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71 Comments

  1. 1

    J

    I haven’t been eating as much either because everything is making paranoid because I’m not sure what’s causing me to itch on my arms. Plus like you something is making my stomach hurt too. I wanted to stop eating but I really don’t want to feel like hell.

    I know how frustrating it can be. Be careful dude! You may need to get an allergy test. Hope you feel better soon.

    Reply
    1. 1.1

      The Gluten Dude

      Thanks J. I’m done testing for now.

      Reply
  2. 2

    Sherri

    I hear you! Often I have wished that we could just ignore food for a day and that it would magically heal the system and we would wake up refreshed and ready to tackle it all again. I don’t think a lot of people understand how food effects our entire system and when it does not sit right well … life can be pretty miserable until we can get things somehow on track again.

    I had supper over at a family members on Monday and I am struggling since … like you said seems whatever I put into my system and stomach well hurts and I feel constantly uncomfortable. And it has effected my mood, my energy level, my motivation to even figure out what I did wrong ha ha … so I understand the picture LMAO …

    Hope things smooth out a bit soon …

    Reply
    1. 2.1

      The Gluten Dude

      Thanks Sherri. Indeed, it does not just affect the stomach.

      Reply
  3. 3

    Tracey

    Hi Dude
    I’m really sorry to hear you are feeling unwell.

    A lot of celiacs have problems with tomatos and corn.

    My celiacs can’t take soya, dairy or eggs. Corn is okay. Tomatos and root vegetables (including potatos, onions, garlic) cause problems (I think it might be a mould issue?). Tomatos are sometimes okay, sometimes not. Tomatos paste is definitely bad.

    Have you ever gone on a bland diet of things you know are okay for you for a week, then slowly added in new things every three days to see how you feel with them. Leaving three days in between to allow your gut to heal from any inflammation caused by the questionable items?

    Good luck.

    Reply
  4. 4

    Diana

    So sorry to hear. I guess you really pissed off the food gods. Next time at the first pain, dump the food and finish off the bottle of wine. Tomatoes and corn can both cause gastro problems. You may have to test them out. I just finished a book that I hope will “cure” my migraines through diet. I was amazed at what certain foods can trigger. It may not even have been that dinner, it might be that that food combined with other things you ate caused the problem. I hope you have better days.

    Reply
    1. 4.1

      The Gluten Dude

      Good advice ;)

      Reply
  5. 5

    Connie

    Oh, Gluten Dude, I’m really sorry about this…but your hissy fit made me giggle.

    It must be something in the air – I fell out of bed this morning for the first time since I was like, 6. Rather than do the smart thing and pick everything up I knocked over. Its staying right there because I’m made my nightstand was in my way LOL.

    I feel ya. Sometimes these things just sneak up on you, and a hissy fit is what feels better than anything else. So if I can fall out of bed, you can have a temper tantrum and feel like you’re in good company :-)

    Reply
    1. 5.1

      The Gluten Dude

      Good to know I have company Connie :)

      Reply
  6. 6

    Rose

    So sorry to hear that ur not feeling good:( Dude do you know anything about the scd diet? If so what do you think?

    Reply
    1. 6.1

      The Gluten Dude

      I’ve heard of it, but have not read in detail about it just yet.

      Reply
  7. 7

    Miss Dee Meanor

    I know you are tired of the merry-go-round of tests, but please keep bugging your doctor untl you get an answer. If I had done that, I may have found out I had gallbladder issues much earlier and saved myself over a year of suffering.Turned out it wasn’t a specific food that was getting me, but the fat content. Any little bit of fat. Like a touch of olive oil or an avocado would shoot out a gnawing pain that lasted for hours and sometimes didn’t go away at all.

    Hissy fits are perfectly acceptable in the deep south. I think we’ve written how-to books on the subject.:).

    Reply
    1. 7.1

      The Gluten Dude

      I’m done testing for now Miss Dee. I’m not saying it’s the right move, but after all my tests and all of the expenses that come along with it, I’m giving my body and my wallet a rest.

      Reply
  8. 8

    Krisandt

    I totally get how you’re feeling. Especially when you just want to enjoy some yummy gfree pasta :/

    Reply
  9. 9

    Mercedes

    Dude , this has happened to me several times in the last 6 months . I felt like I was eating glass ! I did the same as you and got really pissed off and stopped eating and then started eating very bland food . It helped but I’m nervous because it feels like I’m waiting for the next wave of pain to hit . I’m clueless on what to do ..

    Reply
    1. 9.1

      The Gluten Dude

      When did food get so friggin’ complicated??

      Reply
  10. 10

    Amanda

    Sorry for your tummy troubles. My first 6 months GF were an absolute nightmare of stomach pain (that I didn’t have prior to diagnosis) and I was a CC saint. I started an elimination diet and in the process have discovered that I’m intolerant to soy, lactose, egg, corn and now I suspect that I may have a fructose malabsorption issue. So rather than SCD (which I did read a lot about), I’ve been trying low FODMAP and seem to be getting results.

    As much as it does seem to be an ever complicating journey, hopefully it will be worth it if we all find better health!

    Reply
  11. 11

    Jody

    Man, sometimes I just get so tired of thinking about food. Not tired of eating, just tired of all of the thinking that goes on about what’s gf or not, all of the planning ahead required to get through even a short trip away from home, all of the guessing about what has caused my abdominal pain/ gas/ diarrhea or whatever other crappy symptom I have at the moment. A day off from eating and thinking about food sounds kinda nice.

    Reply
    1. 11.1

      The Gluten Dude

      Yep. I hate thinking about food. I hate talking about food. And I hate complaining about food. And yet I find myself doing all three way too often.

      Reply
  12. 12

    Michelle

    I’m so sorry! I can totally relate too! Sometimes it is so hard to figure out what foods are the ones bugging us. The only “lucky” thing to being diagnosed with IBS years before Celiac, is I was able to figure out some of the other foods that bug me, and still do even after cutting out the gluten. For me, unlike most celiacs it seems, I can’t handle oils, but do fine with dairy. I also can’t do fatty meats like bacon or sausage (well I don’t avoid them completely but have to limit myself to one slice of bacon or one sausage link per week.)
    I hope you can figure out what other foods are killing you! I’ve always wished our bodies came with some sort of button we could push and a little paper would print out showing what the problems were inside our bodies. Weird, yes, but man wouldn’t it be nice to figure out what was wrong so easily?!

    Reply
    1. 12.1

      The Gluten Dude

      Maybe there’s an app for that :)

      Reply
  13. 13

    Aloha Julie

    GD, I too am sorry you don’t feel well. I have days where I think I’m on the road to recovery and then I get slammed with gut pain and diarrhea.

    I’m with Diana, “next time at the first pain, dump the food and finish off the bottle of wine.”

    I looked up the SCD and FODMAP diet, never heard of them before. These two diets confuse me even more, i.e one allows brussel sprouts the other does not.

    I think Tracey and Diana may have the best suggestions.

    There are so many of us out here with the same complaints, it is frustrating.

    At times, I find myself opening up the fridge and just staring.

    Reply
  14. 14

    Rachel

    that really sucks. I’m once again reminded how lucky I am that I don’t have GI issues. I’m sure I’ve eaten some cross-contaminated things on my trip here in Quebec. I’ll need to return to Chicago later this month and get retested for my antibodies. I just hope they aren’t off the charts anymore. I’m a bit apprehensive about it as I’ve been feeling more tired lately. But hopefully it will be ok…

    Reply
  15. 15

    IrishHeart

    Poor Dude. I can relate.

    Lately, I am thinking I cannot do corn, tomatoes or GF oats. :( Since these are difficult to digest (even for non-celiacs) it could be I am just not healed enough in my gut.

    I hate the thought that ALCOHOL may not be a good thing….drat!

    I just got dairy, eggs and soy back. :) so I have no clue what the sam hill is going on sometimes.

    I have done elimination diets–even the Failsafe diet which required such a strict list I thought I’d just as soon open my veins in a bathtub than eat one more dang brussel sprout…but IT DID help knock down the high histamine in my body and a lot of pesky symptoms. So, I will say that was worth it to me, even though it was a very looooong month and I was a teensy bit grouchy during it.

    These symptoms had plagued me for 3 years and the allergist declared there was nothing wrong with me, as I sat there, my eyes swollen nearly shut, my nose dripping and my throat closed, scratchy and burning like hell fire. (Oh, okay, I must be wrong then.)
    I do not suffer these symptoms any more.

    I know there are proponents for all of these exclusionary diets and I know many people who have felt better doing them, but recently, I wrote my thoughts about the GAPS, SCD, PALEO et. al diets…in a hissy fit of my own.

    No one get mad at me, please….I am just kidding :) so G-dude will giggle.

    SCD… same crap daily
    GAPS…. Gawd awful plain stuff
    PALEO…. plain average lifeless eating, oy

    I want what G dude wants…for my stomach to stop misbehaving!!

    ( especially since all the extra GI testing my doc ordered post- DX says I am “fine” in there….) …I want the radiologist who wrote that report to live in my body for a week and tell me how “fine” this feels some days.

    I know how you feel, G dude— and for what it is worth, I am thinking if you gave up alcohol (! I know, I know), corn and toms for a few weeks, you may see a difference in the acid level in your gut and you can try them one at a time?

    Also, have you used digestive enzymes? Take one before a meal.

    Just some thoughts–feel free to ignore. :)
    Hope you feel better soon!

    Reply
    1. 15.1

      The Gluten Dude

      “No one get mad at me, please….I am just kidding so G-dude will giggle.”

      Mission accomplished Irish :)

      My only two vices left, not including my daily heroin shots. are coffee and alcohol. But deep inside I know I must try giving them up for 30 days. It never seems to be the “right time” to start though.

      And I keep forgetting about the enzymes. Making a big note on my desk as we speak.

      Reply
    2. 15.2

      Ellen

      I am so down on allergists! I had the same experience of being told by an allergist (actually, two different ones) that nothing was wrong and that I couldn’t have food allergies as I sat there with my throat swollen and covered with eczema. It turned out I had multiple food allergies and celiac. I’m very intrigued by all the people here reporting their problems with tomatoes. It turned out that nightshades were one of my big problems too (bell peppers, especially, as bad as the tomatoes). Citrus, dairy, corn and soy too. Celiacs have problems from years of constant GI inflammation. It makes sense that food allergies and/or intolerances to other things in addition are a high possibility.

      That said, perhaps the person suggesting gall bladder might be on to something? Maybe not…but Dude if you’re having that much pain all the time…?

      Reply
  16. 16

    Kate

    Oh hai, your doctor didn’t tell you what this is? It’s a candida overgrowth- it happens to almost every single Celiac. Frankly, the only reason *I* know about it is because I have a certificate in Holistic Health. The only cure for it- aside from a candida diet which is just a joke- is a dose of yeast treatment called Diflucian. You can then manage it from there with grapefruit seed or other citrus seed extract :) Don’t bother getting tested for it- the only way to diagnose it is if you by lucky chance break out in tinia versicolor or you have a groovy dr who is willing to alcohol test you after a night of drinking (blood alcohol levels will go UP). It’s VERY painful, as you’ve experienced, and can even cause such bad reflux that your dr will prescribe you prescription acid medication- but don’t take them! They will make it far worse!

    Reply
    1. 16.1

      The Gluten Dude

      I just ordered some Betaine HCL (a digestive enzyme) at Amazon. Are you familiar with this product at all Kate?

      Reply
      1. 16.1.1

        IrishHeart

        Dude,
        Betaine HCL is used by people with LOW stomach acid— which some very few celiacs have, however, if you have excessive stomach acid (which I suspect you have, given the foods & beverages you react to?) then taking this supplement will cause burning!!….if you burn after taking it, drink a lot of water and it will stop.

        Hon, digestive enzymes WITHOUT Betaine HCL is your safest bet.

        Try Enzymedica Digest Gold. (I promise, I have no affiliation with them. :) A celiac who took me under her wing when I was first DXed recommended them to me)

        My best, IH

        Reply
    2. 16.2

      rose

      hey kate, can you tell me anything about going from constapation to ibs w/hemmorids? its either or for me and my doctors say theres nothing they can do, im also on a gluten free diet !

      Reply
      1. 16.2.1

        IrishHeart

        Kate is very kind and will hopefully, come back & give you her answer and I will suggest something as well, if that is okay?

        Take dairy free probiotics.

        My “alternating bowels”–for 12 years–also called “IBS” by my former GI doc–was caused by a serious gut flora imbalance and when I was tested after my CD DX, the tests said I had no detectable good gut bacteria–i.e. the “good guys” in my gut.

        Supplementing with probiotics has resolved all of those issues. No IBS, no hemorrhoids, no burning, no spasms in the colon, no running for the LOO, no wondering if I will make it home in time and no wondering if I will ever go again in this lifetime.

        Here is why a celiac gut needs them:

        http://thefooddoc.com/probiotic_facts

        Just a suggestion.
        I hope you get relief soon!

        Reply
  17. 17

    Ellen

    It sucks. I ate something other than what was on my usual monotonous safe list the other day. It was “gluten and dairy free” and didn’t have anything in it that should have been a problem. I knew before I was half finished as I was doubling over with stomach pain and the throat swelling began that I had a problem. Infuriating! It’s enough to make you insane. Eating is often more of a chore than a pleasure these days, for sure. Good luck Dude. (Btw–I’ve posted here before as EJ–just so you know I’m the same person. I decided to switch to my WordPress ID.)

    Reply
  18. 18

    Kate

    LOL wow I just got popular! I’ll try to go about this piece-meal.
    I’m familiar with the enzyme, but like someone else said, I doubt it’s your problem. If you’re into enzymes and probiotic therapy, you’ll have best of luck taking Jason 3.4billion complex (I think I took 3 a day?), and/or raw yogurt (if you can tolerate it- throw in some chopped berries and agave). However, I really truly feel like no one should eat animal products, but that’s a different lecture for a different day! (you can research that opinion on the Physicians Committee for Responsible Medicine at PCRM.com)
    As far as IBS and then constipation with hemorrhoids, it does not sound like you are completely gluten free, and my best bet is cross-contamination. Lest we forget that animals eat gluten, which means that you are running risks every time you eat animals or their products- especially beef and dairy. This is a pretty controversial opinion, but I’d also suggest trying to rid corn from the diet, which is an inflammatory grain. Are you seeing an allergist? Allergies are incredibly prevalent in people with autoimmune diseases, and that could be a possible causation as well.
    Irish Heart is right- balancing your gut flora will make all the difference. You have approximately 3lbs of gut flora that lives in your intestine that makes up for your immune system :)
    You guys are most kind and I’m incredibly flattered that you care so much as to ask me my opinion <3

    Reply
  19. 19

    Sassy Celiactivist

    It’s okay, Gluten Dude, I know you were just trying to be more trendy…all the paleos are doing it ;) Turns out you were just trying to aid weight loss, fight cancer, improve workout recovery, enhance brain function…No? You didn’t feel any of that? Hmmm… ;)
    http://www.marksdailyapple.com/search-results/?cx=004987908667488763946%3Akd-fp2c7jek&cof=FORID%3A11&ie=UTF-8&q=fasting&siteurl=www.marksdailyapple.com%2F&ref=&ss=927j155827j7

    *for those who don’t get sarcasm, I’m merely teasing”

    Reply
    1. 19.1

      IrishHeart

      Sassy, I so get you! :) How you doing girl?? Miss ya!

      Reply
      1. 19.1.1

        Sassy Celiactivist

        I told one of my friends today that I’m borderline okay ;) I think that sums it up LOL

        Reply
        1. 19.1.1.1

          IrishHeart

          “borderline okay” sounds good to me, sweetie! :)
          glad to hear you are on the upswing.
          Email me when you have time–I want to hear how the PT worked out.
          .

          Reply
          1. 19.1.1.1.1

            Sassy Celiactivist

            I’ve actually just run out of ways to say nothing has changed LOL Pain, fog, and fatigue are on overload today. I’ll ask doc tomorrow if PT is covered…among other inquiries I have for him…

            Reply
  20. 20

    Aloha Julie

    I don’t know, I read everyones suggestions, and I have decided to have another drink. I know IH, ….but it is the only thing I can actually say that does not hurt my gut.

    I do not drink during the day, I try to be as active as possible on a good day, coffee can “f” me up, sorry if anyone reading this is offended. so stopped that, (coffee and trying to offend people), now, drinking hot water with lemon and honey in the morning.

    stopped the dairy, good lord if I can’t have bean sprouts with ginger and onions with tamari sauce just shoot me. no brussel sprouts, broccoli? don’t care about legumes, fruit can screw me up!

    where is the frackin’ Mai Tai, I want it now! along with a shot of rum.

    GD, every day is going to be a challenge for the rest of your life. my life, IH life, everyone on here that is having problems. it is just the way it is and it f**ing sucks.

    My husband loves to watch the food network channel, esp. Diner Drive-In and Dives. I have to go out on the lanai, and listen to music on my laptop, with ear phones. I can never eat any of that food…

    I want to open the fridge again, and just get out what I want to eat. I don’t want to have to think about it, which is everyone’s sentiment. As long as we have celiac its not going to happen. I don’t want something I ate for a month, all of a sudden screw me up. then I switch to whaat?

    Bushmills, triple distilled.

    GD, I know I got a little pissy on here a few times, sorry about that, but I was not feeling well, and some statements, well, pissed me off.

    I will be more “soft” with my responses in the future.

    Alloha.

    Reply
    1. 20.1

      Laura West Kong

      Julie,
      Sorry to hear about your issues with Food Network and Triple D. When I was at my absolute sickest, could barely move from pain and fatigue, I would lay on the couch for hours, all day if I could watching Food Network. It didn’t matter that I couldn’t eat any of that food even if I had the energy to get up and go to the kitchen to cook it. It was enough to simply watch other people cook and eat food. Food Network was my obsession and therapy all rolled into one. Weird, huh?

      Reply
  21. 21

    Aloha Julie

    alloha, means double distilled!

    Reply
  22. 22

    IrishHeart

    IMHO –prolonged fasting, for anyone, especially those with blood glucose problems (which many celiacs have) is not really all that wise.

    Others will disagree with me. So be it.
    But the human body is a machine that requires fuel.
    When the body needs fuel, it signals “I’m hungry, feed me”.

    When it is dehyrdated, it tells you that, too.
    Drink a lot of water, guys–you are probably dehydrated and do not even know it, especially if you suffer any “IBS” problems.
    Going to get down and dirty here and tell it like it is–constipation is sluggish bowels and stuck, hard feces. You need water to bind and flush it out.
    .
    If it does not resolve in a few weeks with increased fluids,probiotics, healthy essential fatty acids and fiber–like ground flax seed?–have your thyroid checked. Hypothyroidism causes major C and is often associated with CD.

    The only thing fasting ever did for me (and by “fasting”, I mean a 2- year forced pseudo-anorexia from undiagnosed celiac and malabsorption) was make my weight plummet, cause cognitive issues and started to create atrophy in my muscles and a breakdown of tissues, ligaments and tendons.

    The last thing any recovering celiac should do is fast.

    I am “In-my-humble-opinioning” myself out the ying-yang here, so I do not come across as a “know-it-all” :)—-but I am thinking any nutritionist or medical doctor worth her salt would tell us the same thing. Just read a few articles on how the intestines work and you’ll see you’ve got an average of 22 feet down there trying to do a good job and if the cell wall lining is severely damaged— as in celiac—well, it can’t. The older we are, the longer it takes to resolve.

    As for the idea that gluten-eating animals can somehow gluten us through the meat we consume?

    Absolutely no scientific evidence–NONE— to suggest this is even remotely possible.

    If someone chooses not to eat meat for whatever reason, God bless–but vegans/vegetarians can also become deficient in B-12 and folate, something celiacs are already deficient in due to malabsorption–and so, again, IMHO, EAT MEAT, poultry and salmon (for the omega 3s).
    After you recover and want to go vegan, go for it.

    Coffee, juices, alcohol–these things are tough on the gut–anyone’s gut–so it makes sense that we have problems with them while still healing.

    I do not think it will always be this way for us, and the mouth to rectum intense burning I suffered for so long has diminished greatly so I CAN enjoy orange juice and coffee once again, (yaaay!) and I believe healing of the GI tract is possible.

    I do know several celiacs personally who have 5-12 years under their belts and they do not suffer serious gut issues anymore. This is what I wish for. I figure, I have had so many horrible health issues and various food intolerances and allergies “miraculously” reverse themselves in the past 18 months, so why not hope for them all? You guys cannot imagine how bad I was, and why this lazarus-like thing I am experiencing is so amazing. I know it will take me another year for my muscles to recover. It is what it is.

    then again, I am a ridiculous optimist (although some may call me other things :) )

    Reply
    1. 22.1

      Kate

      Well every is entitled to their opinion of course.

      My apologies that you’re not familiar with the latest research regarding the digestive processes of animals fed glutenous grains or how the body absorbs b12. Pub Med is an excellent source to research those studies.

      I also know long-time gluten free Celiacs who still suffer a myriad of digestive and absorption issues related to prolonged diagnostic procedures.

      Reply
      1. 22.1.1

        IrishHeart

        Kate, I would be so very grateful if you would please point me to the PubMed article links that discuss how gluten grains fed to animals somehow, in turn, gluten humans and cause celiacs to remain ill.

        If this were the case, why aren’t the celiac research centers telling celiacs to stop eating meat?

        I have asked a neurobiologist, who has searched her data base extensively, to find information on this and she can’t seem to find any either.

        A well-respected nutritionist who has researched this issue says:

        “Grain-fed beef is fine. Before protein is absorbed, it’s broken down into single amino acids or very short peptide fragments-no longer gluten.” — Tricia Thompson MSRD

        Also, I am not sure what you meant by this statement —so I’m sorry, but would you explain —–how do celiacs suffer a myriad of symptoms from “prolonged diagnostic procedures”…what procedures will cause absorption and digestive issues?

        Thank you for clarifying this for me.

        I learn something new every day and I am always open to hearing others’ thoughts.

        Reply
  23. 23

    Laura West Kong

    I hear ya. Was it rice pasta? Rice used to make me sick big time like that. Like you, I was determined to grit my teeth and finish the food on my plate. Eventually it got so bad that 2 bites of rice would cause immediate and severe nausea. (I can be a little slow on the uptake when my digestion’s off.) Similar things happened with all the gf grains I ate. This is not professional medical advice, but you might want to lay off the grains and starches till your system heals.

    I’ve recently reintroduced a little bit of rice into my diet to see what would happen. Glad to report that it no longer causes instantaneous cramps and nausea, but I now get a milder delayed reaction. Curiosity satisfied, I’m now returning to my safe grain-free existence. Your results will vary. Best of luck to you!

    Reply
  24. 24

    Kate

    I’ll search for the studies on pubmed, they’re new, as in the last year, so it’s very likely that many doctors are not aware of them, in addition to the fact that most doctors have less than 6mos training in nutrition.
    As far as nutritionists go, the most respected nutritionist in the state of Maine worked with me on her certification, and she’s the one who told me that cross-contamination was “more in our minds than an issue with our gut”. So I suppose I lack respect for many nutritionists if she is a reflection of their training, and it’s good that you have great trust for yours, but I question the fact that phd’s often don’t get the retraining they need. Any idea if those folks have certain retraining certifications? I, for example, have to satisfy so many credits each year to keep my licenses.
    In short, the greatest exposure to gluten that we have is in dairy. MANY people contest that gluten carries over in breastmilk, but not in cows milk. This is absurd thinking. I want to see who is funding those studies. But before even looking into studies, one can examine the difference between grass fed and grain fed meat with the naked eye, right? And yet THOSE studies refute the difference in meat “quality”. This is why I respect the folks at Harvard and other trustworthy labs who are reporting contradictory results. I’ll be happy to go find them for you :) I’m a little shocked that Celiac.com hasn’t reported them yet…but then again, they’re reporting that STRAWberries are gluten free *scoff*
    As far as prolonged diagnosis, what I mean is that the average Celiac goes approximately 11yrs without being diagnosed properly. The mucosal lining of the intestine and the tissue itself sustain such profuse damage that it does NOT repair itself, and absorption is permanently detrimented- so much so that most GI’s report detection of the disease even in the most stringent of diets. Long term effects of inflammation are numerous as well- gut flora populations can take years or more to rebalance. This is why I recommended a corn-free diet. And furthermore, this is in conjunction with the long-term damage created by profuse and long-term vitamin deficiencies.
    As far as B12, it would make no difference if a Celiac were a vegan or not- people who are B12 deficient are not so due to diet, unfortunately. They are so because of the inability to absorb it. B12 is a vitamin that was traditionally found in soil, but due to overfarming, most b12 is not absorbed in high concentrations by plant life any longer. The only reason that meat is said to be rich in b12 is because the MEAT eats plants…which eats it from the soil. The best way to enhance b12 intake is to eat organic food of whichever preference and find ways to enhance how you absorb it- which means creating the least inflammation as possible.
    The vegan argument is a fascinating one. I have a super holy roller soap box for it, but I think that if one wants to learn more about it, and how it cures (or at the very least reduces) autoimmune diseases, one could watch Beautiful Truth or Forks Over Knives.
    Btw, I forgot to mention that I totally agree with you on proper hydration. Sorry so long winded!

    Reply
    1. 24.1

      Miss Dee Meanor

      Kate, it’s funny that you mention strawberries. I had a severe hive reaction a few weeks ago after drinking a strawberry-banana-spinach smoothie (no dairy). Hives are my first response to being glutened. The spinach and the strawberries were organic. Later I tested the bananas and spinach from the same batch to see which of these were a culprit and had no issues. That left the strawberries to blame. I threw the rest of the strawberries out and haven’t had the nerve to try them again.

      The reaction to the strawberries was a surprise. I’m allergic to kiwi so I wouldn’t have been shocked if it had been bananas, but strawberries was unexpected. Could you explain the strawberr-gluten connection?

      Thanks!

      Reply
      1. 24.1.1

        Kate

        Yes- strawberries are grown in straw. Straw is part of the wheat plant. Therefore, strawberries are exposed to gluten during the growing process.
        However, this is not true for ALL strawberries. We grow our own here (Maine is an easy place to grow strawberries). And some strawberries are grown in rice straw (which is more true of strawberries grown in places where there are many rice farms, such as China or even parts of California).
        Washing your strawberries is not entirely effective because the gluten protein is only removed by surfactant (soap).

        Reply
    2. 24.2

      IrishHeart

      I do not wish to argue with you, Kate.

      We are going to have to just respectfully agree to disagree.

      Yes, please post those Pub Med articles so we can see them.

      Tricia Thompson is not MY nutritionist, personally. (I did not say she was) I said she is a well-respected one–she publishes often and has written many articles on celiac. Her credentials are solid.

      http://glutenfreedietitian.com/

      As far as I know, dairy milk is gluten free, but it does contain lactose, which is often a secondary intolerance in celiac because the tips of the villi are where lactase, the enzyme that digests lactose is produced. Some celiacs can resume dairy products when the villi heal, and some, sadly can never get it back. Some studies have been published that show dairy can produce symptoms that “mimic” a gluten reaction in people. But again, this does not mean there is gluten in cow’s milk.

      Some people–even on c.com, a site I am not affiliated with in any way, so I am not sure why you even mention it– suggest fruits can somehow be cross contaminated by strawberries that are grown where beds of straw are used to keep the weeds down around the plants. Actually, most farmers use plastic to keep the weeds down.
      A good wash in hot water will get rid of anything that rubs up against fruit. One woman on c.com claims she has to scrub her berries with soap, water and a brush before deeming them safe….really? soap and a brush? what would be left of the berry?? (this seems unrealistic, doesn’t it?)

      Alarmist theories about fruits and veggies are unfounded. Otherwise, no one would get well.

      The major celiac research centers would be sure to inform the celiac community, GIG, the celiac sprue org, etc. if vegetables, fruits, meats and dairy were in any way a health hazard to celiacs.

      There are those who also suggest that if an animal eats gluten grains, poops it out and the poop is used as fertilizer, then somehow magically, the gluten is transported up the plant and into it. if we eat that plant, then we get “glutened”. What??

      My husband, a chemist and scientist for over 30 years says he just does not see how this is plausible.

      And finally, the “almost every celiac has candida” statement is not really true (is there a Pub Med article on that?) and the chances of someone having a system-wide yeast overgrowth of the body(called SIBO) is unusual. It is detectable by a small bowel follow through (a harmless exam) and if a person’s intestines were overwhelmed by a dangerous yeast infection, they would be very ill and hooked up to machines in a hospital. Unless you have visible yeast on your tongue or genitalia, it is highly unlikely you have a yeast infection —and dosing with Diflucan would cause more harm than good. (been there, done that–based on the advice of a Naturopath and again, on the advice of a “functional med doctor–a man who also left me unDxed for an additional 10 months, so any faith I have in people in the medical community–alternative or mainstream–is shaken to the core) That “treatment” gave me more problems than I already had.

      There are many myths that abound about “hidden gluten”— and fruits, veggies, meat and dairy milk–are not sources of hidden gluten contamination.

      I could say more about B-12, but a good search in Pub Med will explain why celiacs are B-12, folate and iron deficient. It is a result of malabsorption

      If someone chooses the vegan route, that’s their business, but there is nothing wrong with eating meat.

      Just my humble opinion. (feel free to disregard, everyone!) :)

      A good book on digestion, vitamin deficiencies and how gluten impacts a celiac’s body is Recognizing Celiac Disease by Cleo Libonati.

      Reply
      1. 24.2.1

        diana

        I completely agree with you IH. I have been gluten free for 15 years. I eat meat, fruit, including strawberries. The only time i have a flare up is if I’ ve been glutened. About 5 years ago I started having a lot of GI problems. The gastro Dr. Did a colonoscopy and endoscopy. Turns out it was an inflamation, not from the Celiac. He said it sometimes happens to people with Celiac, maybe because of the constant GI issues, but it also happens to people without Celiac. Sorry I don’t know the exact medical term. However, he also told be that the endiscopy showed I was stcking with the gluten free diet as he said it looked completely “normal”.

        Reply
  25. 25

    Kate

    lol I’m sorry, maybe this is succinct but gluteny poop into a plant?!

    I agree, that’s ridiculous.

    Oh and I’ve not seen the plastic you speak of- I actually worked in the strawberry fields here for many years, maybe it’s different in Maine.

    Reply
  26. 26

    The Gluten Dude

    Loving the back and forth on this one folks. Great passion.

    Reply
  27. 27

    Diana

    Ah, GD, your hissy fit is our hissy fit. LOLLLLLLLLLLLLLLLLL

    Reply
  28. 28

    IrishHeart

    I look forward to reading the Pub Med articles Kate mentions that discuss: “the latest research regarding the digestive processes of animals fed glutenous grains ”

    I am always reading research on celiac.

    I feel you cannot defeat the enemy— or live in harmony with one–unless you know how it ticks.

    :)

    Reply
  29. 29

    Sassy Celiactivist

    Well now I’M going to have a freaking hissy fit and stop eating! No fruit, veg, meat, dairy, grains, legumes…sorry, WHAT is left to eat?! This link is my attempt to potentially lighten the mood a little, though it is dark humor. I realize it’s different, because we’re not trying to be the healthiest eater alive, we’re just trying to eat and remain alive…but still, this is what’s on my mind today: http://www.nwedible.com/2012/08/tragedy-healthy-eater.html

    Reply
    1. 29.1

      The Gluten Dude

      Sassy…for what it’s worth, I just finished watching Forks Over Knives. Pretty darn fascinating. So many studies are showing that the western diet is culpable for many of our health woes. And that some diseases can even be reversed. Are you familiar with it?

      Reply
      1. 29.1.1

        Sassy Celiactivist

        Is it on Netflix? LOL No, but I’ll find it and watch it. I don’t disagree about the impact food has on health…it’s something that’s always fascinated me. Eating healthy should be simple. Eat real foods. I’ve always been an advocate of a nutritious diet. But it just seems like that’s not even good enough, now. So who’s right? What’s the right way? Is there a right way, or do we all need to find what works for us? Obviously I’m doing something wrong if I’m still so sick, right?

        I was just saying today that people now talk about food like they talk about religion. Everyone thinks their way is right.

        I don’t even know what my point is, other than….ya, no, train of thought gone. Going back to lie down. Not a good day. And, no…I don’t feel like eating LOL

        Reply
      2. 29.1.2

        Miss Dee Meanor

        “Forks Over Knives”, “Food Inc.”, and “Fat, Sick, and Nearly Dead” are all worthy of giving your time to watch no matter what your diet just to get an idea of how our food supply has altered. I’m not a strict vegan, but am mostly plant-based and feel much better when I eat that way. About the only “meat” foods I eat areassorted wild caught fish and sometimes eggs from a neighbors chickens.

        I accidently found that that the vegan diet agrees with me when three years ago I adopted the diet for Lent. I noticed that by Easter I had loads more energy, my skin had never looked better, and my “IBS” symptoms were gone. I went back to eating my “normal” gluten-free diet on that Easter and slowly progressed back to being energyless and plagued with the same IBS symptoms as before.. (That was before I saw the documentaries mentioned above so I had no expectations of feeling better when I ate only plant-based) About a year ago we watched these three documentaries and I went back on a plant-based diet to see what happened. I felt much better. I HATED that I felt so much better. The mister and I built our meals around what we were going to throw on the grill.

        In my heart I think the sudden rise of Celiac, non-celiac gluten sensitivity, and allergies can be linked to the altering of our foods and the introduction of mostly packaged convenience foods loaded with chemicals, sugars (especially high-fructose corn syrup), and preservatives. Add to that our fast-food diets and you have a recipe for disaster. I think our bodies simply have not evolved to have such a sudden change in diet and it switches on an immune response.

        That is my opinion and I can’t back it up with a study..LOL. I also apologize for hopping on a soapbox. But I can no longer ignore what my body tells me. Now that I read labels you will usually find me shopping for my food at the local farmer’s market and health food store. If possible, I try to eat nothing that has ingredients that I can’t pronounce or that my grandmother would not recognize as food.

        Also an eye-opener at what has happened to our food industry in the United States is the book by Robyn O’Brien, “The Unhealthy Truth”. Check out her TedX video on the following link and you can get the gist of her platform.

        http://www.robynobrien.com/

        Reply
        1. 29.1.2.1

          IrishHeart

          I agree with you entirely. Everyone should eat what makes them feel best.

          I am of the same mind as you regarding what’s IN foods and I stated this on one of Dude’s earlier blogs entries: I stick to foods that have one or two ingredients, no MSG or dyes, etc. and never anything with ingredients I cannot pronounce. :)

          My friend with MS is a vegan and she feels fantastic, but she uses soy for her main protein and I am unable to eat soy products.

          I feel best eating protein from meat and low carb intake. This keeps my blood sugars stable and has helped with reversing the muscle atrophy I was developing.

          Everyone has to choose their own healing diet.
          There is no “one size fits all” with celiac, it seems.

          Reply
    2. 29.2

      Aloha Julie

      Sassy, that is an absolute hoot, thanks for sharing. I got home a little bit ago stopped at the store and they had fresh kale, don’t get that much in Hawaii, and to read the blog you referred us too, just had me laughing up a storm. I don’t think the kale is organic! I can’t believe the timing. I’ve never even eaten kale, but of course I read recently that it is really good for you.

      still laughing, thanks I needed that. now what do I do with the Kale? oh yeah, I’ll fry it in soybean oil…

      Reply
      1. 29.2.1

        Miss Dee Meanor

        Julie, I hated kale until I tasted a raw kale salad at a restaurant and could have eaten the entire bowl! The secret is removing that center stem, cutting it into very small pieces (I felt so CHEFY when I did my first chiffonade:) and then massaging the crap out of it with oil, an acidic juice (my favorite is freshly sqeezed lemon or lime) and a bit of sea salt until it becomes soft and wilted. Massage it like you mean it. Seriously, your forearm and hands will get a workout. It’s a great stress reliever. I gave mine the name of a woman who had been on my last nerve and squeezed the crap out of her..LOL

        I always add an avocao and massage that in, too. Sometimes I add cayenne pepper for a kick. Be careful with how much oil you use because it will wilt down to at least 1/2 as much kale as you start with. The first time I made it I got it too greasy. Actually I’ve found that the olive oil is hardly needed if using avocado because there is enough fat in that to wilt the kale.

        Here is a youtube video showing the closest technique to how I fix it. Whatever else you add is up to your taste. I’ve used finely chopped carrots, peppers, celery, radishes, and/or bell peppers. I don’t tolerate raw onions very well, but if they don’t bother you that is an option, too. Have fun with it! I have used both the lacinato kale and the curly kale. Some people like to add a touch of soy sauce (gluten-free for us), but I found the taste a bit overwhelming for me.

        http://www.youtube.com/watch?v=ykedcGpo1Jk&feature=related

        Kale chips are awesome, too! I fix those and can hardly get any because the mister eats them all..and he generally avoids anything green or healthy.. Another note is that kale is usually a cool weather vegetable. If you are getting kale grown in Hawaii it may be a bit more bitter than what you can get here in the late fall through early spring.

        http://www.youtube.com/watch?v=ykedcGpo1Jk&feature=related

        Reply
    3. 29.3

      IrishHeart

      That was GREAT! thanks for that one, Sassy!!.

      I hope your doc can get you into PT for the pain.
      I can honestly report it has helped me immensely–and although it is very slow progress –it is progress nonetheless and better than the horror I was living.

      I have my fingers crossed for you, hon.

      Reply
  30. 30

    Kate

    Without sounding like a jerk, I’m wondering why my minimal time on the internet must be spent finding things you can find yourself, Irish.

    Reply
    1. 30.1

      IrishHeart

      Kate,

      Why the attitude? You mentioned there were recent studies on Pub Med and I was just hoping you would graciously point me–and the Dude’s other readers– to them.

      As I have said, I am very interested in leaning more about it, as I like to know all I can about celiac.

      It would have taken just a moment of your time, but instead, you chose to be antagonistic.

      You have thus far used the word “scoff” in your responses to me and now this rather dismissive and unkind answer?

      Please note that even though I respectfully disagree with some of the theories you hold, I did not make it personal and I was civil in my tone.

      I wish you all the best..

      Reply
  31. 31

    Kate

    Why the attitude? I’m sorry, but I have to disagree. I’ve been nothing but respectful.
    I haven’t had the time to go doing your research for you- I merely mentioned that I was sorry that you were unfamiliar with the latest studies, which prompted you to all but tell me to prove it. I just haven’t the time. I’m a busy mother of two children and I run my own blog.
    I’m also sorry that you have read into my responses as “scoffing”- I perceive myself to have been nothing but agreeable, complimentary, and helpful.
    Now that this topic has gone from research and actually helping one another to social interpretations, I’m going to respectfully bow out.
    Masalama

    Reply
  32. 32

    GF and more

    I’m so sorry! Definitely know the feeling, unfortunately. Sometimes it’s all one can do to put spoon/fork to mouth. Then there is that “maybe” game: maybe it was the broccoli? Or maybe that salsa? Or perhaps the eggplant… and then all of the food one touched over the past days is instantly suspect and banned as “bad news.” Hope you are doing better by now, and starting to come around.

    Reply
  33. 33

    IrishHeart

    For what it is worth, here is an article debunking the idea that people suffer stomach issues & fatigue from “intestinal systemic yeast” and should be dosed with antifungals to rid themselves of it.

    http://www.drweil.com/drw/u/QAA125503/Concerned-About-Candidiasis.html

    Still trying to find a reputable article that offers proof that gluten -eating animals cross-contaminate people who consume their meat.

    When I find them, I will gladly post them.

    Reply
  34. 34

    Paula Harding

    I can so relate to this. My story is probably like most of yours- years of illness tht was gettign worse and wors- no clue what was happening- then find I have CD- had and aha moment because suddenly all my health issues made sense-YAY- go gluten free- feel great for a little while- then continue to stuggle and feel like crap.. add in this supplement and that vitamin- after a lot of tria and error I fins the ones that help some.. more and more foods start making you feel awful to the point you begin to wonder if you will be able to eat anything if things keep progressing the way they have been..- My diet has progressed or rather decreased in what I can eat and still feel human – I went GF, then grain free, then dairy free- then soy free, then I went Paleo-ish but holding onto legumes, peanuts and potatoes with a death grip.. but slowly one by one those too left my list because of the stomach pain and diarrhea they caused. Paleo did wonders for me- for a while- I lost weight ,felt good- though I never gave up sugar in my coffee- a girl’s gotta have one vice right – 2 cups a day couldn’t make that big of difference.. but just in case I switched to raw sugar cause ya know it’s healthier ;). and it did make a little difference in how I felt over all. Then after 6 months on Paleo suddenly everything I ate started making my stomach hurt – especially raw veggies, though all veggies seemed to cause me pain even when cooked, nuts, eggs, and my beloved coffee- I was left with tiny bits of protein and a little fruit.. at this point I am desperate to feel good again- heck just half way decent and not be in pain all the time would be a welcomed change. I stopped eating half the time- I mean you know what it is point right? I did a lot of research and prayed a lot! I came across a blog talking about GAPS- I was willing try anything- I have been doing it as best I can for the last 9 months and I feel 100% better. It’s a tough program and I have not been 100% to date but the closer I stick to GAPS the better I feel and I have been able to add back in a lot foods- eggs, veggies cooked and raw except most night shades , some nuts. When I stray to far from GAPS I start feeling horrible again and everything I eat starts hurting me..that is motivation enough to stay on it-I know it seems like horrible program food wise but it really isn’t when you get the hang of it- I have found it to be just the opposite- delicious foods that make me feel good- when I started Gaps I could have cared less about how the food tasted..it could have tasted like dirt at that point- I just wanted to be well. To my suprise the food is pretty good. However I never been able to do intro for more than a few days at a time- the detox and die off was horrible and had me feeling worse- so I’ve gone to full gaps and still struggling to incorporate ferments and juicing into everyday life but I am working on it.I feel like GAPS has started the healing process for me and giving me more good days than bad. I won’t do Gaps forever- it is meant to be temporary- anywhere fro 6 months to several years- I am good with that- I am starting to feel well so I’ll stick with it. so anway that is my two cents :)

    Reply
  35. 35

    Paula Harding

    typos- sorry.

    Reply
  36. 36

    CR

    I have been having the similar issue of “something” making my “gluten spot” ache in my back and giving me upset stomach for days which I suspect is a hangover effect of being exposed in January. However, I finally felt better Friday night and I swear it must have been those magical GF/DF macaroons I tried! Just kidding but it does get old feeling like you never know when your digestive system is going to take issue with something. Most recently I’ve been told no black tea, honey, chicory, or cucumber. Really!? Gah! Ah well. I’ll take a dietary challenge over drugs and feeling like hell.

    I am gluten-free and dairy-free and seem to feel the best when on a mostly vegetarian diet (completely avoiding red meat). I felt great when eating mostly raw and juicing a lot. The juicing especially gave me a huge energy boost. I’m getting back to that today!

    I hope you feel better, Gluten Dude.

    Reply
  37. 37

    Cindy

    I had similar things happening to me although I didn’t fast. First thing I figured out (on my own) was that rice affected me the same way as gluten. So gave that up and it “cured” the pain. But as time went on I started feeling bad in the stomach although nothing like when I am accidentally glutened. I had gone to a Gluten/Allergy Fair last April and listened to a speaker who talked about how she also felt awful even though she was gluten free. It sounded like she had gone with me to my doctor as I was feeling so awful! Hubby even looked at me and asked if she had talked to my doctor. She said she went totally grain free and felt so much better. She was under a doctor’s care when she did this and her doctor was a specialist in celiac & other gastric diseases. Her talk made sense to me so I gave up soy, oats, and corn. Wow, what a difference. I am slowly feeling better. Now mind you, I am not paleo or doing any of those other grain free diets. I am just trying to eat foods in their natural forms. And I’m trying to eat organic and pastured as much as I can afford. I can give you her name and webpage if interested to see what she does. And sorry to go on and on. It’s been a long 3 year struggle to feel better. I hope you feel better soon.

    Reply

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