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Stomachache Today
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Good morning everyone! I woke up with a horrible stomachache this morning. I'm eating gluten and have been eating gluten for a couple of months, but I've been eating more because I finally scheduled tests for the 29th. Terrible stomachache this morning. It's still hurting. I wish the two weeks would go by! Ugh...

There's a part of me that will be happy if the tests come back positive. I guess I'll feel vindicated...you know, that I was able to identify what the problem is and hopeful that getting rid of gluten will alleviate many of my symptoms. But what if it doesn't? What if getting rid of gluten doesn't help? Has anyone else ever had this worry?

I guess I'd like to know that this is the answer and that I can control it through my diet. I hope this is the answer.

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Two weeks is a long time. Hang tough, it will be over soon. Even if the tests come back negative, you can try a gluten-free diet to see if you feel better. The tests don't always tell the truth, as many on the board can affirm. Just hold on to the hope of a healthy life!

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I understand your fear that stopping the gluten may not be the lifesaver you are hoping for. I feared the same thing when I was first diagnosed 8 months ago. In my case, my road to recovery has been long and harder than what it seems most others experience, but I have recovered from some of my gastro symptoms and I'm sure you'll probably be like most Celiacs and recover almost right away from most of your symptoms, too. I think mine is an unusual case. Just don't get discouraged if you don't see huge improvements right away. You'll probably see some things change immeadiately and other things maybe even worsen for a while, but after a few months on the diet you'll see everything start to get more normal again, and should be feeling better. Hang in there and good luck!

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Hey, could be worse, you could be getting tested on May 17th, like I am. I still got a month of eating yummy food that hopefully makes me suffer.. ugh.

But, I totally understand your fear too. I tried to go gluten free without much luck, though might have messed it up.. so getting tested to know for sure, but am a little scared it will say I don't have celiac disease.. and after going to doctors for about 10 years and running into dead ends, really don't need another.

So, lets both hope we have this! LOL =)

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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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