Celiac Awareness? We’ve Got a Long Way to Go Folks.

celiac awareness progress

I’ve had celiac disease for over 6 years. I’ve been blogging about it for over 3 years. I haven’t found myself weeping in a corner about it in over two years. And I haven’t drooled over real pizza in over a year.

In this time, I think we’ve made great progress in celiac awareness.

There are less B-list celebs jumping on the bandwagon.

The media does not quite butcher celiac as much as it used to.

Heck, I haven’t mentioned my buddy Dean McDermott in ages. Now THAT’S progress.

But then we have a stretch like these past few days and I’m left banging my head against the wall. Not an unusual occurrence mind you…probably explains a lot…but still more so than usual.

What happened? Let’s recap this week’s episode of “How My Stomach Turns”.

A hospital serves a celiac a cookie.
Our own Jennifer Esposito had an endoscopy this week. She gets em once a year to make sure her villi are happy (they are!) As she is coming out of the anesthesia, what does the hospital offer her? Yep…a gluten-filled cookie and a sugary drink. Thankfully, she was alert enough NOT to eat the cookie and actually had a nice chat with the staff afterwards. This is a hospital we are talking about. You know…the one where doctors and nurses who went to medical school work.

A doctor gives the wrong advice, which would have wasted time and money. Not the doctor’s of course.
I received an email from someone who is going to get tested for celiac on April 13th. We went back and forth about a few items and for some reason I decided to remind her that she MUST be eating gluten consistently for about a month or the tests will not be accurate. I figured she knew that because she was under a doctor’s care. Nope. She was told to remain gluten-free until the procedure. When a blogger is correcting a doctor’s medical advice, you know we have a problem here.

A doctor “cures” someone’s celiac.
I follow a celiac complaint support group on Facebook. One woman wrote in that her husband no longer has celiac. How does he know? Because he got another endoscopy and it showed the villi had healed. So the doc said his celiac was gone and he can now eat gluten. And that’s exactly what he does now. Of course the villi has healed if you are gluten-free! That’s the whole point of why we eat gluten-free; to heal…but not to cure. So this guy is going to be in a world of hurt before long.

I could go on…but…well I really just don’t feel like it.

Point made…we’ve got a lot of work to do folks.

One step up…two steps back.

Take it away Mr. Chesney (cool version of this song)…

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46 thoughts on “Celiac Awareness? We’ve Got a Long Way to Go Folks.”

  1. I was in the emergency room at a well-known hospital recently. Had to remind the doctors/nurses to check to see if the medications they were giving me had gluten. A nurse said “I didn’t know medications had gluten.” I really shouldn’t have to tell them about that.

    1. I had a GI prescribe something for IBS recently. I asked him if he knew if it had gluten. He realized he didn’t know the answer and said to verify with the pharmacy. But he didn’t believe meds had gluten in them.

      1. Upon discharge from the Army, I gained access to my actual medical records from my years of service. I was formally diagnosed, biopsy confirmed, with celiac disease while serving. A year and a half later, my official Department of Defense, Veterans Administration file reads: “Irritable Bowel Syndrome.” 1/100 right?

        ’nuff said…

        Celiac Soldier

  2. I’ve been hearing lately that hospitals are notoriously bad about serving celiac patients gluten-filled food. I’ve been visiting a family member in the hospital a lot and realized that if I was admitted, I’d have to have my family bring me everything to eat. You’d think that doctors would get it since it’s a real disease! Sigh… I think the more we work on getting the right messages out there though, the more hopefully, that people will begin to understand!

    1. This happened to a celiac friend of mine who was in the hospital being treated for complications from celiac disease! They KNEW she was a celiac and continued to serve her cross contaminated food. The dietitian had no clue at all that the food was being cross contaminated by the cafeteria staff. She finally got permission for her family to bring her meals into the hospital.

      Unless you are being treated at the Mayo Clinic, you can’t let your guard down. You might as well be eating in a restaurant. Don’t count on the hospital to serve you safe food.

    2. When I had my baby last year we arrived at the hospital Wednesday afternoon, and the first gluten free meal I was given was Friday morning. All meals before that had gluten. Thankfully I had brought lots of food with my and my parents brought me more. The gluten free meal I eventually got looked okay but I didn’t trust them so my husband ate it. I don’t know what they expected me to eat between Wednesday afternoon and Friday morning (I had the baby Thursday morning).

  3. Dennis Hemingway

    I’ve had the nutritionist at the VA Hospital tell me that a little gluten would not hurt me. My nurse told her that he’d call her to do the cleanup if she fed me any Gluten. After that my kids went to the store and bought me gluten free food and the nurses let us use the microwave in their lounge to cook it.
    Then when I had my strokes the nutritionist tried to give me cereal with malt in it and when it was pointed out to her that malt had gluten in it she asked my wife to give a class to all in the kitchen, and she did for all 3 shifts. My wife is a resource unit with CSA and CDF.

  4. The same thing happened to me a few years back. I requested that my doctor test me for Celiac. He told me that he would not test me until I was gluten free for 30 days. I didn’t have the willpower to give it up at that time. AND I didn’t know any better….that I had to be ACTIVELY eating gluten to be tested. Boy am I glad I did not. I would have quite possibly gotten a false negative. The sad part is, if he knew what he was talking about, I might have been diagnosed YEARS before I actually was.

  5. I spent the night in a hospital in December after my thyroid was removed. My nurse, after we had a chat about celiac and medications, told me he didn’t know if the pain meds he tried to feed me had gluten or not. He sat there while I looked up the manufacturer for one, but couldn’t tell me the info for the other. (And the nursing staff made NO attempt to look up the mess / ensure they were GF on their own). When I refused it, he said, “wow, how sensitive are you to it?” I tried explaining that it wasn’t a matter of sensitivity, it was more what gluten did to me…and he cut me off, saying he had a celiac aunt, was very knowledgable on celiac, and I must be very sensitive.
    Very scary, if people they’re treating are out of it, too young-sick-tired to advocate for themselves.

  6. In reference to the cookie incident, my son had tubes put in this month and we were told at preop they would offer snacks and drinks when he came out of anesthesia. I mentioned his celiac (which is in his records) and was advised to bring our own snack and drink which I did. Day of surgery I advised nurse checking us in again of celiac and that he could not eat/drink anything unless it was gluten free and that we had our own. They put an “allergy” band on him. Nurse comes back to advise he can drink something with the first med they give him and offers to get him something. I again remind him that we have something for him due to Celiac. After surgery a new nurse wheels him back and offers to get him some crackers as he is waking up. Again, I mention he has celiac and we have our own snacks for him. We are in a hospital, it is in his chart, he had an allergy band on and I still have to tell each person he comes in contact with because they have not told each other, looked at his chart or noticed his band. This was very unnerving and frustrating.

    1. Situations like the one you describe teach us that if you’re going in for surgery on your RIGHT leg, get a marker and write “DO NOT OPERATE!” on your LEFT leg.

      I’ve had to intervene in an emergency room when I realized that the nurses had confused my daughter with another patient. They were trying to give my daughter a steroid when she had been prescribed an antibiotic. When the nurse got upset with my “interference” I asked her what she thought my daughter’s name was. When she got it wrong, she ran out of the room trying to stop her colleague from giving her patient my daughter’s antibiotic.

      You really do need a patient advocate when you are in the hospital. You can’t count on the doctors and nurses to look out for you.

  7. My former doc refused to check for vitamin deficiencies. I was worried my B levels were low due to how tired I was. He (ignorantly) said because my iron levels were fine my B levels would be also. It was in my file I had an iron infusion that brought my levels to normal.

    Every complaint of something wrong (sleepiness, excessive hunger, brain fog, etc.) he came back and said it had nothing to do with Celiac. Eventually he said nothing happens to CD patients other than GI issues. I immediately left him and went to Columbia Univ. Surprise! All my B levels were low.

      1. Tell me about it. I struggle with exhaustion and concentration the most. The only time I have GI issues is if I eat gluten or my IBS is flared up.

  8. As a fellow celiac and nursing student I am truly shocked at how little medical professionals know about celiac disease. The lack of knowledge is due to the limited information about celiac disease in medical school and nursing school. Most doctors that I have come across still associate celiac disease with stomach pain only. I do everything I can to educate my classmates and medical professionals that I work with about celiac disease and all the symptoms that a patient may present with. However, it is incredibly frustrating to realize how far behind the medical community is.

    1. Jessi, the reason I was misdiagnosed for so long (I have Celiac too) was because most of my symptoms were head related and not gut related. Severe depression, anxiety, cog fog, migraines, body aches, etc. So all of my doctors for 20 years never thought once to check for Celiac. When I finally went to the ER with severe stomach cramping they ordered me to have an endoscopy. The GI doctor who did this was very knowledgeable about Celiac. That was the greatest day of my life to finally have an answer after years of suffering and hoards of medical bills. Please don’t stop educating your colleagues.

  9. I had an endoscopy last year after being g.f. for 3 years. THREE YEARS. They wanted to rule a bunch of things out, and my GI doctor was convinced I had Celiac Disease based on a list of other symptoms and etc. Yup, me too doc, hence the gf for 3 years. He left during the process of test planning, and the new doctor planned it for 9 days after being back on gluten. NINE DAYS. We fought about it, he was convinced it would be enough, and guess what? The test came back… wait for it… NEGATIVE. Well, who is shocked? So he is sure I do NOT have Celiac disease, based off of that lousy test, and I refuse to go through that hell one more time to be retested.

    I don’t need the official diagnosis, no thanks.

      1. The part the kills me, is that when my original doctor was leaving, everyone assured me about “how great” this new guy was (he had been there before) and how “qualified” he was. Umm, really? I would like to disagree.

    1. I’d have to agree. If you’re eating gluten free now, it’s not worth the pain and suffering to just get your doctor’s permission to eat gluten free. Even if you fail the test again, you could have NCGS and would need to eat gluten free anyway. So what’s the point in doing the test after three years on the diet? Who needs to know that badly?

      Why not get the genetic blood test done and see if you carry the genes that would allow celiac disease. At best you could rule celiac disease OUT and it’s far, far less painful.

      Besides, no matter what the doctor says, you know you’re not going to go back to eating gluten. It would make you sick no matter what the reason.

  10. For four years, everytime I brought up the strange things happening to my body the stock answer was either “you are getting older” or “it’s stress related”. Well, I was working on a biology degree so to some degree it contributed but even I knew that the migraines, constant nausea, absolute exhaustion, brain fog, etc. was not due to my advance age of late 30-something or college. The last straw was when I went to a doctor that decided pretty much on the spot that I had thyroid issues based on my symptoms. She put me on thyroid medication before the test results were even in and when I told her I was still feeling like hell after a few weeks, her answer? Double the dosage. Then she put me on a very low dosage of Doxapin, a tri-cyclic antidepressant, to supposedly help boost my immune system. Fortunately I asked for the detailed printout at the pharmacists (who incidentally printed my prescription wrong, 1 ml instead of 1 drop per night) and read the possible side effects. Long story short, even after following the correct dosage, I had extreme side effects – rage and suicidal thoughts included. I gave up on traditional medicine after that and found an awesome alternative medicine doc. He actually listened and tested for everything under the sun to find out what was wrong – gluten and dairy. I am feeling much better these days but still have irritation often so I am planning to visit a G.I. and nutritionist to help things along. Any advice on dealing with them?

    1. I, too, was in my late 30’s finishing my degree when I was at my wit’s end with my symptoms…everything you listed there. I was also told that it was “stress” and that I needed to relax. I was offered anti-anxiety meds and I refused (although I thought about it…I was starting to believe I might be crazy after all…I mean multiple doctors were telling me this). The only way I healed was when I went completely gluten-free on my own (including taking cross-contamination very seriously). I am so much better now…my symptoms disappeared one by one over the course of a couple of years (but dramatically improved within a few weeks). I would have loved to work with a nutritionist…so you may have an advantage there. Ask their views on food/chemical sensitivities and listen carefully to how sincere and knowledgeable they are. Plus there are doctors out there who get it….you just have to keep looking. If all else fails try an elimination diet and listen to your body/mind. Be strict and honest. I didn’t keep looking for the right doctor (after 8 years of trying) and do not have an official diagnosis…which causes issues sometimes, but not enough issues to EVER go back to the food (gluten) that was poisioning my body…and my brain. Good luck!

      1. Jennifer (and everyone!), Thank you for the advice on dealing with the doctors. I’ve been quite impressed with our local medical facility so far and have been assured that the recommended docs are used to dealing with Celiac patients. I remain skeptical but we shall see. My discussion with the nutritionist was encouraging. Good luck to you too.

  11. I was diagnosed Celiac while my daughter was in labor with my first grandchild January 5, 2015. I was teaching her lamaze (they don’t do that anymore??) Her husband took over while I took the call as I was on call at work. Doctor said endoscopy (that was done to see if I had an ulcer) revealed that I had significant villi atrophy and had Celiac disease but we needed to do bloodwork to confirm. Because of the situation with my daughter (in severe labor pain despite pain meds she was given) It left my mind as quickly as he said it. I told him ok, I would deal with it when my grandson was born and my daughter was ok. He congratulated me and I returned to the delivery room. It would be the following afternoon, after my grandson was born that morning January 6, 2015. We left mid afternoon and in the car going home, an hour and a half drive, I was telling my husband about the call. I had remembered something about Celiac. I called the doctor’s office (on speaker phone so my husband could hear too). The nurse said I had been diagnosed with Celiac but we needed blood work too, and when could I come in to have it drawn. As luck would have it my husband was going to the primary care doc the next day and I go with him anyway (he is disabled). So I had blood drawn the next day and diagnosis was confirmed January 8, 2015 just before I was going in to care for the developmentally disabled gentleman I take care of. What in the world would I eat? My husband and I scrambled literally to pull things together for me to eat for a couple of days in quantities the individual supported could eat too. (He is 52 functioning as 4 year old — what’s his is his and what’s mine is his when it comes to food). I survived and came home on Friday night to begin some research and spent the weekend and monday in bed with a sweatsuit on and the electric blanket cranked up and a quilt. I stumbled a lot to start with, in fact a little more than 2 months in, I have been glutened by a poor choice at a restaurant (rice–had seasoning containing gluten); poor choice of salad dressing but the worst is by my gastroenterologist. I have followed up with him and his staff 3 times since diagnosis. The two PA’s didn’t know how severe my Celiac was, how to treat the severe constipation I was having etc. I had my regular doctor to send me to a nutritionist (smartest person on my team) and test me for the big 5 allergens and found me allergic to Milk The doctor himself, when I saw him last week, prescribed 2x dose 2x day miralax, 2 gelcaps a day of Amitiza and for me to check the gluten content of the medications I was taking. He said the pharmacist should know. The pharmacist didn’t know. I called all 11 manufacturers and while I was at it, I contacted the manufacturer of my salad dressings. Of the 11 prescribed medications, 1 had gluten. The Amitiza prescribed by the gastroenterologist. 10/11 had a dairy component. I have asked my primary care doctor about being seen by an allergist to find out what component of dairy that I am allergic to so that we can make an informed decision regarding the 10 meds with dairy (actually 9 because the Amitiza has dairy). Only one medication lisinopril was gluten free. Check your meds folks, you can be sure the pharmacist and doctor will not be. You are responsible for your advocating for your best health.

  12. This stuff is too painful to read. But on a more optimistic note, understand that leading Celiac research labs and the Amer. Gastroenterological Assn., etc. have publicly advocated for FDA to make all drug products gluten free.

    Keep watching

    1. Agreed it is a step forward but—What about educating their members? so we celiacs can safely be treated while unconscious without an advocate present?

  13. While I whole heartily agree there needs to be a lot more work, I do want to point out that we need to be applauding those out there who do take it seriously. My son’s celiac symptoms came out rearing it’s ugly head after an allergic reaction to crab meat when he was 8 years old. Months went by with him LIVING in the bathroom for 6-8 hours during the day followed by 4-5 hours every night for months. Thank God we homeschool our children because I can not imagine going through this experience he has had with a school. After rounds of typical tests with the pediatrician, he went GF for 2 week prior to finally seeing a ped GI doctor. He was wonderful and completely understood what to do. Making my son go back to eatting gluten foods was scary for my son, despite still having symptoms, because we starting fearing this was truly it, but the doctor knew he had to in order to get accurate test results. 2 weeks before delivering my 5th child, he was at the hospital undergoing both a upper and lower scope to check on everything. He was able to tell immediately this was what we were looking at.

    I appreciate the honestly and complete understanding this doctor has had for this disease. Not once have we had to run around dancing to have things looked into or done correctly. He knew the symptoms of this disease and didn’t waste time getting a diagnosis. Fast forward almost two years now, this doctor has been a blessing in our lives with the additional problems my son has experienced (long story here, but don’t ever have a well meaning friend bring over both homemade GF cookies and gluten end cookies that look alike … In our case they were switched and it took my son well over 10 months to get his life back, with temperarally having 4 months being diagnosed as sucrose deficient due to the severity of the damage, eating only eggs, meat, and about 10 vegetables to be able to keep symptoms at bay and help healing.) this is a doctor who gets it and has even started up a local support group for the area children he treats and does not treat. The world around us is full of those who don’t understand, get it, respect it, or care, but those that do need to be appreciated.

    Thanks for your posts, they always seem to entertain me and help me keep my wits about me while having to adjust our lives to keep my son healthy. Likewise, your post help me to keep an eye open for situations I don’t always think of. Just because I am blessed with a great doctor to treat him, I forget sometimes to stay vigilant for those who might not be as knowledgable. Keep them coming.

  14. Thank you for your post. Recently my sister has started developing symptoms of Gluten Ataxia. ( I have been trying to get her to be tested for years) She finally asked her Dr. if she should be tested. I had to send the antibody test info. to the DR. office with her so they would know what to test for. This is absolutely unbelievable. The DR. and Nurses were looking up the info on the internet! REALLY!

  15. I’m glad I have such a good Doc. I was off gluten for over 3 months when I went to see him for a physical and we discussed Celiac and getting tested. He said I’d need to go back on gluten for 3 – 6 weeks. We looked at each other and both laughed. His was response was “you’re so much healthier, just keep avoiding the gluten”.

    Going to the hospital or the ER – now that’s another matter! The ignorance is astounding.

    And Thanks, Gluten Dude for all the work you do!

    1. I think we must have the same doc…that was the exact reaction I got as well. The difference is I was one of the lucky few celiacs (sarcasm) who ended up with dermatitis herpetiformis completely covering my back. As soon as he saw that he was like “No way am I going to put you through that just to get a test to tell us what we already know”.

  16. A bit off topic…just a heads up that it’s not just food and meds you have to watch out for with regard to gluten…anyone doing renos or construction needs to be careful of gyprock because it also contains gluten and any sanding puts it into the air which can be ingested by inhaling it (similar to what happens with baking flour puffing up into the air when dumping it into a mixing bowl).

    1. Thanks for the warning Renee. We’re about to do some home renovations. That was not even on my radar for gluten.

  17. There are so many posts, I almost didn’t comment. My bang head wall moment today made me have to post. I literally argued with my grandmother’s doctor today to get her tested. I said “Three grandchildren, one great grandchild all have celiac. She’s had five miscarriages and as long as I can remember she’s had diarrhea after every meal. As she calls them ‘sit and suffers’. And none of that warrants a simple blood test”. His response “she doesn’t present any symptoms and we did an endoscopy for her Gerd in 2009, we would have seen it”. Really, almighty doctor, you would have been looking for it? Really? I had an endoscopy quite a few years back and no one noticed my celiac. Of course I didn’t have to ask for you to look for it or anything. (Noooo, we don’t have to be our loudest advocates or anything) … Because you just noticed it all on your own, now didn’t ya.

  18. I was diagnosed with celiac 13 years ago, although an endoscopy was never performed. I had a positive antibody panel, and my doctor at the time recommended against the endoscopy, because, back then, my throat and mouth were covered in ulcers. I had a lot of inflammation. Her thought was that shoving a scope down my throat would only add more inflammation. She suggested simply going on a gluten-free diet and seeing if there were any changes. (The ulcers weren’t, by far, my only symptoms.) After a few months of being gluten free, the difference in most of my symptoms was almost unbelievable. (The ulcers among them–they vanished, and only return if I get glutened.) She was satisfied to make the diagnosis based on lab results and the dramatic improvement on a gluten-free diet. The diagnosis came as a big surprise to me.

    I’ve recently been having to see specialists at a major teaching hospital for other, continuing health problems. I have found particular animosity to my mention of celiac or gluten from neurology specialists. One neurologist wouldn’t even let me finish the sentence when I started to say “I was diagnosed with celiac disease…” He cut me off and wouldn’t let me discuss it. He said that if I really wanted to be diagnosed, then maybe we should run another celiac panel. I said there was no way I was going to eat gluten for a month and make myself that sick, just to prove what had already been proven over a decade ago. (Even the slightest amount of gluten makes me violently sick and makes my neuropathic pain go through the roof.) He insisted that I didn’t have to be eating gluten to have accurate celiac testing. (This guy is an up-and-coming neuro researcher/doctor at a big teaching hospital.) About a month later I saw the report he’d sent to my internist. He said that I’d *diagnosed myself* with celiac three years before. (I don’t even know how he came up with 3 years!) And that I hadn’t had an endoscopy back then because I refuse medical procedures and am, basically, an irrationally noncompliant and unhelpful patient. (I’d questioned his recommendation to have a lumbar puncture. He hadn’t liked that.) We had never discussed why an endoscopy had not been performed back then.

    I also had another neurologist tell me that I couldn’t have celiac, because the antibody test she’d ordered (without telling me) had come back negative. I told her, of course it came back negative! I haven’t eaten gluten in over a decade! She then argued with me, insisting that it didn’t matter if I was consuming gluten or not–the tests would come out the same.

    I find this ignorance among neurologists particularly depressing, given how much is increasingly coming to light on the connection between gluten sensitivity and many severe neurological problems.

    And… don’t get me started on the time I was hospitalized for 4 days! They told me to have someone bring food for me, because there wasn’t much they could feed me. I didn’t have anyone willing to do that. Recovering from major surgery without much to eat is no fun.

  19. Oh…I’d bang my head against the wall after reading some of this except the migraine I’ve been dealing with today advises me not to. Thankfully I have gluten free meds to help, but I had to teach my doctor about gluten free drugs.com. To her credit she did suggest testing for celiac disease 18 months ago ( after my intestine ruptured and I almost died); however the gastro who did the endoscopy was only good for diagnosing-he did nothing else and told me he knew nothing about nutrition when I wanted to know why my hair was falling out! I was so frustrated I left in tears.

    I cried a lot those first few months but I also got mad and told my primary care doc I wanted better care. She suggested the Cleveland or Mayo clinic. Cleveland is closer to me but still 4 hours away. I made an appt and told them I needed a doc knowledgeable about Celiac disease. I got one and I’m keeping him! When insurance questions why I travel so far for care that could be given locally, I tell them and they back down. They no longer argue when I refuse to take generics that could have gluten. I still find myself educating other docs I see and when they spout incorrect information I tell them (nicely but firmly) that they are wrong and inform them about the research that contradicts their outdated views.

    I used to trust that my doctors were the experts and I should trust their judgement, but no more! I am not rude but I have learned to be assertive. It’s my health and I am working hard to keep it-I no longer put up with crap! Interestingly, I have found this attitude helps in other areas of my life too. Gluten Dude, you and others who post here have been so helpful to me- please keep up the good work and don’t bang your head too hard-we need you!

  20. Must be the week. Something I’ve been frustrated and passionate about for quite a while and finally decided Monday to take steps towards doing something about it (as I shared on my page.) I got home tonight and found more than one message telling me to read your blog, as my project has already created a lot of interest. The idea of creating change in hospitals in our country to be safe for those of us who are gluten free is beyond overwhelming. But not doing anything gets nowhere. My effort, #100Hospitals, is a relatively small project, but it is at least a start. Starting with a single goal. Who knows where it will go from there. Sometimes the rain starts with a few drops before it takes off.

  21. Yep. Long way to go, for sure. I have been gf for 15 years and the medical community doesn’t know much more about Celiac now than they did then. Makes me wonder how many other diseases they actually know little to nothing about, as well.

  22. I’m a celiac with a whole host of other food allergies. The last time I had to go into the hospital, I contacted the food service manager and asked them if they could safely feed me. She flat out refused to feed me, and told me that someone would have to bring me food three times a day as patients didn’t have access to any refrigeration or way of heating the food, like in a microwave. My poor husband ran back and forth from work to the house to the hospital bringing me hot food for the first few days, until the charge nurse noticed what hubby was doing, and told him to bring in my food, labeled and in a microwave safe container with a large zip lock bag with my name and room number on it to prevent some one from eating it or possible contamination, and they would heat my meals up for me. And while that was nice of them, it blew my mind that they wouldn’t even attempt to feed me, or supply me with juice!

    Our medicine is safe food, and to not be fed while in the hospital is beyond terrible. They cater to every other issue, why not us!

  23. I had my first dream about eating gluten last night (I’ve only been GF since new year’s). It was pizza. I realized during the dream what I had done, noticed that I didn’t feel glutened at all, and immediately thought, “Oh shit, the doctors were right–it WAS only the placebo effect!”

    It seems a little weird to be waking up relieved that I’m still reactive to gluten. But the alternative–not knowing what the heck was going on and blaming myself for being a deficient human being–was so much worse. I’m all for the placebo effect when it helps people feel better, but not when its presumed existence gets in the way of an actual diagnosis.

  24. I’ve been served gluten-filled items at hospitals and clinics before too. I think the problem is that it is not clearly noted when a patient has celiac disease like in their file, notes, a bracelet, etc. I’ve gone in for procedures and said, “oh hey, by the way I have celiac disease.” They just kind of smile and nod, they probably don’t even know what I’m talking about. But if I were to say, “I have a peanut allergy” it would be noted. Why is Celiac Disease so diminished?…

  25. I’ve been reading a book called “Understanding Celiac Disease for Patients and Caregivers” (2014) that has been very illuminating. It states that the main reason that Celiac Disease is not as widely understood in the US as it is in other countries is that in the US funding for medical/pharmaceutical research is mainly provided by pharmaceutical companies unlike other countries where that type of research is funded by the government. And since there is no pharmaceutical treatment and the disease is so elusive and different for each patient, the motivation is just not there for the money to be allotted for research on Celiac disease. It makes a lot of sense and I can attest to the fact that when you go to the UK and mention Celiac disease to a restaurant manager, they know what you are talking about and will bend over backwards to accommodate you. And diagnosed Celiac patients in the UK actually receive a prescription from their doctors for gluten-free food.

  26. PS – I think it is very important to state that when explaining what Celiac disease you state that it is an autoimmune disorder rather than saying you have an allergy to gluten. The term “allergy” seems to automatically make people dismiss it unless, of course, you are talking about shellfish or peanuts.

    I’ve certainly noticed a difference in reactions when I say “Celiac disease is an autoimmune disorder that causes my body to attack itself and destroy the villi in my intestines” The response has been “Oh, wow!”, accompanied by a concerned face, rather than the bored look I usually get as a response to “I’m allergic to gluten”.

  27. And let’s not leave out the dermatologist who does a skin biopsy finds Dermatitis Herpetiformis (DH) and tells the patient you might want to consider a gluten free diet. Nope doc wrong again. DH confirms Celiac and considering a gluten-free diet is considering being sick the rest of their life.

    We have explained at nauseum to care givers, teachers, doctors, etc. for the last 8 years that Celiac is an auto immune disease and it doesn’t seem to have the quick reaction to concern. An allergy seems to be in most people’s vocabulary and I do appreciate the places that actually ask when you ask about gluten free if it’s a preference or an allergy. The difference with those that take the allergy approach is that the restaurant does more to avoid cross contamination. While I’m not saying there are lots of places that need more training, I do appreciate that they understand the difference (

    Unfortunately, until they have someone who is affected by Celiac Disease the message isn’t fully received. For those of us have loved ones with Celiac we study, listen, research and do all we can. We can’t really expect the general population to understand that unless they have to personally deal with it. Especially with Cross Contamination issues as that is really confusing and has been so often messed up in the main stream media and by people like
    Gwyneth Paltrow, Rachel Ray, etc. etc…

    So, while it’s tough, annoying, etc., we continue to educate and find that each year more and more people have someone they know or someone they love that has been diagnosed. We have made major changes happen in our school community due to our effort, so educating people one at a time is working and is improving our community for sure.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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