Where Are The Key Spots That Dh Appear? Are They The Same As Echema?

[hockeymomofceliacchild]

My six year old son has recentely been diagnosed with celiac. We kept thinking his rash was from other things over the year but I had an A-ha moment and insisted he be tested. My doctor was quite certain it was echema because he had no gastral issues to go along with the ichy rash. (later realizing bulky stools is a sign and many other symptoms that go along with celiac)

If my brother didnt have DH I would have so "Oh alright" and treated him for echema. His blood tests were positive with very high results and his scope showed up positive. My doctor was shocked at the results. I was going to cancel his dermatologist appointment since I figured he wouldn't have to have a bi-opsy to determine if it was celiac.

However, I figured the poor kid needed something to help out with the itch while his new diet kicked in. I was told today that his rash was echema and not from DH because it was not in the typical areas. He has it on and most affected on his elbows and buttocks. He also gets it periodically on back of knees and neck, ears, groin area and odd spots here and there. (key echema spots not DH)Does anyone else have Dh in these areas? or are they only on elbows, scalp, front of knees and torso?

I was also told (even though I told him my son scratches ALL the time and while he was sitting there scratching I might add) that he probably didnt have it because he wasnt scratched raw and could sleep at night. His arms are all scabbed up and he has a very high pain tolerance and very seldom complains as well. Can the itchyness from DH be mild?

If it is echema fine, at least we discovered his celiac problem at an early age and we can go gluten free and hopefully he will gain some weight and go to the bathroom pain free etc. and we will use all the expensive creams etc he suggested to rule echema out but I just wanted to see what others experienced.

The dermitologist did not want to do a biopsy to determine DH. Does it hurt? and was he right in saying the rash would never clear up because "No one can really go gluten free" (although my brother has and is off the medication he was given in the first year) I'm just baffled and didn't like this doctor weather he is correct or not.

My son has never eatin bread, hated pizza and his favorite foods were corn pops and rice krispies nothing else...hmm...I wonder if his body knew something we didn't. lol Only this year have I pushed wraps, pizza (with out the big crust) and we were putting bran buds in meatloaf and spagetti to add extra fibre to his diet. Shortly there after the rash appeared coincedence????

Any advise would be greatly appreciated, Heather

(My son is very happy there are gluten free coccoa Krispies and corn pops and can't understand why they hide gluten in things like Rice and corn which he knows he can eat. lol )

[cassP]

o...m....g..... SOME doctors really do have A$$-Backwards... Lord have mercy... yes, one can REALLY go completely gluten free... and YES DH CAN go away... but DH is a lot more stubborn than excema..

and u really can have DH ANYWHERE... i had it on my stomach & forearms... my GI was perplexed- because he said- "well noone ever has it on the stomach"... oh really??? it was smack dab superficial to my Small Intestine- seems like that would be the quickest route for some of those antibodies no??

anyways... people on here have have DH just about everywhere... scalp too... ive seen pics on the net on the buttocks...

good luck with treating your son... mine went away in about 4 months... i applied "Sovereign Silver" ointment- totally helped.. but my patch was pretty small. ive had a few eruptions on my forearms- but they disappear pretty quickly- (ive also been gluten free since July 2010.. so that helps).. i think when i have a few eruptions, its from gluten at <20ppm in "gluten free" snacks.

[running-girl]

Elbows, thighs, upper back, lower back, shoulders, butt, belly, neck, scalp, forearms, ankles and in my ears! I've been gluten free for 5 weeks and am finally getting some relief. The lesions are heeling quickly now.

I think your best bet is a new doctor!! Goodness gracious. What more evidence does he need?

The biopsy can be uncomfortable, but I wonder if it's necessary at this point.

Good Luck!

[eatmeat4good]

You are very smart for figuring this out.

And with NO help from the silly dermatologist.

You can get DH anywhere.

Mine is on my face.

This prevented diagnosis for a long time since it is not "the typical place for DH" Only after a really bad episode where I broke out on the elbow, tailbone, corners of mouth and inside the mouth...did I figure it out.

The buttocks IS typical...and so are the elbows.

You should trust your instincts. I hope his DH clears up on going gluten free. You may also need to avoid iodine for a while.

I am amazed by the response of your Dr.'s. I know I shouldn't be, but it never ceases to amaze me how unhelpful some Dr.'s are. Thank god your son has you!

[cassP]

You are very smart for figuring this out.

And with NO help from the silly dermatologist.

You can get DH anywhere.

Mine is on my face.

This prevented diagnosis for a long time since it is not "the typical place for DH" Only after a really bad episode where I broke out on the elbow, tailbone, corners of mouth and inside the mouth...did I figure it out.

The buttocks IS typical...and so are the elbows.

You should trust your instincts. I hope his DH clears up on going gluten free. You may also need to avoid iodine for a while.

I am amazed by the response of your Dr.'s. I know I shouldn't be, but it never ceases to amaze me how unhelpful some Dr.'s are. Thank god your son has you!

the DH on your face- is it itchy?? im asking for my bff. hers burn, but dont itch.. and we're not sure what they are...

[hockeymomofceliacchild]

Thank you everyone for your response, I am glad I followed my instinct and had him tested I told my husband it would be the only time I wanted to be wrong about something! lol

I had a feeling there would be other people out there with Non-typical areas with DH. We will still treat his areas like echema just in case but I will not be having a follow appointment with that particular dermitoligist.

Someone wrote they had it on the corner of mouth and funny my son has a spot there too. We are doing our best to go gluten free but at this stage I'm still learning about all the hidden ingredients and have a two year old who just yesterday scattered soda crackers all over the table and floor and missed her soup completely! lol Trying to teach my son as well not to sit down and eat in that kind of a mess either.

We are off to sick kids today to have my other children and my sisters children tested so I'd best get going. Thanks again and I am so glad to have found this site it is wonderful to have the support of so many people living with this everyday and I have read and learned from all the many questions on here.

[lovegrov]

Elbows and buttocks are NOT unusual places for DH. Very common. Corner of the mouth might be more like a cold or canker sore, which is also common with celiac. I had those for years and years -- until I went gluten-free.

Richard

[hnybny91]

The place I get DHH lesions the most is my upper arm. I also get quite a few between my knee and ankle. I get a lot on my upper chest too. Mine are also scattered and I don't have a lot clustered together.

[hockeymomofceliacchild]

I have to add- I was watching my son get undressed for hockey and what should I see but a rash on his lower back and shoulder blades....do you think the doctor will still think it is just echema? lol

[rosetapper23]

The vast majority of doctors and dermatologists know NOTHING about DH--and it's obvious they aren't bothering to learn either.

It appears that very little research has been done on DH, so the medical books are completely whacko with regard to where DH appears. When I first read that DH is never found on the face, hands, or soles of the feet, I nearly screamed out loud! Those are the ONLY places I get DH. My son gets DH in the same exact areas, but what's weird is that it's only symmetrical on our faces (identical lesions on both sides of the face), but I only get DH on my my right sole and left hand. My son, on the other hand, gets DH only on his LEFT sole and RIGHT hand. So....even the information on symmetry is not always true with DH.

[MommyMay]

I have a question I have not been diagosed but I have an appt to speak with my DR. about Celiac Disease because for over 5 years I been in & out of Dr.& Hospitals with unexplained and undiagnosed severe

-abdominal pain

-Constipation then sudden diarrhea

-weight loss without trying

-Fatigue

-bruise easy

-Irritable all the time

-NOW I have this rash that comes and goes in matter of minutes sometimes hours all over my neck,buttocks & leg's <--can this be Celiac?

I recently went to my Dr. about a month ago and complained of stomach pain back pain & itchy skin

She took a Preg. Test & urine sample

blood test came back not pregnant which I told her in the 1st place that it would be impossible for me to be

but the urine came back with a little blood in it -

She claimed I might have a UTI put me on meds ,I took the meds all my symptoms are still there itching get worst! the bumps come and go if I don't itch alot they go away quicker

CAN ANYONE HELP PLEASE!!!

[Dixiebell]

Welcome to the forum MommyMay.

With your symptoms it would be a good idea to get tested for celiac. Also while you are there, get your vitamin and mineral levels checked too. The easy brusing could be low iron, fatigue and irritability could be low B levels and/or low D. Being low in these is another symptom of celiac. UTI is also a symptom. Look up Dermatitis herpetiformis (DH) and see if that is what your bumps look like.

Tests for celiac:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA and IgG

Total IgA level

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG (This is a newer test that seems to be good.)

[MommyMay]

Thank You so much for all your help Dixiebell I really appreciate it

[eatmeat4good]

the DH on your face- is it itchy?? im asking for my bff. hers burn, but dont itch.. and we're not sure what they are...

Cass,

Sorry I missed this post until today.

To answer your question, there is no itching at all.

It is a stinging, burning sensation in the sores on my face.

As if thousands of hot needles are sticking me in each sore.

[canDarian]

I have a question I have not been diagosed but I have an appt to speak with my DR. about Celiac Disease because for over 5 years I been in & out of Dr.& Hospitals with unexplained and undiagnosed severe

-abdominal pain

-Constipation then sudden diarrhea

-weight loss without trying

-Fatigue

-bruise easy

-Irritable all the time

-NOW I have this rash that comes and goes in matter of minutes sometimes hours all over my neck,buttocks & leg's <--can this be Celiac?

I recently went to my Dr. about a month ago and complained of stomach pain back pain & itchy skin

She took a Preg. Test & urine sample

blood test came back not pregnant which I told her in the 1st place that it would be impossible for me to be

but the urine came back with a little blood in it -

She claimed I might have a UTI put me on meds ,I took the meds all my symptoms are still there itching get worst! the bumps come and go if I don't itch alot they go away quicker

CAN ANYONE HELP PLEASE!!!

I would ask your Doctor to run some Liver tests while your at it,I assume they ran a kidney test with the blood in the urine,if your still itching then try some Benedryl Allergy Liquid Gels. always keep these on me as I have severe reactions to even a minor amount of Gluten.

Diphenhydramine Hydrochloride is the same compound that hospitals give to patients having allergic reactions.I always have some on me just in case and gels relieve the itching in like 10 to 20 mins.