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Does This Sound Like Dh?
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Started by grannynanny,

4 posts in this topic

Posted

I'm fairly new to this. Having read many posts around the board, I'm pretty sure that the outbreaks I get in my scalp (and have for years and years) are DH. But reading others' experiences, I am now remembering a huge outbreak I had on my midriff a few years ago (before I knew about Celiac). It was red, itchy and painful. I thought it was shingles, but it did subside fairly quickly and I took no medication (other than Advil). Does that sound like DH?

Also, now that I am gluten-free (7 months -- occasional slippage, particularly with restaurant food), I sometimes get huge red boils around my hairline. They are sometimes pus-filled, and go away after a few days. These bright red eruptions are fairly new to me. Do they sound like DH?

Thanks for any thoughts.

Sue

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Posted

It could be DH. My scalp is the first place I started getting them, many years ago. It is also the first place I break out when I have gotten a large amount of gluten. What I mean by a large amount is more than just the tiny bit of cross-contamination, where the food actually contained an unknown source of gluten. This doesn't happen to me often, but when it does I know by the sores on my scalp, along the hairline.

The abdomen thing might have been shingles, or DH. Shingles is terribly painful. My son occasionally gets it on his abdomen. It hurts to let clothing brush up against it. DH can also be painful though. I guess this is why a good doctor will biopsy the rash to know for sure...As patients maybe we should push for biopsies, since we know it might be DH...

God bless,

Mariann

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Posted

I think you should definately ask your doctor to get those outbreaks biopsied just to be sure. Good luck B)

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Posted

Grannynanny,

I also suffer from DH along with the Celiac. That does sound like DH to me. My outbreaks are fluid or pus filled bumps. They also sting and are sensitive to touch. Ask your doctor to prescribe doxepine. This medication takes care of the pain and may make you sleepy. I am also allergic to soy and this acts as the gluten causing the DH outbreaks. I hope this helps you.

Charmaine

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Go To Topic Listing Dermatitis Herpetiformis

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    • not diagnosed celiac
      gluten free and awaiting a specialist

      By not diagnosed celiac · Posted

      Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • kam00096
      No idea what to do next

      By kam00096 · Posted

      Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • Ennis_TX
      Mental Trauma

      By Ennis_TX · Posted

      I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • cyclinglady
      red skin, pain, huge belly

      By cyclinglady · Posted

      Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
    • egs1707
      Overwhelmed and unable to accept

      By egs1707 · Posted

      So far dairy seems to be OK, as are eggs. I like canned chickpeas so will carry on with those. Beans I had ruled out at one point with the doctor's recommendation to go with the low FODMAPs diet but will reintroduce those now I know it probably wasn't that causing the problems.

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