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I Need To Get This Out...

krawhitham

By krawhitham
in Dermatitis Herpetiformis

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krawhitham Newbie
krawhitham
Posted

I haven't been on any gluten-free or celiac boards so I feel I need to get this out somewhere and vent.

I have been suffering with a severely itchy dermatitis since January, it came on gradually around my eyes and arms, and eventually spread to my armpits, breasts, chest, stomach, groin, thighs, butt, back of the knees and lower leg.

In addition, HORRIBLE anxiety. I've never had anxiety, and all of a sudden I felt like I was going crazy. I almost thought it was the horrible itching (I would itch these blisters until I bled, and then have bruises on my legs from itching so intensely, I looked as if I was being abused!!) that was driving me crazy. I recognized it as anxiety, and while I was stressed I really didn't have any unhappiness in my life and couldn't pinpoint why I was waking up in the middle of the night feeling as though the world was closing in on me, gasping for air.

So, I researched on the internet, as we all do, and I found DH. I have had lactose intolerance and soy intolerance for a few years now, both self-diagnosed from eliminating them from my diet. I realized the only way to really truly know if this was from gluten was to eliminate it. I have been gluten-free for a month, and while I'm still severely itchy, hydrocortizone cream works wonders. When i was eating gluten, hydrocortizone did NOTHING for the itch.

I know you have to go to a Dr to be diagnosed, but I am both young and poor and have no way of getting any type of tests done, period. I am depending on my own self to be able to stay gluten-free for the next year, in hopes that my skin will get better. It has been covering my ENTIRE body for 8-9 MONTHS now, non-stop, only getting worse.

Being gluten-free has made the outbreaks get better, and the scars from previous blisters are now healing.

I have not had ANY anxiety/panick attacks since going gluten-free, and I am SO HAPPY about that!!!!

I just needed to get this out, I don't know anyone who is allergic to gluten so I feel pretty alone (and somewhat crazy) due to all of this... What on earth did we do before the internet?!

Thanks for listening :D

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captaincrab55 Collaborator
captaincrab55
Posted

Welcome krawhitham, You'll soon find out that you have many friends here and don't be surprised if you start finding out that people you know can't tolerate gluten either..

If your up to it, you can try the Home Iodine test to check for DH. It's a low cost self test....

krawhitham Newbie
krawhitham
Posted
  • Author
Welcome krawhitham, You'll soon find out that you have many friends here and don't be surprised if you start finding out that people you know can't tolerate gluten either..

If your up to it, you can try the Home Iodine test to check for DH. It's a low cost self test....

Thank you!! i'm glad I found an outlet here, even if I don't meet anyone in my real life that has it.

As I have been reading the boards I have been wondering about the iodine test, where do I get the ingredients for this?? I'd like to try it...

momxyz Contributor
momxyz
Posted

hi there, I am another self diagnosed person with what I presume is DH, Like yourself, as long as I am off gluten, the OTC 1% hydrocortizone provides relief. I have been gluten free (more or less) 5 weeks now, and the amount of new blisters has decreased. I still have some very bright red areas, but, the itchy factor is amost gone.

Other people with gluten intolerance experence anxiety and/or depresssion, with - or - without any of the usual GI symtoms. You have a rash and anxiety .. my humbly offered advice would be to stay gluten free, use hydrocortisone cream consistently..

you are not alone, stay in touch!

krawhitham Newbie
krawhitham
Posted
  • Author
hi there, I am another self diagnosed person with what I presume is DH, Like yourself, as long as I am off gluten, the OTC 1% hydrocortizone provides relief. I have been gluten free (more or less) 5 weeks now, and the amount of new blisters has decreased. I still have some very bright red areas, but, the itchy factor is amost gone.

Other people with gluten intolerance experence anxiety and/or depresssion, with - or - without any of the usual GI symtoms. You have a rash and anxiety .. my humbly offered advice would be to stay gluten free, use hydrocortisone cream consistently..

you are not alone, stay in touch!

Thank you momxyz! It feels good to know someone else is going through the exact same thing (even though it's kind of torturous to actually experience this...) How did you come to find out it was DH? Through the internet or was it suggested to you by someone else?

I had a Dr. (friend of mine) tell me my skin looked like I had a food allergy - but he really couldn't say what specifically. Figured the rest out by reading online...

momxyz Contributor
momxyz
Posted

well, it started with my daughter's problems, posted elsewhere on this board. W/o repeating her medical history here, I started "connecting the dots" if you will and realized that her issues (which included anxiety and depression) could very well be related to sensitivity to gluten. She went gluten free 8 weeks ago and feels the diet has helped her.

As I continued to research the disease, I wondered if the very itchy rash I had had around my ankles - since last October - was DH. I looked at pictures on the internet and saw similarities, so, I decided to try an experiment. I went gluten free about 5 weeks ago. After few days, the hydrocortisone seemed to be doing a better job keeping the itching in check, so I decided it was worth continueing the diet. I saw gradual but continued improvement.

Then three weeks into the diet I had to go away for the weekend for a family wedding. I did not take enough gluten free foods with me and I ended up eating pasta twice over the weekend...a day after my return, the itching returned with a vengeance. To me that was proof that this rash was related to ingesting gluten.

I wouldn't recommend that you try a "gluten challenge" however! I did lose some ground in the process of healing as I got new blisters and it took about a week before things settled down. It definitely has given me great incentive to resist temptation. From what I have read from others' experience on this board, complete healing can take some time so I am trying to be patient. You might want to check out some of the threads on the DH forum on this board. I hope you have continued healing!

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