on the diet. That was 30+ years ago. There werenít many Gluten-free products on the market and many were awful.

After delivering my second child at 33 years of age, the DH went away! I could eat gluten. But I found my weight climbing slowly. At 53 I decided that enough is enough: it was time to lose this weight! I have been eating within my calorie range for several months and have not lost any weight. I have decided that the gluten in my diet might be the culprit. So Iím going gluten-free again. This is my second day and Iím doing good.


Do not look where you fell, but where you slipped.
African proverb


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BEIGE.BABY's Photo BEIGE.BABY SparkPoints: (0)
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2/26/07 11:31 A

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I saw a dermatoligist in my early 20's and he didn't seem to impressed. Zapped off a perscription for acne medicine which didn't really do much. I figured I had particularly resistant acne and tried to live with it (tried proactiv and drug store stuff). It wasn't until I quit gluten and it miraclously cleared up that I thought maybe the dermatoligist didn't look closely enough. Or maybe I didn't ask the right questions, say the right things. Whatever.

"It's not that some people have willpower and some don't. It's that some people are ready to change and others are not."
James Gordon, M.D.

I'm working on being ready!


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PSYCHMD SparkPoints: (0)
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2/25/07 9:55 P

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maybe you have a combination of DH and something else;
but always go to a dermatologist for skin lesions;
a friend of mine suffered with a skin disease for a
year until some fiends convinced her to spend the money
and go to a dermatologist - her face cleared up in
3 weeks ;

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2/25/07 9:49 P

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have you been to a dermatologist? DH lesions usually
erupt on the hard surfaces of the skin; maybe you have a secondary infestion from scratching;

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2/25/07 9:47 P

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i think the type and how many DH lesions erupt may depend on your age ie whether you are under 30 or over 30; now that I have not knowingly veered off the gluten free diet for at least 27 years my skin is
still supersensitive to make up and chemical in makeup
and in the air but its not itchy it looks like an
allergy ;

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2/25/07 9:41 P

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I was diagnosed with ceoliac at age 13 and DH at age 30
I read in a medical book a long time ago that DH ususally doesn't show up untill the third decade of life; mine starting slowing showing up every time I
veered off the diet - at 25 small very itchy bumps
on my elbows and spine ; but they went away when
I returned to the diet ; at thirty three I again challenged
medical science and started eating pancakes and
doughnuts - and this time very itchy bumps broke out
on all the hard surfaces spine chin forehead elbows
and I scratched and scratched for 6 months I couldn't sleep and was too embarressed to go to a
doctor - eventually I diagnosed myself with scabies
and went to a dermatologist at Kaiser . The first
thing he said when I entered his office - if you have celiac than you have DH; he gave me RX and
in 6 hours 50% of the itching had disappeared; I gave myself 5 itch free years before I tried it twice more and finally had two biopsies which proved to me that a doctor a long time
ago knew what he was talking about when he put me on a gluten free diet; hope this helps ; to see what it
looks like type in dermatitesherpetiformes into google or vist the medical section of Barnes and Noble and ask for a book on dermatology;

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2/24/07 9:20 P

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OK... Since I was a teenager i had what I thought was body acne and acne on my face. Since I've been gluten free my skin has really cleared up. Then I found out acne doesn't itch. I was like "really, mine itches like crazy especially at first." So combine the fact that it itched, didn't respond well to acne medication, and it cleared up after I became gluten-free and i thought it might be DH but no blisters. what do you think? DH? Did anyone else have aproblem with acne before they were diagnosed or quit gluten?

My skin is clear and I'm off gluten so it's not really a pressing question. I just find it facinating that so many things that were wrong with me, and seemed totally unrelated, were caused by this gluten intolerance.

Edited by: BEIGE.BABY at: 2/24/2007 (21:21)
"It's not that some people have willpower and some don't. It's that some people are ready to change and others are not."
James Gordon, M.D.

I'm working on being ready!


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WALKSFAR's Photo WALKSFAR SparkPoints: (69,203)
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1/22/07 8:47 P

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No itch for me without a rash. If you have ever had a fever blister, the rash feels the same. I get a burning sensation right before a water filled blister appears. The skin around the water blister itches like crazy.

Edited by: WALKSFAR at: 1/22/2007 (20:47)
Being a Christian isn't about religion. It's about a relationship with the One who made us. I'm so thankful to be one of His.

I can do all things through Christ who strengthens me. Philippians 4:13

Do not ask the Lord to guide your footstep, unless you are willing to move your feet.

God grant me the serenity to accept those I cannot change, to change the one I can,
and the wisdom to know itís me.


books.txtriker.org


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TWEETY4_9's Photo TWEETY4_9 Posts: 32
1/22/07 8:04 P

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Nanakatie - It was winter, but I had never experienced anything like that. It didn't matter what I tried, nothing relieved. It was 1 month after going GF that I notice it was gone when my friend mentioned reading about DH. I thought it was strange but everyone that talks about DH mentions a rash but I never had one.

Just curious... emoticon

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1/22/07 7:57 P

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I have actually had a body-wide itch like that -- and it was from a high-niacin vitamin that I was taking. The other thing is that maybe your skin is dry....even if it doesn't look dry and flakey, sometimes it can be itchy, especially in winter. Did the change in your diet help the itch go away? It is a sort of allergy to wheat....so maybe that caused the itch.

TWEETY4_9's Photo TWEETY4_9 Posts: 32
1/22/07 6:17 P

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I am new to Celiac and I have a question regarding DH. Before I found out about the Celiac I itched severly for 2 or 3 months ALL over, nothing would relieve the itching. I never had a rash though. Does anyone else have this experience?

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1/11/07 11:13 P

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You all can't imagine how wonderful it is to have advice and suggestions. Not knowing what this rash was, I have been through endless treatments that didn't work, years of sleepless nights from the itch, embarrassment at the rash, and general misery. Like Eveline, I have no problem changing my diet to avoid gluten if it means alleviating this burden! Thank you so much!

WALKSFAR's Photo WALKSFAR SparkPoints: (69,203)
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1/11/07 10:37 P

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I was diagnosed with DH in 1987. The doctor did a biopsy of a blister and gave me the diagnosis. He then put me on medication (that can kill you if you take it for any length of time) and did not EVER mention changing my diet. I did the research on my own and went Gluten Free. When I sent him a letter asking him why he prescribed this life threatening medication instead of telling me to change my diet, he replied that a GF diet was too hard to follow.

Not for me it's not! Not when the choice is taking an expensive prescription drug that kills the liver!

Anyway, the rash. In my case, I first break out on the elbows and kneecaps. If I've been really bad it goes to the stomach and thighs. Once I get my diet straight again, it disappears in about two weeks. The knees and elbows are always the last to heal.

Best of luck with going GF.
Eveline

Being a Christian isn't about religion. It's about a relationship with the One who made us. I'm so thankful to be one of His.

I can do all things through Christ who strengthens me. Philippians 4:13

Do not ask the Lord to guide your footstep, unless you are willing to move your feet.

God grant me the serenity to accept those I cannot change, to change the one I can,
and the wisdom to know itís me.


books.txtriker.org


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MARTIEROSE Posts: 101
1/11/07 4:46 P

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Hi! I do not have the DH, but I go to a celiac support group and there are many who do have that condition, which is totally controlled by GF diet.
I pray that you find relief after all the suffering you have endured. God bless you!

Martie

With God, nothing is impossible!


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1/11/07 2:50 P

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Thank you so much! You have no idea how I have agonized with this for literally years!!! I've been told "Oh, you just have a yeast infection"...or "it's just some kind of dermatitis and it will go away"...or "you just have dry skin". I've been tested for herpes and lupus and scabies...
no one ever even brought up Celiac's. As of yesterday, I am going gluten-free. Doing all the research now. Thanks for the tips on remedies for the itching. I've been using benadryl gel, but not sure how good that has been for my body over the long term.
Thanks again.
Katie

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1/11/07 2:37 P

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Also! Cetaphil soap and lotion for dry skin has helped the itching...especially when it gets to the drying stage.

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1/11/07 2:35 P

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Hi Katie,
I have DH. Like you it "travels" usually starting around my bellybutton and spreads across my stomach to my sides. Also on my ankles, elbows and scalp. The itching is ferocious!!

Only cure is to go Gluten Free. My doc gave me some cream (Clobetasol? sp?) that is a steroid to quell it down, but I don't find it works very well.

I read on a UK website that a product called Zims Crack Cream for dry skin works for the itching, and i must say i have found the greatest relief with that than anything else when it's driving me crazy.

Anyway, probably finding out if you are a Celiac would be the answer to your rash problems. Good luck, it can be very frustrating!
Denise

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1/11/07 12:33 P

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Hi, I'm Katie. A friend from the Fibromyalgia forum recommended that I ask some of you about DH symptoms. I have Fibromyalgia, and associated autoimmune problems, and for about 10 years I've also had a recurring rash that has stumped the FNP who does my health care. It fits most of the description of DH that I've been able to find online. The one really unique thing about this rash, though, is that it "travels" symmetrically around my body. It leaves a path of hard, rough skin (maybe from scratching, although I try not to do that). It usually presents on the back of my legs, and then travels up my body, wreaking havoc, until it ends on my back. Then the whole process usually starts over again. I haven't had it on the fronts of my knees or on my hands; but it's been on my forearms, and is sort of omnipresent on my behind and oddly, my scalp.
I guess my question is this: do any of you have DH? What are your experiences with it? I just discovered information on CD and am thinking I need to find a new doctor who is a little more informed on these diseases. In the meantime, I would appreciate any advice.
Thank you so much.
Katie

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