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Possible Coeliac And Dh?
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4 posts in this topic

Hello everyone, I'm new here so please be kind :)

 

Anyways, I have had an extremely itchy rash on my leg for around two years.  Small white bumps which I've scratched until they've bled and then crusted over, and scratched all over again...you get the picture I'm sure!

I went back and forth to the Dr who prescribed emollient creams, steroid creams and moisturisers which didn't help at all.  I kind of just resigned myself to having this rash on my leg and got on with life.

 

A couple of weeks ago the same rash appeared on my right forearm.  Very itchy small white bumps and not particularly dry skin either.  In  the past few days the same has appeared on my left forearm. 

 

I googled the rash and it looks pretty much like DH. The symptoms of coeliac ring true with me also.  Ever since I was a child I have suffered from chronic constipation.  Numerous doctors appointment, special diets which included fibre drinks and actually sprinkling fibre on every meal and even operations the cause of my constipation was never resolved so again, I resigned myself to thinking this was just something I had to deal with.  When I was around 16 I started getting pains in my bones and joints, so much so I almost had to repeat a year of school as I struggled to walk.  A doctor diagnosed me with growing pains.  These pains are still kind of there and some days they are better and sometimes they disappear for months and then sometimes it's painful for a good while.  I suffer from migraines, and have cut out my supposed triggers but still get them now and again.  I've had several bouts of severe depression but am now off all tablets.  I feel tired all the time and could literally sleep at the drop of a hat!

 

recently in the past year I have had diarrhea maybe once  month which is unusual for me but I thought maybe it was just my constipation getting better.   Does think sound at all like coeliac and DH?

 

I went to the Dr today and explained all this and she seemed dubious but agreed to get a blood test for coeliac.  She also prescribed steroid cream and moisturiser.  From what I read, and I may be totally wrong with this but could the blood test come back negative but I still could be gluten intolerant?  I've not changed my diet at all so have been eating normally as I understand you have to do this before you get tested.

 

I;m so sorry for rambling, feeling a bit confused!  I asked to be referred to a dermatologist but the Dr said she wanted to take the itch out of the rash first.  The steroid creams I've had in the past haven't worked and I'm presuming that because I'm still eating gluten I will be effectively "feeding the itch".

 

Anyway, thanks you so much for reading and any advice would be gratefully received. :)

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Hi Scotty, I have also had a rash for almost an year and came to this forum with the thought that I had celiac disease.  Its a long story of how I finally got help (4 or 5 doctors 2 dermatologists and 2 hospital visits, tons of steroid cream anti histamines blood tests skin biopsies etc) but in the end it has been a naturopath who pinpointed what I have. She did specific blood test to check the foods that I am sensitive to and since cutting them out I am seeing a huge improvement.  Gluten is an issue for me but it is a newly acquired intolerance due to a leaky gut syndrome caused by eating foods that I have always been allergic to.  It turns out that I have a lifelong intolerance to all things bovine....beef, milk (all dairy) lamb products and goat products.  I have eaten beef dairy and lamb all my life but my body finally had given up fighting it and now I have intolerances to grains, legumes, some fruits, nuts, eggs, sugar, honey, yeast, etc etc.  I have cut out most of these foods and have eaten very limited amounts of a couple of them....(very hard to not eat some stuff as I am allergic to almost everything :unsure:) and my rash is clearing up.  It was all over me but started on my arms and legs.  It spread to my hips, bum stomach, back....basically it was everywhere except my head feet and hands.  I now only have it on my shins and most of the sores are almost healed there.  I have scars which I hope will fade with time but thank goodness the itch is almost all gone!  Consider seeking help from a naturopath it has been the answer for me!

Good luck!

 

Elaine

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Elaine,

 

Thank you so much for your post.  It sometimes feels a little like I'm on my own as I don't know anyone with celiac or DH and when I tried to explain to the Dr she looked at me like a I was mad!

 

I'm so sorry that you had such a long time getting diagnosed.  I'm due to get a blood test tomorrow and the results will be around a week.  If it comes back negative I really want to get a biopsy of this rash, which has now spread a fair bit and is now on both my forearms and both my elbows as well as my leg.  I think it may be starting on my face as well as it feels hot and itchy.  Trying not to itch though but easier said than done!

 

Thanks for suggesting a naturopath, I would have never thought of that.  I think that if my bloods come back negative and the Dr isn't keen to refer me to a dermatologist then that is the route I'll go down. 

 

The past week or so after I've eaten (maybe half an hour to an hour) I've had a very sore stomach, almost like trapped wind or period pain quite low down in my stomach.  Does anyone else get this? 

 

As I said, I don't know anyone with celiac so this forum seems to be my only was of communicating with others who know what it feels like.  Just want to say thank you :)

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Hi Scottishvoice and Welcome to the Forum.

 

A couple things.  People with DH typically don't test positive for the blood tests.  The antibodies are in the skin opposed to the blood.  Also, I think the use of steroids will give a negative on a skin biopsy.  Oral steroids must be stopped prior to biopsy.  Since DH IS a Celiac Diagnosis, having NCGI would mean that the rash is NOT DH but a different skin issue.  Skin biopsies must be taken on clear skin adjacent to an active sore.  

 

Read through the posts by "Squirming Itch", she knows everything about DH and her information can be trusted as true and correct.

 

Good luck to you.

 

Colleen 

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    • Oh, one last thing..... ICE PACKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! You'll feel better. Hey, you have a tub? Want to join the polar bear club in the privacy of your own home? Fill that thing with cold water & dump a 5 or 10 lb bag of ice in there. I'm serious.
    • I don't care what she specializes in, you MAKE her do a dh biopsy. I'm not being mean. Please understand that. It's just that I've heard this a thousand times before - no, a thousand one hundred!  Here's another thing ~~~ get her to order a eTG aka TG3 serum (blood test). That is specific for dh.  Oh gosh! Don't you just hate the ones in your ears???!!!!! Nah, we hate ALL of them! I swear though, when those suckers get going in & on your ears it just drives you stark raving mad!!!!! You've convinced me there is more than ample reason to strongly suspect it's dh.  Here's a tip..... the patterning the lab will be looking for is very easily destroyed by scratching so pick you out some prime places that are new & maybe, just maybe you haven't scratched them to smithereens thus far, and make some super thick gauze bandages & place them over those places so even if you reach to scratch (& we know you will! right?) the gauze will remind you & hopefully help to protect it. The biopsy needs to be taken from a clear area adjacent to a fresh lesion. No steroid creams okay? Not till after the biopsy. BTW, if she wants to put you on steroids after the biopsy be warned, 99% of the time there is such a backlash of the rash the moment you go off the steroid that you will wish you were never born. A dx of dh IS a dx of celiac disease & no further testing is needed. Please come back & update us after you see her tomorrow. In the meantime you have my heartfelt sympathy. Take those cold showers & grit your teeth. Hopefully you will soon be able to go gluten free & start getting some relief.   
    • Extremely itchy and keeps me up at night to the point I was taking cold showers at 3am.   Currently my ears, scalp, feet, and chin just will not stop itching, my elbows have the rash and look purple. Eventually the rash will heal and leaves scars that seem to be purplish in color. I have not tried gluten free diet yet.  Waiting for all the testing to stop.  The new allergist i am seeing tomorrow specializes in skin disorders.
    • I am so sorry for your suffering.  Your story drives home the point that having Celiac Disease drives us all to do our own research and try to find a doc to help--if we are lucky. I wish you a speedy recovery and my most earnest wish that you are NEVER cross-contaminated again! You are a real trooper (little comfort, I know).  Wish I could do more.
    • Tell us how it acts please. Just looking at pictures doesn't give much info. It could be, it could not be. The best way to find out is if you're eating a gluten diet to go to a derm & INSIST, INSIST on getting a dh biopsy. Make sure they do it right. Read a couple of threads here & you'll find links to info. that tells exactly how it's to be done and it's NOT ON a lesion so make sure they don't pull that little number on you. They work for YOU, not the other way around. Make them prove it isn't dh by doing a biopsy the correct way. Do NOT take any oral steroids or get steroid shots within 2 months prior. You're going to have to be extremely firm with them but don't let them deter you from the course. Challenge them to prove what it isn't because they can't prove it's contact dermatitis.
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