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55 Comments

  1. 1

    John

    Hi GD,

    Thanks for responding to my note on the pasta stir sticks! As you say, I don’t expect to be *completely* catered to in such a setting — I mean, I went there with every expectation (fulfilled, BTW) that there’d be no GF foods available — but I never *dreamed* this stick thing would happen; it just really rubbed me the wrong way. It’s like you said in one of your other answers, giving up gluten is the easy part, it’s all the other crap that’s annoying, and this just strikes me as a perfect example.

    You’re right, they had no warning about it; I had it in my hand before I even realised it. Just quickly grabbed it with barely any looking or thought (who expects gluten stir sticks?!) and even accidentally broke it, guess I assumed it was wooden so I prob handled it a little rougher than a piece of pasta ought to be.

    There was an attendant present but I figured it wasn’t her fault so didn’t feel like making a scene, but I couldn’t let it slide completely. After discreetly making my point (educating, as you properly put it) she told me they changed over because pasta composts more easily than wood, and I’d say this decision came from much higher up on the food chain than her. Whether my point ever got any farther than her, I never pursued, but I’ll be watching if I ever go back there, and I’ll be making my views known if I ever see this anywhere else, too.

    Reply
    1. 1.1

      Molly (Sprue Story)

      John, I had to laugh out loud at the pasta thing, even though I’m sure for you it must have been very annoying/frustrating! It just seems like so surreal. The composting explanation makes SOME sense, but given that you can buy actual compostable coffee stirrers, it seems like a weird cost-cutting shortcut.

      To the pansy—everything you listed is sold in a gluten-free version or can be made according to a GF recipe, so it’s not like you’d really be losing your favorite foods (even though, yes, you’d probably pay more for them and notice differences, especially at first, between them and the “real” stuff). It’s definitely “all the other crap” that is the problem. GD, kudos on an instantly quotable line.

      Reply
    2. 1.2

      Connie

      I’ve seen that before, its supposed to be cheaper than stir sticks. My advice? Get yourself a nice reusable steel or glass stick, and then tell them you’re being “green”. Maybe you might inspire them to make a change too!

      Reply
  2. 2

    Diana

    Thank you for covering the Godiva Cheesecake issue!!!! I contacted them myself having read that disclaimer on their site and going into one of their stores to see what they said there. After talking to Cheesecake factory they told me that “they don’t know why godiva would tell celiacs not to eat their products, the final products tests under 20ppm so it’s perfectly safe.” I was appalled. No matter how I tried to explain to the lady that some people will still react at 20ppm she didn’t believe me. The best part was when I asked her to put this information into writing for me, she kept refusing.
    This is what I finally got back from Cheesecake factory. ~~
    We strive to provide accurate information however, our ingredients change from time to time which is why we have not posted this menu to our website or offer it in an electronic format. We prepared this menu for guests with sensitivities to gluten. Our kitchens are not gluten free and cross contact may occur. Some items may contain as much as 20 parts per million of gluten.

    Reply
    1. 2.1

      Kathy

      I was at the CF recently, and asked for their GF menu. My server said, “I know it says that’s a GF cheesecake, but while it’s flourless, you might want to be careful of the chocolate. I’ve heard from other people it can cause problems.” BRAVO to a server for listening!

      Reply
      1. 2.1.1

        Diana

        Isn’t it sad we have gotten so use to facing people who don’t know or don’t care that when we run into knowledgeable people we get so excited?

        Reply
        1. 2.1.1.1
    2. 2.2

      Sybil Nassau

      First, everyone, please understand there is no such thing as 100% gluten free unless you are picking apples off a tree or tomatoes from your own garden. Even totally dedicated factories and your own gf kitchen will disclose a trace of gluten. It can’t be helped. What we all need to understand is what the 10ppm or the 20ppm designation actually means. Neither can be seen with the naked eye. It is less than a drop in the ocean. It is not even a crumb falling into your plate. It is a trace and 99% of those with gluten sensitivity will NOT react to it. Check the label of every single gf item you buy and bring into your home.If it says processed in a totally dedicated gf factory, look for the 10 ppm or 20ppm designation. That’s as good as it is going to get. Fruits and vegetables are fine,especially fresh, but do not always trust canned. (canned beans sometimes contain gluten). If that label says processed in a facility that also processes wheat- you might not want to buy it especially if you are that 1% who are especially sensitive. Just be realistic about this whole subject; Your own kitchen may offer more chances for cross -contamination than some (not all) restaurants.

      Reply
  3. 3

    Linda

    For the mom with a kiddo with graves: The US uses the worst tests available and GI are starting to recognize that by the time a positive marsh test is obtained serious damage has been done. The blood tests are pretty much worthless, a decent and half in the know GI will diagnose based on an exclusion diet. You do have to do 2 rounds. Best of luck!

    http://www.youtube.com/watch?v=lWjrHadDlpY&feature=em-uploademail

    Reply
    1. 3.1

      IrishHeart

      In the video, Ms. Peterson says that Dr. Marsh thinks that a positive celiac blood panel is sufficient for a diagnosis, and I agree with that, however, I have to disagree with you that the blood tests in the US “are useless”.(and this is coming from someone who is seronegative).

      My response to the mother was based on the fact that her son is still consuming gluten, so a blood test is less invasive. If he tests positive, then maybe a doctor will opt out of the biopsy and DX him, but it is a rare doctor who does not follow what has become the “gold standard”.
      I think this is a mistake, IMHO because a positive panel is still positive.

      Finding a medical doctor who will say “it’s definitely celiac” based on symptom-resolution and medical history alone is going to be difficult. Some people get lucky enough to find en enlightened doctor.
      Again, this is IMHO based on all the accounts I have read from dozens of celiacs and NCGS people through the years..

      If it is negative, the mom always has the option of trialing a GF diet.

      But I doubt any doctor will go straight to an endo/biopsy. Until the protocol changes, unfortunately, that’s how CD is diagnosed.

      Reply
    2. 3.2

      Sybil Nassau

      Another thought for that child with Graves Disease. If at all humanly possible and it were my child, I would make an appt at one of the Celiac Centers for kids: Boston (Mass General with Dr Fasano, Columbia, NYC, Dr Peter Green, U of Chicago, Dr Guadliano, and the one in California (don’t know the name). The sooner the better. That child’s life is in danger and that family needs help. Now.

      Reply
  4. 4

    Brianna

    Regarding the question about coffee … I have noticed that many of my acid reflux symptoms are similar to the way I feel if I have been glutened. I have cut out all caffeinated drinks and this has helped immensely with my morning cup of tea but haven’t been brave enough to try a decaf coffee yet. I’m not sure if this is the case for the person who asked the question but may be a possibility?

    Reply
    1. 4.1

      Sera

      Are you drinking instant coffee or ground? If ground, are you grinding your own? I find I sometimes react to instant and wonder if some brands add a gluten-based starch to keep it from clumping.

      Reply
      1. 4.1.1

        Connie

        The other thoughts that came to mind are – is it flavored coffee? Some flavored coffees do use a barley-based caramel to “flavor” the coffee.

        Also, is it a Keurig brewer? Some contamination is possible from the few brands of flavored coffee and tea drinks that do have gluten in them.

        Is it regular cross contamination? Someone use a glutened flavored coffee in the same maker as the regular coffee?

        if its decaf, is it chemically decaffeinated or naturally decaffeinated (or reduced caffeine)? Some people have reactions similar to a glutening of the chemicals used to decaffeinate the coffee.

        There are SO many questions when it comes to coffee. Not to mention that coffee is used by many people to stir up the kind of digestive side effects that we want to avoid, so many people mix up a gluten reaction and a normal function of coffee.

        Reply
      2. 4.1.2

        Gemini

        Oh, Lordy! Where did you ever get this kind of information? No one uses a wheat based anything to prevent clumping in coffee. Coffee does not clump, even when freshly ground.

        As to flavored coffee, this is not as big of a problem as some believe. Barley is rarely used in the US in flavorings as it is expensive. It used to be more widespread when I was younger but that was decades ago. In fact, most added flavorings are safe for us. You always, always have to read the label but in 9 years gluten free, I have yet to find any flavoring in coffee that was barley based in the US. I know that in Europe, some coffee uses a gluten based grain added to it but that is usually the cheap coffee served up on a buffet table to tourists. There are plenty of Starbuck’s and other great coffeehouses there that do not do this.

        People should really base there knowledge on sound medical publications on Celiac Disease and not browse the internet believing everything they read on a blog. There is way too much misinformation out there!

        Reply
        1. 4.1.2.1

          Tct1971

          Ooh, I’d be really super careful about trusting anything at Starbucks to be gf (other than a sealed package of coffee beans). My stepson managed Starbucks stores for many years, and there is rampant cross-contamination. I confess that I’ve broken down once or twice and had a black coffee from there, in times of caffeinated desperation. But I really don’t recommend it, especially for those who are extremely sensitive.

          Reply
          1. 4.1.2.1.1

            Gemini

            I really appreciate your concern but I have been gf for 9 years and am very sensitive to small amounts of gluten….which pretty much happens to everyone when they do the diet correctly. Really……once you clean out your system from all that gluten poison and heal, at least for me, any hit is 2 days of hell. Having said that……I only ever order one of two things at Bucky’s and they would be a soy chai or a soy latte. Nothing else. I have never, ever been glutened at Bucky’s in 9 years gf. They ask you to inform your server of food allergies and they know me there as I frequent their stores at least 2 times per week so feel very comfortable. I am pretty sure that some stores/employees can be sloppy but if you let them know to be careful with your drink, then it’s about as good as it gets when ordering take out coffee/tea.

            I recommend them to sensitive types but honestly? This whole super sensitive stuff is getting old. EVERYONE becomes more sensitive as time goes on, if they do not cheat and are really gluten free. Most Celiac’s notice this, as they heal. If I can order their drinks and never get sick, anyone else can do this. There is no food involved…..just a coffee/tea drink. I am also very dairy lite and that’s why I use soy and still….never gotten sick. There is protocol to follow as a Celiac when ordering anything out but it can be done successfully.

            In Europe, they are way more food allergy/intolerance savvy than Americans are so no need to fear them when traveling!

            Reply
            1. Tct1971

              Glad it’s working for you. Truly wish I could still enjoy them, but my stepson has seen a lot in his 7+ years with various SB locations, so I’m just not going to take a chance. They use the same steaming wand on the flavored lattes (that absolutely do have gluten in them) as they do on a regular milk or soy latte and they do not clean or sterilize them in between drinks. So even if you have a dairy sensitivity, it’s not wise to get lattes from Starbucks.

              Reply
              1. Gemini

                Your comments are very general and, I think, not exactly representative of the whole picture. If someone as sensitive as I am with both a dairy and gluten problem, can drink a Starbucks drink a couple of times per week and not get sick, then I think it shows you can safely drink at Starbucks, if the staff are aware of your allergy/intolerance. You can watch them make the drinks yourself so why the fear? You are certainly free to avoid whatever you choose to avoid but that does not mean the place is not safe.
                I know many people who drink Starbuck’s drinks and have never had a problem so no need to avoid them. They hire more intelligent people anyway so telling them your needs is no big deal……they get it. Besides, they do not steam the flavoring when making lattes. They steam milk or soy only. The flavorings are added to the cup…..they do not come near the steaming wand. Add to that many of the syrups used for flavoring are gluten free already…..not everything they use but many of the syrups are. I sat and read the ingredients listing myself so to say it is not safe to drink there is incorrect. It’s irresponsible to post on a blog that a good company is not safe when, with a little education, a safe drink can easily be made.

                Reply
                1. Tct1971

                  That’s your personal experience, and I’m happy for you. I’m glad that you can still enjoy your favorite beverages. I’ve had a different experience. I am sharing my own experience, as many people here do. Ask Starbucks and they will tell you that they cannot guarantee the safety of any celiac, due to cross-contamination. People can take whatever information is shared here or on any blog or forum and make their own decisions about how best to live their own life and protect their safety. I’m signing off, as this is obviously no longer a productive conversation.

                  Reply
        2. 4.1.2.2

          Gluten Dude

          “People should really base there knowledge on sound medical publications on Celiac Disease and not browse the internet believing everything they read on a blog.”

          Ahem… ;)

          Reply
          1. 4.1.2.2.1

            Gemini

            Well…..except your blog, of course! How silly of me to forget to add that! We have to have the myth busters, after all!

            Reply
            1. IrishHeart

              lmao…yes, and myth busting takes up the vast majority of our internet time, doesn’t it? Man, .I am exhausted. lol Thanks for your rational thoughts, Gem.xx

              Reply
  5. 5

    Lindsey

    I have the same problem with coffee no matter how it’s made. I don’t think it has to do with celiac. I think some peoples bodies just don’t agree with coffee. I find if I drink it black I don’t have as bad of a reaction, but I still don’t feel great. I had to completely give it up which was almost as bad as giving up gluten. But anything is better than feeling like shit all the time.

    Reply
  6. 6

    IrishHeart

    I agree with you both …:) .coffee can be abrasive on the gut, for sure. If someone has gastritis, coffee is a big no-no– until it resolves.

    I switched to brewed decaf myself because caffeine revs me up and causes heart palps.

    Reply
    1. 6.1

      Sybil Nassau

      Hi there friend! I mix half and half decaf and regular- that’s how we do it and how I can still get my 2 – 12 oz mug-full every morning without overdoing the caffein bit. Folgers black silk and Dunkin Donuts decaf is my preferred combo. No acid problem whatever. Thanks for the info about Keurig pots- will have to watch that when visiting others. Also the info about flavored coffees produced in the US or Europe– years ago I saw barley on the’ label, guess it is not longer true? I don’t drink them but others do, I want to know for sure. Since going gf 10 years ago I have not had a single occurrence of acid reflux which had plagued me for years. I guess it comes down to “each to their own!”

      Reply
  7. 7

    Jessi

    My daughter was diagnosed in April of last year. Her gastroenterologist gave us a letter for the cafeteria explaining her needs for a gluten free diet. With zero expectations, we took it into the cafeteria during open house. We had a meeting scheduled with the school nutritionist the next day and discussed options. Within a month, the school had researched and prepared a meal plan for our daughter, trained a dedicated cafeteria staffer, and purchased dedicated cutting board and supplies just for her. She has been eating two meals a week (salads with gf muffins or crackers or gf wraps). I hope you can get your school’s nutritionist involved, maybe the letter from the doctor will help.

    Reply
    1. 7.1

      Diane Humphrey

      Jessi, sounds like you have a team dedicated to doing what your child needs. That’s awesome!
      A child diagnosed with celiac disease is covered by the American Disabilities Act which requires accommodations be made to provide suitable (in this case, gluten free) meal options. Whether you choose to trust the cafeteria to provide such would depend on how knowledgeable the staff appears to be about what constitutes gluten free.
      We had to provide a doctor’s letter every year but our staff tried to provide for our daughter from the time she entered public school in 9th grade (home schooled prior). They made acceptable changes to the menu most of the time, but often couldn’t figure out what to do to meet her gf needs and the federal lunch guidelines at the same time. I took Tinkyada pasta portioned into serving sizes with cooking instructions to the cafeteria so they were able to make spaghetti and other pasta dishes without flour ingredients. Quite often they gave her extra fries or tortilla chips to make up for the bread they were serving the other kids. I feel like they did the best they could since they are not given training for this area. (Unfortunate, but not surprising considering the pay level for most of the cafeteria workers.)

      Reply
    2. 7.2

      Jami

      I asked at one school and they have me a district nutritionist who prepared the menu and sent it to me in advance for my approval. We moved and the new school said, oh we don’t do that. I acted surprised and said, I was told it was a federal law and a public school has to provide a meal to those with dietary restrictions from a doctor…but that I hadn’t had time to research it, yet the last school did and that’s who told me. I was super nice and polite. They researched it and said, yes, it’s the law, please bring in something from the doctor. I had to sit with the district as they had never done it before. They have a list of approves vendors and for every allergy. We say and made a menu that matched the schools menu to the bestir our ability. Amy’s pizza for pizza day and Udi’s gf buns for hamburger day..dedicated area and plates. Then when we moved schools, did it all over again and even trained the district manager…it’s about educating. My kids love having hot lunches and really I love to have a break. Plus all the kids are jealous of their meals…a change for once :-)

      Reply
  8. 8

    Michelle

    For the Mom with the child who can’t eat at school, that is illegal. The school district can’t do that. She needs to have a 504 plan and they have to provide her with food she can eat.

    Reply
    1. 8.1

      Lisa Mims

      This is legally correct. 504 plans are for disabilities, like dyslexia. She has a right to food at school.

      Reply
      1. 8.1.1

        DD

        I am a school counselor, what they are doing to your child is illegal. A 504 plan would take care of this. It is not just “for disabilities like dyslexia”. That is what an IEP is for. A 504 covers things such as eating restrictions, diabetes and many other things. Just as a child with a nut allergy must be provided with safe food, so must your child. I actually sat in on one of these meetings today. Good luck!

        Reply
  9. 9

    Jennifer

    In regard to the coffee, I have problems with certain brands. I can’t drink Folgers no matter what. I get a gluten reaction to the regular, decaf, K-cup, and instant versions of Folgers. Green Mountain and Peet’s coffees I’ve found to be safest, and I have had even less issues since I started buying whole beans and started grinding them myself. I figured it was probably because most places share the coffee production lines with the flavored coffees that sometimes do contain gluten. So, I am just very careful about the form the coffee comes in and the brand I buy. When I am diligent I have no reaction.

    Reply
  10. 10

    Tct1971

    Hello! I’d offer one caveat regarding the coffee question. If a manufacturer also produces flavored coffees, they almost always process them on the same equipment, and there can be contamination in the plant. So just be sure you do your research regarding your manufacturers/roasters. I happen to know that even though Green Mountain Coffee (the brand most readily available in my area of the country) has dozens of flavored coffees, they use gluten in none of them. Or you can just stick with a roaster that doesn’t do flavored coffees at all. I’ve found it pretty easy to stay safe & enjoy my caffeine consumption with just a little bit of homework! :)

    Reply
  11. 11

    Gretchen

    The question about coffee got me thinking. While coffee may be gluten free, if it bothers a person when they ingest it, then stop drinking it! Not eating gluten may save you from being glutenized, but we all might have other “allergies” or “sensitivities” or “intolerances.” Besides gluten, I know I can not eat dairy (well, duh, that is the same for many of us), some brands of chocolate do me in, corn is an irritant, and on and on. If something seems to bother you, STOP EATING IT, and see how you feel without it. Then do a trial. A doctor is suggesting I do a full on elimination diet and I don’t know if I can bring myself to do it. But I might. Right now I am at the “see what happens” stage. I was shocked to find out that regular allergy testing (under the skin sort of thing) doesn’t tell you whether you are sensitive or intolerant. So. Not. Fair.

    Reply
    1. 11.1

      Gluten Free Makeup Gal

      This is exactly what I was going to say. As Celiacs (or just gluten intolerant) we tend to have more sensitive guts than other people and cross-reactivity is a real issue. I have no idea if coffee actually “acts like gluten”, but I do know people who are intolerant to gluten and also can barely handle coffee. Basically, if it makes you feel “off”, then stop using it. Who cares why it doesn’t feel right. Your body can tell you many things if you pay attention to it.

      Reply
      1. 11.1.1

        Gemini

        Yes, as Celiac’s we do indeed have more sensitive guts but it has nothing to do with the made up non-science of cross-reactivity. It has more to do with the fact that coffee is an irritant for many, due both to the caffeine content and the acidity of some coffee. There are many non-Celiac’s who cannot tolerate coffee.This is nothing new. The only thing different is that there are too many pseudo scientists trying to re-write nutrition/medicine to make money off of people who are sick and trying to get well. They are taking advantage of people to make money and that never sits well with me.

        Reply
        1. 11.1.1.1

          Gluten Dude

          “There are too many pseudo scientists trying to re-write nutrition/medicine to make money off of people who are sick and trying to get well.”

          Oh…can I get an AMEN to that!!

          Reply
          1. 11.1.1.1.1
            1. Jess

              Amen to this entire thread about cross reactive foods!

              Reply
  12. 12

    Gloria @ glutenfreepoodlehome

    The American’s with Disabilities Act requires that the school provide food for the child. If it will be safe is difficult to judge. The more parents asking for it, the more schools will get better at it. Unfortunately most school districts do not have a nutritionist as stated in some of the responses. I am the only dietitian at the only hospital in my large county. I sometimes get requests from school districts for various needs but cannot go out and help them, I just try to send them some information.
    P.S. Irish Heart. My little 30 bed hospital has a gluten free menu similar to the regular even though we only get a celiac every few months. They can order made-to- order omelets, French Toast, pizza, spaghetti, cookies, muffins etc. We mange to provide decent but not elaborate meals and keep the patient’s safe and they seem to love it. Yes, the dietitian is celiac, but any hospital could do this. Hospitals are getting better at it.

    Reply
    1. 12.1

      IrishHeart

      Part of my response was tongue-in-cheek, as I am sure you could tell, Gloria. :)…. and I do hope there is more done to ensure completely safe and free-from-CC meals for celiacs in the future.

      I am glad your hospital gets it, but I can tell you that not one celiac I know who has had to go in for surgery has had a knowledgeable celiac on staff that could help them out. I hear more horror stories than success stories
      and a large hospital cafeteria does not have time to accommodate some folks. My friend’s shrink-wrapped GF meal contained a banana, a yogurt and a corn muffin in it. This came after she was asked, “but, can you eat corn?” she said yes…. (but it was made with wheat flour in the mix).UGH

      On a brighter note, there are some assisted living places who are catering to the needs of GeeFreers, so….when the time comes and I need a place like that, maybe it will just be the “norm”. There’s always progress being made. Cheers!

      Reply
      1. 12.1.1

        Sybil Nassau

        2 knee surgeries a year apart, 2 – 3 day hospital stays, 2 – 1 week
        rehab stays. Two terrible experiences. This was 3 years ago.. The hospital experience was the worst- they were limited by what they could order from the supplier which wasn’t much. The rehab place
        really tried but after 3 days of scrambled eggs, cottage cheese, and hamburgers without rolls, I gave up and allowed friends to bring in’
        meals from a local place that had gf food to go. They have since told me there have been many more gf patients and they are doing much better as a result of my educating them! Hello???

        Reply
  13. 13

    Connie

    To the person that has the office buying snacks for everyone, if the company is purchasing them with the expectation that the workers eat them, you can file an ADA claim to get them to provide gluten free alternatives. If its just people bringing them for everyone to share, than the best bet is lock them in your desk. I have a dedicated supply of GoPicnic, snacks, and bars in my desks for the times when I need something, and I willingly share when other celiacs and GI folks come to visit.

    Either way, I would start making the argument for “healthy” and “environmentally friendly” snacks. Things like Rice Chex cups, trail mix, nuts, dried fruit, hard boiled eggs, and yogurt cups can be procured in bulk for decent prices from almost all major catering companies. If they’re not married to one company, GoPicnic regularly runs meal specials that get down to less than $2 apiece in bulk purchases.

    Especially this time of year, you can usually make wonderful inroads with folks because eating things like nuts, fruit, eggs, and yogurt instead of Twizzlers, chips, and Lucky Charms can help them in their efforts to keep their NY resolutions and lose weight.

    Reply
  14. 14

    Aloha Julie

    To the person who wrote in about how far should they go to get a diagnosis and that their biopsy was negative: since celiac disease is linked to heredity, I would also suggest getting the gene test if they can afford it. (some insurance co. won’t pay for it). The HLA DQ2 and HLA DQ8 genes are markers for celiac disease. The HLA DQ2 is the most common gene associated with celiac disease. Dr. Sheila Crowe, a professor in the division of gastroenterology and hepatology in the department of medicine at the University of Virginia, reported in an article for the New York Times in January 2010 that “These genes are in the family of genes for proteins referred to as human leukocyte antigens, or H.L.A. A subset of these genes are involved in autoimmune diseases, and the genes that predispose to celiac disease are in that group.”

    “Some of these H.L.A. genes can be tested using a sample of blood or cells taken from your mouth by swabbing the inside of your cheek. They are known as H.L.A. DQ2 and H.L.A. DQ8; 95 percent of people with celiac disease have genes that include H.L.A. DQ2, and 5 percent have genes with H.L.A. DQ8.”

    “Tests that detect H.L.A. DQ2 and DQ8 genes can suggest a diagnosis of celiac disease, but they cannot confirm a diagnosis, since 35 percent to 40 percent of the overall American population carries these genes. Only a small subset – 2 percent to 3 percent — of all people with these genes will ever get celiac disease.”

    “What this test can tell you is whether you are at risk of having celiac disease, since without these genes it is virtually impossible to get celiac disease. This is one celiac disease test that only needs to be checked once in a lifetime, since our genetic makeup does not change.”

    What I find most interesting is that she states “if you do not have these genes it is virtually impossible to get celiac disease.”

    My blood test and biopsy was negative too. But I had been off gluten for 3 months and did not know I needed to be ingesting it for these tests. I went ahead and had the gene test done and a biopsy of a skin rash on my left leg and arms. The skin biopsy came back as positive for dermatitis herpetiformis. The gene test showed that I have HLA DQ2 and HLA DQ8. I was diagnosed with hypothyroidism in 2007. Also, associated with celiac disease.

    For me personally It was plain and simple, I wanted to know if I had an auto-immune disorder or not.

    Thanks GD for all you do and reminding me that I am not alone.

    Aloha!

    Reply
    1. 14.1

      Gluten Dude

      Thank YOU for your wealth of information. Now can you come help me shovel my driveway?

      Reply
      1. 14.1.1

        Aloha Julie

        hahahaha I can take that comment 2 ways; one, my wealth of information really needs a good shoveling and I have too much time on my hands or you are referring to all the snow you’ve been getting as I sit on my lanai watching sunset every night with cocktail in hand. I’ll assume the latter and the answer is NO! This is why I live Hawaii and I have more time on my hands, no snow here! Well there is snow on occasion on Mauna Kea but that is totally cool.

        :-)

        Stay warm GD!

        Reply
  15. 15

    jacquie

    Hey dude–a few of your recent posts were about testing, specifically having to restart a gluten diet to get accurate results. I follow the University of Chicago’s celiac center’s website, and just today they posted an article about a new that yields an accurate diagnosis in 24 hours. Thought this was worth sharing.

    Reply
    1. 15.1

      Brett GF

      Can you give the specific link, couldn’t find it. Thanks.

      Reply
    2. 15.2

      IrishHeart

      Brett, jacquie
      I saw that article, too but please notice it says they “MAY have found a way to diagnose it after a 3 day gluten challenge
      and then, the results are available after 24 hours.

      They conducted a study with a mere ” 27 subjects with CD and 17 without.” and they underwent three days of a gluten-rich diet, and then took a whole blood test.

      “….may have found an alternative, and one that could not only diagnose CD, but catch it before the damage has been done. And the entire process takes four days or less, with test results in about 24 hours.

      The researchers say the test can determine CD with 85 to 94 percent specificity and exclude those who don’t have it with 100 percent specificity. Tye-Din and his team published their study results in Clinical & Experimental Immunology.”

      I can see it now: the people who criticize the current testing (with a 98% accuracy) will view this skepticism. Until that research is peer-reviewed out the ying-yang, that test is not going to be available for a while.

      …but if it survives rigorous testing and it works, HALLELUJIAH!!! :)

      Here is the article, (but what is maddening is the use of the term “gluten allergy” when referring to celiac. argh.)

      http://www.healthline.com/health-news/food-new-blood-test-for-celiac-disease-011714

      Reply
  16. 16

    Dawn

    Thanks for putting up my Godiva Chocolate issue. I did contact Cheesecake Factory who insisted they test their cake. Cake may be flourless, but that chunk of chocolate is not gluten free. The whole concept just makes me angry, I do not ask that you cater to my needs, but do not falsely advertise something as being safe.

    Reply
  17. 17

    IrishHeart

    RE: the study done on a 4 day gluten challenge/24 hour DX?

    Here is what U of Chicago Celiac Center Founder and Medical Director Dr. Guandalini says about it: “The study is very interesting and promising, especially as a quick diagnostic tool when positive. But when negative, it cannot exclude celiac disease, as it is not sufficiently sensitive. The study included only a small sample, so as the authors caution, its results are not ready to be utilized in clinical practice. It is also likely that it will apply only to those patients with the specific genetic profile of HLA-DQ2·5+. Those with the HLA-DQ8 gene do not seem to respond with an immune response to gluten peptides after an oral gluten challenge. More studies need to be done in other centers (to document reproducibility) and on a larger population.”

    Reply
  18. 18

    John

    Hi all,

    I was the one who mailed GD about getting stuck with the pasta stir sticks and I just wanted to pass along this update.

    Last week I returned to the “scene of the crime” for another event, about a year after that incident. I made a point of checking out the complimentary refreshments and I’m very happy to report that while they still had pasta stir sticks, there were wooden stir sticks made available. Huzzah!

    Since I admonished them last year (and to discourage any backsliding), I felt I had to be fair and pass along some kudos this time. I had a great chat with the attendant. She said they’d gotten a lot of feedback from concerned folks like me and she seemed very aware that gluten is a total no-no for some people. She even added that she now goes out of her way to make sure there are GF stir sticks available at every event she manages.

    Progress. Isn’t it great?

    Reply
    1. 18.1

      Gluten Dude

      It’s certainly better than congress ;)

      Reply

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