Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Other Food Sensitivities


Jaxonthehuman

Recommended Posts

Jaxonthehuman Rookie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mushroom Proficient

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

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

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

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

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

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Jaxonthehuman Rookie

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

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

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

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

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

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

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

    2. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      GI DX celiac despite neg serology and no biopsy

    3. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy

    5. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,472
    • Most Online (within 30 mins)
      7,748

    kygirlsusan
    Newest Member
    kygirlsusan
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Roses8721
      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.