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An Answer After 2 Years?

greensleeve

By greensleeve
in Dermatitis Herpetiformis

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greensleeve Newbie
greensleeve
Posted

I've been trying to figure out what's going on with my skin for two years. The story will probably sound familiar. I got a cluster of weird bumps on my face, and they wouldn't go away. I've never had acne or other skin problems. The bumps slowly spread all over my face, ears, neck and scalp. I also developed hives all over and no amount of scratching worked. The itching is intense and awful. The facial bumps often look like mosquito bites, and sometimes they look like p%$#@#/crusty bumps. They sting and itch unbelievably. I've been to four doctors, I've had allergy testing, which was positive for wheat, eggs, peanuts and milk. I've stumped two derms, my GP and just quit asking the ENT doc. Allergy shots, antihistamines, anti-fungal, antibiotics, acne meds, rosacea cream....none worked. I am handed a steroid cream and told to rock on. The cream helps some, but the weird bumps return worse than ever when I stop. I know it is not good to use steroids long term. What's a girl to do? I've got to go to work and face my customers.

So, I continued my own research. Based on the fact that I am hypothyroid, had extreme Vitamin D deficiency, insomnia, dizziness, wheat allergy, and gas that would embarras a lumberjack...I found this forum and a wealth of info on the net. I think I might have found an answer, and it certainly warrants further research into this topic.

I'm not concerned with testing/diagnosis at this point. I'm sick of dealing with docs and being handed an RX for some other drug. I want to learn more about DH and eliminate gluten and see if there's any improvement.

I am very frustrated and very much appreciate all the info I've found on this forum.

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squirmingitch Veteran
squirmingitch
Posted

Sounds like you have your answer! Everything you've stated fits dh & therefore celiac. Welcome to the board & the club. Read on here as much as you can. That will give you the info. you need. Here are a few links to get you started:

https://www.celiac.com/forums/topic/95643-interesting-reading-on-dh/

https://www.celiac.com/forums/topic/94056-dh-photo-bank/

https://www.celiac.com/forums/topic/95809-a-break-out/

https://www.celiac.com/forums/topic/78144-dh-and-iodine-what-is-the-connection/

https://www.celiac.com/forums/topic/89923-iodine-levels-in-dairy-products/

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/84513-descriptions-of-dh-types/

Any questions --- we are here.smile.gif

jmb002 Newbie
jmb002
Posted

I am dealing with the same exact problem currently (although I have only had it for 3 months and am going crazy)! Hope you get some relief. I am still trying to get someone to listen to me and make a diagnosis rather than try and mask the symptoms with medications such as prednisone! I just started my second taper of prednisone and symptoms are coming back faster than ever! Good luck!

Jenn

GFinDC Veteran
GFinDC
Posted

To test for DH they take a biopsy sample of the skin next to a lesion., not the lesion itself. A positive for DH is a positive for celiac.

ciamarie Rookie
ciamarie
Posted

I agree with the others, sounds like you're in the right place! I did want to let you know that when I had it on my face a few years back, one thing that did help somewhat was proactive solution. Then after I got home from work I'd wash off the makeup and put some calamine lotion on the itchy areas. It helped enough that I only have some minor scarring on my chin; though I also did my best not to do much scratching.

greensleeve Newbie
greensleeve
Posted
  • Author

Thanks everyone for the replies. The iodine connection makes a lot of sense to me. I have very low blood pressure and eat sea salt as needed at each meal. Will also cut it out and see what happens.

Jenn, I understand about the oral steroids. I can't tolerate them....found out the hard way. Sometimes cold water is the only thing that will make my back stop itching. I hope you find some relief.

squirmingitch Veteran
squirmingitch
Posted

Help for the itch, sting, burn & pain of dh:

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YoloGx Rookie
YoloGx
Posted

Definitely gluten can be a huge factor. However for me I have also had food sensitivity trouble with a variety of natural food chemicals--namely salicylates, amines and tannins. Hope you don't but just wanted to let you know its possible.

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    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

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      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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    • SilkieFairy
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By SilkieFairy · Posted

      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Unexpected gluten exposure risk from cultivated mushrooms

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      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
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      results from 13 day gluten challenge - does this mean I can't have celiac?

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      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
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