Gluten Dude

Are you aware that today is National Celiac Awareness Day?

Are you aware that Celiac Awareness Month was in May?

Are you aware that makes no sense?

Are you aware that to lose 10 pounds, Lady Gaga gave up the gluten-free diet and shaved her head instead?

Are you aware I’m on day 9 of the Whole30 Program?

Are you aware that means I haven’t had coffee or alcohol in 9 days?

Are you aware how cranky that makes me?

Are you aware that many celiacs have a hard time getting their health completely back, even after going completely gluten-free?

Are you aware that I’m one of them?

Are you aware how much that sucks?

Are you aware that I’m ok with it; I just need to learn to deal with it better?

Are you aware that they’re closing my pool for the season outside as a type this?

Are you aware how sad that makes me?

Are you aware he just came to the door for payment? Holy crap, that’s expensive.

Are you aware that 1.6 million people who are on a gluten-free diet don’t have a diagnosis of celiac disease?

Are you aware that many of those 1.6 million still suffer from gluten intolerance?

Are you aware that I hate small talk but I think it’s one of the most important skills you can have?

Are you aware that Wendy’s offers a gluten-free menu, but in small print it says “During preparation, item may come in contact with other gluten-containing food items”?

Are you aware that any celiac shouldn’t come within 100 feet of a Wendy’s?

Are you aware that some of my favorite people on this planet are those in the celiac community (give yourselves a bow)?

Are you aware that I often question why I write this blog and if I am really helping anybody out there?

Are you aware that I seriously need to work on my self-confidence?

Are you aware that gluten-free sales reached more than $2.6 billion by the end of 2010 and are expected to exceed more than $5 billion by 2015?

Are you aware that I haven’t napped in over a week?

Are you aware that I have a guitar sitting next to me in my office and I can’t find 30 minutes/day to play?

Are you aware that I suck at guitar?

Are you aware the Dudettes are the best girls a father could ask for?

Are you aware that I’d probably be in the celiac looney-bin if it wasn’t for the love and support from Mrs. Dude?

Are you aware that celiac disease does not define me; it’s just a part of who I am?

Are you aware that this post took me an hour to write???

150 thoughts on “It’s Celiac Awareness Day. Are You Aware?

  1. As a newcomer to the scene only a month from diagnosis, I am thankful to have people like you sharing their knowledge, care & candor about this life changing disease! Happy Celiac Awareness Day Gluten Dude..

  2. Dude, Don’t EVER question whether you are helping anyone out here…cuz you ARE!!!!! I have recently (probably a couple of months or more) started following your blog and I will tell you that I think you rock!!!!!! I will MOST DEFINITELY agree with you about the nut house though!!!!! I would be a permanent resident if it weren’t for my husband doing ALL of the grocery shopping and supporting me and my CD!!!!!! The last time I went shopping I didn’t read the label good enough and I got sicker than a DOG!!!!!!!! So….THANKS DUDE for all your knowledge, support, sense of humor, and most of all for letting us share our woes with you and being such a great “listener”!!!!!! LOL!
    Hugs my friend!

  3. Dude, I am NOT going to wish you a happy Celiac Awareness Day, because it would be happier if we didn’t HAVE to have a Celiac Awareness Day (or month, or year, or mascot, etc.). But since we do, I just want to say keep on keepin’ on. You do great things for our community, and this cranky celiac appreciates it:)

  4. Are you aware that every person you actually hear from probably represents a dozen (or more) that you don’t – yes you are making a BIG difference out there, never forget that!

  5. Dear Gluten Dude and all others who share on this blog -

    You are so important to me. I don’t comment much but there are days where I want to see a new entry pop up from you because I am it makes me feel better when I read how everyone feels today and if they are sharing anything new today. It helps me more than words can say to know that others are struggling and sometimes frustrated and I am not alone! I will go with “are you aware that I feel so blessed to have found such a GREAT and insightful group of people?”

  6. Are you aware that you touch lives in a way that is unique, educational, off the wall, sensitive, truthful, a true journey through the ups and downs that all of us face dealing with our health and the GF diet. Your thoughts and comments reach to the heart of the matter and enable us to either nod our heads in agreement or shake our heads at the absurdity of what we observe related to this disease. You make us feel not quite so alone or confused as we wrestle with the complexities of health and diet that confound us. Thanks for sharing! AND Happy Celiac Awareness Day!

  7. are you aware how much your blog makes a difference in the life of Celiacs?
    But on a serious note, that’s bad news about Wendys. I usually eat there when I’m on the road because it’s the one place I thought I could count on for a quick bite. I stopped eating the baked potatoes, though, because I’ve seen them touch them after handling bread. I tend to get only chili, frosties and sometimes plain garden salads (no dressing). I don’t see how gluten can get into the frosties if they come straight out of a machine. But what about the chili and plain salad? Sigh, this is making me nervous…(as you might recall, I don’t get sick if I get glutened so I have no way of knowing whether I’m consuming it or not).

    • re: the frosties

      It depends on if your Wendy’s is one that puts the cake in the frosty mix before blending it, or crumbles the cake on the outside for the Strawberry Shortcake Frosty.

      The first one, its a cc risk, depending on how often and well they clean it. The second is a training issue and as long as you can watch them do it and make sure they’re not rubbing crumbs all over it, you’re more than likely fine. Of the 3-4 Wendy’s I’ve been to, only 1 of them is like the first one, but you still have to ask.

      Again, with any restaurant its a case of interrogate, interrogate, interrogate, and make your own choice. I do Wendy’s all the time and have 0 issues – but my Wendy’s is run by a woman with a celiac daughter, so she gets it and trains people accordingly.

    • Sorry, but I don’t advocate any fast food joints for celiacs. A bunch of kids working in tight quarters. Just waiting for a gluten disaster.

  8. Are you aware that before I ran across your blog, I was blaming myself for not being better?
    Yes, I’m 100% better than I was pre-diagnosis, but I’m not really better… and I thought it had to be my fault, because all anyone talks about is how they got the diagnosis, went gluten-free and suddenly were free of all their symptoms, full of energy and pooping unicorns? ;)

    Are you aware that you have gathered the best group of gluten free folks I’ve ever found? Are you aware that we are all here, and all “together” because of you?

    Thanks, Gluten Dude.

    • “pooping unicorns”…that’s gotta hurt.

      Thanks Ellen. That’s the main reason I started my blog. The blogs I was reading weren’t dealing with the reality I what I was going through.

  9. Wow, are you aware that today is also my birthday? So my birthday is Celiac Awareness Day – hmmmm. I really hope I don’t get TOO aware of celiac today!
    On a good note, my daughter (whose birthday was yesterday) and I found a fabulous GF chocolate cake recipe and I get to have chocolate cake for my birthday breakfast and it is divine!

  10. Hey Dude,

    I’m doing my MBA class project business plan on a gluten free bakery, and I’ve seen that stat before about gluten free sales. Where did you find it?

    The reason I ask is that I’m finding a lot of sites citing that number…but they’re including naturally gluten free foods like apples and potatoes and such in there.

    oh yeah…go take a nap! :-) Happy awareness day!

  11. Are you aware that this little blog of yours is probably responsible for saving the sanity of many people with gluten issues? Well, you should be!

    Are you aware that sharing your recent health issues that don’t seem to want to go away really helps those of us in the same boat to feel not quite so alone? Well, you should be!

    Are you aware that you need only 5 minutes/day practicing the guitar to become better at it than you are now? Well, you should be!

    Are you aware of the awesome gluten-free community that’s grown up around your blog, sharing with you and with others, and how that probably wasn’t the point of the blog in the first place but ended up being the point? Well, you should be!

    Are you aware you can print out these wonderful, comforting, uplifting comments, post them where you can see them and never have to worry about your self-confidence again?

    : ) Thanks, Dude, once again an awesome post!

    • Can’t even respond Lisa…such awesome comments.

      I am indeed a work in progress.

      And yes, dammit, I will play guitar every single day…even if it’s only for a few minutes.

  12. Dude, you haven’t napped in over a week? That’s marvelous! Is it because you are feeling better doing the 30 day cleanse?

    Thanks for the smile today. I was aware of some of those things, had assumed others and you educated me on some today too!

  13. GD, are you aware that I came across your web site feeling totally abandoned by the medical community out here, and now I feel like I have support.

      • I forgot to mention that we will have to make sure the girlz can add the math for the “security question,” which would mean adding up coconuts, while on the beach.
        :-)

    • when you finish your 30 day, hop on that plane! we can home school the little darlings, ….and your wife can relax at the beach, while they are home schooled.

      (home schooling here means you go to the beach and snorkel, make flower leis, learn how to play the ukulele) right into your guitar time.

      learn how to dance and chant.

      not necessarily in that order.

  14. Are you aware that I am now aware that it is Celiac Awareness Day?

    You are awesome! This post makes me feel better about not feeling better. No matter how hard I work to stay GF, it never really feels 100% better.

    I’ll be following you from now on :)

  15. I’m VERY aware of Celiac today.. was accidentally glutened on Sept 1 and I have the DH everywhere (itchy, itchy), and my joints all hurt (still)–all after the initial reaction. I feel very damaged… and I’m not 100% better either (been gluten free since 2008). I’ve pretty much given up on restaurants.. every time I eat out I end up sick.. sigh..

    • Laura, I can understand the frustration, same for me, got “glutened” and got the DH, plus asthma is back full swing….this is after my gut has calmed down….been 3 weeks ago or so. I’m not eating out anymore, unless I have to.

      • my asthma is back too. and how is this single mom supposed to meet someone wonderful and date without being about to go out to restaurants? nothing is easy for us. nothing..which doesn’t make everything bad.. just hard won.

      • that’s what I was told… just give up gluten.. bastards make it really difficult! Envelope glue, vitamin E, glue on packaging around tea bags…. etc. etc…

        • Laura, there is no gluten in envelope glue or in vitamin E (or it will be labeled “wheat” )and not any in/on teabags either.

          Some tea has malt added to it–but that’s mostly in Europe.

          These are just old “celiac myths”.Cheers!

          • sorry, Irish.. you are wrong.

            I checked with the company that made envelopes I had in my house and wheat IS a part of the glue.

            Same for vitamin E.. mixed tocopherols, Alpha Tocopherol Acetate, D-Alpha-Tocopherol.. whatever they’d like to call it.. the most abundant source is derived from wheat germ oil, although, in America most is derived from soybean.. but that’s MOST, not all.. I’ve checked with many companies, and don’t use the products from the ones that don’t know. Those little strips on razors that have caused me countless rounds of DH.. vitamin E is the culprit.

            The tea thing? I don’t know. I use loose, or bags that are crimped not glued, and not individually packaged so I never checked. I was just told this by a fellow Celiac.

            Celiac.com also still lists tocopherols.. not sure who told you this was a myth?

            • regarding envelope glue:
              http://celiacdisease.about.com/od/celiacdiseasefaqs/f/EnvelopeGlue.htm

              There is no gluten in envelope glue, according to the international Envelope Manufacturers Association. The Association’s website says: “Remoistenable adhesives are derived from corn starch and do not contain wheat or rye gluten.”

              Furthermore, in the Fall 2007 issue of Gluten Free Living, Amy Ratner reported, “There are actually only a few envelope glue manufacturers in the United States. National Starch & Chemical, a New Jersey company, is one of the largest adhesive suppliers in the world. A company spokesperson says it makes its glue from corn, which is gluten free.”

              As for stamps, a Post Office spokesman told Ratner there’s no gluten in stamp glue either. At any rate, the ingredients in stamp adhesives are much less of an issue, since the vast majority now have pressure adhesive glue and can be pressed onto your mail without the need to lick them.

              (And I did just say “if the product contains wheat germ oil (in mixed tocopherols) it will says contains wheat” ) Thank goodness for food labeling laws.

              I am not trying to argue with you, hon—just trying to help. As with anything I say, please, feel free to ignore it. You should always do whatever you need to do as far controlling your symptoms –just as I do–but the gluten in envelope glue and glue in tea bags thing?–is just not true.

              • re: highly refined oils (such as wheat germ oil) I should clarify that this disclosure will apply only to FOOD and vitamins and Tricia Thompson, a highly respected gluten free advocate and dietician writes:

                “D-alpha tocopherol is derived from vegetable oil, most often soybean oil. D-alpha tocopherol also may be derived from other oils, including wheat germ oil. This has caused some members of the gluten-free community to be concerned that d-alpha tocopherol may contain gluten.

                Important points to keep in mind

                Under the Food Allergen Labeling and Consumer Protection Act, highly refined oils and ingredients made from highly refined oils are exempt from allergen labeling.

                The U.S. Department of Agriculture has the following to say about highly refined oil, “Highly refined edible oils are the result of processing that involves de-gumming, neutralizing, bleaching, and deodorizing the oils extracted from plant-based starting materials, such as soybeans and peanuts. Refining improves the quality of plant oils by removing undesirable free fatty acids, gums, and phosphatides, imparting uniform color and eliminating undesired odors to make the product acceptable from the sensory perspective for human consumption.

                “A benefit of refining edible oils is that the refining process renders them virtually free of allergenic protein according to information provided on the Institute of Shortening and Edible Oils website. According to the Institute of Shortening and Edible Oils, the vast preponderance of edible oils consumed in the U.S. are highly refined and processed to the extent that allergenic proteins are not present in detectable amounts.

                Scientific studies indicate that refined oils are safe for the food-allergic population to consume.

                In contrast, mechanical or “cold press” extraction of oils from plant materials may not remove all protein. However, cold-pressed oils are rarely used.”

                In other words, if wheat germ oil is highly refined it doesn’t appear to contain much in the way of residual protein. (Nonetheless, I do not recommend eating wheat germ oil) BUT, we are not talking about ingesting wheat germ oil but an ingredient isolated from the oil via extensive processing.

                According to the European Food Safety Authority, this processing includes solvent extraction, distillative neutralization and precipitation, purification, and separation. (On a related note the European Food Safety Authority has permanently exempted from allergen labeling d-alpha tocopherol derived from soybean oil.)

                Oils that are not highly refined as well as ingredients made from such oils are not exempt from allergen labeling.

                Therefore, if a food or supplement includes as an ingredient vitamin E derived from wheat germ oil that is not highly refined, and the vitamin E contains wheat protein, the word wheat must be included on the label, either in the ingredients list or Contains statement.

                The Food Allergen Labeling and Consumer Protection Act does not apply to personal care products. Allergens, such as wheat protein do not need to be declared in these products. If you see d-alpha (not dl-alpha) tocopherol in the ingredients list of a personal care item you might ingest, such as lipstick and you want to know whether it was derived from wheat germ oil, you will have to contact the manufacturer and ask.

                Keep in mind that most vitamin E appears to be derived from soybean oil and most edible oil in the U.S. is highly refined. Even if unrefined wheat germ oil is the source of vitamin E, the amount of protein in an ingredient that is extracted from oil is likely very low. Furthermore, the amount of vitamin E added to a personal care product is likely low and the amount of a non-food item you are likely to ingest even lower.

                For more information regarding edible oils and allergens, see the website of the Institute of Shortening and Edible Oils available at http://www.iseo.org/faqs.htm#faq6

                Copyright © by Tricia Thompson, MS, RD

                I hope this helps?

  16. I have a guitar too, sitting next to my computer, and I also never find time to play. And yes, I too suck at the guitar, but I still love it. I love reading your posts, Dude, they always make me smile, even if I am shaking my head at the absurdity of it all. Good on ya mate, from all of the sillys down under.

  17. Are you aware that I come to this blog to feel understood?! It’s nice knowing that there are other people who feel exactly the way I do about Celiac Disease!

  18. Are you aware that I live in Florida (for now .. You may need to coms fast) and I have an awesome neighborhood pool? You, Mrs. Dude and The Dudettes are welcome!

    PS I may find a need to cheat this weekend. It’s been a Gluten Intolerant rough one.

    • If we are ever down there, I will definitely take you up on the offer.

      And no cheating. 20 days to go. But boy am I tempted too.

      • I’m almost at my 14 day Point so not turning around. This week I found out I’m allergic to potatoes and chicken… What’s next? But nothing was harder than cutting gluten .. So moving on.

  19. GD……I love your site and have now made it my nightly ritual- right after I check Wayne Dyer’s blog! Lol! You were meant to come into my life right now as I have CD and have been gluten free for about 7 years. However, I don’t feel well much of the time. I was just beating myself up today as I ran to the bathroom for the 5th time his morning ( I am a teacher so you can imaging the challenge I have getting someone to cover my class so I can go to the bathroom! ) I just really pray and wish every night to figure IT out! Such a struggle- thanks for the validation that CD sucks!

      • I will change the order of my blog reading if you keep writing :) !
        So sorry about my typing errors last night! When you are a teacher it is embarrassing!!! However, I blame it on the late night and glutenized fog my brain is currently in.

        P.S. Wayne Dyer and CD are NOT related! Lol! I need his blog for my mental state to help deal with the CD!

  20. Hi GD. I only started following you a couple of months ago. I was diagnosed at the beginning of the year and still feel a bit lost/angry/scared/sad. I really enjoy reading your posts and this is my first reply because of your comment wondering why you write this blog and if you are helping anyone out there.

    Oh my goodness! Please don’t stop. You help people feel less lost/angry/scared/sad. You certainly do help, educate and have me laughing like crazy. You make a huge difference by bringing us all together in this celiac/coeliac “family”.

    Thank you for doing what you do.

    Tracy
    New Zealand

  21. Are you aware it is true about helping loads of folks beyond those who comment?

    I’ve finally decided to come out of lurking to say thanks.

    You are AMAZING. I wondered if it helps you to be focusing on this charming disease all the time. I think I got my answer – it’s not like you get a day where you forget anyway. And this way YOU have created this awesome community.

    By the way, I gave up alcohol 7 years ago (pre diagnosis -I used to get this rash and feel sick on my wheat beer…). It gets easier.

    Hugs for the Dude x

  22. Are you aware that I was aware it was “celiac awareness day” yesterday (because the sweet people who own the GF cafe told me this nugget and we all laughed and said we are aware of it every moment of every day), but let’s celebrate (whoohoooo) and have cake and I did and I am VERY aware that this food item is not on the whole 30 list and so, in full disclosure, I confess to eating a slice of heaven with buttercream and raspberry frosting and I hope this does not mean I am voted off the island? :(

    I had been to physical therapy (something that always make me EXTREMELY aware of celiac disease since it is the reason I spend hours in muscular rehab ….and I am thinking maybe i can get a pass on the cake ? please?…if not, I understand (but obviously, I am going for the sympathy vote big time here….:)

    and are you also aware that I enjoy you and all the good peeps on this blog more than words can say. I have even spoken with Aloha Julie on the phone a few times, so you see?–you have turned unicorns shooting out of our butts into blooming friendships.

    You’re magical, Dude.
    ;) who loves ya baby?

  23. I wasn’t aware that I was supposed to be more aware yesterday! Life didn’t leave any room for additional awareness.

    But I never lose awareness for this unicorn shooting, awesomesauce blooming community that you, Dude, have created.

    Thank you.

    It’s a magical island, an oasis of support in a wheat laden world. No contest, no voting off, no GLUTEN!

    If yesterday was Celiac Awareness Day, let’s claim this month as Gluten Dude appreciation Month. Let’s cheer him through the next 20 days!

    • I’m with you, GFreek!!

      Pom poms at the ready….okay!…..GO Dude GO! show ‘em what you know,,,yaaaaaaaaaay Dude!

      and IH does a jump and a split …..whoohooo

      I still got it.

      • That I can get totally behind!!!
        Hooray for Gluten Dude … and cheering you through this whole 30 day experience – what is left of it! Thanks for the inspiration!!!

        Are you aware …. that having Celiac Disease can make you feel like you are a day late and a dollar short for most everything? ha ha that’s why as Celiacs we need a WHOLE month dedicated to Celiac Awareness … not just a day … missed it ha ha …

        A sincere thank you to Gluten Dude for starting this blog and to all those that support, comment and read … it’s nice to know you are all out there somewhere! :)

        Cheers :)

  24. Dude and Guders (gang of Dude followers)

    On Day 31, let’s get together and make these Gluten Free Jose Cuervo Cookies. Read through–it’s an easy peasy recipe! :)

    1 cup of water
    1 tsp baking soda
    1 cup of sugar
    1 tsp salt
    1 cup of brown sugar
    4 large eggs
    1 cup nuts
    2 cups of dried fruit
    1 bottle Jose Cuervo Tequila

    Sample the Cuervo to check quality.

    Check the Cuervo again, to be sure it is of the highest quality,
    pour one level cup and drink.

    Turn on the electric mixer. Beat one cup of butter
    in a large fluffy bowl.

    Add one peastoon of sugar. Beat again. At this point
    it’s best to make sure the Cuervo is still okay, try another
    cup just in case.

    Turn off the mixerer thingy.

    Break 2 leggs and add to the bowl and chuck in the cup
    of dried fruit.

    Pick the frigging fruit off the floor.

    Mix on the turner.

    If the fried druit gets stuck in the beaters just pry
    it loose with a drewscriver.

    Sample the Cuervo to check for tonsisticity.

    Next, sift two cups of salt, or something. Who geeves
    a shyte. . Check the Jose Cuervo.

    Now shift the lemon juice and strain your nuts.

    Add one table.

    Add a spoon of sugar, or somefink. Whatever you can
    find.

    Greash the oven.

    Turn the cake tin 360 degrees and try not to fall
    over.

    Don’t forget to beat off the turner.

    Finally, throw the bowl through the window, finish the
    Cose Juervo and make sure to put the stove in the wishdasher.

  25. You know what I became aware of yesterday?? That most canned tuna packed in water also has(in small print) vegetable broth and soy!

    Well there goes another naturally gluten free quick safe snack when I am on the road..?

    Why oh why add gluten??
    I am assuming the soy has gluten, and probably does, now this answers why my belly acts up sometimes, so another item to come off my list, right now I only found that, Chicken of the Sea, White Premium Tuna in water, a silver can, does not have the vegetable broth.
    So fustrating.

  26. Donna,

    I buy Bumble Bee Premium Light Tuna in packets not cans.

    Ingredients are: light tuna, water, vegetable broth and salt.

    I have always assumed those with soy were gfree, but since I try to avoid soy, I’ve stuck with this particular one.

  27. Are you aware that in 3 days you have 90 comments on this topic? Somebody is reading your blogs.

    Are you aware I just started reading them and am enjoying them?

    Are you aware that without coffee in the morning the “simple math” security question requires a calculator?

    • I use my fingers and toes….(I am a math doofus) :)

      and if necessary, the hubs will let me count on his…….

      I am so excited!! I got 3 + 4 this time.I can see it down there and I sooo have this one!! whoohooo….I’m all set……it’s 8

  28. I was just wondering, if we all ended up in the celiac looney bin, would it maybe have the best gf kitchen and food ever?

    Is someone else could sort all that out for me, I might be willing to risk it for a few months. And hey, if we were all there, the company would be great.

    Maybe it is time I got some sleep, or maybe get out more

  29. You know, on the positive side, I was wondering what to blame for my idiot moments. My youngest is 3, so the hormones one is wearing a bit thin.

    And then along comes celiac…..

    It’s all lemons and silver linings for me this week

  30. Great blog. I sometimes get so sad for me that it makes me sick. Glad to know other people are not dismissing this lightly. I am terrified as my mother had what I suspect was un diagnosed cd and she ended up with a brain atrophising disease which eventually killed her. My father is also highly highly gluten sensitive if not a Coeliac (I do not trust the screening) and his girlfriend has said ‘show me a piece of paper that has you are a Coeliac on it and I will cook gluten free for you ‘ don’t ask. But he has made it 75 and maybe there is hope for me yet. I too am disappointed all my health issues haven’t magically disappeared. My back is terrible to the point it’s difficult to put undies on in the morning lol. My kids are sick of me being sick. I get c diff which is the most disgusting horrible thing ever. I’ve lost friends over my health issues and posting things on fb. Well, one friend and can’t say I’ve missed her but that’s not the point. My appendix was stolen and I get infections after any surgery so that new set of boobs I want comes with the risk of a major mrsa. My hubby and I went out for lunch and I ordered a dry looking sad little muffin for $5. He wanted a burger. I looked at him and said ‘you could eat gf too?’ that started a huge war. As for the sober thing, my stomach is sooooo bad that alcohol doesn’t digest it goes straight to my brain and I turn into dr jeckell. So yes, being a sober Coeliac makes me not much fun at all!!! Thanks for letting me vent. X

    • Helen,

      I am certain my mother had un-diagnosed celiac disease. She ended up with carcinoid cancer, all about the gut. But the boyfriend she became attached to, makes me think it must have gone to the brain, too.

      As far as your appendix being stolen, you are probably lucky, Carcinoid cancer usually starts in the appendix. And no one can convince me otherwise that celiac disease IS the culprit to carcinoid cancer.

      About your boobs, hey, priorities girl, get your tummy feeling better, give it a year, and maybe you’ll be able to have the surgery to increase?

      or do you want to decrease? I figure decrease b/c of your back issues.

      Suggestion about step mother: I would go onto the computer and generate a certificate of absolute diagnosis from a Dr. named Dr. C-diff Butt.

      I’m just kidding, but I have family members that make me go crazy.

      Your reply here on gd has made my day. It is hilarious, I hope you realize that mine is meant to be the same, except, my mother did suffer horribly from carcinoid cancer.

      I think everyone here should periodically get the urine test for carcinoid,

      5-Hydroxyindoleacetic Acid (5-HIAA) Testing

      I am not a dr. I am just saying.

  31. Oh Julie I’m sorry about your mother. That’s tragic. Maybe I will fix a certificate from dr Seymour Butts. Lol. She is a bit of a worry but hey, you can’t choose their partners for them can you? I think cd is responsible for many of the illnesses people face. Having cd makes you much, much more aware of things and probably enables us to diagnose things much quicker than most drs. We spend so much time sick and googling that they don’t know half what we figure out lol. I have a nice gp now who LISTENS and is careful about what he says and what he gives me. Thanks for the reply :) )

  32. I was recently diagnosed, so I missed the awareness month and day. Ignorance is bliss I guess. Anyway, the doctor told me I should join a support group. I’m thinking, great Celiacaholics anonymous… Thanks Dude for helping pass some time trying to figure this out. Good Stuff!

  33. Are you aware that I often question why I write this blog and if I am really helping anybody out there?

    YES. the answer simply is YES u are.

    As I sit here suffering as most of us do trying to fight to get our health back.

    What I spend the most time thinking about as I sit here unemployed is this:

    This is now we are in charge BUT what happens when we are older? When or if we go to a retirement community? Will they know gluten free, will we get the same choice of food? grassfed and grass finished beef or pink slime which is poison to us? What will happen if I go into the hospital for surgery? will the iv be laced with gluten or corn derivatives which are poison to me? what will I eat if I go into the hospital. My mom won’t be around forever how will I survive bc she is the sole reason I have made it to 35

    You pose questions maybe not mine but you put it out there and stand up for yourself, for fellow Celiacs who NEED SOMEONE like you and Jennifer Esposito to stand up for us, as the sad truth is the doctors are not, only a fellow Celiac can truly understand what another may go through.

    For this sir I thank you. As ur blog as been a valuable source of info and support, for me included (and my mom who is Gluten Sensitive)

    • Gluten isn’t present in any IV preparation, but even if it remotely were, those with celiac disease need not be concerned, as gluten must be presented to and processed by the intestinal tract to be harmful to celiacs.

      You should not worry about what may happen down the road, hon. Who knows how much better things will be for us by then.

      Focus on the present. Really, that’s all any of us can do.
      Best wishes to you.

      • Irish Heart (Erin Go Braugh) I do focus on the now, but as I am currently looking for work I have more time to waste think about things and things like hospital iv’s due have allergens aka “dextrose” among other things in them as well as certain things that are bad for diabetics (my dad) and me per-diabetic that make ur sugar jump and they don’t serve any safe food. I am one of the Celiacs that is hyper sensitive to allergens, I get hives, skin rash etc. I think more about it as to prepare not to depress myself but what if? everyone who is talking about our disease talks about the now there is nothing about future it is all “right now” I worry not for just myself but for all the other Celiac’s.

        Thank you for ur reply It made me SMILE. :)

      • IrishHeart…question for you. If gluten must be “presented to and processed by the intestinal tract to be harmful to celiacs” then why would/should we be concerned about items such as shampoo, lotion, etc. containing wheat/barley/rye? This is a serious question Irish. I am STILL learning after all these years and I KNOW that you and several other responders on this blog are VERY knowledgeable and it is much appreciated!!!!!!

        • Hi Donna!

          I was talking about the IV and quoting directly from the Celiac Disease Center at the Univeristy of Chicago (which explains why it sounds so “officious” LOL)

          Some people will disagree with me on this topic, but I will just give you the answers from the celiac specialists and you can decide for yourself if it makes sense.

          Unless you swallow and digest gluten directly, you need not be concerned. I would also add that prolonged inhaled flour is an issue as it will go down your throat (like if you worked in a bakery) as flour can stay airborne for hours.

          But….Honestly, I could rub a loaf or Wonder bread all over my legs and nothing would happen. I do not have a wheat allergy in addition to celiac, so having it just come into contact with my skin is not going to do a darn thing to me.

          “There is no scientific evidence that the use of gluten-containing products that are not ingested is harmful to persons with celiac disease. This includes individuals with dermatitis herpetiformis” Dr. Alessio Fasano and Dr. Peter Green have both said these words.

          Cynthia Kupper RD, Executive Director of The Gluten Intolerance Group: “While investigating the possible absorption of gluten through the skin, I have talked with many regulatory organizations and research and development people in the cosmetic industry.
          They all agree that gluten and all proteins are too large to be absorbed through the skin. Therefore, topical care products that contain gluten do not need to be avoided by persons with
          CD and DH”.

          Lipstick, facial creams and mouth rinses–where you could potentially swallow the product–is an area of concern, yes. But you would have to swallow entire tubes of lipstick to get up to a level that is harmful.
          And there are many companies that do not use hydrolyzed wheat proteins in their products, so it’s easy enough to avoid it in cosmetics. If it makes you feel better, do not use any with wheat proteins. I do buy GF lipstick myself, but I hate that companies charge $25 for a tube. That’s just ripping us off, IMHO

          If you use lotion on your body and are concerned, just wash your hands after applying them. (But again, I honestly do not worry about these things.)

          To read more about this topic, see Tricia Thompson’s article here:

          http://glutenfreedietitian.com/articles/BLOGPersonalCareProductsBlog.11.pdf

          Hope this helps!

  34. IRISHHEART

    is is FALSE/ MISLEADING STATEMENTS like u are making that CAN MAKE SOMEONE SICK!!!!!! and give them a FALSE SENSE OF SECURITY. !

    FYI I see Dr. Peter Green at the Celiac Disease Center in NY the same doctor who told me I am allergic to soy then prescribed me vit d3 with SOY IN IT> and when I pointed this out to him he was like OH never heard of that. Falls under the heading of the blind leading the blind and daft. So sorry if I do not blindly believe anything anyone states or finds on the internet. EVERY CELIAC is different and has different manifestations and for you to unequivocally state well this person said its safe so its safe for all IS NOT GOOD SOUND ADVICE FOR YOU TO STATE.
    What is written somewhere does not always match reality and is NOT applicable to all individuals.

    I AM A FULL BLOWN CELIAC sounds like if you don’t have a WHEAT allergy how are u a Celiac? it has GLUTEN IN IT. Sounds like ur sensitive. Whereas I am ALLERGIC TO ALLLLLLLL GLUTEN. I HAVE DH and if I touch anything that is even SLIGHTLY cross contaminated OR CONTAINS dextrose which can be gluten contaminated aka the stuff that is in an IV, I get sick and IF YOU DO NOT HAVE DH OR KNOW THE SUFFERING the welts, the scratching the bleeding, the full system pain, water feeling like acid on ur skin, you should not COMMENT on what is safe for people who are actually INFLICTED WITH IT bc u are not commenting from an area of EXPERIENCE. Unlike you if I rub gluten containing bread on my skin I start to get hives….so before you tell people this person said it was safe……think before you tell people HEY ITS GOOD…seeing as you stated YOU DON”T HAVE a wheat allergy…..which makes no sense if you are a celiac u are either ALLERGIC TO GLUTEN or ur NOT.

    • Thanks for posting your reply to her stupidity, Jesse…

      I’m the same way (DH is totally miserable) and every time IrishHeart says things like that my blood boils. I’ve stopped commenting on Gluten Dude’s posts because inevitably her misleading, misinformed crap will be on every post. I don’t appreciate her officious, condescending responses, and it just plain annoys me that she refuses to see that she’s WRONG…

      not worth raising my blood pressure.

      just know there are people who get it, you are not alone…

      :)

      • Laura…..if you are going to disagree with someone, have the courtesy to be somewhat polite and not act like a raving lunatic and ditto for Jesse…who clearly needs some anger management classes.

        Irishheart is 100% correct in everything she states and I find it sad that so many with Celiac do not educate themselves on the subject before ranting such blatant misinformation on the internet. Learn about how a DH reaction occurs….really. You and your friend Jesse are 100% wrong but to each his own. You can go a lifetime being misinformed and it isn’t going to affect me one bit. But IrishHeart is a friend and she knows her stuff…as do I. Been doing this for 8 years now and I have recovered well and it wasn’t because I had your attitude or lack of education on Celiac. My, my….why so many angry people these days?

        Gluten Dude….as usual, another fine and humorous blog entry. It’s amazing that you feel so bad sometimes yet you never lose that wonderful sense of humor you have! Keep up the good work!

    • Is celiac disease a wheat allergy?
      From Nancy Lapid, former About.com Guide
      Updated June 15, 2009
      About.com Health’s Disease and Condition content is reviewed by the Medical Review Board

      Answer: No. Celiac disease is not a wheat allergy, nor is it a gluten allergy. Celiac disease is an autoimmune disorder triggered by eating gluten. (Other articles on this site will help you learn what gluten is and what foods and other products contain gluten.)
      There are several differences between autoimmune disorders and allergies. To understand these differences, it helps to know a bit about the immune system: Its job is to rid the body of foreign substances that might be harmful to it, such as bacteria and viruses, and also build protection against these invaders if they try to attack again. The process of getting rid of foreign substances and developing immunity is called “the immune response.”

      But sometimes the body’s immune to a foreign substance doesn’t function correctly, and “over-reacts” so fiercely that it produces symptoms. This is called an allergic reaction, and the foreign substance that triggers the allergic reaction is called an allergen. People can be allergic to many “foreign substances” — shellfish, cats, plant pollen, to name but a few.

      Other times, though, the immune response malfunctions and reacts incorrectly to the body’s own normal tissues. It’s as if the immune system “thinks” a part of the body is a foreign substance. It attacks the body, which is called an autoimmune response, and this happens in autoimmune disorders, such as multiple sclerosis, lupus and celiac disease.

      In celiac disease, gluten stimulates (because of genetic predisposition) the production of immunoglobulins that attack the villi lining the small intestine (that is, the body’s own normal tissues). Celiac disease is often confused for an allergic illness because (like an allergy) it requires a foreign substance to trigger it.

      Another difference between autoimmune conditions and allergies is that autoimmune disorders are never outgrown; they persist for life. Allergies can sometimes be outgrown.

      Also, autoimmune conditions can result in long-term damage to the body. For instance, because celiac disease damages the small intestine, people with celiac disease are at risk for malabsorption, nutritional deficiencies, iron-deficiency anemia, and osteoporosis. People with celiac disease are also at risk for other autoimmune conditions, such as thyroid disease, diabetes, and liver disease.

      In addition, in untreated celiac disease, a type of white blood cell called the T lymphocyte is activated, along with other parts of the immune system, putting patients at increased risk to develop gastrointestinal lymphomas. A wheat allergy, in contrast, would not put patients at risk for any of these problems. In general, allergies usually result in only temporary symptoms without long-term damage, unless they produce a fatal anaphylactic reaction.

      Source:

      American Celiac Disease Alliance

      The University of Chicago Celiac Disease Center

      ANOTHER FACT: YOU DO HAVE TO INGEST GLUTEN TO GET SICK, YOU WILL NOT GET SICK FROM AN IV LINE. IRISH HEART GIVES YOU THE RESOURCES AND FACTS ON THIS.

      SHE ALMOST DIED FROM HAVING UNDIAGNOSED CELIAC DISEASE, SHE JUST WANTS THE CORRECT INFORMATION CIRCULATING. SHE WAS NOT RUDE TO YOU, SHE WAS GIVING THE FACTS, NO REASON FOR YOU TO BE RUDE, NO REASON FOR ANYONE TO BE RUDE PERIOD.

    • Wow Jesse! I have been following GD for some time now and have always found IrishHeart to be well educated and knowledgeable about CD.
      Gluten Dude: I don’t know what is going on, but lately we have had some really hateful people responding to your posts. I may sit back and just read your blog and a select responses rather than responding for a while and see what comes of it. I’m kind of afraid of being attacked as Irish has been.
      Thanks for the great blog and I hope that things calm down soon!!!!!! Hugs to Irish…you are appreciated here!

        • I promise I will not let this site become infested with negativity and attacks. This community cannot afford to lose good people like yourselves.

  35. Laura: you have brain, thank you for ur reply, she is obviously not a Celiac by what she wrote bc NO CELIAC in would ever say such things or for that matter anyone who has a basic comprehension level of Celiac Disease and or GMO, WHeat.

    It is clear she is ignorant to the reality of CD bc anyone who would say I am not allergic to wheat ? and things like rub bread on my skin is just plain MOCKING Celiacs and it is individuals the likes of her that do Celiacs a disservice the only reason why I replied to someone who obviously has an elevator that does not go all the way up is so that she doesn’t kill a fellow Celiac by giving misleading advice that based on her own admission she should not and is not qualified to give.

  36. OMG STUPIDITY RUN RAMPID aloha RE-READ WHAT I WROTE AND APPLY IT TO URSELF PLEASE.

    I CAN POST AND SAY A FACT DOES NOT MAKE IT TRUE AND ANYONE WHO BELIEVES THAT THINGS ARE SIMPLY BC THEY ARE ON THE INTERNET NEEDS HELP, SERIOUSLY.

    2ND DON’T U DARE CHASTIZE ME FOR POINTING OUT THAT SHE CAN AND WILL KILL SOMEONE BY GIVING THEM INACCURATE INFORMATION. 3RD I HAVE DH AND CLEARLY U DON’T NOR DOES SHE SO NEITHER OF U ARE IN A PLACE OF KNOWLEDGE OTHER THEN WHAT WIKI TELLS YOU

    4TH, IVS ARE NOT SAFE, PERIOD FOR THE AFOREMENTIONED REASONS

    5TH CELIACS DISEASE AND WHEAT WHICH CONTAINS gluten MORON OH AND WHEAT IN THE US ALL AMERICANS HAVE A BASE GUT REACTION 2 BC OF ITS MODICICATION AND HIGH LEVELS SOME PEOPLE MORE SOME PEOPLE LESS WHICH IS WHY AUTOIMMUNE DISEASE IN THE LAST 30 YEARS HAS INCREASED SO DRAMATICALLY BUT

    you know everything DON’T YOU DEAR. DO ME A FAVOR U FOLLOW HER ADVISE….WIND UP SICK AND DOING DAMAGE TO UR SYSTEM……..i AM NOT STUPID AND WON’T IT IS JUST THAT SIMPLE

    THE BASE FOR NEARLY ALLLLLL IV’S HAVE DEXTROSE WHICH IS A FORM OF GLUCOSE WHICH COMES FROM AKA DERIVED IN THE UNITED STATES FROM GLUTEN SOURCES BC IT IS THE CHEAPEST MUCH LIKE MANY VITAMINS SO DO ME A FAVOR IF YOU DON’T KNOW WHAT THE HELL UR TALKING ABOUT …..HAVE A PRIVATE CONVO WITH IRISHHEART I HAVE MORE IMPORTANT THINGS TO DO THEN EDUCATE YOU ON REALITY

    AGAIN RE-READ WHAT I WROTE…AND IN CASE YOU DIDN’T GET THE POINT…THIS POST IS ME BEING rude

    ACTUALLY NOT EVEN….JUST BC U DON’T LIKE REALITY AND TRUTH AND THE FACT THAT I POINTED OUT SHE GAVE FALSE AND BAD INFO DOESN’T MAKE IT RUDE. JUST MEANS U FEEL THAT SHE IS WEAK AND U FEEL THE NEED TO DEFEND HER BC U FEEL ITS UR JOB. GO SELF HELP SOMEONE ELSE…..

    BUT SINCE I HAVE HAD IV’S AND GOT A REACTION BC UNLIKE U I AM HYPERSENSITIVE TO GLUTEN, AND DERIVATIVES OF GLUTEN I GET Anaphylaxis WITHIN MINUTES AND MY FACE TURNS FUSIHIA…AND STARTS TO HEAT UP JUST LIKE WHEN I EAT SOMETHING CROSS CONTAMINATED OR PUT ON A LOTION THAT CONTAINS IT, I GET INSTANT REACTION…I AM VERY HAPPY UR PERFECT AND DONT SUFFER FULL BLOWN CELIAC DISEASE BUT I DO AND WOULD RATHER NOT LISTEN TO SOMEONE GIVING BAD ADVICE THAT COULD BE DETRIMENTAL TO MY HEALTH

    BUT IVS ARE SAFE RIGHT TELL THAT TO THE PHOTOS OF MY SKIN AFTER HAVING ONE AND WHAT IT DID TO ME BUT I GUESS IM WRONG BC U SAID SO ON THE INTERNET

    IDIOT. REPLY DON’T …I AM NOT WASTING MORE TIME WHEN I CLEARLY ILLUSTRATED HOW WRONG SHE WAS TO GIVE FALSE INFO AND MISLEAD FULL BLOWN CELIACS LIKE MYSELF WHO SHE BY LISTENING TO HER DRIVEL COULD KILL.

    LATER FOR YOU

    ALOHA

    • Your reaction is somewhat unstable in my opinion. Did you read the article I just posted? and it won’t be later for me until GD kicks me off his blog.

      I do have DH, I do have CD, and I know for a fact that gluten has to be ingested in order to cause damage to the villi. There are some foods that do not contain gluten that can upset my gut, that’s a fact too.

      It seems to me that if you had an ALLERGIC reaction to an IV there was possibly some other ALLERGEN in the IV. Perhaps you are allergic to some anti-biotics for instance.

    • Breathe in…breathe out. Ahhhhhh.

      I don’t have many rules here. Actually, I’m not sure I have ANY rules here.

      That being said, I would appreciate keeping any personal attacks off-limits. We can agree to disagree…that makes great conversation.

      But I’d like to differentiate our community by its “we’re all in this together” feeling.

      So no attacks. And if possible, no all uppercase either. To me…that’s internet language for shouting, which I’d like to avoid.

      Kumbaya.

      • Dude, You know me well enough to know that I always post the truth from reputable Celiac Disease Research Centers, the top celiac doctors and dieticians.

        If it is my opinion, I say IMHO.

        To those who just posted these last two hateful posts:

        I am always polite and the people who know me well do not think I am condescending or “officious” or any of the other hateful words thrown my way today.

        Yes, I have celiac disease. I suffered horribly from it and I am just getting my strength back after 2 years. No, I do not have a wheat allergy in addition to celiac, so yes, I could touch bread and not have a reaction. Yes, they are two different mechanisms and anyone who knows anything about celiac should know that it is not a gluten “allergy”. I will not even bother to address the other things said, because it would take all day.

        Laura, I know DH is painful. I know you suffer with it (as do several of my friends) and again, this information In posted —is from celiac centers. I don’t just “make stuff up”. You can disagree with it, but it is not cause for you to attack me personally.

        As has been pointed out many times, I take the time to post this info because I care about fellow celiacs and the Dude is appreciative. If you do not agree with the info, that’s your prerogative, but do not say it’s false or misleading, because it’s not.

        I am sorry you have such hatred for me. I do not even know you, but still, it is painful to read these words.

        • this goes to gd AS WELL : ALSO IF YOU CARED ABOUT FELLOW CELIACS PER MY ORIGINAL POINT TO YOU WITHOUT ME soliciting ur opinion BC U DON’T HAVE THE SAME ALLERGIES NOR DO YOU CLEARLY NOW ANYTHING ABOUT IV’S OTHER THEN WHAT YOU CAN PARROT OR READ OFF THE INTERNET ……..I POINTED OUT NICELY THAT YOU WERE WRONG, AND THAT IT IS FALSE INFO AND THAT IN FACT IT CAN AND WILL KILL SOMEONE IF THEY LISTEN TO “ur research” UR ATTACKING ME, UR TELLING ME I AM WRONG, BC UR SENSITIVE THAT I POINTED OUT WHAT YOU PROVIDED IS FLAWED, THEN DON’T BE SO WEAK BE accurate!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ALSO ALOHA JUST AS BRIGHT AS YOU IS TELLING ME THAT CELIACS IS NOT a wheat allergy OR allergy NO DUH WHERE DID I SAY IT WAS ONE, U STATED UR NOT ALLERGIC TO WHEAT WHICH IS SORTA IMPOSSIBLE IF UR A FULL BLOWN CELIAC LIKE U CLAIM BC no celiac can process or break down in their gut any gluten protein THEREFORE UR EITHER lying OR DON’T KNOW WHAT UR TALKING ABOUT LIKE I POINTED OUT. Ivs ARE NOT SAFE!!!!!!!!! PERIOD READ THE INGREDIENTS IN THEM AND FOR SOME OTHER IDIOT TO POINT OUT IT COULD BE A BEAN ALLERGY THEY DON’T PUT THAT IN IVS I MEAN REALLY, BRAIN SURGEON. I DON’T HAVE PATIENCE FOR STUPIDITY NOR DO I TOLERATE SOMEONE BEING SNIDE TELLING ME I AM WRONG WHEN I AM 100% RIGHT NOT ONLY BASED ON common sense of ingredients of iv bags BUT THE FACT THAT IT HAPPENED TO ME AND I HAVE DH AND U DON’T BC AS i said every celiac is different in sensitivity

          ALSO YOU PARROT I POST RESEARCH

          WELL DEARY

          THEY SAY IN RESEARCH ONE YEAR BUTTER IS GREAT AND THE NEXT IS BAD, THAT IS WHAT UR RESEARCH IS WORTH

          THE LATEST RESEARCH IS JUST THAT SOMEONE DOING A STUDY THAT HAS NO LONG TERM RESULTS, FACTS OR LARGE ENOUGH SAMPLE STUDY IF you know anything about medical studies THERE ARE ALL DIFFERENT KINDS.

          TRYING GOING BACK TO 1930 LOOK UP DR. HASS celiac disease research is just catching up to him over SEVEN DECADES LATER …………ALSO

          THE RESEARCH U PUT BC U HAVE NO ORIGINAL THOUGHT, EXPERIENCE TO SHARE YOU ARE JUST giving people bad advice bc u read it on the internet? PEOPLE GET SUED FOR THAT DEAR!!!!!!!

          WHY DON’T YOU GO TO THE NEAREST HOSPITAL READ AN IV BAG INGREDIENTS they are not safe FOR THOSE WHO SUFFER FROM DH BC THEY ARE HYPER SENSITIVE AND HAVE OVER ACTIVE IMMUNE SYSTEMS GLUCUSE AGAIN IS NOT SAFE BC OF THE SOURCE IT IS DERIVED FROM IN THE UNITED STATES duh!!!!

          AGAIN REPEATING THIS FOR A THIRD TIME

          BUT I WILL NOT SIT HERE AND BE ATTACKED, DENIGRATED OR TOLD THAT WHEN I FASTED FOR MY SURGERY THEY GAVE ME THE IV WHICH HAD GLUTEN DERIVATIVES IN IT JUST THE SALINE BASE TO START MY LINE I GOT Anaphylactic shock WITHIN 4 MINUTES 28 SECONDS, I WOULD POST THE PHOTOS BUT THAT ABILITY IS NOT AVAILABLE AS WELL AS MY MEDICAL PAPERS DOCUMENTING IT IS THE CAUSE FROM THE HOSPITAL!!!!

          BUT UR RESEARCH IS SO RIGHT LOL WHAT A JOKE UR TELLING ME THAT AN IV IS SAFE AFTER I TELL YOU I EXPERIENCED IT IS NOT, AND THAT CLEARLY USING COMMON SENSE THE INGREDIENTS IN AN IV ARE NO SAFE if u read them!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! IS MOCKING AND NEGATIVE AND FALSE AND AGGREVATES SOMEONE WHO WAS BED RIDDEN FOR 2 MONTHS RECOVERING FROM IT

          ALSO I KNOW EVERY FOOD I AM ALLERGIC TO I EVEN TESTED SPICES BC I HAVE BRAIN AND I AM METHODICAL IN ELIMINATED ANYTHING THAT WILL CAUSE INFLAMATION TO MY IMMUNE SYSTEM

          I WAS ALLERGIC TO PEANUTS MY WHOLE LIFE NO DOCTOR DIAGNOSED MY CELIACS DISEASE, THEY ALL SAID I HAD DRY SKIN A TOPIC, IT WAS ACTUALLY A PEANUT ALLERGY

          JUST BC SOMEONE IS A DOCTOR DOES NOT MEAN THEY ARE A GOOD ONE, SAME GOES FOR UR RESEARCH UNLESS THEY HAVE IT HOW WOULD THEY KNOW, THEY DON’T. SECOND, DR GREEN IS NOT AS GOOD A DR AS DR HASS WAS, HE TREATS HIS PATIENTS LIKE NUMBERS AND DOES NOT PAY ATTENTION TO DETAILS

          ANY DOCTOR THAT YOU SITE THAT HEADS AN INSTITUTE FOR CELIACS AND HAS PUBLISHED BOOKS!!!!!!!!!!!!!!! ON IT TELLS A PATIENT THAT THEY ARE

          ALLERGIC TO SOY AND THEN PRESCRIBES A MEDICINE THAT THE SOLE COMPONENT IS SOY!!!!!!!!!!!!!!!!!

          IS NOT THAT GREAT OF A DOCTOR AND GUESS WHAT DOES NOT have celiacs either

          ALSO THE OLD PHRASE IS OPINIONS R LIKE ASSHOLES EVERYONE HAS ONE AND EVERYONE THINKS EVERYONE ELSE STINKS

          EXCEPT YOU STATED UR OPINION AND MADE HIGHLY INSULTING REFERENCE TO A CONDITION YOU HAVE NO CLUE ABOUT AND I AM STATED FACT, LOOK IT UP

          MAIN INGREDIENTS IN ALL IV’S ARE DEXTROSE AND SODIUM CHOLORIDE (MY COUSINS ARE ALL MEDICAL PROFESSIONALS I ACTUALLY GOT A BAG AND LOOKED HENCE MY COMMENT UR WRONG) AND BEING THAT DEXTROSE IS A D-GLUCOSE IT gets absorbed NO NEED TO INGEST YOUR BODY WILL ATTACK ITSELF AKA UR IMMUNE SYSTEM BC IT IS AN ALLERGEN
          ASK ANY ALLERGIST WHO IS WORTH THERE SALT
          SO AGAIN I SAY, UR AN IDIOT FOR GIVING LIFE THREATENING ADVICE THAT COULD DO INTERNAL DAMAGE TO A CELIAC WITH DH LIKE ME, AND SHOULD KEEP UR OPINIONS TO URSELF AND STICK TO FACT

          • Jesse…I asked you nicely to keep it civil and you seem to refuse.

            Irish is all heart, whether you agree with her or not.

            I will not allow our community to become like every other blog out there where it’s people shouting back and forth. It’s not conducive to communication and it’s certainly not conducive to healing.

            I appreciate you visiting and I wish you the best of health.

          • Hello Jesse –

            I believe your cap lock is on — unless you are intentionally yelling at us all.

            I have the good fortune of counting IH as a good friend. Please refrain from these ranting attacks. If you have issue with information she has posted – she is the first to love a great discussion. I know – we spar often and have a very nice time doing so.

            For now, please consider the tone your comments are making to the webworld at large.

            Friend or not, no one deserves to be yelled at online — especially those of us with the same disease.

            Hope you are feeling better very soon — until then — please consider refraining from the use of your CAP LOCK.

            Thank you.

            -Lisa

  37. Whoa! Jesse, to use your own words – I hope you don’t kill someone with that misinformation. :) . Celiac isn’t,technically, an allergy , but you can have Celiac and a wheat allergy or a green bean allergy or any other allergy.

    IH, don’t worry. Most of us can’t even follow that rant.

    • WHERE DID I SAY IT IS SIMPLY AN ALLERGY? DO YOU COMPREHEND BASIC ENGLISH? I DO. I ALSO COMPREHEND THAT I WAS ATTACKED FIRST AND THUS DEFENDED MYSELF AND THEN SHUT THE PERSON UP WHO WAS GIVING FALSE INFORMATION IF THEY NEW ANYTHING MEDICAL FOR STARTERS. TELLING ME THAT HAS DH THAT A IV IS SAFE BC RESEARCH SAYS SO IS SO BEYOND MORONIC BC THEY DON’T HAVE GREEN BEANS IN IV’S SO IF YOU CAN’T FOLLOW THE CONVO DON’T ADDRESS ME BUT WHAT I SAID WAS NICE NOT RUDE UNTIL SOMEONE DECIDED TO PICK on me SO I DEFENDED MYSELF. I AM NOT GOING TO SIT HERE AND LISTEN TO SOME MORON TELL ME THAT A DR I KNOW FOR FACT BC HE IS MY DOC SAID IT SO ITS TRUE THAT MY SKIN REACTION (DH) FULL BODY HEAD TO TOE FROM AN IV DID NOT HAPPEN! I HAVE PHOTOS DOCUMENTING IT AND BTW UNLIKE A LOT OF SO CALLED CELIACS, CELIACS AND GS PEOPLE MY MOTHER HAD SEVERE Anaphylactic shock SHOCK FOR 36 YEARS UNTIL SHE FOLLOWED MY DIET NOW SHE HAS NONE I HAVE HAD at my request bc i have a brain and don”t reley on others to think for me had full AGAIN UPON MY REQUEST IgG AND IgE TESTS. SO IF YOU DON’T KNOW HOW THE CONVO STARTED OR THE actual topic FIND SOMETHING BETTER TO DO THEN also attacking me MAKING URSELF IN THE COMPANY OF AN IDIOT

  38. As our community grows in size, this is bound to be one of the results. I may need to enforce a few rules moving forward.

    Up until now, the conversation has almost always been respectful and any anger has been directed at the disease and not at each other.

    The LAST thing we all want is a community filled with rage and arguments. It serves no purpose. There is no room here for name calling and personal attacks, unless of course it is directed towards Kim K. :)

    Feel free to rant…even at me is fine…I’m fair game…just not at each other.

    • didn’t realize was typing didn’t look to see if caps was on, apologize ONLY for the caps being on. i was on the phone and typing at the same time.

      but re-read what i said its accurate truthful and to the point i am not politically correct. if it walks like a duck and talks like a duck its a duck and she is being daft PERIOD no to if’s and’s or but’s about it. i tried being nice then here and her buddy attacked me, I WILL DEFEND MYSELF I will not tolerate that esp after what i have gone through!!!! i will gladly send you the photos so you can see urself why it angers me that someone can blindly be that stupid.

      she could kill some one by siting that wrong advice period that leaves her and you open to lawsuit.

      I am not suffering bc I unlike the top CELIAC dr I see anything he does i check bc i feel like not getting killed. allergic to soy and he prescribes soy….great doc

      • No one attacked you, Jesse, and you might want to work on that persecution complex you have going. Seriously, you are so angry
        and you are shutting out and attacking people who are trying to give you the correct information on this disease. I get the anger about being sick because I nearly died from Celiac 8 years ago. I was one week away from a feeding tube and it was all due to incompetent doctors so I totally understand your frustration. But after a long time, I healed up and let the vast majority of the anger go. Still don’t trust the AMA all that much but it’s what we have and you have to work with it.

        Stop calling people names…it’s juvenile behavior and won’t encourage people to help you.

    • U asked for civility…. I understand that U reserve the right to block whatever poster U deem. I suggest that in the future for medical safety U check medical statements presented. It may be an extremely time consuming endeavor, however, when lives of readers hang in the balance – an advisable measure.
      IrishHeart’s stated her opinion as fact, when what she wrote is not factual. Even Dr. Alessio Fasano states: “based on what we know right now.” Therefore IrishHeart should NOT state something as a factoid, when the good Doctor himself will not.
      Yes, Jesse was upset and out of sorts at the statements made by IrishHeart because she has spent her life dealing with people who state things as fact when they themselves do not have all the facts. As she has valuable input, why block her when she was incited? A warning is more called for.
      “There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy”

      • She was warned Lissa. And continued to name call. That’s not what it’s about here.

        Let’s let this conversation rest…please.

  39. Not sure what the heck is going on here and why I’m getting blasted here, but I posted the information about IV drips not containing gluten from here:

    http://www.cureceliacdisease.org/archives/faq/does-someone-with-celiac-disease-need-to-be-concerned-about-gluten-in-hospital-iv-medications

    Maybe Jesse, you should write to them and tell them they are wrong?

    The irony of this whole thing is, I saw your initial post yesterday, saw that you had responded to an older thread and thought you sounded a bit down about your situation and I was only trying to be supportive and encouraging. You replied it ” made you smile”.

    Then, I answered Donna’s question – it had nothing to do with you—and you jumped all over me.

    ……. and since then, all you have done is call me names.

    That will teach me to reach out to others, I guess.

    .

    • Irish…I will say this–please don’t give up on helping! I (and know Gluten Dude as well) greatly appreciate the help. You have never been anything but kind and helpful from what I have read! I know I said yesterday that I was only going to READ the posts and not respond for a while, but I feel absolutely horrible that you have been made to feel crappy! I’m sorry…really sorry…that your feelings have been hurt when all you did was try to help!!!!!! Thank you IrishHeart for being so knowledgeable and willing to share that wealth of knowledge with ME! I would really like to be friends! If you could post something on his Facebook page I will send a personal message so that we can share our knowledge that would be great!!!

      • Hi again, D :)

        Sorry, but I do not FB right now as I spend a good bit of time on Celiac.com (or in my community working with other celiacs). I research endlessly so I can understand the mechanisms of celiac and recover my own health. Whatever I learn, I share it with people I have had the privilege of meeting–folks from all over the world. Some of my dearest friends are celiacs.

        It’s funny, but for 2 years, the information I have shared regarding celiac has been very well-received by other celiacs and never have I been told that I am “misinforming or misleading”, (aka lying?) nor has anyone –ever, in my entire life—called me “condescending” and “officious”. (It’s actually laughable as nothing could be further from the truth. I dislike people who have sticks up their butts and talk down to people.)

        Certainly no one has ever called me a moron, an idiot or stupid (as these people have) or accused me of being “unwilling to admit when I am wrong”. If I am wrong, I apologize.

        I haven’t said anything to apologize for in this thread.

        Some people who visit the Dude’s site have labeled me a “know -it -all”….really?
        why? Because I bust myths? tell the truth? stop paranoia from running rampant? So be it.

        As long as the Dude wants me here, I will stay. But it does get tiring having to defend myself from verbal attacks. I’m only providing accurate, current info from the leading celiac specialists.

        Take it or leave it.

        Thanks again, Donna, for being so gracious!

  40. Hello: The simple facts are:
    Whilst there may not be gluten in an IV, the crystalloids and colloids used cannot be specified as Gluten free due to processing that is not clearly disclosed. Any blood based IV MUST be considered contaminated due to allergen ingested thus deposited in the blood. More than 50% of the Celiac’s present with other allergies besides just Gluten. The IVs that are given in the hospital can kill a patient with Diabetes. Patients with MS should not have an IV with Glucose either as MS presents the same needs as Diabetes. When there is Diabetes in a family, there is also Carbohydrate Intolerance & Insulin Resistance that a patient may not be aware of.
    The food alone given to hospital patients is carbohydrate based and raises the blood glucose to an extremely high number. This is something I learned when my Husband nearly died in the hospital. If U read the contents U will note there is glucose in all IVs unless U REQUEST A GLUCOSE FREE IV. The patient must be vigilant, and know just as much as the Doctors if not more.
    FUTHERMORE: ANYONE who has been tested, and proven with the IGE, & IGG testing 2B a legitimate full blown Celiac—IS and always will be allergic to AMERICAN (and we live in America) Wheat simply because it contains an extremely high gluten content. If a medically diagnosed Celiac imbibes, ingests, or breathes in, and has skin contact with their particular allergen, they will have an allergic reaction. This reaction may not present topically, it may only be intestinally, but it can and does have the same disastrous health results. (IrishHeart is obviously not aware of this.) The Celiac Specialists in this country do not have enough extensive of the studies that they have done in other countries that are more aware because there are more vast numbers of Celiacs that live outside America. It is a relatively new disease here.
    IrishHeart wrote: “There is no scientific evidence that the use of gluten-containing products that are not ingested is harmful to persons with celiac disease.” I do not know what she bases her opinion on, but she is indubitably WRONG. IF IrishHeart has ever gone to an Allergist and been tested, the testing would consist of DERMAL IRRITANTS. The only other way to know of your own personal allergies if to have R.A.S.T. (radioallergosorbent test) testing done. Celiacs with Dermatitis herpetiformis must worry about their future since without treatment, there may be a significant risk of intestinal cancer amongst other things. The very nature of Dr. Alessio Fasano’s studies negate this statement of IrishHeart and prove mine. If U desire to know more, simply use the Google search engine URself in search of help. The allergins maynot be absorbed through the skin, they may wind up inside someone’s body by CONTACT. If someone that is allergic to a dog, or any other animal comes in contact with that said allergen, they have an attack. BTW, Children can get Chickenpox, Measles, or any other disease simply by being downwind in the same vicinity. The very article IrishHeart gives the link to states: According to Dr. Alessio Fasano, Medical Director of the Center for Celiac Research, University of Maryland, “If you have celiac disease, then the application of gluten containing products to the skin should not be a problem, unless you have skin lesions that allow gluten to be
    absorbed systemically in great quantities.
    “The reason why this should not be a problem is that, based on what we know right now, it is
    the oral ingestion of gluten that activates the immunological cascades leading to the
    autoimmune process typical of celiac disease.”
    Make note of the sentence that has: “based on what we know right now.” THEN, tell someone who has gotten sick that this was impossible.
    The fact of the matter is that NO ONE in the USA should be eating American GMO Wheat. It has been modified to benefit the huge conglomerates to pocket money. The reason I state that no one in the USA should eat American Wheat is that is an allergen. It was elucidated quite clearly on the Dr. Oz show. This link http://www.doctoroz.com/videos/are-you-addicted-wheat-pt-3 is quite educational on this subject. I invite U 2actually learn more about this. Anyone who thinks they know more than the good Dr Davis, feel free to contact him and debate with him something that he has studied extensively.
    I absolutely abhor people who voice uneducated opinions without checking facts that are ABSOLUTE GIVENS . Not everything is known about this disease as of yet. Were that it were, life for many would be livable w/o a lot of agony. My personal agony is Angio Edema Urticaria, that had not a name until recently. If more had been know about it when I was a child, AND about Celiac Disease, my children would not have suffered from their allergies. Nothing in this life is absolute, maybe not even death. “Only two things are infinite, the universe and human stupidity, and I’m not sure about the former.” Albert Einstein…. Humans are infallible. So please do not block someone who disagrees with another poster unless they are trying to lead other poster astray.

  41. one more time:

    “There is no scientific evidence that the use of gluten-containing products that are not ingested is harmful to persons with celiac disease. This includes individuals with dermatitis herpetiformis” –Dr. Alessio Fasano and Dr. Peter Green have both said these words.

    This is not my opinion—.it is the opinion of these celiac specialists.

    • I have CD and I have DH, when I was diagnosed, I did not know where to go b/c there was not any support where I live. I googled celiac disease and was routed to celiac.com. Some other web sites too and they were ok, but I wanted a more personal feel. Then, GD’s blog came up.

      That was in March of 2012, in that time I’ve met Irish Heart, and I’d rather have this site to go to than all others. I know GD is trying to help us, I found this one thing is true, Gd holds us all in his heart, b/c he continues, even though it is so challenging, emotionally and time consuming.

      Thanks again GD. You have really helped me cope.

      Can I also state that life is precious and short, we have no idea what tomorrow brings…my cousin was diagnosed with pancreatic cancer, he has maybe 2 weeks to live. I found this out today, Does that put all of this into perspective?

      We played sponge tag in Pleasure Basin in Stone Harbor when we were kids. He would always say to me “Hey cuz!”

      Live life to its fullest, and always have love and compassion, no matter.

  42. Celiac isn’t an allergy. It’s an autoimmune disease. I know you came on here to attach IH for some reason, but you need real facts with legitimate sources. Just because Dr Oz says people are addicted to wheat, that isn’t Celiac disease.

    I agree with the abhorring people who, like you as Jesse or Lissa, voice uneducated opinions without checking facts.

    The fact that someone was allergic to an IV does not mean it has gluten or that all IVs would even be dangerous to that same person.

    • #1} Thank-U Lisa for realizing that Jesse’s cap lock was on. She unlike myself does not have to look at her keyboard when she types.

      #2} Lima Bean: U R correct in stating that Celiac is NOT an allergy,
      Celiac Disease IS an Autoimmune disease that follows the hypotheses: An individual’s immune system is totally incapable of recognizing self antigens. I concur with hypothesize of many medical Professionals that Gluten may indeed be a hidden factor in many of the diseases that are becoming more common place today than in the past.
      U will note I did not say that Celiac Disease is an allergy. I stated that –More than 50% of the Celiac’s present with other allergies besides just Gluten. I was writing quickly and left off the word sensitivity. I am quite sure that others understood what I meant. I am quite sure that if U read everything I wrote, U will note the salient points. Is that seriously the only thing people can point out? Did no one understand the entirety of what I wrote? I did not “attach,” I guess U write quickly also… some reason? Yes, I object when someone states things as facts that are not factual. I listed a legitimate source that most people accept, Dr. Oz, whom as U may look up, is a Heart Surgeon, and his segment on Wheat was with another Dr. (Davis) Are U suggesting that these 2 Degreed men are frauds?Feel free to write to Dr. Oz. Point; Dr Oz did NOT say people are addicted to Wheat. Dr. Davis his guest for that particular segment, went through an in-debth explanation of gliadin & the disastrous effect it can have on EVERYONE’s health, how it works/affects within the brain of all humans. Obviously U have NOT checked the facts as I HAVE done. So when U wrote: “I agree with the abhorring people who, like you as Jesse or Lissa, voice uneducated opinions without checking facts.” The correct way of writing this is: I abhor people who—
      Therefore I may hypothesize U despise URself, since, as U claim U abhor people that voice uneducated opinions without checking facts.
      Please feel free to write letters to prominent Medical Journals I have quoted, letting them know that they & the people they publish are uneducated.
      NEJM (Group), Journal Watch, and feel free to contact The National Institutes of Health as well. Those are 2 references I use most with NIH, and Medline.
      I am quite sure they will pay more close attention than I at UR inference.
      I prefer to not continuing an inane conversation with anyone who cannot resist posting for, or against, a perceived attack towards someone, when I was responding to an initial attack towards misinformation posted by another person. I responded because the wrong information read by a Celiac can have disastrous life or death effects, as I, Gluten Dude and others can attest to.

      • Sorry. A typo…you 2? Came here to attack IH for some odd reason. That’s what I should have typed.

        You and Jesse( if you are 2 people) both kept talking about Celiac as an allergy on top of all the other nonsense you spewed.

        If you really are Jesse’s mom, did you not find her odd rants scary? If that were my child I would be very worried about his/ her mental state.

        However, it sounds, to me, like its the same person who just wants to fight. I never get why people want to come on these types of websites ( disease related) and make fun of and pick fights with the people on them.r

  43. Dear Sweet Lima Bean: I do not pick fights, I debate with salient facts. U happen to be the one who by repeatedly trying to insult me continues this ‘discourse’.

    Apparently UR education precludes UR deductive reasoning from simple statements, as well as the act of googling definitions. I surmise UR antagonism stems from this lack. As I stated: I left a word off my sentence. I did not talk, I wrote only the facts as promoted by Medical Professionals, and included some quotes by them as well. I find it boring to reiterate numerous times, but I shall find the fortitude to repeat yet again a concept U have not grasped.

    I agree Celiac Disease is not an allergy and did not infer such. I am sorry that U do not understand that, as I had stated B4, I wrote: More than 50% of the Celiac’s present with other allergies besides just Gluten. < I left off the word sensitivity after the word Gluten.

    I am not my daughter, I am my daughter's Mother. Do U understand this simple sentence? I have no idea whatsoever your problem, UR need to respond for IH eludes me. I am quite sure that IrishHeart is quite capable of responding to me, herself. I am not fighting, I responded to IH's response with facts, and included a link to of which I mentioned, ie: Wheat and no one in America should eat it. Disease and Diet go hand in hand. Inflammation happens in conjunction with many of today's diseases, and as such require special diets which are helped by the omission of most common allergens. This in turn helps alleviate the suffering from the Disease itself. When my daughter commented/typed on the blog she had not realized her caps key was depressed– Unfortunately when one looks to incite another, they may get an emotional torrent that they did not count on. Most people do not belabor a mute point as U. Please re-read all that I wrote and try to comprehend. I suggest the same to all others.

    Thank-U 4the amusement… Have a good night.

  44. Ahh, I would like to remind people that while the Earth is round… historically people believed the Earth was flat.
    Once upon a time Drs. from all over believed that AIDS could not be transmitted through saliva,
    until the case of Kimberly Ann Bergalis proved them wrong.
    The only belief that has never been proved wrong is E = mc2 .
    While quite a lot of people do not have a clue BC they do not suffer from Celiac Disease, they figure that if U do not eat Gluten U will be safe. I do not know the percentage of those lucky people who that applies to, but if U do not fall into that category, U must be extremely diligent about Chicken, and meat. This is something that does not occur to most. U find this out when trying to dine out. It is by far safer to eat at home where U are able to control everything-once U know the ins, and outs. Airborne cross contamination is a term Celiac sufferers learn the hard way.
    Those of us who experience the problem of the food chain that is fed ‘glutenous’ grain learned when eating a Gluten free diet still were ill. U think U are safe, but learn differently, ie: if the beef, while Grass Fed, was Grain finished.
    Unless specified where it comes from, thanks to GMO foods, there are problems with Citric acid, Corn Starch, Vitamins derived from GMO corn, the cheapest source -Vitamin B 12 especially. Dextrose, Whey (also BTW whey appears to stimulate insulin release, in type 2 diabetics), Vinegar, SOME Tomato Sauces, and Malodextrose, to some name others. This is by itself quite maddening, but the fact that it is quite unnecessary as well is beyond irritating when U find out that U are not able to eat a food U like BC of WHERE one of these additives is derived from.
    Even the most renowned Specialists may be unaware of this, which is why a lot of Celiac Disease sufferers, suffer.
    I hope that any of this may help someone that might be unaware. I know that there are some things I have not listed, feel free to add~!

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