Len, Gluten turned sweet lil ol' loving me into a dyed in the wool fire breathing dragon lady. I could easily have been an ax murderess. I didn't want anyone to even speak to me & for a long time I could not see what a harridan I had become. Sex? Forget about it!
You see Len, celiac disease affects every. single. cell. in. your. body. And it doesn't matter if we realize how we're acting or not ~~~ it's sort of like you could say, "the gluten made me do it".
The others gave great advice. Both of you should read the newbie 101 & the book IrishHeart suggested. Have patience, we did not get sick overnight & we will not heal overnight. It takes time. But that time will come, I can guarantee you that.
Organic restaurants do not mean they are "safe" restaurants for you. You can get as much cross contamination there as anywhere. Since you live in SF & there are many options for you then I would suggest you ONLY eat at totally gluten-free restaurants. Then you don't risk getting cc.
annajazz, Your question was how do we deal with the server? The first thing wrong with your question is that you seem to think the server is the only person you have to worry about. That's the first mistake. You have to worry about every single person who works at that restaurant & enters the kitchen. You not only have to worry about the chef & other cooks who are on duty while you're there but the chef & other cooks who took the shift prior or even the day prior. There are 1001 ways to get cc'd in a restaurant.
gluten-free Lover (Colleen) was not being insensitive in the least! She was trying to help you & teach you. If helping & teaching is insensitive then count me insensitive also. Colleen was being caring & trying to protect you. It was insensitive of you to throw that back in her face!
I have worked in restaurants (some of them very upper crust) & been back there in the kitchen. I know what goes on back there & it isn't pretty! It is disgusting even when one does not have to be gluten-free or does not have severe allergies to foods. Employees putting their fingers in foods & taking bites b/c they are hungry & don't have time to eat or just "feel" like tasting this or that. I have seen butter come back from tables that got scraped into a big bowl & then used in the mashed potatoes or to fry eggs in. No, they aren't supposed to do these things but sister, if you think for 1 minute that stuff doesn't go on then you need to think again. Spoons or spatulas dropped on the floor, picked up & used; maybe they got wiped off on a filthy apron. I could go on & on with what goes on in the kitchen alone.
And then there's what goes on outside the kitchen that you can see if you observe long enough. Wait staff putting their fingers in drink glasses to pick them up 4 or 5 at the time to clear a table & then turn around & come right back out of the kitchen with their fingers on the rim of YOUR drink. How many times pre gluten-free did my hubs & I find lipstick on our glasses? It may have gone through the dishwasher but there was still lipstick on them when we got our drinks served in them. Silverware with fingerprints on it or dried food particles on it. What is laying on my plate beneath the food that is piled on it? I can't see it so I don't know.
Your life changed forever the day you were dx'd with celiac disease. Please wake up & realize that fact. You can not safely do the things you used to do. None of us are happy about that but we deal with it & are thankful we don't have some disease there is no treatment for. Annajazz, please realize I'm truly only saying this for your good. Eating out now is very serious business & you need to realize just how serious it is & how easily you can get cc'd. Eating out is playing Russian Roulette every single time.
The others have given you great tips for dealing with the eating out thing. Call ahead & explain you have to bring your own food & you will find most restaurants agreeable. Eat before you go. Have a drink & enjoy the company. Treat yourself with something special to eat when you get home. Carry snacks always!!!!! But please don't think you only have to worry about the server or the ingredients list on a particular BBQ sauce. There are 1001 ways to get cc'd.
Ohhhhhh, nooooooo, steriods, topical or oral are no nono !!!!!! Especially the oral!!!!!! They will help a lot but the second the steroids are withdrawn the rash will punish in SPADES!!!!! You don't want to put her through that hell.
This stuff is a bitch!!!!
It can take 2 years or more for the antibodies to get out of the skin. We are all individuals & there is truly no set time. I'm sorry. So very sorry to tell you that but .......
I'm coming up on 2 years sooooooo strict gluten-free on Dec. 1st & I'm still having the rash BUT I'm 3000 times better than I was.
Dapsone..... is she allergic to sulfa drugs? Dapsone is in the sulfa class. There are many side effects. Blood monitoring should be done. It can make her anemic. Do your research before you decide to do that.
I'm having major computer problems (repeatedly crashing) & am trying to fix it so I'll have to be brief. IMO that's dh!!!!!
If you had been gluten-free when the biopsy was done then OF COURSE it would come back inconclusive or negative. If the biopsy was taken directly ON a lesion then it was done wrong & OF COURSE it would not be positive for dh. Damn doctors who don't get it!!!
For most of us, iodine makes the rash go bonkers. It's like throwing lighter fluid on hot coals. The soy most likely has carageenan in it which is insane with iodine & milk has a lot of iodine too. Try a low iodine diet for two weeks. See http://www.thyca.org.../lowiodinediet/ for low iodine diet (of course cut the gluten).
The rash can present anytime until all the antibodies are out from the skin. The antibodies get deposited under the skin for those of us with dh. So she can have the rash until they all get gone. Also, you need to be rabid about cross contamination b/c the rash is ultra sensitive to the tiniest amount of gluten.
Read a whole bunch of threads on here & that will be your best source of info.
NSAID's make the rash flare too.
If I don't crash into oblivion & can get this thing fixed then I'll be back in the next few days.
Abby has been a very quick learner so you can bank on what she says!
It could have been something you ate like the feta (iodine) or it could be nothing you ate. This darn rash will vex you to no end!!! I have no idea if artichokes are high iodine or not. I haven't seen them on any list but something in my gut is telling me they may very well be high iodine. Just guessing mind you.
An example for you is this:
I have been squeaky clean, strict, 200,000% gluten-free since 12/01/11 & was low iodine from around Feb or March of 2012 all the way up until 9/10/13 & I STILL have the rash. It has improved 1000% but I still have it & it will flare & recede, flare & recede as it pleases. It used to make me nuts wondering what had set it off since I was so pristine in my diet. I would question if this or that made the rash flare, does it not like chocolate? does it not like tomatoes? does it not like..... & the list was endless. I don't drive myself nuts anymore. IT does what it wants & at times there will be a pattern of days you can sort of count on but in the end, bottom line, it has a mind of it's own & will do it's own thing regardless. The only control I have is to be certain I am not getting any gluten from any where. I also know that stress has a big effect on my dh. When I quit worrying about what had set off the rash this time or that time; I have done better. Accept that you only have X control over it. I am improving but it's like baby steps, very slowly & sometimes it even seems to go backwards but you just make sure you are not getting any gluten & forge ahead. One day we will be on the other side of this. Some of us sooner than others but 1 day we will ALL be on the other side.
First let me tell you about NSAID's. They are known to make the rash flare. Some of us can use Tylenol but personally, i have to really monitor my use of even that. I used to couldn't take it at all w/o a flare & now almost 2 years gluten-free, I can take it in strict moderation. There is a product called Arnica gel (OTC) that 1 can use for muscle aches etc.... as it's not an NSAID.
I'm really glad to hear your doc thinks gluten was triggering the asthma ~~~ I was just thinking about that & wondering so maybe (let's hope) that's the case & you won't have to deal with being caught between a rock & a hard spot.
Well, "officially" the med professionals say that topical gluten will not hurt you. But those of us with dh have a different story to tell. We get lesions, & that's an opening in the skin & where there is an opening in the skin, gluten can get. That's the way I look at it. And I will say that I am not a reactionist. I really try to look at things logically & not just freak out. Shampoo ~~ it can get in your mouth as can conditioner you use or anything else you put on your hair. Lotions ~~ you touch your leg & then later maybe put your hand on your lips or whatever. I don't use any topical products w/ gluten. Sorry, don't care what anyone else says about it. I can't afford to have this rash punish me anymore than it already has/does. I'll challenge anyone who says different b/c until you've experienced this rash, you will never fully know the hell it is. My dog is also gluten free. Why? I kiss my dog. Yep, I do. My dog licks herself & I kiss places she may have licked. So she's not eating anything with gluten in it. Grain free dog food. Also her shampoo is gluten-free. The rash is unbelievably sensitive to the tiniest amount of gluten. i can not stress that enough! You need to get absolutely vigilant not to get cc'd now. Do yourself a favor. It's not fun but I guarantee the alternative is far worse.
And, I haven't seen any medical studies that tested celiacs with dh using topical products with gluten in them so they are just talking out of their hats on that score & until they can prove it with valid studies then I will continue the course of gluten-free topical products.
I may or may not have a topical wheat allergy?????? Sort of????? but long before (years) I knew I had celiac & dh, I quit wearing makeup. When I wore it even for an hour, i would get itchy, puffy flesh. I now use gluten-free makeup & have no problems. Nuff said?
I think most of the dh sufferers that did try Dapsone & could not tolerate it (side effects) as well as those who did fine on it do not visit the site anymore. I will say that from my experience on the site; the majority who tried it had side effects too badly to stay on it. I have never tried it & don't believe I can b/c I'm allergic to sulfa drugs as is the case with many it seems.
Also, from my experience on here; pretty much 100% had crazy bad, bone deep itch. You can't sleep @ night & if you fall asleep you will be woken in short order from the itching. It's just insane!!!!
I found a couple links for you re: the steroids affecting biopsies. The biopsy is looking for IGA deposited under the skin which is what the rash results from. These links refer to steroid use affecting the IGA in the celiac blood work & state 1 month. The skin is different & would take longer (just as it takes longer to get the antibodies out of the skin) to get out of the skin. But judge for yourself.
Blaze, I am on limited time at the moment so will answer what I can in a quickie session for now.
DH is intensely itchy, so itchy it consumes your entire mind, so itchy it is called the suicidal itch. It's a 30 on a scale of 1 to 10. Having said that; i will say that we don't know everything about dh. Perhaps, just perhaps you have dh & it's in the infantile stages & perhaps, just perhaps, the intensity is less in the infantile stages for some people. I will also say that celiac disease is associated with any # of skin conditions/rashes.
Steroid use within 2 or 3 months, either topical or oral will cause a false negative in either skin biopsy for dh or in celiac blood panel. I can provide links to back up what I say but will have to find them as I am a poor bookmark organizer so will have to check back later with those links.
As to your #3: Personally, I'm not so sure about those patch tests but that's just MHO. You could use latex gloves for 30 years & have no problem & then 1 day you develop an allergy to it. Especially if you have celiac disease. We tend to develop allergies to things.
As to your #4: I have read the same thing. In MHO I don't think that would cause migrating rashes.
As to your #5: I am concerned when you say "avoid" gluten. If you are going to test it then you can not just avoid gluten; you have to be rabid 1000% gluten free otherwise you are wasting your time. And I will warn you that if you find you still believe you have dh & want to do a gluten challenge then you may break out like never before. Also, you will have to be actively consuming a normal gluten diet (not a light gluten diet) in order to have a dh biopsy done.
I read your post on the Dapsone thread yesterday & was going to respond but unexpected events occurred here which prevented me from responding prior to now. I agree with the testing the derm wants to do before & while you are on Dapsone. Those are good things!
You mention the rash appearing one week on 1 clavicle & the next week on the other. DH does like to present bilaterally or "ghosting" on opposite sides of the body in the same location. But it doesn't always present that way.
But you guys have to take that post, written by foam, about the 20 years, in context. Foam said they have been getting smashed with the rash for 20 years.
ALSO STATED THAT THEY HAVE BEEN STRICT gluten-free FOR 4 YEARS.
So the previous 16 years do not count. Of course you're going to have the rash as long as you aren't strictly gluten-free. Having said that, the fact that foam was having the rash for 16 years before going strict gluten-free could well be the reason foam is still having the rash after 4 years gluten-free.
Abby, the longer I go, the flares are smaller, fade faster & itch less.
ABSOLUTELY! MY HUSBAND & I BOTH TAKE IT EXTREMELY SERIOUSLY. And we both happen to be some of those that Barty talked about who have dh. I'm not saying celiac disease without dh is any less serious than having dh added into the mix but dh sure will make you wake up & smell the roses!!!!!
And I choose to help people who come here, especially to the dh forum, because when I needed it, there were those here who helped me & I wish to pay it forward but those are not the only reasons..... I also have a real desire to help those who have dh & are maybe not as bad off yet as I was/am. I hope to help them understand what lies in store for them for years if they do not take the diet seriously & to help them understand that going gluten-free is not a magic, instantaneous cure for dh & to help them understand why dh will/can hang around so long after one is gluten-free.
I can't tell you how many celiacs who have been gluten-free for years have come on the dh forum with the rash after having gotten accidentally glutened. I will say that it is very difficult to have any sympathy for those who come on saying they cheated with a smiley & crying the blues because they now have dh.
It doesn't sound like dh. However, I won't say it isn't pre dh. DH is insanely itchy --- absolutely drive you nuts, make you want to peel your skin off with a knife, insanely itchy 24/7. And dh doesn't present & then the next morning you are fine. What's happening to you doesn't add up as dh; at least not at this point in time. What is pre dh & could it be that? Quite frankly I can't say. There are no med texts or studies that I have found on the subject of pre dh.
GFinDC is right though. Ppl with dh test false neg. on the celiac blood panel 60% of the time. Also, DQ2 & DQ8 are not the only celiac genes as some studies have shown. They are by far, the most common but there are studies out there that have identified other genes, mostly ppl in other countries, or from other ethnic backgrounds.
One thing is certain though --- you have a problem with gluten. We have a saying:
If it makes you sick, don't eat it.
I wish I had better answers for you livelaughlove but I don't. And I wouldn't be so quick to think the problem lies with some other protein in wheat. Tests can be mixed up, screwed up, performed incorrectly, ordered incompletely, interpreted incorrectly, & are not reliable 100% of the time. You are having a reaction to wheat ---- period. Your body is verifying that & that counts more than all the tests in the world.
RFJ, have you been eating gluten all along while taking Dapsone? You say it's impossible to eat gluten-free with your work schedule. How so? Do you realize that every time you eat gluten your villi are being damaged among other things? I'm not honking on you; I just want you to understand what you risk & maybe we can help you figure out how to eat gluten-free with your work schedule.
You hit the nail on the head when you say this is such an emotional roller coaster!!!!!!!!!!!!!!! It screws with your head as much as it screws with your skin. And you get better & then you get a flare & you wonder if this did it or if that did it or if somehow you got a molecule of gluten or, or, or, or, until you're insane which stresses you out & then you flare worse. Been there, done that. Even now sometimes I do that but it's rare b/c I have learned that this stuff has a life of it's own & as long as we're eating gluten-free & being very careful about it then it isn't what we're eating --- it's the rash being it's infuriating self. In addition to being gluten-free & low iodine, I ate low salicylate (sals) for 9 months b/c I thought sals were making things worse. Nah. I flared, I got better, I flared, I got better, I flared until 1 day after 9 months of such a limited diet I said, "Screw it! I'll eat sals & find out!!!" I ate sals & nothing bad happened to me; nothing that hadn't been happening all along so I have been eating sals since.
I certainly don't want to depress you but I need to tell you of some of the experiences of others who have been on here & no longer post. Some have gone 3 years but when I say that; they said they still get 1 or 2 blisters or lesions. Some have gone less than 2 years & been fine. Some have gone only months (lucky ducks!) & cleared up & been fine. I am now 20 months & I only wake once most nights itching but it's not that bone deep itch & I am able to go right back to sleep. Blessed sleep! There are nights when I don't wake at all. YAY! But I can tell at 20 months in that unless some miracle happens & this stuff leaves me overnight; I will be over 2 years & still dealing with this. Such is the way of it for some of us. I can say that it's been 5 months since I had that scratch right down to your bones itch. That's major progress! I now go for hours at a time without itching. There are days when I don't get a new blister or "bite". Lately it seems to have set up a real pattern (which was NOT the case until around April) where I seem to flare for 2 days & then start calming way down on the 3rd day & then the next day I will be really healing with no new places & I seem to go 3 days that way & then the flare again & so on & so forth running in 3 day increments.
It takes longer for some of us. I am 1 of those. But I can now see the end of the tunnel & there IS light.