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I feel so dumb right now! I have been trying to figure out why I have been feeling so crummy lately (like I have been glutened). I knew that I had not eaten anything unsafe. Ha Ha. As I sat here reading the website drinking this new organic drink I found at Walmart, I had an epiphany. I had read the ingredients in the store, but I got distracted and did not finish. I just reread the label and learned that drink has barley and wheat grass in it. Too bad I had already finished drinking it. At least this time it is not in my head. :lol: Please tell me I am not the only one that has a brain lapse every now and then. It is all very ironic, the drink tasted terrible. If I am going get glutened, couldn

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Everyone has their moments when that happens. Don't beat yourself up about it things like that happen sometimes. Happened to me a few times...just learn from them when you can and try to prevent it next time. But sometimes accidents are inevitable. Did you get a bad reaction yet?

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I do not know how many people are like this. I have had some minor stomach issues already and nausea, but for me, the worst is yet to come. Most of my problems are neurological. Usually the day after I eat something I shouldn't have I get really fatigued, depressed, and extremely irritable. I get so upset over such minor things. This usually last three to four days. Plus my face breaks out in very painful cystic acne. I have been drinking this stuff for a couple of days, and have been having lots of problems. I should have guessed, but I do not usually think of drinks as having gluten in them. I had been trying to figure out what I had eaten wrong, but the only thing I had eaten differently (aside from the drink) was some Hebrew National hotdogs. I know those are gluten free, but I was really starting to wonder. Live and learn. Thanks for your support. It is really nice to share with people who know what you are going through. :D

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You should see all the shampoo and conditioner I have in my bathroom now! My husband was laughing about it this morning. I have been looking for a gluten/wheat free shampoo and conditioner that don't have any parabens in them. AND to be totally fussy, I want them to be nice to my hair. I have gone through many... still not satisfied but getting there. Anyway, my favorite one I had found didn't seem to say wheat in the ingredients but one day I'm in there reading the flowery prose on the back of the bottle (you know, "You'll feel so radient - like running down flowery slopes to a secret meadow where your shiny hair... blah blah blah") and I see something about wheat. Dumb - I looked at the *ingredients* but not the description. And there is wheat in both. Sigh.

Happens to the best of us (at least I'd like to think that!) :D

Stephanie

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I was having many problems one time a couple years ago. Couldn't figure out what it was. Mom and Dad were visiting, but they were pretty good, and I was watching like a hawk. Then one day Mom and I were sitting having Mom's favourite Lemon tea and Dad was leaning on the counter watching a program on TV and reading the tea box during the comercials. And yup ... The "Lemon Tea" had toasted wheat germ in it! I hadn't even thought to read the ingredients of Lemon tea. Who would have thought they would put wheat germ in it! :o:angry: You know that from then on I read everything :lol: I sure felt dumb at the time though :rolleyes:

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I did the same thing with Malt-O-Meal Coco Roos. Read on here, somewhere, that they were gluten-free. Took it for gospel ~ DIDN'T even think of actually READING the label (hahaha), and, sure enough there it was: Oats!! First ingredient!!!! UGH!!! Needless to say, my daughter is loving my mistake!! I used them for dessert... she loves them for breakfast! :(

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If I am going get glutened, couldn
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To take it to the next level... if you have already glutened yourself, and are already sick, can you have that piece of cake? Or would you get sicker? I'm not gluten-free yet, so it would be a good thing to know!

You would be more sick then you were.That's really not a good idea you get more sick and more damage. Let's put it this way....If you have a car and get into an accident and it gets some damage... does that mean go around and act careless and keep trying to give it more damage?

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Sicker? Probably, but perhaps not. But definitely more damaged in the intestines, regardless of whether you feel worse as a result.

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I did the same thing a few weeks ago. We made this awesome taco meat and it didn't occur to me to read the many ingredients cause my son-in-law was cooking and he's got the skin form of celiac (hives and only mild intestinal symptoms). I woke up in the middle of the night positive there were WOLVERINES trying to claw their way out of my intestines!! I didn't know whether to sit or turn around, if you know what I mean. I sat... and sat... and sat... and sure enough... both the adobe sauce and the mole in the taco meat contained "toasted wheat bread."

I accused him of trying to poison me as he thinks I "cursed" him to get celiac disease... he found out about his about a year after I did... and as celiac disease didn't appear to be as common as I believe it will come to be... he accused me of cursing him. Hahaha

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Kaiti and celiac3270: Thanks for the replies! Excellent analogy too!

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    • 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!
    • Hey guys, the last year and a month of transitioning to totally gluten free was hard, but I now seem to be healthy. The first six months I got horrible cramps that would suddenly come and hit hard, but I really havent seen any of those since about February-March. One thing that I wouldnt say has gotten better is my psyche. I was always sort of an anxious person (hard not to be when you dont feel well yet you have "IBS" and you're just "nervous", which all of you probably know), but I am borderline hermit now. I finally went to the doctor today and was prescribed prozac, so hopefully that helps, but I was just wondering about you guys? Thanks  
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