sbatson1958

You know guys, I know  you aren't doctors and I'm not disagreeing with everything that is said. I've also done a lot of Google Searches before and since I came on here. I'm sorry, but in this day and age, I trust Doctors for some things, and I feel I have question and suggest other things because they are so scared these days that they'll get sued or that the Insurance won't pay for it. And for things like Gluten Sensitivity and Celiac, many seem to be clueless though they try to act like they aren't. That aside, Several here have suggested different things, and each promoted it as if its was THE answer. Yes, you are right...you aren't Doctors and I'm asking questions here that Google doesn't necessarily find, but it is my health and I need to research and question things here too. Many of the things pointed out did come up as risky and not recommended in some situations, even at the links pointed to here. 

As far as the DH coming out Negative, that doesn't necessarily mean it's no DH. There is a thing called a False Negative. Also, I don't know how well they did the lab test. I've been pursing the Gluten issue since my daughters and other relatives are having gluten issues and I could have the same Genes. 

I'll go do my research elsewhere since everyone gets their panties in a bunch being questioned or disagreed with. 

On 11/1/2016 at 6:29 PM, cyclinglady said:

Iodine is a legitimate cause or source for DH flare-ups.  It does not cause Dh, but aggravates it.  

Open Original Shared Link

Consider reading the DH section of the forum for tips on how to survive DH (besides the obvious at avoiding gluten at all costs!!!)

That article suggests NOT doing a Iodine Free Diet but recommends seeing a dermatologist. My initial test from a Dermatologist was done right from what I have read by doing the biopsy in an area close to the rash but not on the rash came back negative for DH. 

I met with my Dr today and get referrals to both an Allergist and a different Dermatologist. He doesn't think it's Gluten related, but I'm still going to stay Gluten Free. I've also stopped using some dryer sheets that could be skin irritants and switching my body wash and shampoo to some gentler gluten free products even though the the current products showed up on gluten free lists. I washed all of my clothes without dryer sheets just to insure nothing left in my closet and drawers have dryer sheet residuals. My laundry soap gluten free and clear and free type with no fragrances, etc. 

Aside from those changes, I'm waiting to see what the Allergist and Dermatologist find and recommend.

13 hours ago, ravenwoodglass said:

Are you avoiding iodine? Both in supplements and food? Iodine can keep the antibodies active in the skin.

 

I wanted to reply specifically to this in this post. Iodine is something that we need. So two questions.

1) Can provide a link or links that backup your suggestion?

2) How much are you saying is too much. If we were to stop it from our diet, there's a whole host of issues that can occur with an iodine deficiency. There's tons of info about that out there.

8 hours ago, ravenwoodglass said:

Are you avoiding iodine? Both in supplements and food? Iodine can keep the antibodies active in the skin.

Also the words 'as best I can' really can't be part of a celiacs vocabulary. Every time you get glutened the antibodies are going to flare and you will have an outbreak. You have to be strict with the diet. This is also vital for your children that have celiac. Read the Newbie thread at the top of the Coping section and ask any more questions you need to ask. Clearing the antibodies out of the skin takes time but it can be done.

Until I read info here, I didn't know that Iodine could be an issue...I will look at my supplements and food and investigate further. 

As to my "best I can" comment and your response. Let's just be clear, when I make that statement, it's meant in the light that I'm doing what I know to do at this point. It doesn't mean I'm taking a haphazard approach. I realize that there is a wide range of ways to get glutened and I need to avoid it all costs. Realistically, none of us can control or know every single possibility of where it could happen, we can only avoid it based on what we know. Even if buying a product or eating someplace that takes all the precautions, there's still a chance we can get zapped. Not even the expert Celiac can control it 100%. That's what I mean by "best I can". That said, I'm doing everything possible to avoid it and if/when I find areas of concern, I change it.

My daughters are both adults in their late twenties and have it well under control and they have a lot of knowledge and experience. I'm following their suggestions and continuing to do my own research as well. Main reason for this post was to get some good advice about dealing with the rash.

As I move forward, I am doing everything I know to live gluten free and adjusting as I go if/when I find things I need to do to avoid it.  While my rash may be caused by Gluten Sensitivity, it's always possible that it's being caused by an allergic reaction to something else not gluten related at all. I plan to permantly live like a Celiac even if I'm not. I'm going to work with my doctor and get a referral to an allergist to find out if there's any other things not gluten related that could be causing the rash as I don't think it's reasonable to have tunnel vision with my health involved. I really appreciate the feedback from you and others in this forum and will continue to work hard to learn and just to improve my health.

11 hours ago, emma6 said:

other than the dh biopsy, have you been tested for celiac? it is possible to have it without any classic symptoms

My Doctor did a blood test and said it was negative but that it's also often inaccurate. I am meeting with my doctor again this week, but I don't plan to pursue further Celiac testing since the treatment will go back to living Gluten Free. I see no reason to continue expensive, time consuming testing along with other test related issues for them to confirm and say eliminate all gluten. Celiac or not, I'm going to live like I am since I have so many blood relatives having gluten issues.

1 hour ago, Posterboy said:

sbatson1958,

See this post that talks about someone else who has had similar problems with a DH like rash.

I think it will answer most of your questions.

Where it occurs can be a clue.  DH rashes and/or rashes that occur when someone is low in Niacin causing hive like reactions in the skin usually occur quoting Knitty Kitty from the link discussion thread "The rash appears on the skin where it is exposed to sunlight" and (my words) where clothes bind or where ie the skin is experiencing a stressor.

I think this link/thread will explain most questions you might have.

I hope this is helpful.

Good luck on your journey.

Posterboy,

 

The rash started on my Leg about a year ago. I've gone though a number of different treatments recommended by my doctor and also had some success with avoiding Gluten but that isn't helping a lot right now. It's appearing on different parts of my body right now. Lower right leg is where it's started, it's pretty big area there. Then some small patches on both legs on my thighs. I have patch on my right wrist and on my right hand. Also my chest is getting itchy and some small bumps popping up there. One very small area near my right eye. The worse parts get itchy, flare up and sometimes blister, then get tender/slightly painful for a while. All of these some to come and go.

Hi All,

I just joined here hoping to get some answers and/or pointers in the right direction. My youngest daughter, late twenties is confirmed Celiac. My Oldest has pretty severe Gluten Sensitivity, she's also late twenties. My youngest gets severe stomach issues with the slightest exposure to gluten including cross contamination. My Oldest also has stomach issues but has had a rash that took a year of extreme avoidance of anything Gluten to clear up. I had a rash the looks like photos I've seen of DH and my oldest said it looked like the famous "Gluten Rash". I had a biopsy done, results did not indicate DH. The Dr just indicated a non-specific type of Allergic reaction. 

Two things.

1) In my mind, regardless of if the rash is DH, it would seem to me that given that Gluten Sensitivity and Celiac can cause all sorts of health problems, it seems reasonable to me that my Rash could still be a result caused by gluten sensitivity even if not specifically DH. I don't have any stomach issues or other symptoms of Celiac or Gluten Sensitivity that I'm aware of. And to be honest, when I eat products that are certified Gluten Free to replace similar foods that would normal be wheat based, I get gassy and/or bloated at times. Any comments on this?

2) I'm about ready to go out of my mind with this Rash. I'm still learning, following advice of my celiac daughter to completely eliminate Gluten from my diet. The rash started to clear up and then returned and appearing in new areas. I have been avoiding Gluten as best I can for months. I'm also trying to avoid any personal care, laundry soaps, etc. that would contain Gluten. When I go out to eat (which I've started to do much less), I try to avoid gluten as best I can. I suppose I could be getting some cross contamination. 

As far as getting this rash under control and getting some relief, I'd read that Dapsone has been used to get DH under control for server cases, but that it takes a long course as well as continuing to remain gluten free. My Dr says that Dapsone is a very harsh Antibiotic and has lots of side effects and does not recommend it.  I'm going to be visiting my doctor again to see what can be done about the rash. I intend to stay gluten free, but I've got to find something that will help and also explore the possibility that the rash is not necessarily related to gluten.

I've tried several different types of lotions on it and get anywhere from no effect to the rash gets worse. Afraid to put anything on it at this point but the skin gets dry and itchy. As far as tests, I'm not going to go through hassle and expense of getting tested for Celiac or Gluten Sensitivity since the only treatment for that really is to get off the gluten which I'm already doing. So to get to the bottom line here, does anyone have recommendations of lotions or other treatments for the "Gluten Rash" (assuming it's what I even have) that if nothing else can help ease the itching and hopefully shrink it up and/or stop the spreading? And yes, I know that some lotions have gluten in them so I'm avoiding those too. 

Help!