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30 Comments

  1. 1

    Gail

    Thanks GD for posting this. I’m sure it describes a lot of people. I know I can relate for sure, although I have not had a diagnosis of CD because, you know, the doctors don’t think it’s possible. I went gluten free voluntarily (initially to clear up a rash that was never properly diagnosed and for which the docs only would prescribe steroids) and because of what I have learnt in the last few years. Last year I had a food intolerance test done which showed a severe intolerance to whey (so now I’m dairy free too) but gluten/wheat didn’t show as a problem because I had not been ingesting it for a long time. I was feeling the same way – that perhaps I was doing a disservice to the celiac community because I didn’t have to be really strict but now I have been educated (mostly by your website and all the commenters) and I think I can be a good advocate. I have also just read Jennifer Esposito’s book which was very enlightening.

    Thanks for all your hard work, and your merry band of followers, for all of us, whether or not we have an actual medical diagnosis. We can all keep learning from each other.

    Reply
  2. 2

    Sharon

    I too have no symptoms when I accidentally consume gluten even though I have biopsy confirmed celiac disease. I have never purposely consumed gluten, though. After reading the stats on untreated celiac, I went gluten free and never looked back. It is a blessing and a curse I think to not get “sick” when you get glutened. It’s nice not to have a vacation ruined from cross contamination at a restaurant but it’s also impossible to tell if I can eat safely at a restaurant since I can’t tell if I was glutened or not. Everyone says they have their “go-to” restaurants where they know they can eat safely…I have no idea. But it’s important to remember that the damage is still being done whether you feel it or not.

    Reply
    1. 2.1

      Matt

      Same here. I was positively diagnosed, thought I have symptoms. It is nearly impossible to tell if I’ve accidentally consumed gluten. It’s trying to drive a car exactly at the speed limit with no speedometer.

      Reply
      1. 2.1.1

        Matt

        I meant NO symptoms*

        Reply
  3. 3

    nicole

    This pretty much describes me. I was having my esophagus stretched when they found it. I’ve never had symptoms. Ever. So it makes it impossible to know if I have been glutened.

    Reply
  4. 4

    Comrade Svilova

    GD is right that the writer should focus on their own health but as far as being an advocate for others goes, I think one of the important things we can all do is make sure people know that no one person represents all celiacs and people with NCGI. We all make our own decisions about the risks we feel confortable taking, and no one person’s decisions should be used to judge someone else.

    Reply
  5. 5

    Lisa Mims

    I have two words for anyone who is not a symptomatic celiac: “microscopic colitis.” It’s basically an inflammation of the gut that won’t show up on a scope, unless you also get a biopsy. If you don’t stay gluten-free, you may get it, and it can take years for symptoms to resolve. Basically, it causes chronic diarrhea.

    Microscopic colitis is caused by not staying completely gluten-free if you have celiac disease or gluten-intolerance. I got it from eating out twice a week at a place that had soy sauce in their fajita marinade, and eating things made in shared (with wheat) facilities. Even a little bit of gluten is enough to eventually make you sick for years.

    (I don’t react that much, either. I had to get a Marsh I level biopsy, ten years after going gluten-free, and microscopic colitis, to realize I was still not being careful enough, and still feeling pretty crappy.)

    It is completely treatable, and it’s curable with something called the Finer Protocol, but the symptoms can take years to resolve. Unless you’re willing to spend years, possibly having microscopic colitis (and, ew, gross, chronic diarrhea) affect your income and your social life, stay gluten-free.

    Reply
  6. 6

    Amy Robinson

    Thank you so much for your Raw, firsthand approach to many issues we face! I love this article and I hope you don’t mind that I just have to share it on my website!!! Thank you Gluten Dude! Your voice is what we need to “Stop the Madness” when it comes to gluten free prejudice and really gluten free Russian roulette when it comes to our health!!!!

    Reply
  7. 7

    Daniel Goldstein

    This topic makes me think that a post and discussion about what measures people take AT HOME to avoid cross contamination would be valuable . I raise this partly out of selfishness (ongoing treatment of my 5 year old with celiac and the struggle to get normal labs over 2 years after diagnosis).

    Our home is entirely GF, we don’t allow any G in the house. So I’m not talking about accidental cross contamination due to gluten products in the house. Rather I’m talking about naturally GF products that may or may not be susceptible to CC such as not gluten grains and particularly lentils and beans (we are currently going out of our minds as to whether or not lentils or beans need to be labeled GF). Fortunately and unfortunately our daughter is 100% without symptoms so there are no warning signs if she is getting cross contamination gluten.

    Reply
    1. 7.1

      Vik

      I hear ya about the bean/lentil thing, I feel the same. Opinion is so divided on whether rinsing them is safe enough.

      Reply
      1. 7.1.1

        John

        I’m also in the asymptomatic boat (aside from anemia that was caught on a failed visit to the blood donor clinic, which is what led to my DX last year in the first place).

        Drives me nuts when I see lentils labelled “may contain wheat”. I don’t buy them, but I wonder sometimes if the ones I do, which contain no such language, also deserve this warning. In any case rinsing is a must. And sorting, too — I’ve spotted the occasional pebble.

        Here’s another lentil mystery I haven’t figured out yet: why are the green ones always whole and the red ones always split? Why are they never vice versa?

        Reply
  8. 8

    Dick L.

    “The year before my diagnosis, I lost 15 pounds and had incessant stomach aches. Those were pretty much the extent of my symptoms.”

    That sounds pretty much like me, except my direct symptoms were regular indigestion, what your symptom list calls “gas that could clear a room”, and persistent “almost diarrhea”. All of these cleared up within the first month on a GF diet. Now 7+ months into the diet I’ve put on about 12 pounds (I was down to my lowest ever adult weight by about five pounds), but after about four months my iron absorption hadn’t improved and I was still anemic (something I’d never felt as a symptom, just apparent through blood tests). Night leg cramps have cleared up (I guess I’m absorbing potassium much better now), and a chronic cough has cleared up (celiac related?– who knows).

    I know I can get glutened (it happened once a few weeks after I started the diet and resulted in a roily gut for three days and more gas and near diarrhea). But am I suffering from cross-contamination? Would I be recovering faster if I were more careful? (Not that I’m not pretty careful; I really, really like the absence of the various symptoms noted above! I’m certainly not tempted to cheat.)

    I’m happy that I don’t have the dire symptoms that many suffer from small amounts of gluten (who wants diarrhea and gut pain from a couple of crumbs?), but I do wish there was some way I could tell if I’d made a small mistake. And as much of a PITA as celiac is, it sure beats diabetes or cancer.

    Reply
  9. 9

    Else

    I was diagnosed with almost no symptoms, and in the early days I didn’t react much to gluten (I never intentionally ate anything but there were some newbie mistakes). I too thought maybe the diagnosis was a mistake. But now, 6 years later, one crumb will leave me unable to function for 2 months. Theres no doubt i have celiac. So you might find that your symptoms change and increase over time.

    Reply
  10. 10

    Sharon

    My then 14 yr old son also did not have any gastrointestinal symptoms that would alert us to CD when he was diagnosed. He exhibited delayed puberty and short stature that prompted our Pediatrician to order a blood test that came out positive for Celiac. That led to having the biopsy done and when the Dr. scoped my son’s intestines he could not tell from sight (This Dr has 30 years experience with CD) if son was positive so we waited a week for the biopsy results which came back positive. That began our journey. However my husband could say yes to all the expected gastrointestinal symptom questions that my son said no to. Hubby’s blood tests came out negative twice! He has gone GF with son and his symptoms have subsided.

    Reply
    1. 10.1

      Julia

      Hi, my son is 12 and I went to see endocrinologist because of delayed puberty and short statue. Blood test showed positive and we have an appointment to see gastro doc this coming Monday. My question for you is: did your son catch up on his growth?

      Reply
      1. 10.1.1

        Sharon

        Yes, He gained 14 lbs in the first 6 mos and has grown 4 inches. Specialist said that he would grow out before growing up and that is what he did. We also checked his growth plate via x-ray and it showed (at the time of diagnosis) that he had NOT had his growth spurt so we could expect him to get close to “normal” in a year from diagnosis. He continues to grow and go through puberty.

        Reply
        1. 10.1.1.1

          Julia

          Sharon, thank you so much for your reply! Gives me hope!

          Reply
          1. 10.1.1.1.1

            Sharon

            Julia, Just sharing our continued success with you, my son had another 6 month check up last week. He gained 8 lbs and grew 1.75 inches in that time frame. We hope your son has similar success.

            Sharon

            Reply
            1. Julia

              Hi Sharon,
              Thank you for the update – I am feeling so happy for you guys !!!
              Biopsy results are back and it’s confirmed – my son has Celiac disease. I will see doctor on Thursday to follow up with results. Feeling very nervous – I learned that this disease has stages; praying that he is at least in the beginning somewhere… I started to experiment with bread making in my Cuisinart machine. It’s tough… seems that two breads with recipes that I made so far do not have much taste to them. Any leads to good recipes? I need the kind that you could do in the bread maker. I wish I could find a place where gluten free groceries do not cost arm and leg – it is so not fare that they are making them so expensive :-(

              Reply
              1. Dick L.

                Tough, but at least you have a diagnosis. I got mine 9/11/2013 (my own personal 9/11) and started eating gluten free immediately. Several of my symptoms cleared up within the first month, and more have eased or disappeared since. But if you’ve read this and other blogs, you’ll realize that everybody is different. Let’s hope your son is one who sees immediate benefits.

                Yeah, I’ve been somewhat put off by the prices of gluten free ingredients. I realize that they’re specialty products, and so command higher prices. And I know that most of the suppliers take a lot of care on where they get their inputs, like contracting with growers to raise oats on fields that haven’t been in wheat, barley, etc. for at least three or four years, and to harvest them with machinery that is only used for oats, and transport them in wagons and trucks that aren’t used for wheat, etc., and in general taking steps to see they don’t get contaminated with gluten-ful grains. And then the mill takes these things, processes them in a dedicated gluten-free facility, and then tests each batch to make sure some gluten didn’t creep in somewhere along the way. All of this care runs up the cost. But it still hurts to pay a lot more than for a similar non-GF products.

                For baking bread, I see it as an evolution. One starts with bread mixes and/or basic recipes, using single packages of stuff from the supermarket GF section. Pricey. After reading some of the many, many blogs that talk about GF bread and pizza crust, I started trying some of the more complicated recipes, that used ingredients like whey protein isolate and psyllium husk powder (see the “Gluten Free on a Shoestring” blog) together with GF single ingredient flours and starches. (I’m at this stage now.) Next will come settling on a few recipes. Then I can start buying ingredients in bulk.

                Many or most of the flours can be bought in bulk from various suppliers (many of which show up on Amazon) in 5, 10, 25, or 50 pound bags, at considerably less per pound than supermarket prices. Intermediate to that, things like Bob’s Red Mill flours can be bought directly from BRM, or from Amazon or one of the firms that markets though Amazon, in multiple bag lots, sometimes at quite a bit less than supermarket prices. When ordering online, quite a bit can be saved by buying enough stuff to get free shipping. So it does get better as you get experience. I think.

                Dick

                Reply
              2. Sharon

                Hi Julia, The upside of the disease is that your son will heal completely (as long as he eats Gluten-free) and no meds are needed to manage the disease. The downside is the cost of specialty GF foods. However my son did run across some info that with a Celiac diagnosis you can save your receipts and deduct the extra cost of the Gluten-free items as a medical expense. I am not a tax adviser, just sharing some info that you could investigate. We haven’t done this . . . too much work, but probably should try.

                I am yeast challenged but I did try to make some bread using Better-Batter flour. It came out OK – strange shape as GF flour behaves differently but tasted OK. We just buy Udi’s GF bread, bagels and hamburger buns from Trader Joe’s and those are only for the GF people in our family. My son toasts all his GF bread items. We all use the same toaster oven. . . OH MY! The GF people put parchment paper down on the toaster rack. Yes we probably spend more on parchment paper but we don’t have the space for two toasters. We also have a GF peanut butter jar and son uses a new butter cube frequently.

                It’s really not that hard. Going out to eat is the most challenging. My son even survived his first summer camp since being diagnosed. Fortunately he is really on top of info and knows all the questions to ask servers and cooks. Remember you know MORE about Celiac disease and proper food prep than most waitresses and cooks. You have to do the educating and since you are paying the bill you have every right to ask for special cooking of food.

                As far as stages go, our specialist said that our son would grow out before up and that it would take 6 months for his intestines to heal. He was a textbook case. He gained 14 lbs in first 6 months then started to go up. Our specialist now calls my son “normal”. You will find your stride and your son will adjust to this new way of life and all will be well.

                Reply
    2. 10.2

      Kathy

      Did your son regain height and start growing after going GF?

      Reply
      1. 10.2.1

        Sharon

        Yes, he is now a normal-size adult. We are 3 years into the journey and at his last check up the Pediatrician mentioned he could still grow a bit more. He will of course be GF for life. See my comments above for more info.

        Reply
      2. 10.2.2

        Sharon

        Yes, he is now a normal-size adult. We are 3 years into the journey and at his last check up the Pediatrician mentioned he could still grow a bit more. He will of course be GF for life. See my comments above for more info.

        Not sure if this went through . . .

        Reply
  11. 11

    Ed chat

    I got diagnosed by my dermatologist at first at 34 in January 2014 after visiting Italy and Paris and eating to much pasta and pastries . I then went to gi doc and tested positive on blood and endoscopy.
    I have no regular symptoms except for a rash here and there. I so so miss beer the gluten free beer does not compare. For all those people that say red bridge is good I would rather drink ginger ale. I have tried any gluten free beer I have come across skipping gluten removed. I do not feel cider is even comparable to beer. It has so much sugar that I would start to worry about diabetes. The best beer I have had so far is glutenberg. It just stinks that I have to drive to new Jersey from Queens ny to buy it because no distributor carries it in NY.
    So after my rant my question is what do real past beer drinkers drink at social occasion. Wedding bbq……. I have also been concerned about cross contamination since I do not get the effects on being glutened . I worry when we go out to a restaurant that I may get gulfreed( a gluten roofe). Should I be so paranoid.
    I cook most almost all my meals for me and wife so it is only a problem when we go out. I’m still new to this so any help is appreciated.
    Hey G.D what or how did you cope at social events when everyone knew you liked beer. I do turn down a drink when someone buys me a beer but always turns into a whole long story how I got celiac. I have thought of typing the story and give it to people when they ask and say read this if you truly want to know.
    Thanks all
    Ed

    Reply
  12. 12

    Julia

    Could anyone please let me know if their children started to catch up on growth once they started to eat gluten free? I am so concerned… my son has no symptoms at all, but tested him ( blood so far only) because I was concerned about his short statue and delayed puberty? We have an appointment to see gastroenterologist in few days and I am sure he will schedule a biopsy, however, my mind can’t stop racing… Thank you in advance.

    Reply
    1. 12.1

      Gluten Dude

      Hi Julia…this is a pretty old post so not sure if you’ll get a response. I cannot answer you, but if he has celiac, that means he was not absorbing as many nutrients as he should have been. So I’d say once he’s healed, it’s possible. But your doc should be able to tell you more. Good luck to all of you.

      GD

      Reply
  13. 13

    Ed chat

    Dude how do you handle the beer pushers. When I first posted I believed you had recently been gluten Ed

    Reply
    1. 13.1

      Gluten Dude

      Not sure I understand the question…

      Reply
      1. 13.1.1

        Sharon

        I think Ed was asking about people who offer to buy you a beer in a social situation, and he has to give an explanation as to why he can’t have it.

        I’m not a big beer drinker, but I’ve always just said “no, I’m driving”, instead of trying to explain the why’s and where-fores of not choosing to drink.

        A year later (found this site thanks to Google), so hopefully that might help a little.

        Reply

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