My Turn To Ask What You All Think...

[Cath4k]

I suspect my almost 16 yo dd is gluten intolerant for a long, long list of reasons I won't list here. She has been gluten-free for over four weeks and is finally starting to feel better (at least until today - we think she got glutened from a CC mustard jar yesterday). Anyway, I have just started to read up on DH and I wonder if she has it.

She has had a continual breakout on her back of what she assumed were pimples. However, they don't really look like pimples. Some have gotten infected because she has scratched them, but other than that, if they are filled with anything it is clear fluid. She says they don't itch her terribly, but when she does scratch them, it "feels so good" to scratch them. So, yes, they itch, but not maddeningly so.

The weird thing is that they are across her shoulders, but then they run in a perfect line down her spine. At the same time that they showed up, her forhead broke out severly, too. Being a teenager, we just assumed it was acne, but her forehead has improved (not cleared) since going gluten-free. Her back has remained the same overall. It is a mixture of small clear-filled bumps, scabs over red spots, and red spots that were previously bumps and are healing. She also had a terrible breakout in both of her armpits back in the spring. They wouldn't clear up and ended up infected and were diagnosed by her pediatrician as impetigo. An antibiotic cleared up the impetigo, but she was left with scars and red patches which I assume will eventually fade. She still gets the bumps in her armpits (although not as severe) and she has smaller spots on her torso also, but not a lot of them.

I will try to get some photos tomorrow and link them through photobucket, but what do y'all think from what I have described?

I think I will be calling the dermatologist tomorrow.

Thanks,

Cathy

[Cath4k]

Why does this post show up on the subforum page as the newest topic, but I don't see it on the DH main page??

Also - as a related skin question I wanted to mention that my dd has had what we call "arm bumps" down the back of her arms (below the shoulder to the elbow) her whole life. They are bumps that are filled with a white substance that will come out if you scratch them open or squeeze them, but they are not pimples. They do occasionally get infected. I asked her pediatrician about them years ago and he said they were harmless and would go away when puberty started. They didn't. However they did go away after being gluten-free for 3-4 weeks. I was amazed! Nothing has ever helped them. Although they do not hurt or itch a lot, it does feel good to scratch them. They eventually flatten and leave a red spot behind. They also sometimes scab first.

My 4 yo ds has them also. He went gluten free a couple weeks after my dd. His flared up a lot worse at first and now they are starting to subside. I should get a photo of them before they possibly (hopefully) disappear also.

Does this sound familiar to any of you?

Thanks,

Cathy

[missy'smom]

If you go to the Celiac Sprue Association wbsite, they have quite a few pictures of DH to compare to.

[ravenwoodglass]

Why does this post show up on the subforum page as the newest topic, but I don't see it on the DH main page??

Also - as a related skin question I wanted to mention that my dd has had what we call "arm bumps" down the back of her arms (below the shoulder to the elbow) her whole life. They are bumps that are filled with a white substance that will come out if you scratch them open or squeeze them, but they are not pimples. They do occasionally get infected. I asked her pediatrician about them years ago and he said they were harmless and would go away when puberty started. They didn't. However they did go away after being gluten-free for 3-4 weeks. I was amazed! Nothing has ever helped them. Although they do not hurt or itch a lot, it does feel good to scratch them. They eventually flatten and leave a red spot behind. They also sometimes scab first.

My 4 yo ds has them also. He went gluten free a couple weeks after my dd. His flared up a lot worse at first and now they are starting to subside. I should get a photo of them before they possibly (hopefully) disappear also.

Does this sound familiar to any of you?

Thanks,

Cathy

Sure does, what you describe here sounds like the bumps that covered my son's chest for almost all of his life. They were gone about 6 months after he went gluten-free and have never reappeared. As for your description of the lesions on your DD's back and forehead they sound just like the DH sores that I used to get as an adult. I was covered head to foot in them as a child but as an adult they usually appeared on my face, scalp and back. DH also leaves distinctive scars that are a reddish purple and take a very long time to fade. If you do decide to have a derma look at her 'rash' and they do a biopsy and don't just say 'pickers acne or ectopic dermatitis' and hand you some cream make sure that they biopsy the area next to a lesion and not the lesion itself. It can take a bit of time for all the antibody reaction to leave the skin but if these are caused by gluten they should resolve and as a bright note (if there really can be one) we found the lesions to be really helpful at first in determining whether our family had been glutened since they show back up before the GI symptoms hit.

[Cath4k]

Okay, I am going to try to post photos...let's see if I can do this...

This is of my dd's upper back along the spine. The lower right one started out as a smaller red spot with a clear blister. This photo was taken the following day when it is a lerger red spot and not as clear in the blister. The upper left spot is one that has been healing. The others are in various stages:

http://i20.photobucket.com/albums/b210/CathCC/IMG_0326.webp

This one is of my dd's lower back, also along the spine. These are all in various stages of healing:

http://i20.photobucket.com/albums/b210/CathCC/IMG_0325.webp

And this last one is of my ds's arm. Both arms are like this and my dd's arms have been the same way her entire life up until she went gluten free and they have cleared up (although marks remain behind.) I don't think this is DH, per say, but was wondering if it looked familiar as a skin condition related to gluten intolerance:

http://i20.photobucket.com/albums/b210/CathCC/IMG_0305.webp

I hope you don't mind my sharing and asking you all, but her rash is not severe and so it doesn't look like the photos I see on the internet. I am not trying to diagnose her, but I wonder if this warrants a trip to the dermatologist.

Thanks so much,

Cathy

[Cath4k]

Sure does, what you describe here sounds like the bumps that covered my son's chest for almost all of his life. They were gone about 6 months after he went gluten-free and have never reappeared. As for your description of the lesions on your DD's back and forehead they sound just like the DH sores that I used to get as an adult. I was covered head to foot in them as a child but as an adult they usually appeared on my face, scalp and back. DH also leaves distinctive scars that are a reddish purple and take a very long time to fade. If you do decide to have a derma look at her 'rash' and they do a biopsy and don't just say 'pickers acne or ectopic dermatitis' and hand you some cream make sure that they biopsy the area next to a lesion and not the lesion itself. It can take a bit of time for all the antibody reaction to leave the skin but if these are caused by gluten they should resolve and as a bright note (if there really can be one) we found the lesions to be really helpful at first in determining whether our family had been glutened since they show back up before the GI symptoms hit.

So, if I cannot get her into the dermatologist right away, does she need to eat gluten before the visit? She has had this rash since last spring (at least), but she has been gluten free since September 25th (well except for the fact that she obviously got CC because she is miserable right now.) Sometimes it can take months to get into a specialist. If she does have to eat gluten ahead of time, how long ahead of time should she eat it and how much gluten do you think?

Thanks,

Cathy

[ravenwoodglass]

So, if I cannot get her into the dermatologist right away, does she need to eat gluten before the visit? She has had this rash since last spring (at least), but she has been gluten free since September 25th (well except for the fact that she obviously got CC because she is miserable right now.) Sometimes it can take months to get into a specialist. If she does have to eat gluten ahead of time, how long ahead of time should she eat it and how much gluten do you think?

Thanks,

Cathy

She would need to have an active lesion but if she is doing well on the diet I would not gluten her to make her have one the day of the appointment. For one thing the cure for DH is the diet. It does take a while to clear up and small amounts of CC will reactivate it. What I would do is to make an appointment and then once you have a visit talk to the doctor about getting in quickly to do a biopsy when she has an accidental glutening. The biopsy does not take long and they could most likely fit her in at the end of day. Although in a way I would question the need for one if it is obvious that they are gluten related.

Your pics of your son's arms look just like the bumps my DS had for his entire childhood. Your DD's lesions do look like the sores I get now after being gluten-free for 5 years. Before that mine were much larger and more extensive, but then again I had 45 years of DH before they knew what it was.

[Cath4k]

So, if I cannot get her into the dermatologist right away, does she need to eat gluten before the visit? She has had this rash since last spring (at least), but she has been gluten free since September 25th (well except for the fact that she obviously got CC because she is miserable right now.) Sometimes it can take months to get into a specialist. If she does have to eat gluten ahead of time, how long ahead of time should she eat it and how much gluten do you think?

Thanks,

Cathy

Thank you so much for your help! I did a google search earlier today for "dermatologist celiac" and my city name and came up with a doctor who had spoken at a local celiac group's meeting about DH! She spoke about the need to take a proper biopsy, etc at the meeting. She is on our insurance, too! I called the office today and the gal on the phone was terrific. She set up an appointment for mid November, but when she heard what we were dealing with, she squeezed my dd's appointment in earlier to early November. She asked me to bring the photos I have, so I will be taking more photos as lesions show up (if they do.) I am so thankful to have found a doctor who seems so knowledgeable about DH. If she rules DH out, then I will feel confident in her assessment.

You have really helped me. Thank you!

Cathy