• Hi all,

    I’ve stayed away since Thanksgiving, but yahoo, I think I’m back in the saddle. There are numerous reasons for my not posting to my gluten-free blog, but the two most obvious are that things on the business front got very busy and I just didn’t have/make the time to post. I took pictures, intending to post and blog about the pix, but just never got around to it. The second reason, maybe even the more pressing reason, is that I just hit a gluten-free wall. I’ve felt embarrassed and even angry with myself – though I think I’ve moved past it. Let me explain – at some point in the last few months, I decided that I’m angry, annoyed, pissed, sad, and lonely. Angry because after almost one year living gluten-free, I’ve gotten past adapting to my new gluten-free life and am now asking “Why me?”. Annoyed because it’s a major pain in the butt to eat safely when out of the house – every time and I mean every single time we eat outside of the house, it is a major friggin’ production. I’m so sick of explaining it to waitstaff at restaurants that I could scream. Pissed – ditto on the last sentence. Sad and lonely because I feel so removed from other people – it’s really hard to be this different when it comes to food – a major element in all of our socializing.

    And to add insult to injury, we just returned from a 10 day trip to London and Nottingham, England where I was contaminated – not just once, but twice! The first time was last Friday, December 22. We were at a conference in Nottingham and the caterer for all the meals assured me that the evening meal for that night was entirely gluten-free. We felt very comfortable and ate without worrying. Big mistake. Within a few hours, I knew something was fishy. I began to ache all over – headache, body aches, stomach ache. It felt like the flu without the fever. I’d read and heard other Celiacs talk about feeling like they had the flu after eating gluten – but now I knew what they were talking about. I took some Advil and a sleeping pill, thinking it would get me through the night. My husband slept like a baby. I lay awake all night, tossing and turning, certain I was going to need to go to a hospital. Sorry for the graphic description, but I wouldn’t be telling you the whole story if I didn’t tell you that I finally threw up my entire dinner at about 5 that morning. And though I finally felt some relief, I really haven’t felt back to normal since. Of course, it doesn’t help that I was contaminated again this past Wednesday when we returned to London from the conference in Nottingham – we were watching a movie and munching on what I thought were gluten-free potato chips made by the Kettle Company. The package said “Suitable For Coeliacs” on the outside, so I didn’t even bother to check the ingredients. They were yummy – it was the Sea Salt and Balsamic Vinegar flavor. Within a few minutes of finishing them, I began to feel that now familiar feeling. The headache was first. Followed by the stomachache. I quickly looked up Kettle Chips (the United Kingdom website) and read their FAQ page. Sure enough, there was a reference (I can’t remember exactly what it said) to the ppm (parts per million) of one of the ingredients in the Salsa flavored potato chips. There was nothing about the Sea Salt and Balsamic flavored chips I’d eaten so I then fished the bag out of the trash and read the ingredients (which I should’ve done in the first place). Barley malt!!!!! I just ate half a bag of chips containing barley malt!!!! I was so mad at myself for not reading the ingredients before eating them. Well, I had another bad night – not as bad as the Friday night before, but I still tossed and turned. And I’m still feeling the effects less than three days later. I have a feeling that it will take awhile until I feel back to normal. At my post-endoscopy doctor’s appointment last January, my husband asked the doctor what would happen if I were very compliant and then at some point decided to eat a bagel. The doctor said that it would take a month to undo the negative affects on my intestine – 2 weeks if I only ate half a bagel, and a few days if I took only a bite. If that’s the case, I have no idea how long it will take before I return to feeling really good again, as I’m not sure how much gluten I really did consume in England. But I’m certain it was the Friday night meal that was the first culprit. There were other Celiacs at the conference – I spoke with one of them (a young woman in her early 30’s who was diagnosed at age 1) on Saturday morning after the gluten contamination. She’d eaten the same meal as we did and was certain that she’d been contaminated based on her own personal reaction (I won’t go into it, but suffice it to say that when she’s eaten gluten, her reaction is always predictable).

    I posted about this experience to the Icors Celiac listserve and received numerous replies. One person explained that the labeling is different in different countries – which I knew, but had completely forgotten about. In order to say it’s gluten-free, the product has to have no more then 100 ppm of gluten, in Canada it’s less (something like 20 ppm) and in Europe it’s 200 ppm. So, even though the potato chips that I ate in London had enough gluten (barley in this case) to not be able to call them gluten-free in the US, they are deemed gluten-free in England.

    So much for not reading labels – that will NEVER happen to me again, I can tell you that. I don’t remember ever being in that much discomfort. And I wish I could say that I feel 100% back to where I was – after almost a year of eating gluten-free and being totally compliant – I was actually feeling good again. No more indigestion at all. And I think my hair has stopped falling out (yes, I have Alopecia, fortunately on a part of my scalp that makes it undetectable). But since last Friday, every single thing I eat gives me major indigestion. Even as I sit here typing this, I am in major discomfort. Feels like I have a toothpick stuck in my esophagus.

    Despite the complaining, I am very glad to be home. One of the first things I did was make a loaf of gluten-free bread in our bread machine. This recipe is SO good – it’s actually edible without toasting it – which personally, I think is a feat when it comes to gluten-free bread. Most of it needs to be toasted in order to make it palatable (with some exceptions including Breads From Anna – her mixes are fantastic). I found this recipe online but have changed it by not including the buttermilk powder that it originally called for. I also changed the flour combination to include 1 ½ cups of brown rice flour and ½ cup of sorghum flour rather than 2 cups of brown rice flour. I also added one tablespoon of flaxseed meal. And I used regular soymilk instead of cow’s milk. Now that I’m getting a bit more comfortable with different bread recipes, I’ll probably continue to experiment with this recipe as I’d like to increase the protein in the bread. I might try replacing some of the brown rice flour with some chickpea flour the next time I make it.

    For those of you who have the Zojirushi bread machine, please see my note beneath the recipe to explain the setting I used on the machine.

    If you make this, remember to bring the eggs and milk to room temperature before blending the ingredients.

    Old-Fashioned Gluten-Free Farmhouse Bread

    ¼ cup oil (I used canola)
    1 ¼ cup plus 1 tablespoon unflavored soy milk
    3 large eggs
    1 ½ cups brown rice flour
    ½ cup sorghum flour
    ½ cup potato starch flour (NOT potato flour)
    ½ cup tapioca flour
    3 ½ tsp. xanthan gum
    ¼ cup sugar
    1 ½ tsp. salt
    2 ¼ tsp. active dry yeast (1 package plus part of another package)

    Combine oil, milk, and eggs. Pour into bread machine pan.

    Combine brown rice flour, sorghum flour, potato starch flour, tapioca flour, xanthan gum, sugar and salt. Pour over the liquid ingredients in the bread machine. Sprinkle the yeast on top of the other dry ingredients, being careful not to touch the sides of the pan with the yeast.

    Select the “Home Bakery”cycle by pressing the “Select” button until the arrow in the timer window points to the “Home Bakery” choice in the lower right hand corner. The other arrow will be on medium.

    Then press the cycle button in the “Home Bakery” square which will allow you to move through the various settings. As each setting appears in the timer window, you can figure out the amount of time by pushing the “Time” button to the left of the “Cycle” button. Settings can also be turned to “Off” by pushing the “Time” button until “Off” appears.

    Warm: 10 minutes
    Knead: 18 minutes (I lift the lid and use a rubber spatula to mix in the flour that remains on the side walls of the pan with the other ingredients that are being kneaded)
    Rise 1: Off
    Rise 2: Off
    Rise 3: 55 minutes
    Bake: 55 minutes
    Warm: Off

    If I remember correctly, you have to then press the start button twice. But don’t quote me – I should’ve taken notes, but I forgot to. I was so excited to make the bread!!!

    Thanks for visiting my blog – stay in touch!
    • Dori

      Glad to see you back and wow – you really had an experience while traveling. I’m copying the bread recipe and going to try it sometime…. I wonder what I could do with silken tofu and egg replacer to replace those eggs.

      Do you have Bette Hagman’s Gluten free bread book?

    • Robin

      I just started reading you, and am so sorry you had such a bad time of it!
      I, myself have been gluten free for just a few months, and am feeling better in many ways, but still struggling with adjusting to the new lifestyle.
      I must tell you what helps me with the indigestion and reflux, and that is ginger. I use the fresh juice when I’m bad, and the tea all the rest of the time. I have grown to really love it, and have it (tea) every day whether I have indigestion or not. Maybe it would help you through this bad time. I’m sure you are healing as we ‘speak’.
      For the juice, run some fresh roots through a good juicer, and store in the fridge. Then every morning, take a spoonful before anything else goes in your mouth. At first it burns, but after a few days, it starts to feel good and you look forward to it. Good luck, and thanks for the blog.

    • ellen

      Robin- thanks for the ginger tip. What kind of juicer do you use? We have a champion, which is a very good one, but large and cumbersome and a major production to use. Also, how much juice to you extract and how long does it last in the frig? Ellen

    • ElwoodCity

      Welcome back. I’ve been glutened a couple of times recently, and it is not fun. My experiences don’t sound like they compare to yours, though. Nothing of mine was labelled gluten-free. I would feel somewhat betrayed, to say the least.

      How do you get your comments to show up? Mine (few as they are) require you to click a link to view them.

    • Ellen

      Hi elwood city,

      I just added you to my blog list of celiac blogs – even though you haven’t been officially diagnosed, it sure sounds like you have it. Whatever you have, welcome to my world! Check out my last blogged bread recipe – I used sorghum and rice flour. You might want to give it a try. I’ll bet you could use more sorghum and less rice. Let me know if you try it. I can’t help you with getting the comments to show up – I’m sure it’s a preference setting – I wish I could help you. But the help sections of blogger are pretty good – it just takes time to research and figure out how to use everything. Good luck!

    • GrewUpRural

      You are not the only who has those why me days. I also find it annoying to explain my restrictions to the waitstaff at a restaurant that has a gluten free menu.

      Another annoyance about being gluten free is having to explain to co-workers why I can’t go to a pub for our Christmas party. I have told these people several different times what I can’t eat. I just stopped telling them and not join them.

      There are many of us out there know how you feel.

    • Ellen

      Hi grewprural,

      We are definitely in the same club, aren’t we?!?!?! After a year of trying to explain and hoping people will understand, I think I’ve realized that people who are directly involved with someone who has Celiac (a parent with a child who has it or a spouse who cooks for their Celiac spouse, for example) are about the only ones who really get it. The others, well, they don’t live it so they really can’t understand unless they just really have the capacity to open up and listen well to your story and your situation. And there aren’t too many of those people around, unfortunately. So, it’s a lonely club, but it’s our club, isn’t it?!!!

    • Lynn Barry

      Oh dear…what a mess.One half bag of chips? Jeepers!
      I was not diagnosed with celiacs but had already been gluten free when tested by the GI Dr, but I do know that I can not tolerate gluten, as well as casein, corn, soy, yeast, and eggs, so I stay clear away from all of it. I used to pine away for Little Debbie’s, and Pizza shop pizza and everything and anything gluteny. But I am truly at the point where I think of it as poison because I feel so damn good now and didn’t ever before…London cured you…I predict no more missing what you can’t have and no more WHY ME…It sounds good, I know but none of us are perfect and we are going to have an off day or month but you have vented and now you are free to get back at it and forget about what you are missing and enjoying what you can have.
      Ok…forget that…let’s throw eggs at a wall and mashed potatoes at unsuspecting cars passing by, ones with people in them who can eat anything they friggin’ want to eat any time and anywhere…they suck! oops…got a little carried away.
      HUGS,
      Lynn

    • shlomit

      Hi!
      So happy to have met you and to hear you feel better. I love your blog, many of recipies I would try at home!
      take care
      shlomit

    • Ellen

      Dear Shlomit,

      So good to meet you too. I am, after two weeks, finally feeling better. I hope you recovered quickly too. Keep in touch!

    • Chad

      Hi Ellen,
      I was wondering if that recipe can work in any machine, or just the new ones with a gluten free cycle…?
      I am new to avoiding gluten, and stumbled upon your site looking forrecipes.
      Thanks!
      chad

    • ~M

      Oy, I think this post, which delineates how different countries have different gluten-free labeling laws, explains why I’ve been so sick the last two days: certified gf English oat matzot. I am so miserable and feel so stupid for not researching this. My reaction is similar to your’s – headache, then stomachache, then everywhere and takes weeks to recover from :(

    • http://www.awalkinmygarden.blogspot.com Christina

      I'm sorry that happend to you. But the bread recipe looks wonderful!

    • Emily

      I'd love to try this but don't have a bread machine…do I need to adapt it to make it by hand? Thanks!

      • Gluten Free Diva

        I make almost all of my gluten free sandwich bread in a bread machine. However, I think you could easily adapt this to make it by hand. Though I would at least use a hand mixer to mix the ingredients. Let me know how you fare!

    • newGFmommy

      We're just a month into the gluten-free diet- so excited to find your website! I have 4 kids, and within the past week we've had 3 contaminations! I was worried that we weren't getting better yet, and maybe it was something else entirely, but reading your posts was like reading our last week, and I'm relieved (sort of) to know that it's not unusual to still be feeling out of sorts after almost a week. Thanks for sharing your experience, though I'm sorry you had to go through that :-(

    • Neesy

      I'm fairly certain you could have had a msg reaction, also, to the salt and vinegar kettle chips.Sounds like what happens to me in those cases.

    • Francesca Meredith

      Hi there and thanks for a great site and blog,which I am new to. Thanks for sharing your frustrations and experience whilst travelling. I have only been gluten free for +/- a year and experienced a bout of feeling so very lousy after eating a curry recently. 10 days later and still feeling not my best. Spent three days in bed with headaches, dreadful cramps and pain, exhaustion, depression etc,. Had forgotten how bad it can feel and how long it takes to get back to normal. Think it must have been the poppadum I ate, but never can be sure.

      I was encouraged (?) to realise that this is how other sufferers feel and the reality is that it is difficult to eat out safely. I live in Johannesburg South Africa and have found one restaurant where I can eat and be sure all is safe.

      The other frustration I have is people just don’t understand how sick one can get through eating wheat inadvertently and how difficult it is to eat out when most dishes, especially at coffee shops contain gluten, wheat. I am also allergic to nuts,mango and avocado, so it can be trying.

      Thanks for the opportunity to vent to someone who understands. Luckily I have 2 friends who also are gf, so that is a help. Have a fantastic day and God bless you! PS thanks for the recipes!

      • Ellen

        Welcome Francesca! So glad you’ve introduced yourself!

    Previous post:

    Next post: