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Did I Do The Right Thing?
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3 posts in this topic

I'm not sure if this is the right place to post this, but here goes...

I have a guitar student who is the sweetest, most wonderful little girl I have ever known. Her entire family has been one of my greatest blessings. She has a sister who I believe has celiac. She gets stomach aches when she eats gluten, and she also gets "spots" which sound like DH. She has a cousin with celiac and she has given up gluten because of these things, but she hasn't been vigilent. She doesn't check for CC, nor does she read every label, so it is only the obvious things like bread and cookies that she has given up.

Yesterday I talked to her like a Dutch uncle. I told her how serious this is. I told her about cancers and lupus and diabetes, and a lot of the other things that can happen to people who continue to eat gluten, even in small amounts. I even mentioned celiac crisis, and while I told her it was very rare, I stressed that she could be killing herself if she doesn't become more strict.

Well, I think I scared the daylights out of her. She left here looking so depressed it broke my heart. I DID tell her that sticking to the diet is not that difficult once you get used to it, and I told her about the great tasting breads she can get right here at our healthfood store. We talked about some of the great recipes for flourless cookies and cakes. I gave her the addy to this website and strongly encouraged her to come here and read as much as possible.

I'm worried that it might have backfired though. I'm worried that she may think it's too hard and she will give up. Or maybe that I scared her so much she will go into denial. I offered her as much help as she needed, but now I'm wondering if I gave her too much info at once. Maybe she'll never even want to talk to me again.

I love this sweet young girl (She's 13), and I love her family. I told the other kids that they and their parents should all be tested too. I want them well and healthy and happy.

Did I do the right thing? And if I went overboard, how should I fix it? I'm afraid that I, with my big mouth, did more harm than good.

(If you are reading this honey, please forgive me if I scared and depressed you. It's only because I love you so much.)

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Don't be too hard on yourself - you were trying to help this young girl understand how serious Celiac Disease is. I completely understand that what you told this girl was out of concern.

I do think a conversation with her parents is your best bet. Explain exactly what you said and why. Teenagers often take part of the conversation away with them without grasping the whole conversation. Given time she will likely process everything you said, but it can't hurt to have her folks know what was said and from where your concern stems.

If she mentions it to them without them being aware of the context, they could be upset. If she doesn't mention it to them - perhaps knowing of it will start a conversation this family needs to be having.

Hang in there.

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I cannot imagine you scaring anyone so much that she will not speak to you anymore, Barty....and I know your intentions are pure and motivated by genuine concern.

That said, do not feel bad about trying to help. You did a good thing here.

Here's the thing:

We all want to help others.

Do we sometimes press too hard with family and friends? maybe.

Do we want to spare them all the horror we have lived through? Most definitely.

But here is what is also true:

Even when we give our best advice out of love and concern, people can shut down, ignore us, say we are wrong, tell us we do not know what the *&^% we are talking about, say we are "wrong" because they do not feel "that bad" if they have a little, etc, etc, etc. There are members right on here who have insisted (at times) that whatever help we offer is wrong and they refute it. All any of us can do is offer our best info, based on the truth of following a gluten-free diet as we understand it, and let it go.

You helped because you care. :) Let it be now. She'll probably have questions for you in the weeks to come--and you'll be there for her.

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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