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could it be DH

Dotster

By Dotster
in Dermatitis Herpetiformis

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Dotster Newbie
Dotster
Posted

Sorry this may be a little long winded. I have had some eye problems recently when I had two weeks of severe pain mostly on movement and to bright light, worse at night.  only one eye.

I have undergone eye tests and they have only found some dry patches on my eye probably caused by a blepharitis which over the years I have suffered from a lot but is obviously still there. I have had an mri scan as there is a history of optic neuritis and ms, I get the results on Monday but they are pretty certain it is not neuritis.

last year for the first time I had two incredibly itchy patches on my thighs, one on each exact mirror images, it was treated with a mild steroid cream but this didn't get rid of it, it would come itch like mad almost go then reappear, it then totally vanished.

whilst experiencing my eye problems there are now areas on the top of both of my feet, they ease but don't go then they prickle or sting then start itching, they are small raised areas one was a blister, they then either scab or leave a small purple mark looking like a bruise. they are still there and I now have similar under both arms.

I'm sure my husband is beginning to think I am a hypochondriac. I don't feel ill but then I don't feel well, I could sleep for England and when I do I could sleep some more.

I have always thought I had an underactive thyroid (both mother and sister do) with my dry skin and thinning hair but tests are fine. To me I look pale with dark circles under my eyes. I have always suffered with constipation no matter how healthy and fibrous a diet I eat. and my scalp always itches badly and I get little scabs in my hair.

when I go on Monday I am going to mention my other symptoms which I haven't before as he is an eye doctor and I will make an appointment to see my gp.

I'm either a complete hypochondriac going mad or there is something going on.

I googled bilateral symmetrical itchy rashes as that is what I have and it brought up DH.

what do you think the chances are

thank you in anticipation of your answers.

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captaincrab55 Collaborator
captaincrab55
Posted
Quote

It could be DH.     I have DH, but I started using RESTASIS  several years before I was diagnosed with DH.   Have you tried going gluten free??

 

 

Irene Joanne Explorer
Irene Joanne
Posted

Don't try going gluten free until you've had the celiac blood test and a biopsy- otherwise you'll never really know

one of my bigger symptoms of celiac was sleeping all the time! Naps during the day and then 12-14 hours at night. I also have the scalp issues. 

Dont let a doctor tell you constipation isn't a symptom of celiac- because it sure is for some people

i would also recommend getting blood tests to check for thyroid antibodies. My thyroid levels are okay right now but my thyroid antibodies are really high- they're going down now that I've gone gluten free

squirmingitch Veteran
squirmingitch
Posted

Hi Dotster,

Please read these links:

Open Original Shared Link

Open Original Shared Link

You might want to print them out & take them with you especially to the derm for a biopsy. Make sure the biopsy is done correctly and insist on getting the biopsy. If the derm says you have common eczema without doing any labs for anything else, then find another derm. Do not take any oral steroids or steroid shots for 2 months prior to the biopsy and lay off any topical steroids for at least 2 weeks prior. CONTINUE EATING GLUTEN UNTIL ALL TESTING IS DONE!!!!! 

This article is pretty correct with a few small exceptions, one being that you don't need positive blood tests or an endoscopy if you have a positive dh biopsy because a dx of dh IS a dx of celiac disease.

Open Original Shared Link

Dotster Newbie
Dotster
Posted
  • Author

Thank you guys I will take all of the above advice. Has anyone else had eye problems too .

squirmingitch Veteran
squirmingitch
Posted

I meant to say & forgot to. Yes, I had blepharitis and my eyes became so dry I could no longer wear my contacts, also I had a lot of mucus film over my eyes which was extremely annoying interfering with clear vision. You would think the mucus would lubricate the eye but it didn't work that way.

It's all cleared up since going gluten free. Gone!

There's something too that I haven't been to the eye doctor & tested yet. At one time, I tried the contacts that (I always wore rigid ones) "cure" the needing bifocal thing by way of squeezing your eye into shape. Those were a complete failure. My eyes would not go back to regular shape when I took them out. I would take them out at night & wear my glasses but my vision would stay totally blurry for 8 hours & more. The eye doctor said I had soft corneas. Like I say, I haven't tried again since going gluten free but I am pretty confident this too will have cleared up. It will be interesting to find out one day.

Dotster Newbie
Dotster
Posted
  • Author

Well mri does not show ms no surprise there. I still have a dry eye and some blepharitis despite cleaning my eyes twice daily. I also have very small drainage tubes which they offered me surgery on which I declined are not a major problem. 

He dismissed my idea of dh suggesting a dermatitis of some sort but to be fair not his specialty so have made  a gp appointment.

Interestingly enough they discovered an underdeveloped cerebellum most likely caused by my premature birth so they did not find a normal brain lol x

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Blepharitisguy Newbie
Blepharitisguy
Posted

Squirmingitch, did you go sugar free too as well as going gluten free to cure your blepharitis? I decided to change my diet a couple days ago because topical treatments to cure blepharitis aren't working. I'm just wondering if it's worth being so strict as to eliminating things like white rice. The main things I'm planning to do is eliminating wheat, cutting dairy apart from yoghurt and limiting sugar. Also, how long did it take you after changing your diet to get rid of the blepharitis?

squirmingitch Veteran
squirmingitch
Posted

I have never gone sugar free. The blepharitis cleared up just being gluten free and I don't have a timeline for you as I was paying way more attention to the resolution of much larger symptoms and only noticed the blepharitis had resolved somewhere along the line. If I had to guess, I might say a year, maybe less. 

I never cut rice.

Dotster Newbie
Dotster
Posted
  • Author

Well I saw a go today who agrees it is a dermatitis that could have a dietary link. She doesn't think it is celiac as I don't have diarrhoea even though I told her I suffer badly with constipation and get stomach cramps. She has given me topical steroids and I'm booked in to have bloods done next week including celiac screen iron levels and thyroid plus she told me not to go gluten free before test results are in so at least she knew that 

cyclinglady Grand Master
cyclinglady
Posted
7 hours ago, Dotster said:

Well I saw a go today who agrees it is a dermatitis that could have a dietary link. She doesn't think it is celiac as I don't have diarrhoea even though I told her I suffer badly with constipation and get stomach cramps. She has given me topical steroids and I'm booked in to have bloods done next week including celiac screen iron levels and thyroid plus she told me not to go gluten free before test results are in so at least she knew that 

Good news.  Whew!  Celiacs do not have to have Classic celiac disease symptoms!  I did not!  Anyway, at least she ordered a celiac screening.  ? 

Dotster Newbie
Dotster
Posted
  • Author

Yes I'm glad of that. Typical had an early appointment so rashes all fairly calm tonight I could rip my skin off 

Dotster Newbie
Dotster
Posted
  • Author

Does anyone else get this rash in their armpits this is the current place of choice for mine and is driving me crazy 

squirmingitch Veteran
squirmingitch
Posted

Yep. Armpits are the pits. Belly buttons too. In the ears as well. 

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