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Sooooo Angry
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I am so so so so angry. I went in today to talk to my professor of my practicum class. I gave him the dissability paperwork for the class, and then the letter that my case worker at dissability services wrote about my concerns for dealing with this in my practicum. This is the first time I've really had to deal with this in a work environment because I was diagnosed right before I left for grad school (after I had accepted the offer of admission and given notice at my 2 jobs). He is supposed to be there to help us negotiate with our practicum locations if there are any problems that develop. As such I was giving him more information that I would usually give to a professor about the rapid onset and asking him how I should bring this up with my adviser at my practicum. He stops me in the middle and is like, "are you sure you should be in this profession?" I had just told him that I hardly ever get sick, but that I need to be prepared for the worst case scenario (getting sick while working with a client). I don't know of a profession where this disease would not possibly be a problem, unless you work from home and have no deadlines. I work very very hard at not getting sick. How am I supposed to trust him to help if something happens if he thinks I shouldn't be working here in the first place? I don't know what I am supposed to do at this point. He even knew what I had when I had never even told him previously that i had a dissability. My department makes me so pissed.

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Hi there.

Well, I don't know what your practicum is... are you in a remote location without a restroom?

I understand its frightening to think about being in front of someone and projecting a professional demeanor (not to mention concentrating) when you've been glutened. I also understand you want to know how to handle it prior to it happening.

Sometimes, you just have to wing it. And while you're winging it pull pages out of Emily Post and use the most polite excuse you can to get to the restroom. If you must reschedule, you must reschedule. Life happens for any professional dealing with the public - counselors, doctors, etc.

As an example, my uncle is a professor and has many health issues. Sometimes he must excuse himself from class and tell them to just amuse themselves or do an assignment (mind, he has a lot of freshmen so this can lead to chaos). He also keeps his cell with him and will call his assistant to go tend to the class. And no, he has no shame or embarrassment about doing so (he's rather eccentric and charming).

Now, on the professional side of things - yes, you will experience discrimination. You will learn how to deal with "informing" people as you go along. You will also learn how to deal with people who don't care, and people who are jerks. You will also learn when to and NOT to inform people (sad but true).

My advice is to always prep your own meals when you have a meeting scheduled. That way, you greatly reduce getting glutened. Yes, it takes time and prep but it will pay off. Also, since your symptoms are D related you might try probiotics, digestive enzymes and some of those supplements designed to relieve stomach issues when glutened.

This is how I leave the house: snack, water, and whatever food I can foresee. I also have a pack of meds with me - lotions, potions, very soft wash clothes, and a clean shirt. Why a clean shirt??? Because that rash weeps like crazy if it pops up and makes it look like I'm a sweating fiend.

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I am sorry you had such a negative reaction from your practicum supervisor. I supervise students in a clinical psychology Master's program, and I can't imagine ever having that reaction to a student asking me how to talk to a practicum site advisor about a disability, gluten-sensitivity or otherwise. If you are in the mental health profession (which it sounds like, but I could be wrong), what I would tell you (as I would tell my own students) is that if you end up having a reaction in front of your clients, just be honest about it. People seeking help from those in the helping professions often like to know that their helpers are also human. You can model for them a healthy way of dealing with an obstacle, which can only serve as a help to them. As for your practicum site advisor, just be honest with them about it, and let them know that for the most part it can be controlled but you never know when that cross-contamination can happen, especially when there are shared food spaces. If you can be open, honest, and professional, then that's the best you can do. And if you ever have to leave a client because of a reaction, just use it as a teaching moment. As for your supervisor, maybe you should be asking him if he should be in his profession!

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I am sorry you had such a negative reaction from your practicum supervisor. I supervise students in a clinical psychology Master's program, and I can't imagine ever having that reaction to a student asking me how to talk to a practicum site advisor about a disability, gluten-sensitivity or otherwise. If you are in the mental health profession (which it sounds like, but I could be wrong), what I would tell you (as I would tell my own students) is that if you end up having a reaction in front of your clients, just be honest about it. People seeking help from those in the helping professions often like to know that their helpers are also human. You can model for them a healthy way of dealing with an obstacle, which can only serve as a help to them. As for your practicum site advisor, just be honest with them about it, and let them know that for the most part it can be controlled but you never know when that cross-contamination can happen, especially when there are shared food spaces. If you can be open, honest, and professional, then that's the best you can do. And if you ever have to leave a client because of a reaction, just use it as a teaching moment. As for your supervisor, maybe you should be asking him if he should be in his profession!

Thank you very much for your reply. It really helps knowing that there are other advisers out there who are more supportive of their students. I will take your advice when I talk to my practicum site adviser. I hope I get the same type of response you would provide to your students when I talk to him. Thank you very much.

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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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