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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I Think I Have Dh
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11 posts in this topic

I never thought I'd be posting in this forum and in fact this is my worst nightmare. I already suffer from aquagenic priuritis, pretty much water makes me itch. Showering is literally torture for me and leaves me racing for a bottle of lotion. Add eczema and generally dry skin and my itchiness already has me on the verge of criminally insane.

So about 2 weeks ago I made a really stupid mistake in label reading. I still hate myself for it, it was my first and last time it happened. Then a couple days ago I started itching on my back. Bad. Not my normal itching, but like... enough to make me want to claw my skin off until I bleed for all I care, just so I get some sort of relief. Then it turned red, then red/white blotchy and then got covered in little white blistery pustule type things. I knew as soon as the itching started that it was possibly DH. Then the blistery things popped up and now I'm at the point of a 5 year old with chicken pox, if I don't pretty much cut my nails down to the skin or tie socks on my hands before it gets to its peak tonight I'll probably scratch myself into bloody oblivion.

Life was pretty topsy turvy during the time I ate what I shouldn't have and I didn't go to the doctor like I should have for steroids. Is it too late? I know I should go beg for dapsone but I already have neuropathy issues and am not keen on making those any worse. On the other hand there aren't any side effects of long term, high dose steroids I can't handle. I'm more than happy living my life without a high functioning immune system if I need to. I don't rightly care if I have to lock myself in a closet until the day I die at this point if it'll stop the itching. I just need to retain the use of both hands, which I doubt dapsone will allow me to do.

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I'm so sorry. DH is truly miserable. I get too many adverse reactions to prescriptions to try steroids or dapsone, so I don't know what to suggest about that. Benadryl or Zyrtec will help a little with the itch, but it's nothing like total relief. I am trying the low-iodine diet, but not far enough into it to know if it will help. Hope you get relief soon!

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For me, DH runs a 2 week course - regardless. I can generally stop new blisters by following the thyca low iodine diet.

Ice packs help me the most. Also, I keep the rash moisturized with Vanicream. I pack washcloths on the blisters when they fill and weep - pressure helps, too.

If you've never tried meditation or visualization for pain control, now is a good time to start.

Steroids may or may not help. You may achieve the same goal using topical steroids available at the pharmacy. That said, my rash had been active for a long time prior to trying oral steroids, and they did work for the rash - so they don't have to be taken at the start of the rash.

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That stinks, sorry to hear it! I'm guessing you probably already use shampoo without wheat, but I thought I'd mention it. In addition, check out this thread with some possible solutions for itch relief:

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Oh Adelaide, you needed this like you needed a hole in the head. :wacko: I'm sooooooo sorry!

Mine runs a course of about 4-6 weeks & sometimes 8. What happens is that the first ones come & then behind them more & then more so it gets to where some are healing while others are breaking out & then there are some in between the two. It's truly a b%$@# with a capital B! :ph34r:

Great Big HUGS (((((Adelaide))))))

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Thanks guys! I took some Benadryl before bed last night which is always a risk on how it'll effect me. I passed out for about 12 hours and I'm still pretty loopy today. I'll make my husband calamine me later I think. I can't afford to be loopy tomorrow with a kid to watch. Plus I plan on going to the doctor to review my options. I want drugs. I've made every effort to be as free of prescriptions as possible but now? Sign me up for anything that could possibly maybe help.

I've made sure to have gluten free lotions and shampoos and all that for a long time, but that is a good reminder for everyone I guess. I'm a toucher and I don't even think about it. I just touch touch touch my hair and stuff so I can't afford not to have gluten free everything.

The tyramine free diet is so restrictive its crazy. I've clung to dairy like a lifeline. Now... nothing. There aren't even subtitutes for milk left for me. I'm just going to hide under a rock until this goes away and hope I don't starve to death. It is finally so bad I've had to post cross reference lists on my fridge so I make sure that something is safe on all the lists.

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Thanks guys! I took some Benadryl before bed last night which is always a risk on how it'll effect me. I passed out for about 12 hours and I'm still pretty loopy today. I'll make my husband calamine me later I think. I can't afford to be loopy tomorrow with a kid to watch. Plus I plan on going to the doctor to review my options. I want drugs. I've made every effort to be as free of prescriptions as possible but now? Sign me up for anything that could possibly maybe help.

I've made sure to have gluten free lotions and shampoos and all that for a long time, but that is a good reminder for everyone I guess. I'm a toucher and I don't even think about it. I just touch touch touch my hair and stuff so I can't afford not to have gluten free everything.

The tyramine free diet is so restrictive its crazy. I've clung to dairy like a lifeline. Now... nothing. There aren't even subtitutes for milk left for me. I'm just going to hide under a rock until this goes away and hope I don't starve to death. It is finally so bad I've had to post cross reference lists on my fridge so I make sure that something is safe on all the lists.

FYI milk wasn't a big iodine trigger for me, as long as carageenan wasn't added to it (some half n halfs, cream cheese). But egg yolks sure were...

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oh no. I'm so sorry Adalaide. Keep with the low iodine as well and it should shorten the lifespan of your DH. I also couldn't care less if I never eat again :-( Hang in there. Post as you need to if you just need to vent.

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Thanks guys! I took some Benadryl before bed last night which is always a risk on how it'll effect me.

I prefer Zyrtec personally, my kids take it daily for allergies. It doesn't make me sleepy and it last for 24 hours. There is also a perscription version if you need something stronger.

Good luck! When ever I accidently get gluten it just takes some time to heal.

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Well, the doctor's visit went well. My doctor wasn't available today so I saw one of the PAs that I love to pieces. She was super helpful and agreed that it definitely sounds and looks like DH and that doing a biopsy is probably a waste of time and money since I already have a confirmed biopsy diagnosis of my celiac.There is something that just breaks inside you when you hear the PA looking at your back audibly gasp. :( She didn't want to go with dapsone since my neuropathy is so severe already so we're going with a 5 day steroid to see if it help and we'll go from there. At the very least it'll help me get some of my memory and motor function back if nothing else.

Good news. I'm down 20 pounds! Woohoo! :D I'm so happy it almost makes up for it. At least I know that I'm doing something right with my eating habits.

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Well, I hope the steroid does the trick. I'm sure it will do something & give you some relief. BEFORE I knew this was celiac & therefore before I went gluten-free; I was put on a mega steroid called Dexamethasone & it worked great ..... as long as I was taking it, but the second I stopped the dh came roaring back worse than before. I had some of those left after I went gluten-free & took some in the early days of gluten-free & found much the same effect as prior to going gluten-free ---- that is; the second I stopped the steroid the dh came roaring back. The Dex was really harsh on me too --- it had me speeding my brains out. I was bouncing off the walls & couldn't sleep a wink.

Kudos on the 20 lb. weight loss! :)

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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
    • What does weak mean?  Like you squat down and and you can not get back up?  Or are you fatigued?  When you said blood panel, was your thyroid tested?  Antibodies for thyroid should be checked if you have celiac.  So many of us have thyroid issues.  
    • We are not doctors, but based on the results you provided, you tested negative on the celiac screening test.  You could ask for the entire celiac blood panel to help rule out celiac disease.  The other IgA that was high?  It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid).  In your case, the TTG IgA test works.  Outside of celiac disease, you might have some infection.  Discuss this with your doctor as he has access to your entire medical file.  I would not worry about it though over the weekend!  
    • See: http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ Take a copy of that with you or mail it to the doc. How many endoscopic biopsies did they take? Those with dh tend to have patchier damage than "normal" celiacs.
    • Ironictruth, I think that is a very insightful thought. since different antibodies present for different body systems all the ways gluten affects the body is still not well understood. Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today. I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet. https://www.hindawi.com/journals/cggr/2012/302875/ notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient. quoting "The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years. ***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today. good luck on your continued journey. posterboy by the grace of God,  
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