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ndw3363

By ndw3363
in Dermatitis Herpetiformis

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ndw3363 Contributor
ndw3363
Posted

I've been gluten free for 3 weeks, but I keep getting new DH lesions. Before I knew what it was, I would only get it on my elbows, wrist and fingers. Now, all those spots are completely clear, but I have new (and intense) ones on my chest, back, and in/around my ears. I seem to get a new one every day. I've cut way back on salt (because of the iodine connection) and have been very careful about gluten. How long does it take before this gets easier? I know that I can continue to get new ones for quite some time, but this is getting out of hand.

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itchy Rookie
itchy
Posted

The factors that create these lesions hang around a long time, and I don't think that they necessarily clear at the same rate from various parts of the body. My worst and some the the earliest lesions are now just faint red spots that don't bother me any more.

But there are a few others that have come at various times, including quite recently, which continue to sting and itch. The itchy ones are on my scalp and won't go away. Aside from refusing to go away, they don't seem much like my DH lesions. So I'm wondering if they don't relate to some factor of my new diet rather than gluten.

Just going by MY EXPERIENCE I would say that things will get easier after a few weeks of being strictly gluten free. But frustratingly, while some people get better after a short time, many will experience problems for a year or even several years.

rosetapper23 Explorer
rosetapper23
Posted

Just want to add that the salt isn't the problem, since it's iodine that can cause DH. Do you mean that you're cutting down on salty foods outside the home? Non-iodized salt is safe to use, but you just have to be careful with any salted foods like crackers, chips, nuts, popcorn, etc. Also, dairy (unless it's organic) can be high in iodine, and seafood, eggs, and asparagus also contain high amounts. Since you maintain that you're eating a gluten-free diet, I definitely suspect that you're ingesting some iodine.

ravenwoodglass Mentor
ravenwoodglass
Posted

Have you made sure you hair and skin products are gluten free? If not you may want to do so. While it is considered that gluten can not be absorbed by intact skin it can be absorbed by mucous membranes so IMHO it is better safe than sorry when you have active lesions.

  • 2 weeks later...
ndw3363 Contributor
ndw3363
Posted
  • Author

I'm just so irritated!! My skin has NEVER been this bad. I few itchy patches here and there before I went gluten-free and now it's EVERYWHERE!!! Just found a couple on the back of my hand, back of my knees, calves, completely covering the back of both legs, back of my neck....

I just don't know what to do. The longer I am gluten free, the worse it gets. I have cut WAY back on dairy and completely cut out eggs (iodine connection) and still, I get a new one every single day. I know that it can take years to completely go away, but shouldn't it start to get better at some point?? The logical part of me knows that ultimately, this is good for my health. But then there's the defiant side that wants to just eat a slice of pizza or a breadstick since I'm already getting worse everyday. This is just not good for my depression :(

Hopeful1950 Explorer
Hopeful1950
Posted

I've been gluten free for almost 10 months and here's my experience: When I initially went gluten free, it seems like I almost "de-toxed" and the DH got worse before it got any better. I am still fighting it even though I am being very careful. I did discover some sources of iodine that were getting me and have rectified that situation and now I seem to be dealing mainly with old lesions and damaged skin that will take some time to clear up. I still do get a little bump or two here and there every few days for no known reason, but they seem to fizzle out in a day or two.

One thing I have figured out is that processed gluten-free foods seem to do wierd things to me. When I read the ingredients there are many strange things in them so maybe my bod is freaking out on the new, unknown things. I finally just decided to prepare all my food myself and that, combined with control of the iodine, has made a big difference.

Remember that when you eat gluten you will deposit more of those nasty antibodies in your skin and they will live there for a long time just waiting to erupt. DON'T DO IT!

I guess what I'm trying to say is to try and be in it for the long-haul. I suffer from chronic depression and so I definitely know where you are coming from. It is really hard to be doing everything right with no obvious reward. I look forward to the day when this will all be a fading memory! I can say that this forum has kept me going when I really wanted to just give up. These people are so smart and helpful...

itchy Rookie
itchy
Posted

I hope people continue to post on this subject.

Over the past few weeks my DH lesions have been on a strong healing trend and are now mostly just purple blotches that haven't stung or itched for several days.

But several sites around my hairline have developed sores that don't seem connected to the DH, have different symptoms. Unlike the DH, which is only a problem at certain times of the day, these sores are irritating most of the time. Various salves, creams, etc. help with the symptoms but nothing makes them go away.

Are they left over DH just taking longer to go away? Some separate syndrome? A result of dietary changes relating to my gluten free diet?

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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