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Other Food Sensitivities

Jaxonthehuman

By Jaxonthehuman
in Dermatitis Herpetiformis

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Jaxonthehuman Rookie
Jaxonthehuman
Posted

To those of you who flare up with things other than gluten..... how did you come to learn what they were? was it through elimination? or did you have some sort of test performed by an allergist? The reason I ask is because I have an appointment with an allergist on Friday, and if any of you had luck with a method that is commonly used in that field, I'd like to ask for the same test. I feel that my case is severe (in that I wake up with bloody sheets daily and I have at least a few hundred individual sores). I am in the process of transforming my home into a completely gluten-free home. I bought all new cookware and now have my dog on a gluten-free diet. My girlfriend is also gluten-free.

I am not responding to a gluten-free diet.

I tried Dapsone, Prednisone, and am now on Sulfapyridine.

I have not had any luck with any of these medications.

I cannot sleep for more than a few hours at a time because I wake up scratching. I take benedryll to sleep but it only helps a little. I have been living like this for a few years (since I first developed the rash) and it's exhausting, as I'm sure you all know.

I have checked all my meds, shampoo's, ect.

I also did an 18 day juice fast last summer which did not help.

Any suggestions? Anything I could ask my allergist for?

I am also established with a Dermatologist and see him regularly, but Friday will be my 1st time with an allergist.

I am aware it can take up to a few years on a gluten-free diet but it seems like I would have seen even just a little improvement with the meds and a gluten-free diet by now.

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mushroom Proficient
mushroom
Posted

Are you making sure to limit your iodine intake, which aggravates DH? Iodine is found in, among other things, eggs, shellfish, iodized salt. A quick google will identify other sources. You need to minimize your iodine intake until the current flare stops. I have not had DH, but I understand it can be miserable. I have psoriasis, which isn't a lot better :) But psoriasis isn't affected by iodine :P

itchy Rookie
itchy
Posted

Jaxon, this probably sounds patronising, because you've been dealing with this for so long. It's not intended to be.

But given that your disease sounds like DH, it should be responding to a gluten free diet by now. I don't know if other conditions cause the bleeding and itching, but DH is certainly a very likely cause.

Given that, are you sure you've got all the gluten out? Did you try my earlier suggestion of finding a 'mentor' to have a look at what you are eating to try to spot if there is some risky food that you are still eating. All of us have missed things that came to cause us grief at some point.

Sorry, that's all I can come up with.

squirmingitch Veteran
squirmingitch
Posted

Jason, are you SURE the dog is on a gluten free diet? I was feeding my dog Orijen Regional Red grain free (therefore gluten free) & she began having problems with it. Then I saw a YouTube video of the Gluten Free Fox doing an elisha (sp?) test for gluten on it & it turned up high positive. I finally turned to ZiwiPeak air dried raw. They don't make ANY food with grains in it so it shan't be cc. Also got her the ZiwiPeak jerky for treats. Costs like rip but can't cook for her at the moment with this tiny place we are renting. Also --- got some gluten free dog shampoo --- It's EO for Dogs. Besides the dog getting glutened; We can get glutened when we bathe the dog with shampoo containing gluten.

dilettantesteph Collaborator
dilettantesteph
Posted

I don't know what your gluten free diet is like. You may be one who reacts to the allowable amounts. Have you tried a diet of produce and unprocessed meat?

If it is DH, the blisters come from gluten antibodies and iodine. It won't flare up from other food intolerances.

Jaxonthehuman Rookie
Jaxonthehuman
Posted
  • Author

Jaxon, this probably sounds patronising, because you've been dealing with this for so long. It's not intended to be.

But given that your disease sounds like DH, it should be responding to a gluten free diet by now. I don't know if other conditions cause the bleeding and itching, but DH is certainly a very likely cause.

Given that, are you sure you've got all the gluten out? Did you try my earlier suggestion of finding a 'mentor' to have a look at what you are eating to try to spot if there is some risky food that you are still eating. All of us have missed things that came to cause us grief at some point.

Sorry, that's all I can come up with.

Yes. I went to a support group and will continue to go (it's only once a month). I also met with a nutritionalist. I don't even eat packaged foods if they were made in the same facility as gluten. I feel like Im doing everything except I found the low iodine diet to be a challenge and didn't do it for much longer than a week. Maybe I should give it another shot.

Jaxonthehuman Rookie
Jaxonthehuman
Posted
  • Author

Jason, are you SURE the dog is on a gluten free diet? I was feeding my dog Orijen Regional Red grain free (therefore gluten free) & she began having problems with it. Then I saw a YouTube video of the Gluten Free Fox doing an elisha (sp?) test for gluten on it & it turned up high positive. I finally turned to ZiwiPeak air dried raw. They don't make ANY food with grains in it so it shan't be cc. Also got her the ZiwiPeak jerky for treats. Costs like rip but can't cook for her at the moment with this tiny place we are renting. Also --- got some gluten free dog shampoo --- It's EO for Dogs. Besides the dog getting glutened; We can get glutened when we bathe the dog with shampoo containing gluten.

I give the dog Wellness Core dog food which was reccommended by someone from this forum and her treats are human food. He same thing I eat. Turkey breast and such.

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Jaxonthehuman Rookie
Jaxonthehuman
Posted
  • Author

I don't know what your gluten free diet is like. You may be one who reacts to the allowable amounts. Have you tried a diet of produce and unprocessed meat?

If it is DH, the blisters come from gluten antibodies and iodine. It won't flare up from other food intolerances.

I though DH was "most often" related to gluten antibodies but sometimes triggered by something else? I'm looking for that. Something else.

Hopeful1950 Explorer
Hopeful1950
Posted

After getting the run around from 3 dermatologists, I consulted an allergist because I was sure something I was eating was causing my rash. The allergist helped me figure out it was DH. He did skin testing where they test for common allergens. They look at everything: pollens,molds,animal dander,foods. They asked me to bring in small amounts of things that I suspected were causing the problem and they included them in the testing. They also did some bloodwork and a 24 hour histamine test(urine). As it turns out, I didn't have an allergic reaction to anything and that, combined with other symptoms I was having, led us to the diagnosis of DH.

I have been strictly gluten free for about 16 months and I am still having flares. When I first started the diet, I was unaware of the iodine connection. I was relying on eggs, especially when travelling, and my rash was getting worse and worse. Then I discovered the iodine connection. When I eliminated it, things got better, but still have not resolved. In your case I'd definitely go ahead and do the allergy testing, but also eliminate iodine. Eggs, asparagus, seafood, vitamins, some medications (both oral and topical).

If you have DH/celiac the antibodies that were formed when you were consuming gluten can remain in your skin for up to 10 years. It seems most people are able to heal their rash in about 24 months, but there are some unlucky people who suffer longer.

FYI, in addition to the skin, blood and urine allergy testing they also might do patch testing where they test for contact allergies. A note on contact allergies: One thing I have discovered is that I can't use preparations with pramoxine in them. Things like Neosporin+Pain or Sarna lotion. They really work to kill the itching/pain, but they make my lesions and the skin around them blister more. Take a careful look at what you are using to get relief from your discomfort. Change it up. Another thing that made things worse was the Aveeno bath soak that one dermatologist recommended. No, No, No. Don't do it!

pricklypear1971 Community Regular
pricklypear1971
Posted

I though DH was "most often" related to gluten antibodies but sometimes triggered by something else? I'm looking for that. Something else.

Salicylates. Bromines. Those are the two things I've heard are related to DH and can be triggers.

Google them and see if one rings a bell. Sals are seemingly in everything, and seem to be cumulative.

I know the low iodine diet is restrictive, but if its part of the problem you've GOT to reduce it. It made me flare by itself. No gluten cc required. You won't always have to be li, just until it calms down.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

After going gluten-free I found I was reacting to soy, and maybe dairy?

I went to my allergist, who was treating me for seasonal allergies, and asked about food allergy testing. He did a panel for 90+ allergens via skin prick tests. I didn't react to anything. Then, he did the blood ELISA test for the 8 most common allergens. I got negative results on those too.

I asked him how that could be, since I clearly react to gluten and soy? He said there are NO reliable tests for intolerances, other than removing them from your diet and see how you do. Then, at a later date try them again and see if you get a reaction. If you do, you've discovered your intolerance.

I learned what I was reacting to by keeping a log of everything I ate and noting any symptoms I had. Many reactions are delayed, sometimes by an hour or as much as a day or two! Having a way to go back and figure out what's getting you is very helpful.

Good luck to you. You've been having a rough time for a long while. I hope you can get some relief.

Jaxonthehuman Rookie
Jaxonthehuman
Posted
  • Author

Thanks for your input everyone. I think the best thing for me to do is eat a paleo diet of unprocessed meats and fruits and veggies. I know spinach and potatoe skins and asparagus are high in iodine so I will avoid those. I will also avoid dairy of course. And soy. And I will only eat at home so that I can know for sure that my seasonings are iodine free. Perhaps I will post a few pictures later today so you can see the rash I'm talking about. I sure hope this helps. Thanks again.

ciamarie Rookie
ciamarie
Posted

It looks like I found this thread a bit late, and the paleo diet may be very helpful. I've discovered that MSG causes my DH to flare. I knew it wasn't from gluten (different symptoms) and I didn't think it was iodine since I'd been pretty low-iodine for weeks, but eating whole eggs didn't cause a reaction. Here's a thread where someone mentioned a flare-up after eating something with MSG, and I mentioned my theory:

pricklypear1971 Community Regular
pricklypear1971
Posted

It looks like I found this thread a bit late, and the paleo diet may be very helpful. I've discovered that MSG causes my DH to flare. I knew it wasn't from gluten (different symptoms) and I didn't think it was iodine since I'd been pretty low-iodine for weeks, but eating whole eggs didn't cause a reaction. Here's a thread where someone mentioned a flare-up after eating something with MSG, and I mentioned my theory:

Yes, I second (or third) the MSG. I ate some stuff with an MSG-type additive in it (there's a group of them) and it was ugly.

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