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11 Comments

  1. 1

    Daisy

    On the work travel question–make sure your boss or whoever approves your travel receipts knows you have special requirements (and yes, celiac is considered a disability). I travel with a soft-sided cooler and gallon ziplock bags (for ice) in my luggage and an array of foods such as Kind bars, gluten-free instant oatmeal, single serving peanut butter, etc. My boss knows that on my first day out of town, there will be a large charge at the grocery store. This is me stocking up on my food, which I then keep in the cooler if I do not have access to a refrigerator (although I try to always stay at a hotel with an in-room refrigerator and microwave). I may end up eating a lot of yogurt and salads with turkey, but I’m safe. I travel mostly to larger cities, and I am usually pleasantly surprised by the gluten free options (Dallas has two all-gluten-free restaurants! Chicago has gluten-free donuts!). It does take a bit more effort, but it can be done.

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  2. 2

    Beth

    Great post! I have had a question rolling around in my head for a while: What if this is as good as it gets? I’m so frustrated because things seem to get worse rather than better, 2.5 years after diagnosis and being completely gluten-free. I keep hoping things will get better, but what if it doesn’t?

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    1. 2.1

      Laura

      I’m with you on that one, Beth. It’s been about the same amount of time for me since dx (January 2014), and I kept having symptoms. I went to a GI doctor at Mayo Clinic (thankfully I live in MN, so it was a $25 bus/shuttle ride down there). He ran tests including an endoscopy. The endoscopy showed that my villi were quite happy (one of the best he’s ever seen, apparently), so there was something else going on.

      I’m silent Celiac, but I noticed I was REALLY REALLY bloated all the time. Also, gassy… I’m on a modified diet based on the FODMAP diet now. I started with 1 food (peanut butter toast) for a couple days, then added only ONE food item every 2-3 days. If I got bloated/gassy then I cut out the food(s).

      I now have a long list of things I can’t have (won’t burden you with reading it all here unless you want to), but I’m not bloated or gassy all the time. If I try a new food that makes me bloat, I seriously look pregnant! I could go in the maternity clothes section and no one would bat an eye. Those days are hard to dress for work, as pants are tight, but dresses show the “bloat bump” more.

      I’ve got a better handle on it now, after doing this new diet for 9 months, but I’m still introducing new foods here and there. Baking has gotten interesting between gluten free, dairy-free, and only 1 DF milk I can handle, but it’s been fun to make up my own recipes for things.

      I guess I would suggest you see your GI doctor (or maybe another one who can look at your symptoms in a different light) and see if there are tests he/she can do or a new diet they could suggest. I would not suggest trying a new diet on your own, though, as you don’t want to do more harm to your body. Maybe even ask for another endoscopy to make sure that it’s not the Celiac that is rearing its ugly head? Sometimes we gluten ourselves without knowing it, so it’s good to rule it out if possible and move on to other solutions.

      Good luck! I hope you get it figured out.

      Let me know if you have questions about my “special” diet – I’m MORE than happy to share :)

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      1. 2.1.1

        Beth

        We must be sisters… that sounds like me exactly! I can look very pregnant often because of the bloating. I’ve been on low FODMAPs since I was diagnosed with celiac, and had IgG food sensitivity testing which showed lots of things. I’m also being treated for candida overgrowth, and that has helped some with cutting out all sugar and fruit, but hasn’t removed all symptoms. I’ve worked with a dietitian, nurse practitioner and my doctor, and everyone is out of ideas. I was already treated for SIBO.
        With the low FODMAPs, no/low sugar, celiac, and plant-based diet (I will not eat animals), I have few things left I can eat other than fresh vegetables, homemade nut butter, low-sugar berries and some nuts and seeds. I think I need a small intestine transplant!

        Reply
  3. 3

    Kristen

    This post actually sparked some questions I have – I was diagnosed with celiac in 2012, shortly after having my daughter. I read that it can be genetic, and since I show very few symptoms when I do get glutened, I am concerned that she could develop it without my knowing.
    Every time they draw her blood I ask them to run the celiac panel and we have always gotten normal results (she is almost 4) but if the blood test ever comes back positive, should I immediately assume she also has it and spare her the endoscopy? Or should I still get the endoscopy done?

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  4. 4

    Carolyn

    Loved the shoutout to On the Dark Side! Dude, glad to hear that it took you some time to heal, as it’s been two years since my diagnosis and I am finally starting to feel human. Recent blood work showed a “critical” vitamin D deficiency, and I am now taking 50,000 units a week. A month later, starting to feel much better. I never, ever, eat out, and kitchen is completely gluten free, so there is light at the end of the tunnel. Just bought a travel trailer so we can still travel and prepare our own food. Celiac is an inconvenience, but with a supportive spouse, life is good.

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  5. 5

    Mari

    I stopped buying Udi’s at least three years ago. Initially they were good even when the slices were tiny. Then when they got really successful, the quality slipped dramatically. The bread was always hard and dry, there were huge holes and it tasted nasty. Same thing with Canyon Bakehouse. I used to buy their bread and buns all the time, but they changed their recipe. The bread was always dry, but toasted it was okay if a bit damp. Their buns used to be wonderful, but now they are like bricks. We still buy their bagels and everyone likes them, but for sandwiches I buy Schar’s bread. Everyone has something they like or don’t like and you have to go through a lot to find one, and then hope they don’t change the formula. I hear a lot of positives about Three Bakers, but I can’t find them in my area, and the prices at Amazon are pure extortion. So no thanks. We don’t buy a lot of bread because we don’t eat many sandwiches. Aldi’s has surprisingly good wraps, and their bread is okay but has to be toasted. They are popular though, and the bread is sold out quickly. It is also about a buck cheaper than other gf breads. They also get promotional gf items throughout the year, so when I see them on ad I buy them. Around Thanksgiving they sell the canned onion rings which were amazing and just as good as Durkee’s. Whatever you do, don’t buy the stuffing mix! It is horrendous and while the bread itself is okay, the dried celery is comparable to gravel. It never softens.

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  6. 6

    MaryKate

    Few additions:
    I check ingredients in cleaning products for anything I use in the kitchen. Most products are gluten-free, but I’m more careful there. I mostly use vinegar, baking soda, and vodka with some liquid soap.

    For the 17 y.o. — when my food issues cropped up, I was first relieved, and then food was a source of anxiety. Any chance that you’re dealing with panic attacks or anxiety? When FOOD becomes unsafe, the entire world is scarier than it was. I had to leave grocery stores sometimes because it was just too much. Whatever is going on, you need more help than you’re getting just now. Ask for it. It gets better.

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  7. 7

    Amy CT

    Re. traveling for work: I work for a non-profit, so our per diem for travel is incredibly low. I always make sure to book well in advance so that I can afford a hotel room with a microwave and fridge. Sometimes, this means a crappy hotel, but so long as I can eat safely, I don’t mind.

    In Australia, we can’t carry fresh fruit or veggies over state lines, but I usually take everything else with me. We had a new expenditure policy recently, and I fought bloody hard to make sure that the per diem can be spent all at once, at the supermarket, the day before travel. My workplace has actually found that I tend to work out cheaper than other people because I take my food with me.

    In my hold luggage (ALWAYS have hold luggage!), I carry:

    – cereal
    – soy milk (the kind you don’t have to refrigerate until opened)
    – packets of soup or curries
    – packets of pasta sauce and pre-cooked rice sachets (pasta sauce and rice is a weird meal but needs must)
    – bread rolls
    – sandwich fillings (usually pesto)
    – margarine
    – snack bars
    – fruit cups
    – chocolate bars
    – juice cartons
    – foil or gladrwap for wrapping sandwiches

    As I only have to travel for a few days at a time, I’ve found this usually works pretty well. Sometimes, I’ll also fo to a supermarket when I arrive to pick up fresh stuff.

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  8. 8

    B

    For the 17 year old who is still symptomatic-obligatory IANAD, but- the first resource I would suggest is the book from the Celiac Center at Beth Israel Deaconess Hospital. They cover so many aspects of the disease in a very accessible way. For patients who are still symptomatic, they list the next steps to figure out what’s wrong. I think they have that info on their website too.

    I don’t want to seem like I’m diagnosing, but one possible lead would be to see an endocrinologist. Celiac really messed up my endocrine system, and those symptoms listed- difficulty breathing/swallowing, weight gain, fainting, tremors, rapid heart rate, insatiable hunger, blurry vision, weakness etc- they all ring a bell. It sounds like a thorough check up of adrenal and thyroid function and blood sugar would be wise.

    Also a thorough check for vitamin and mineral deficiencies, since those can cause all sorts of symptoms.

    Another possibility is a neurologist, for those who develop neurological complications.

    Hopefully OP has recourse to a specialty celiac center at a hospital or something where they can get coordinated care. I wish they could see my doctor, he treats cases like this!

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  9. 9

    Holly Agnew

    As far as bread goes, try making Cloud Bread. It has only eggs, cream cheese, salt, sugar (if desired) and cream of tartar. It is very good and DOES NOT FALL APART WITH A SANDWICH OR A HAMBURGER! There are lots of recipes online. I heartily encourage everyone to give this a try. Its not bread, but its not bad.

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