Pictures: Take A Look

[NoGluGirl]

Dear missy'smom,

It is very likely that is what this really is. I am going to ask my doctor for some Dapazone next time. I cannot really put in on my scalp, but can elsewhere. My face, back, and neck particularly of a concern. Thank you for the picture information!

Sincerely,

NoGluGirl

[LoriC]

Dear missy'smom,

It is very likely that is what this really is. I am going to ask my doctor for some Dapazone next time. I cannot really put in on my scalp, but can elsewhere. My face, back, and neck particularly of a concern. Thank you for the picture information!

Sincerely,

NoGluGirl

I was just recently diagnosed with DH in August of this year. but I had my rash for about a year. it started on my stomach, pubic area, back of my neck, head, inside my arms, sheens of my legs, and lower back, Never on my face or hands. I have scars on my sheens and lower back. i'm on dapsone 100 mg a day and a gluten-free diet. My rash is pretty much gone, it bothers me a little on my lower back, but the pimples themselves are gone. mine starts out as maybe 1 or 2 red itchy pimples, will stay like that for a few days, then it mushrooms into more red itchy pimples. the pics i saw in the beginning of this post, look just like mine do when they first start.

[NoGluGirl]

Dear LoriC,

Thank you for sharing! It makes me feel better knowing other people have similar skin issues. Maybe this horrible nuisance will finally go away! I am quite bothered by it. I did not know Dapazone was orally taken. I thought it was a topical ointment.

Sincerely,

NoGluGirl

[penelew]

I didn't read all the replys but my DH started on my fingers and then moved to where they are "supposed to be" >> atleast where the doc said they are supposed to be >> elbows, knees, buttocks.

Mine are blister type, often in a cluster and itchy until broken and then burning.

Don't know if this helps anyone but I thot I'd add it !

( by the way, I got the DH BEFORE full blown celiac disease; anyone else ??)

[NoGluGirl]

Dear penelew,

I actually got one of those pimple-like things on my stomach after being glutened. Now I know it has to be DH on my face, back, and neck! The burning is awful. You just scratch until they bleed! Even after they have scabbed over, they are bothersome.

Sincerely,

NoGluGirl

[Guest Maggi315]

Updating this thread::::

Well, my doctor agreed to do a blood test for celiac because of the rash, she wasn't convinced, but my oldest daughter came back with slightly high results on one of hers, so she agreed.

They called this morning, hers is high!!! They did not do a tTg,not sure why, guess I won't push for it, since her anti-gliadin was high, normal is below 17 and hers was 52!

Plus her IGA level was 63, that's low, what does that mean? The nurse that called the results in didn't really know anything about what the IGA level meant? I'm going to post this up on the other forum for newly diagnosed too.

Now, for the fun part, I need to get all the other kids tested, I am fairly certain at least 2 others will be positive, maybe all 3 (I have 5 kids total). My blood tests were negative, but I am having a horrible time healthwise and will go on the gluten free diet with them and will drag my husband in and get his blood drawn too, that will be a battle because his diet is horrible.

So, my guess is her rash is indeed DH, the nurse said we should call a GI, they would refer us and get a biopsy and also see a dermatologist, but frankly, I don't see the point of putting an 8yo who is already deathly afraid of doctors and needles through all that when we got a positive blood result? Am I missing something?

thanks,I will cross post this so you might see it again!

[YoloGx]

maggie, i think the biopsy route is the best way to go---especially if you have a child that is not eager to be compliant without a "real" diagnosis. i was under the impression that true DH can take a while to heal up even after going gluten free----so i don't think a 3 or 4 week trial would give you a clear answer. that being said, i THINK that one of my twins has DH. she had rashes in the classic places---elbows, knees and buttocks. this is what clued us in to test for celiac in the first place. we never did a biopsy on the rashes----her blood work was positive. her rashes cleared up after we got her gluten free and they came back while she was in the hospital and they were not keeping her gluten free. i kind of thought it might not be DH because it cleared up faster than i would have expected-----but she has been left with a lot of scars from it. i have heard that DH can leave scars. i have atopic dermatitis and my skin can get looking awful at times----but it does not leave scars.

Hi Maggie and All,

Its really hard to convince some people that celiac is serious. I really sympathize with you since I have had to deal with some similar problems in my family. Its almost like some of them would rather live with their ailments. They think celiac is overblown and not actually serious. They would rather fit in than be seen as possibly different and thus neurotic than have better health.

My aged mother for instance was diagosed with celiac 15 years ago but for the most part she ignored it despite eye problems (glaucoma) and some nagging memory difficulties, recurrent colds and weak kidneys.

As a child she was on a no carb diet due to constipation and low thyroid--and then went off it when she stopped getting constipation from grains. However even as a middle aged person she had short term memory problems and a grumpy personality which she took out on everyone. She also had eye problems and various eye operations etc. as well as recurring kidney problems, hypoglycemia and occasional joint problems. Overall however she is a strong person and has done relatively well, not having the common major health problems many people have.

Now at 92 she has what looks like itchy DH as well as increasingly severe short term memory problems despite not having Alzheimers. I have noticed she gets better when on a gluten free diet--both her skin and her memory improves markedly. The DH reappears when she eats the gluten.

It was still hard to convince her however I slowly seem to be getting through to her. I say what harm trying it out? Its worth the experiment. I also tell her I have had many of the same symptoms--which went away through change of diet. Including DH, mental lapses and confusion as well as weak kidneys, frequent colds and flu etc. Which she knows is true.

I now live in an apartment under her house -- so I am in a good situation where I can help her with this. I am on the gluten free diet--so it makes it easier. I now no longer give her a choice. I also am starting to take her out on walks with me. I joke, saying "We're in the Army now!" and explain she will feel better soon. She is together enough fortunately to realize what I say is likely to be true. It also helps for my brother with Down's Syndrome who lives here. He also has been diagnosed with Celiac years ago. By changing our diet his skin too is looking so much better despite his going off diet at workshop. (I have yet to address this last issu! )

At family gatherings however some family members belittle the condition. They say "what harm can it do? to eat a piece of pie (made with wheat etc.)--its Christmas after all!" and then my mother says how "bad" (i.e. implication--strict/neurotic) I am etc. Despite my having made non-gluten pie and cake etc.

However slowly I am making converts. I pray that more family members will finally get it.

My eldest sister for instance is way improved now. Her joints are finally mostly healed (this was a big issue for her--she had been misdiagnosed as having fibromyalgia--and now she can do hard physical work on her lemon farm). Plus, like me, she no longer gets sick. She however is belittled by her children. They think she is neurotic. Amazingly it seems like they don't want to see how much she has improved.

For myself I mostly followed an anti gluten diet for many years (and thus mostly got rid of the horrible DH all over my scalp, chest and back and buttocks--even though I didn't know that it had a name!) but did not realize until recently from my eldest sister's example that I really needed to be even more strict with my diet. It has made a huge difference! I can now swim without getting headaches and can do my sculpture again whereas I couldn't before without suffering greatly from headaches and painful joints etc. etc. I still have to be somewhat careful however I seem to be getting stronger and stronger with each passing month. Even my heart no longer races at night and my legs and feet no longer burn unless I happen to be inadvertantly exposed to gluten. I also take vitamin D and co-enzyme B vitamins which has also been crucial.

Celiac and similar dietary problems seem to be endemic for many of my family members, including children with migraines and autistic symptoms and constant colds, flu etc.--much as what happened to me as a child. Its hard to see this and say nothing. Now I try to say what happened to me and how much better I feel. What else can one do? Its obvious that its true since I was famously sick all the time since I was an infant--whereas now its winter and I haven't even had a sniffle despite everyone else getting the usual flus and bronchitis etc.

The good news is that my other sister bought a non gluten turkey and did not use dressing in it this time so my mother and I could safely eat Christmas dinner with them. This is a first. This is big news since she is a nurse and up until recently said that she "doesn't practice that kind of medicine!" -- meaning using natural healing methods such as diet. She was always bringing loaves of French bread for our mother to eat and sneaking her regular cookies etc. until I had a few showdowns with her.

So even though you want to give up on family members with celiac, please don't. Gradually you will get through. My best advice is to be persistent and maintain a sense of humor despite at times that seeming to be just impossible.

Yolo