This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I don't have any specific advice. Just sorry you're going through this. Have you discussed your worries with your doctor in detail? He may not realize how serious your concerns are. If the doctor doesn't have any ideas on how to make this surgery workable, you might want to get a second opinion just to see if maybe another doctor might be able to figure out a way for you to have this surgery without worrying about everything else on top of it. There has to be something they can do for you.
Just so everyone here knows, the rant I posted here yesterday was actually split off into another topic and not deleted as a couple people who PMd me thought that it had been. For anyone who wants to find it it was put in the Board/Forum Technical Help area - or follow this link - (removed by Nancy)
Update - I PMd Scott earlier today and he PMd me letting me know that he had removed the thread containing my vent and the susequent fallout and drama. I agreed that that needed to be done because it turned into way more than I ever thought or intended. I just wanted to take the link to the new thread that was created that I put here earlier and make sure it was taken down from this post.
I was thinking about just deleting this post, but I didn't want anyone to think that someone deleted it without my knowledge.
Have you thought about changing the varietal? I started getting really bad reactions to cabernet. It was almost like a gluten reaction, but not quite. When I changed to merlot, I stopped having problems, even with the same wineries I was having problems with from the cab. I have a friend who has the opposite problem, can't drink merlot, but has no problems with cabs. If that doesn't work, maybe try changing from red to white or vice versa.
I'm not as sensitive as you are (I've read your posts in the super sensitive threads), but it's worth a shot..
Yea, it's probably cross contamination rather than the coffee. If you think about it, how many times before finding out about gluten did you think "I just touched some bread. I have to wash my hands before making the coffee." The person behind the counter making the sandwiches and setting out the bagels is probably the same person making the coffee - touching the filter, reaching into the coffee canister, etc.
Unless people touch something like raw meat, they don't even think about something they touched making someone sick.
I'm relatively sensitive. Even though you are having possible reactions to larger amounts of gluten, I think my experience with smaller amounts might be helpful to you.
My big PITA product category is haircare products. There are products that others seem to have no problem with that I react to. But it can take a few days (I'm guessing the gluten builds up in my system?) to really feel the effects. I have found that it's really just a matter of trial and error. All you can do is stop eating it for a while and then add it back in and keep track of any symptoms you might have. If it makes you feel bad it might be gluten or it might not. Either way, you'll know that it doesn't agree with you. If you really feel like you want to know if it has gluten, you can always do one of those test kits. ??
You could always see if you can find a definite gluten free brand and see if you react the same. Or check the archives and see if other people have had reactions to the same brand you're having a problem with.
As far as being not very sensitive to gluten, I really believe that it builds up. My husband refuses to get tested for celiac and doesn't believe he has a problem with gluten, although he's supportive of having a gluten free house for me and the kids. When he's off gluten he definitely feels better and has more energy. If he goes away on a business trip for more than a few days (gluten-o-rama!) he comes back feeling like crud, acting like a jerk and exhausted. So just my observations with stupidly miniscule amounts of gluten for me, and seeing how business trips effect my husband, I think it totally makes sense.
I also had speech slurring before I went gluten-free. It got to the point where I couldn't even read a book to my kids. This symptom showed up when I was already sure that gluten was the problem, but I was waiting for test results to see if it was classic celiac or not. Now that I'm gluten-free, I don't get that symptom unless I'm glutened really badly. Which is all kinds of fun to explain when someone calls in the middle of the afternoon and it sounds like I've been sitting around drinking margaritas since lunch, especially when you're trying to explain why gluten makes your speech slur while you have gluten brain fog. Ugh..
I had a very hard time walking for a couple of years before I found the gluten connection to my pain. I haven't had the money to go to doctors to figure out exactly what may have been happening. I was having lingering problems up until last year when I finally started taking magnesium and the pain went away. From what I read on magnesium deficiency, it can cause muscle spasms and headaches among other things. AND they also say that malabsorption disorders "such as celiac disease" can cause magnesium deficiency. I also came across some information that sodas pull the magnesium from your body too. So with a combination of taking magnesium and cutting way back on sodas, I rarely have a problem. So for my issues, I believe I was experiencing a simple magnesium deficiency secondary to the malabsorption, not a more complex issue like gluten ataxia.
I really think that the assumption that only classic celiac is autoimmune may be a dangerous one to your health if you're considering going gluten-light rather than gluten free. I believe that the type of celiac those of us with negative or borderline tests, but with neuro, mood or supersensitive reactions will eventually prove to be just another form of autoimmune response to gluten. Just remember that 20 years ago most of the "classic celiacs" on this board were told it was all in their head too. I think at some point they will identify different types of celiac just like they have different types of diabetes. We're just lucky enough to have put the connections together before that happens.
I usually know if I've been glutened within 15 or 20 minutes too. I'm glad I saw this thread because I had been thinking about trying Wendy's. I'll stick to the butter, chives and sour cream.
I'll keep it away from my dog though..
I had a dog when I was little that ate a whole chocolate Santa that was wrapped in tinfoil, with a $5 bill wrapped around it with a rubber band and wrapped in Christmas paper. There was nothing left but the bow.
Almost the same thing happens to my hands. Just the backs of my hands including my lower knuckles but not my fingers or thumb. The skin gets all dry and kind of lizardy or something.. And the skin on my knuckles splits (the little cuts). It's reddish and hurts like hell, but I don't remember it being itchy. Mine doesn't flake off.
The first time I ever got this was after I went gluten-free and I had some wheat based vodka. My skin split for the first several days, then started getting better, but it took three weeks for my hands to look normal. It took a few more run-in's with wheat based vodka (because most people can tolerate it fine) before I really was convinced it was the vodka and not some other type of reaction not related to gluten. It always happened within 15 minutes of drinking the vodka and you could sit there and watch it happen. Now when we go out I get either potato vodka or Ciroc vodka (made from grapes). The funny thing is that I don't get glutened otherwise. But myhands feel like they're on fire for a week so it's not worth it at all.
Ever since the first time I got this reaction, it has become on of the symptoms I get when I get glutened normally too. I hadn't thought of whether it was a topical reaction though. Maybe? I always thought that it had to be an ingested reaction, but next time it happens I'll have to see if it's something that might have been more likely to have just gotten ON my skin rather than ingested.
Hey, at least now we know there's more than one of us..
You've got a few things that might be too difficult to digest. Especially since you're super sensitive and your body never seems to get a chance to fully heal. The first several months (maybe even a year or so?) after going gluten-free, there were still a lot of things that just killed my stomach. I wouldn't get a full-on gluten symptom complex with my usual neuro and mood symptoms, but I would get really bad stomach pain. It was over a year before I could eat an apple without my stomach hurting and I still can't eat too many raw veggies like carrot sticks, although I'm fine with salads. You might want to try taking out the salads, the jerky and the granola and see if that helps.
You are KIDDING me!!! That's ridiculous. That's so sad because most of the people here are great. But it gets exhausting dealing with the vocal minority. I agree that it's the only community to find answers. Even when I haven't been an active member, this is the place I go when I need information. But I had been limiting my time here to searching for information and then leaving for the most part.
The thing is that I'm relatively sensitive, but I'm not as sensitive as most of the people on the supersensitive thread. I can eat most gluten free products with no problem whatsoever. But there are some specifically labeled or researched things from major mainstream food manufacturers that get me every time.
I remember watching one of those Food Network shows where the narrator says "the lines are thoroughly cleaned between batches" (I think in this case it was for color changes in candies or something). And then they showed some guy with a hose just standing there casually spraying the equipment down like he was spraying down his driveway on a Sunday afternoon. He wasn't even trying to get into the corners or anything. (WTH!!!). So my fantasy of teams of celiacs going at the corners and seams of the equipment with toothbrushes was completely shattered.
That's cool... I agree completely. I'm not singling out the other person on this thread at all. But I agree. And it is sooo insulting. Like I said earlier, so many celiacs were accused of the same thing for years or even decades. My husband thought I had finally lost my mind when I told him about gluten causing health problems. He told me that I needed psychiatric help because I was obviously doing for attention. Six months later he made a special trip to a store to buy me gluten free stuff for Valentine's Day.
And this isn't a rare story around here. There are people whose lives have changed by going gluten-free years ago and their friends and family still think they've lost their nut.
So people come online to try to find some support or just be around people who have to deal with gluten-free, and they get attacked for being more sensitive??? You'd think that the super sensitive people would be the ones getting pissy with the ones who don't have to worry so much. The people who can tolerate a more varied diet should just be grateful they don't have to deal with an even more restricted diet.
Oh my God!! That is re-freaking-diculous. I just posted my reply before I saw this. Are you seriously going to be this rude to someone who is just saying that this product might be a problem. Obviously this is not directed at you because you don't react to topical product (and again, congratulations - still jealous too). So if this topic doesn't pertain to you, then move on.
I used to be active on this board and I stopped coming, in small part because I didn't like the way things were heading. I was seeing a lot more back biting and I was tired of spending an increasing amount of my time here standing up for with people who were being snipped at for no reason.
I've been lurking around again for a couple of months and I'm glad to be back to see a lot of the old faces, although I've only posted a couple times. But it makes me sick to see how common this type of snide behavior has gotten here. Usually one of the currently active experienced members steps in and says something. But I've really had enough.
Raisin, just ignore her. There are always people like this on the playground. There are a lot of people here who have the same problems with topicals and you and I do. If you're sensitive to topicals that many people don't have a reaction to, it makes me wonder if you are especially sensitive to gluten in general. Do you feel like you're more sensitive to cc in food products too? If you are, you might want to check out the thread for Super Sensitive people if you haven't already.
You absolutely can get glutened by topical products, for the reasons that raisin stated. If this wasn't possible, why would we have to worry about cross contamination at all? It's basically the same thing happening. Gluten on your hands, either from touching a piece of gluten bread, or not realizing you ran your hands through your hair before you used your hands to eat something and you're going to get glutened. Some people just react to smaller amounts than others. That's why the E.U. just passed a restriction lowering the requirements for labeling something gluten-free from 200ppm to 20ppm. That's a huge drop. But they apparently felt it was important enough to create new legislation.
I understand that not everyone reacts to topical products, and like raisin said, good for you. I'm totally jealous. Seriously. But many people do. And anyone who has been gluten-free for a while knows what their particular gluten reaction feels like. Of course there are other things someone can be reacting to, but when someone says it's definitely a gluten reaction, I believe them. I tell people that being glutened is like getting a papercut. I've never actually SEEN paper cut my finger. But there's nothing that feels like a papercut. And that tiny little cut hurts like nothing else too.
I'm going to stop now before I really get on a soapbox.
I haven't tried any of the Feria products. I do have gluten reactions to the products I've tried from Neutrogena's gluten free list. I've tried three or four and I get slammed every time. So whatever trace amounts that are in there are enough to gluten me.
Sorry you're having a reaction. For me even three years after going gluten-free, I still don't have all of my topicals figured out. I think the reason there does end up being gluten in these topical products that are supposed to be gluten-free (and the company probably absolutely believes they are) is exactly why you say. I can't imagine that L"Oreal is going through and dismantling and sterilizing their production lines every time a product is switched. Just like cross contamination occurs that way with food, it occurs that way with topicals. Gluten is gluten.
Have you tried Garnier? I'm very sensitive and I can use Garnier. I use their hair color - Cool Tea, I think the color is called, which is a dark brown. I also use their shampoo and conditioner for colored hair. I don't have any problems and I've been using them for a couple of months. If you haven't tried Garnier, it might be worth a shot. Your mileage may vary of course..
I agree that you need to look into the possibility of more issues, including true allergies, which are a different disease process than celiac.
That being said, the products that you're talking about are products that get all over the place and can be ingested. Some people are extremely sensitive to gluten and have a reaction to virtually microscopic amounts.
Shampoo and conditioner, for example. As much as you think it doesn't get into your mouth, really pay attention the next time you take a shower and see how much rinse water gets into your mouth. Makeup is a hard one to get away with if it contains gluten too. Think about how many times a day you touch your face. You scratch your nose,rub your eyes push your hair out of your eyes, etc. She definitely can't use lipsticks, lip balms and nail polishes that contain gluten. The gluten will absolutely get in her mouth that way.
With these kind of products, it's not really inhaled gluten that's the problem. It's that it ends up in your hands, on your lips and then gets into your mouth because it's on your hands and your lips. Not to say that your wife may not also be reacting to inhaled gluten.
When I first went gluten-free, I thought that I'd be able to get away with keeping my shampoo, conditioner, makeup, etc. But it just made me so sick. I was going through the day trying not to touch my face or my hair. I thought I might be doing okay until the wind kicked up all of a sudden and I ended up with hair in my mouth. Sick for three days. Lovely.
So yes, she really does need to keep away from those type of products. Many, many of us have to.
As far as colognes and aftershaves, that might be a allergic reaction or a super sensitive celiac reaction. But it also might be secondary to how completely sick she feels. Think about the last time you had a really awful case of the flu or a raging migraine that just doesn't seem to want to go away. Everything smells gross and really strong smells make you feel like you're going to throw up or make your head start pounding.
I hope that helps and your wife starts feeling better. It can be really hard to figure out where your personal boundary lines are with gluten.