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Thoughts On These?

Jdorrferball

By Jdorrferball
in Dermatitis Herpetiformis

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Jdorrferball Rookie
Jdorrferball
Posted

I posted several months back about myself and concern over possible celiac. I still don't have any definitive answers from a doctor but I DO know for certain that gluten is my enemy :)

Now I have some concerns about a rash that my daughter has. It is different than the rash I have but it's widespread and terribly itchy for her. Wondering if y'all could give me your thoughts on some pics :)

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Open Original Shared Link

This rash in the pics is her back and just above her rear end. She also has this rash on her stomach, around the underarms on the back side, and on her forearms and elbows. She has an appointment with a dermatologist in 10 days but thought I would ask you real experts first! I don't want to mention the possibility of DH if the doc is gonna think I'm nuts. I just have this gut feeling about her. She is one of my children who threw about after going back on gluten after a gluten free trial. Thanks for any help y'all can offer :)

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squirmingitch Veteran
squirmingitch
Posted

First, I am no expert. I can share with you what I have learned. 

I do not understand what you mean when you say "she is 1 of my children who threw about after going back on gluten after a gluten free trial". What is threw about? 

As to the photos...... could dh look like that? Yes. Can many other skin conditions look like that? Yes.

You haven't given us much info. to go on. You've posted the photos & told us it's terribly itchy for her & where it appears on her. 

Is she gluten free? Has she been on any antihistamines to determine if it's an allergy or otherwise resolves with antihistamines?

I'm sorry, but I don't remember your story, your history at all.

Finally, she is your daughter & you call the shots in the docs office. The doctor works for you. You can tell him that YOU want him to do a dh biopsy on her. Do you really care if he thinks you are nuts? This is your daughter we're talking about & as long as your insurance will cover the cost of the biopsy & lab for it or you are willing to pay for it yourself if insurance will not cover it then what reason can the derm have for refusing to do a dh biopsy? You can tell him/her that if they refuse then you will go elsewhere.

Jdorrferball Rookie
Jdorrferball
Posted
  • Author

Sorry...it should say she was one of my children who threw up, not threw about. Her primary care doc put her on oral steroids to see if they would help. At the time she only had the rash on her stomach. The steroids helped a tiny bit. When the ten days on the steroids were up, the rash came back worse and in places she didn't have it before...life her forearms and elbows. She is not gluten free at this time.  You are right I do call the shots and it is my child. I'm also the mother of a special needs child who was made to feel like an idiot over and over again for a long time. No one would believe me when I knew in my gut there was something terribly wrong from birth. Turns out I was right. Guess I'm still a little sore after being treated like a fool for so long. Thanks for your help :)

squirmingitch Veteran
squirmingitch
Posted

I'm so sorry you had to go through that with your special needs child! (((HUGS))) That has to be a horrible thing for a parent to have to endure when you know you're right.

And not being in your position, it's easy for me to say this, but I would tend to think that experience, as awful as it was, would make you more determined to not let them treat you that way again or to allow them schluff off what you as a mother feel in your gut. Believe me, I'm not honking on you! And I greatly sympathize with the position you're in but maybe you can be a bit more assertive?

 

Okay, on to your daughter. Next question --- how long has it been since she went back to eating gluten? When she went back on gluten, how long did the vomiting last? 1 day, 2 etc...? Did she have any other symptoms besides vomiting when she went back to gluten? Also, how long had she been off gluten?

 

I don't understand why the doc put her on oral steroids. To stop her vomiting? Or did it have to do with the rash? How long has she been off the oral steroids? The fact that the rash flared like it did when she went off the steroids is very telling. Have you tried antihistamines to see if they make the rash go away or if they help with the itch?

 

It's good that she is eating gluten now. For a dh biopsy, she will have to have been eating gluten for 2 months prior but the glitch is that she also needs to have been off the steroids for at least 2 months & that would include topical steroids. And don't let any doc tell you otherwise! You don't want to walk away with a false negative.

 

Is anyone in your family dx'd celiac? If they are, that will help when you talk to the doc.

 

I certainly would get her rash biopsied for dh! How old is she? And before she went gluten free for that trial, did she have rash or any celiac GI symptoms?

 

Do you know how the biopsy for the dh rash is properly done?

Jdorrferball Rookie
Jdorrferball
Posted
  • Author

Okay let's see... She is 9 1/2 with no real digestive complaints. She has been eating gluten for several months (August I think) and was only gluten free for about two weeks before my husband gave her and the other children gluten "without thinking about it". She only threw up once and had a headache for a couple of days. She has always had some problems with what we thought was eczema off and on since she was around 3. For as long as I can remember she has had rough feeling skin on her stomach.

A few months back the "eczema" started looking different and was on her stomach which was new. Made her an appointment right after Christmas and she was given the oral steroids because it was too widespread for topical. The steroids helped a little but by no means got rid of the rash. A matter of days after she finished them the rash popped up in new places and was worse looking than in the pics I posted. Those new areas on her forearms and elbows are actually cleaning up right now.

We don't have any diagnosed celiacs in my family. The short version of my history is: diarrhea for four years starting right after giving birth on 2009, lifetime of migraines, tired with a general vague unwell feeling as far back as I can remember, perforated colon while pregnant in 2013, told I have Crohn's disease following surgery for the perforation, weird rash started a few months after surgery that comes on when I eat gluten and goes away when I don't.

I think I know how the biopsy has to be done: next to the effected area, must be eating gluten, and at least a couple months after finishing the steroids. Is that right? Thank you so much!

squirmingitch Veteran
squirmingitch
Posted

OK! Looks like she's going to be just shy of 2 months off the steroids when she has the appointment. I'd say it's a good chance that she actually does have dh. I hope you can get a proper dx. Yes, you have the right of it for how the biopsy is taken. She very well could have had eczema as skin conditions are common with celiacs but you see her everyday & know your child & if it took on a different look then I believe you. Do you have photos of what the rash looked like when it flared right after she got off the steroids? If so, they would be great to print out & take to the derm with you. And take these photos too. You need something for the derm to see. And that brings up a potential problem..... if she doesn't have any places -- fresh, new, active places, then the derm won't have anything to biopsy. You'll have to wait until she has something to biopsy which is going to be a PITA but you gotta do what you gotta do right? 

 

Now that you reminded me of your history I am remembering. You were likely triggered by the pregnancy in 2009. Ahhh yes, the stupid rash that makes getting a dx so very, very difficult. :ph34r:  :ph34r:

 

Hopefully, you can get to the bottom of it with your daughter. Let us know please how things go. 

squirmingitch Veteran
squirmingitch
Posted

BTW, how are you doing? Are you managing okay not getting cc'd with gluten eaters in the house? And how are you feeling these days? Things getting better?

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Jdorrferball Rookie
Jdorrferball
Posted
  • Author

I'm doing pretty well. Thank you for asking! I have had some back and forth periods of eating gluten. Had a heart attack in September that took us completely off guard. Turns out it was caused by a tear in one of my arteries. Nothing at all to so with cholesterol and such. In fact my cholesterol is only 80!!

Being gluten free does bring me a lot of improvement...no headaches, no bloating, more energy etc. However the diarrhea is not resolved, at least not entirely.

squirmingitch Veteran
squirmingitch
Posted

I'm so sorry to hear about the heart attack. Must have scared the living daylights out of all of you! 

 

Stay the course with the gluten-free; it takes a long time for some to heal. You also may have some other issue but stick with the gluten-free & see how it goes & then you can start running down the cause if things don't improve.

 

Wishing you all the best & I mean it when I say let us know what happens with your daughter.

Jdorrferball Rookie
Jdorrferball
Posted
  • Author

I will DEFINITELY let you know. Thanks so much for all of your help and kind words!!

squirmingitch Veteran
squirmingitch
Posted

YVW. I'm happy to do it. :)

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