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"glutened" For First Time
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So I've been on the gluten free diet for a little over a month now. I'm still working on getting a solid diagnosis because some of my test results were skewed by mistake. Anyway, overall I feel like I haven't improved much but I must have been making some gradual improvement and just wasn't really aware because I woke up this morning feeling HORRIBLE! I had dinner at my parents house last night and knew the food was safe- my mom is 110% supportive of this with me and knows the ins and outs of my new diet so it really didn't occur to me what had happened. Anyway, I made it up and got to work anyway. My main symptom (even since starting the gluten free diet) is severe exhaustion which fluctuates from day to day- it must have been improving slightly though. I could barely move today I was tired. I came home at lunch and slept. By this afternoon I was feeling super bloated/ gassy/ intestinal cramping (which I only ever had issues with sometimes), extremely dizzy and lightheaded, headache, and the tips of my fingers were numb and tingly. I'm feeling itchy all over now, too.

I started to think about everything I ate at my mom's, listing ingredients in my head, and then it hit me. I put seasoning on my vegetables. I thought- there is no way the seasoning had gluten in it! Well I decided to call my mom and have her look at the ingredients for me and sure enough! Says "contains wheat gluten" in bold letters. I cannot believe I didn't read the ingredients! I don't normally put seasoning on things, but it was there in front of me I just sprinkled a bit on without thinking much of it. I have certainly learned my lesson, but honestly this really confirms things for me. I have my first appt. with a GI doctor in a couple of weeks- we'll see how that goes.

Anyway, just wanted to say thank you for this great board, it has been so much help to me! I know now to read every single label, every time, even on things that seem harmless. I hope this passes quickly so I can get back to feeling at least semi- okay by the time I have to go back to work tomorrow. It is nearly impossible to function when I feel this fatigued; I don't even feel safe driving.

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I've been gluten free for 6 1/2 years and I can't count how many times this has happened to me. One week, I was on a garlic bread kick...I had my Against the Grain bread, butter spread and McCormick's garlic bread powder....little did I know that had bread crumbs in it!!! Seasonings can be very tricky!! I hope you feel better

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Yah, I hear you. Mine was bottled bbq sauce. I was so careful -- we had steak (with just some salt and pepper), baked potato, and corn on the cob. No gluten anywhere in sight. So why didn't I think to read the bottle of bbq sauce? Who knows... my only excuse was that I'd only been at this diet for a few weeks. oy..

Hope you feel better soon.

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I have been gluten free since only June and was not

sure if i was feeling any better until i was making Lipton soup for my girls and accidentaly sipped soup off the spoon to see if it was done yet.

As soon as i did it i realized my mistake and could not believe i had been so

unaware of my own actions. But when your kids are running around the house and your trying to get them dinner ready you can get a little razzled. It took about two days but i defintetly felt the effects. I hope i will not make this mistake again

but i probably will. Everyday i get a little better at this and the better i get at keeping gluten free the better i feel and the more careful i am the more days i have of feeling good. Today i feel great and that is an accomplishment.

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Here we are over 3 days later and I still feel horrendous! How long does this typically last for? I am so uncomfortable. :(

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For me the worst is usually over after 3-4 days. It's a few more days after that before I'm feeling back to normal. Hopefully you'll start feeling better quite soon.

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I had something (not sure what) in the last 24 hours, woke up with my rash, dicky tummy. Went to work feeling like hell then got lost and confused going to see a patient!!!! Had to come home as felt horrendous, couldnt concentrate felt steamrollered and went to bed!! :o So you are not on your own. It's one year since diagnosis. Havent been glutened for a couple of months and this happens!! Big reminder not to get complacent!

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Thank you guys for all replying to me. It's good to know I am not just "over-reacting" or anything and there are others who feel like I do.

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Your screen name sounds familiar from another board.

Anyway it takes like 5 days or so for me, depending on what I ate. I'm kind of sensitive. I feel horrible and have the GI and rashes as well, headaches, brainfog, swelling of joints.

Feel better soon!

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I have been gluten-free since March 2010. I have been glutened twice while eating dinner out and each time I when I looked at the meal (broiled fish, steamed veggies) I just had a funny feeling that something wasn't quite right and it wasn't! I am trying to learn to listen to my internal self and not be quite so afraid to make a fuss if i suspect the meal i ordered isn't right.

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Don't worry, it happens to all of us. I've been gluten-free for just over a month now, and it's a case of feeling great for a few days, accidently getting glutened, feeling crap for a few more days, and the cycle starts all over again. Each time I just ID what I did wrong, add it to my watch list and continue.

Most mistakes are from "spontaneous" things I've eaten, like just having some chips off my DH's plate, or accepting some sweet/chocolate/unknown coffee from a family member or friend. Was particularly upset with the coffee - who the hell puts wheat protein in coffee? Cheap-skate coffee brands :(

The last one was rice crackers that didn't state anything about "traces of gluten" or being made in a factory that manufacters wheat. I should've known that doesn't mean it's safe, and I know the manufacturer makes wheat products, so I definately got some CC there. Even "Gluten-free" cookies can make me ill.

So now I've decided - food is fuel, for now I'm only eating safe food I've prepared, or treats I know are safe (PB and rice cakes that I don't react to, for example). The aim is zero tolerance to gluten, but I don't beat myself up if I slip up, my body does that already, don't need to add to the misery :P

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we eat to live,we don't live to eat. I'm ok with that most of the time...however .... some days I still want to stamp my feet like a kid and want to eat what I want to eat. Then I remember how sick I was. lol Hard to relearn almost 60 years of eating.

And what do you mean coffee?? I know that flavored coffees are not ok, but regular coffee??

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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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