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An Answer After 2 Years?


greensleeve

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greensleeve Newbie

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
jmb002 Newbie

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

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

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

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

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


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YoloGx Rookie

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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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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