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Childhood Dh Remission-Could I Still Have It?

DaniG

By DaniG
in Dermatitis Herpetiformis

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DaniG Newbie
DaniG
Posted

Hi All,

I'm new to the forum, but have a pressing question. When I was 3 years old I was diagnosed with DH (my paternal grandmother and paternal aunt have celiac). From the age of 3-19 I took dapsone orally and topically. I had lesions on my buttox and back mainly-still have the scar on my back where my mom said my first rash happened. When I was 19 the lesions just stopped. I never had a gluten free diet (parents didn't understand what DH was or that my diet needed to change).

 

I'm now 37 and have a slew of issues that I need to determine if I have celiac or returning DH. First, I'm heavy, let's face it, I'm obese (so is my grandma with celiac and she's been gluten free for 40 years). First, my doctors don't think I have celiac cuz I'm heavy. They claim skinny people have it. However, in doing my own reading I see that obesity and trouble losing weight can be symptoms. Also, I have depression and anxiety (for which I'm medicated and have a doctor). I have tingling in my fingers and muscle weakness in my legs and sometimes my arms. Granted I'm heavy, but I've always been strong, like freakishly strong, but sometimes now I feel like my legs are tired before I even start my day. I crave sugar, all the time. I have unexplained infertility. Even after having my endometriosis removed, we weren't able to conceive. Also, I saw pictures of lesions of DH and the ones I experience now are different than in my youth. They are no longer big patches on my back and butt, but are on my middle finger, small pimply bumps (thought it was psoriasis, but it itches like crazy), and along my hairline and sometimes I get them in my hair. Also I get pimple like spots on my face that I call my stress spots because they aren't pimples, they are oozy crusties that take forever to heal (they don't really itch though).

 

In addition, I have terrible allergies, and break out in the hives all of the time (especially if I rub on my skin or gently scratch a spot).

 

So this leads to the question...If I was diagnosed with DH at three but went into remission at 19, do I still have DH/celiac disease???

 

Please help!!!

 

Thanks

Dani

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kareng Grand Master
kareng
Posted

There is no cure for Celiac disease - you have it for your whole life.

 

Now... Because you are currently eating gluten, maybe you should just get re-diagnosed?  Then you will no for sure.  And get a new doctor....the one you have sounds like a jerk.

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DaniG Newbie
DaniG
  • Author
Posted

That's what I thought, once a celiac (DH) always a celiac. My husband didn't believe me that I have the DH diagnosis (I got my dermatologists records from childhood that prove it). Man, I guess I need to start seriously looking at gluten-free lifestyle...too bad the hubbie makes beer for a living!?

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kareng Grand Master
kareng
Posted

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve.

 

 

Open Original Shared Link

 

 

Sorry.  Tornados coming.  Have to get off computer.  Check that website for good medical info

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BlessedMommy Rising Star
BlessedMommy
Posted

Yep, since you were diagnosed with DH, you have celiac.

 

Once a celiac, always a celiac....

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DaniG Newbie
DaniG
  • Author
Posted

Thanks for the replies, looks like I'll be going gluten free soon (and most likely dairy free too).

 

Dani

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squirmingitch Veteran
squirmingitch
Posted

The hubby can still make beer for a living. He can still drink beer but he has to brush his teeth well before you guys kiss. Same goes for when he eats gluten -- brush well before any kissy face goes on.

 

Please read the Newbie 101 in the coping forum so you can make sure you get all the rules down & don't get cross contaminated. 

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