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About bluewhitesky

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  1. Wow...what an improvement! And I hear you on finding it difficult because the rash flares up and improves for no apparent reason sometimes. That drives me crazy! Keep us posted if anything happens after adding iodine back.
  2. Wow, that must have been so awful for you. The final picture looks like a brand new hand!
  3. I'm glad you are healing quickly!
  4. That looks exactly like my son's DH, especially those little craters where he has scratched off the tops. I know exactly the frustation of trying to figure out what's going on. What we did, was take our son off gluten to see if the tummy aches would get better. Tummy aches stopped immediately and the rash started healing. That was great information and it gave me something to go with when I went to the doctor. The trouble with that was we had to get him back on gluten for a full 12 weeks before we could do any testing. So most people would tell you for that reason, to not go off gluten at all until you a diagnosis.
  5. So iodized salt for sure, plus pretty much any seafood, fish, seaweed, are the biggest. Also dairy products, egg yolk, turkey, some random veggies in lesser amounts. My son reacts to carrageenan which is an additive/thickener made from seaweed in lots of processed foods, esp. dairy products. We figured this particular one out after some experimentation and investigation after being gluten free for a number of months.
  6. That looks like a lot of new blisters compared to the last picture you posted. Have you noticed any worsening of the rash after your son eats foods containing a lot of iodine? Iodine is connected to DH. For my son, it is a huge trigger.
  7. Hi Si and Ash's Mom, I am a mom to a 7-year old boy with DH (not formally diagnosed yet). You can look up my past topics and you'll see some pictures of his rash. It does look a lot like your son's rash. I don't think you're barking up the wrong tree, esp with the other digestive/mood stuff. I wanted to comment on the itchiness question. For much of the time, my DS would be constantly itching his rash, but never complaining. If I asked him if he was itchy he would answer, "A bit," or "I guess." I don't even know if he realized how much he was scratching. There were times when it flared up and he complained, especially at night. He even missed a day of school once because of it, but when it was at the level of your son's elbows he wouldn't complain. He would scratch and I would find blood on his clothes and sheets, but he wouldn't complain. He also never cries when getting a needle, rarely cries when he hurts himself, etc. so maybe it's his nature. Or perhaps it is less itchy in kids. It would be interesting to find out more about other kids with DH. As for the biopsy, my DS had one last June on his elbow. It was a piece of cake for him (see above LOL) but the whole thing took longer and was a little more involved than I expected. First was the local freezing (needle...a couple of jabs I believe). Then he had to wait for it to take effect. Then the Dr. did the punch in a couple of different places. I had to hold my DS still in case he flinched. Then he had a stitch in each site. My best advice is to listen to squirmingitch (I owe you an update and a biopsy report, squirming!). She knows what she's talking about and was the best coach before our doctor appointments last year at this time. I am getting ready for a one year follow up with our derm, so I'm back on the forum gearing up, I'd be happy to answer any questions for you.
  8. Glad you got a definitive answer from the endoscopy!
  9. Good idea!!
  10. Here are my posts about going through this with my son. Pay particular attention to squirmingitch's responses. She knows what she's talking about.
  11. Poor little sweetheart. He must be so uncomfortable. We went through something similar with the dermatologist for my DS. He kept saying excema, prescribed steroids, said it wasn't in the right spot for DH, not symmetrical, etc. My first thought for you was to insist on another appointment with the Derm to take a biopsy. But, you're in a hard place right now because of another problem with the steroid cream. It can cause a false negative. We ended up using the steroid cream after the biopsy and it did seem to help clear up the sores and it did help with the itch. So the derm is wrong, it can have an effect on DH. Many people get a rebound rash after they go off it though, so it's usually not worth it. This whole thing is so ridiculously frustrating. I think if I were you, I would just take him right off gluten, 100% to give him relief. Keeping him on it long enough to get the steroids out of his system and to try to get a biopsy would be so hard on him (and you). Judging by your long wait get the derm appt, I'm guessing you are Canadian? Any chance you are from Ottawa? I'm going to look up my old posts from a few months ago when I was going through the same thing. Though DS's rash wasn't as bad as your little guy's and although it was itchy he rarely complained and it didn't slow him down. We also have a family history of celiac. He gets frequent, mild tummy aches. We got the biopsy back a couple of weeks was mostly positive for DH (?) IgA present, but the size of the granules was "not entirely typical of DH". It was positive enough for the derm to call and say no gluten, come and see me in a year. We went back to our GP last week for a full celiac blood panel and vitamin testing. I don't know if you're read about the connection with iodine. Foods high in iodine can cause the rash to flare up. I feel like my post is all over the place. Please fire any questions my way if you want. I'm on the cusp of switching from being a mom asking for help to maybe being able to give some help now.
  12. DH can take many different forms. My DS's DH starts off like little itchy bump/pimples on his forearms and legs.
  13. Soozy, I'm from Ontario too. Ottawa actually
  14. Hi Becky! I'm relatively new here as well and we've just got a (semi-)diagnosis for my son this week. We have an appointment on Wednesday and I'm expecting to make the change in our house to 100% gluten free directly after that. I agree, this site is a God-send. I spent hours and hours reading over the past few months. I also feel overwhelmed and sad, and I've been half expecting this since before my kids were born just based on my reaction to gluten and family history. So I'd say you're right, your feelings are totally normal! Welcome!! I'll probably start posting more too now that I know what we're dealing with.