BC Becky

Never thought I'd want to be a breast cancer survivor

Category: Celiac

  • A different type of elimination diet – #celiac and eating out

    A different type of elimination diet – #celiac and eating out

    Out of the biggest challenges I’ve had since being diagnosed with celiac disease has been eating out. We used to eat out about once per week. It was often a treat or an opportunity to socialize. With the renovations, grabbing a quick meal became a bit of a norm. We had fast food meals on most weekends. Unfortunately, with the need to be gluten-free that limited where I could eat. I ate a lot of In-N-Out Burger and Asian Box – both great places to get gluten-free meals, but after a few weeks I was getting rather sick of them.

    When friends said they were picking up dosas (South Indian Food) I had them ask about gluten. The restaurant confirmed that they were gluten-free with little risk of cross contamination, and so I asked for one. I figured I might as well give it a try. I thoroughly enjoyed the potato filled dosa with some coconut chutney. Originally, I thought I’d only have a bite or two, but I realized that if I’m going to get exposed to gluten, the difference between a bite and an entire dosa doesn’t matter. My body will react the same way. And so I thoroughly enjoyed the dosa. It’s been a couple of days, and I’m still feeling good – which means that the dosa and chutney were indeed gluten-free.

    Now that I’ve been gluten-free for several months (since October, 2015), I’m feeling like my stomach and skin are finally healthy enough for me to branch out a little. I’m also feeling like I cannot live with a constant fear of getting sick. I cannot live with anxiety around having lunch with friends – or asking my friends to only ever eat at one restaurant. I need to feel that I can be more flexible but also that I can enjoy not just the social aspect of lunch with friends, but also the eating part of lunch with friends. I’m a foodie. I love good food. I want to be able to enjoy good food.

    It occurred to me that I need to approach my restaurant / eating out in a similar manner as elimination diets. Now that I’m feeling ‘healthy’, I can add one new thing (probably once per week) and experiment with what I can do without getting sick. Being able to eat different types of cuisine and having different restaurants to choose from really helps me manage life – especially social life and travel. So now I just need to find out where my friends got the dosa, so I can add that restaurant to my list of options!

     

     

     

  • My first solo road trip #celiac conference #cdfexpo

    My first solo road trip #celiac conference #cdfexpo

    Last weekend I did my first solo road trip. I drove down to Pasadena to attend the celiac disease foundation annual conference and expo. I had thought it was going to be a 4-5 hour drive, which unfortunately turned out to be more like a 6-7 hour drive. The good news is that I did it! I drove down to Pasadena on Friday in time for dinner, and returned on Saturday – actually, I got about 1/2 way home and spent the night in a hotel in a small town along highway 5. I was home before noon on Sunday (and back to renovating).

    I was drawn to the conference and expo because I wanted to learn more about celiac disease. I wanted to hear about the latest research. I was also really curious what I would find at the gluten-free expo. I attended the conference as an official Celiac Disease Foundation (CDF) patient advocate. I wasn’t exactly sure what this meant, and had hoped to get some training about how to advocate for policy changes and research. I was also hoping to meet some new people. I wanted to hear about the different things other patient advocates where doing.

    The conference itself was full of good presentations, unfortunately it was too full of presentations. The conference started out at 8:30 after a full buffet breakfast (gluten-free of course!). The first speaker and Q&A ran past 10am, when were allow into the expo before the general public. I ended up sneaking out during Q&A (as did many others) in order to get enough time in at the expo. I rushed through sampling a bunch of different things, and unfortunately ran out of time. I didn’t get to see the entire export. Presentations started up again at 11am and literally continued through to 4pm with a continuous stream of speakers. There was not even a bio break! Lunch was served while the dietician spoke about gluten-free diets. What this meant was that there was no time for conversation, and no chance to meet new people.

    On the drive home I was a little grumpy about the whole thing. I didn’t find that the speakers added to my knowledge. I got a few small nuggets of new information, but for the most part it was stuff that I already knew. There was nothing about advocacy. It was all about different aspects of celiac disease. Since we didn’t get time to talk to each other, I felt like I could have read the information or watched online videos. I didn’t need to drive all the way to Pasadena. I felt kind of bad for those that travelled further to attend.

    One of the nuggets of information I did learn was around the topic of gluten-free diets. From the days of our bike trip, I knew that I needed to eat more protein than Scott, but also that I had trouble getting enough protein/iron from vegetables. Scott could easily eat vegetarian all the time. Whenever I tried, I starved. It just didn’t work for me. One of the things I learned was that the celiac diet (strict gluten-free) is typically low on iron, fibre, and B vitamins. Those with celiac disease also often suffer from deficiencies in micronutrients (in my case zinc). This is in part because most gluten-free foods are not fortified. The low iron explains why if I don’t eat red meat for a week I find myself hungry and tired. I feel the lack of iron in my gluten-free diet.

    The gluten-free expo had a lot of different foods to sample. I did find a few good ones (a great pizza, and some excellent dumplings). One of the challenges was that the expo had mostly gluten-free junk food. I would like to have seen more educational booths at the expo – ones where people where demonstrating gluten-free healthy alternatives that were not pre-packaged goods. It would have been nice to have vendors interspersed with educational booths. Perhaps I’m asking too much!

    I do wish I had learned more about advocacy. One of the things that occurred to me during the conference was that the new patient advocated needed to learn more about research processes. Our role is supposed to be to provide patient voice into research projects. We were funded by a federal grant to support PCOR (Patient-Centered Outcomes Research). I don’t believe it is possible for patients to be heard by researchers, if the patients don’t understand the language of research. Patient advocates need to learn the basics of scientific and health research in order to effectively give voice to patients throughout the research process.

    Do you think patient advocates need more training in research methodologies?

  • I didn’t get sick … life with #celiac disease

    I didn’t get sick … life with #celiac disease

    I just had a conversation with a friend about how we need to be better about blogging when things go well. It is so easy to find reason to write and rant about things, but more difficult to remember to write when things go well. So this post is mostly about things going well, with a little stupid mistake on my part.

    Last week I spent the three days in New Orleans for an Ed Tech conference. I managed to navigate eating in New Orleans without getting sick. That is a huge success. I had only one minor melt down – and that had more to do with high expectations not being met. We were at a nice restaurant for a special dinner event with 50+ people. I expected that when I requested a gluten free meal (which I did well in advance) that I would get a decent meal. Unfortunately the shared appetizers were not gluten free and there was no effort made to provide something. Then when the meal came I was not given a choice between chicken or fish like everyone else. I was given a piece of dry chicken breast. I had a minor melt down. I refused to eat it. Shed a few tears at the frustration (body filled with sadness), then turned it into anger. I expressed my anger to the wait staff and asked that they asked the chef to make me something better. I would be happy with pan fried piece of fish that was gluten free. This should not be a difficult request. The waiter did well. They took away my dried chicken breast and about 5 minutes later a nice piece of pan fried fish arrived. I am so glad that I found the courage to get up and complain. This is part of my advocacy – I remember writing about it early. I need to speak up for all those with celiac who are not able to. Good restaurants can do better!

    I am, unfortunately, very sensitive to gluten. After getting home, I foolishly bought some chocolate ice cream. It was a brand that I have purchased before – organic, local. I’ve always bought the cookies and cream made with gluten-free cookies. I’ve never had a problem. This time I bought the dutch chocolate. The next day I was horribly sick (diarrhea, stomach cramps, felt like a fever). It took me a while to figure out what it was that I had eaten. I should have known better. I recall at the conference in New Orleans someone handing out chocolate bars. I asked if it was gluten free. They said it was just chocolate, so it should be. I explained to him that most chocolate is NOT gluten free, as it is often processed on equipment that also processes gluten. I knew enough in New Orleans not to try it. I should have known that the dutch chocolate flavored ice cream would be a problem. As the saying goes, live and learn.

    I am celebrating that I didn’t get sick in New Orleans, and I’m learning that I shouldn’t buy any ice cream that isn’t gluten free. Fortunately, I own a good ice cream machine. Next time I want chocolate ice cream, I’ll make my own.

  • A drug to make travel less stressful #celiac

    A drug to make travel less stressful #celiac

    Since my celiac diagnosis, I’ve been totally stressed out about travel. I love to travel. One of the things I love most about going to new places is trying out the different regional cuisines. However, with celiac disease that is really difficult. Any amount of gluten in the food makes me sick. What some people with celiac do is bring their own food or make food for themselves. I get that, but I also would feel like I was missing out so much. I want to be able to enjoy the experience of being in a place without having to fear that I’m going to get sick.

    Over the last four months I’ve done rather well on a gluten free diet. My anti-body levels (which is how they measure whether or not you are being exposed) are now down to almost normal. I see this mostly in my skin symptoms (dermatitis herpetiformis) which have almost completely gone.

    At my last follow up appointment with my GI doc, I asked her about this study drug which is hopefully coming on the market by 2018. Her response was encouraging. Although it isn’t a cure or a magic pill that can be taken to allow indiscriminate gluten exposure, it will help for those times when it is unavoidable or very difficult. The drug (larazotide acetate) is about to go into a phase 3 trial (http://www.innovatebiopharma.com/inn-202.html). The initial publication of the results is here: http://www.gastrojournal.org/article/S0016-5085(15)00199-7/abstract. It isn’t like a lactase pill for diary exposure – which you can take anytime. It is more something that you would take occasionally if you were accidentally exposed to gluten. Since it blocks a protein, my guess is that long term repeated use would lead to some form of malnutrition. But for those occasional times, like when you are on vacation or need to travel, the freedom to be able to not stress about food is huge. I would sign up for the trial except that I’m not willing to intentionally expose myself to gluten for the purposes of the study. I’ve seen the adverse affects of gluten exposure in my family, and I’m not willing to do intentional harm for the sake of a drug trial. However, I’m glad that others are willing to give it a try. I’m looking forward to when the drug comes to market.

    Personally, I’d still chose to avoid gluten. I know that for me it is poison. That is what I think of every time I see bread, cake, etc. However, it also causes me to get a little anxious in social settings – and especially at events with communal meals. For example, at one place the food (except the bread) was all gluten free. However, they put the bread basket behind the salad. This meant that every time someone grabbed a piece of bread, crumbs would fall on the salad. I had to point out that they needed to position things to avoid this. It is this level of stress that I just don’t need. To be able to not worry about it with every single meal when I’m not feeding myself would be a huge relief.

  • My meds are making me sick … #celiac

    My meds are making me sick … #celiac

    I’m looking for some help in understanding how laws work in the US (sorry I’m a Canadian living in the US). I am so frustrated and annoyed. I’m frustrated at the lack of disclosure of gluten in drugs, and I’m annoyed that I didn’t do my due diligence and check for myself before taking medication from an unfamiliar manufacturer.

    I want to better understand how to follow a bill/act that is trying to get made into law. Specifically, I want to know what is happening with the Gluten in Medicine Disclosure Act.

    I am feeling seriously crappy after taking blood pressure medication for the last week. It was a refill, so it was a change in manufacturer of the generic that got me into trouble. I have been getting sicker and sicker – and so I finally got around to calling the manufacturer. Their voice message was “we do not disclose the ingredients in any of our products” Period. So they are officially on the black list – avoid anything manufactured by Roxane Laboratories period! Since this was the one significant change my diet over the last week, I’m pretty darn certain it is the cause of my problems. Ugg.

    And so now I’m stuck. It is the weekend and I cannot figure out what I should be doing regarding my blood pressure medications. Fortunately I have a few pills left from the older prescription (lower dose, different manufacturer). I cannot 100% confirm that the other pills are gluten free, but I can say that the type of sick I am now (stomach sick) didn’t happen with the other manufacturer. I won’t name them here because I haven’t called them yet.

    Monday the pharmacist is going to try and figure out if there is a generic or even brand name of the medication that is gluten free. If so, then I’ll get that. If not, it’s back to the cardiologist for a different med.

    Just got this updated link: https://www.govtrack.us/congress/bills/114/hr3648 Not liking the note about 0% chance of it being enacted 🙁

  • Reflections and looking ever forward

    It is that time of year again when the blogosphere is full of resolutions. I prefer to look at goals for the new year rather that resolutions. To me a resolution feels more like a punishment for something that I have done wrong, rather than a target for something I want to do right.

    At the end of last year, I celebrated the end of active treatment. On January 2nd, I walked 3.2 km – I’m actually really impressed at to how quickly I got back into walking. December 18-22 I needed help just getting out of bed, never mind making my way to the toilet. I read my previous posts – my optimism about my drains coming out – the support of an amazing loving husband – and my first cup of coffee! Man has 2015 been a much harder year than I ever anticipated. But alas, I had my successes – cycling up Mount Hamilton and walking 32.5 miles in two days.

    So what are my goals for this year? I’m a little hesitant to state them. My first is to get back on skis. I’m going to be trying it out this week at Epic Experience. I so hope it works out. I really would love to ski again. I miss the smell of snow.

    I also want to get back on my bike. As much as I enjoy hiking in the mountains, I also really enjoy going for long bike rides.

    I don’t have any specific stretch goals planned. Perhaps my stretch goal would be to finish my PhD! I’m going back to school officially in January. I’m already teaching part time at two universities – which is about all I can handle while doing my PhD research.

    When I get back from Colorado, I will start new hormone therapy. Crossing my fingers that it doesn’t have any negative side effects. I want to get as much as my health back as I can – but also I need to learn to accept that I won’t get it all back. I won’t be that person I was after riding my bike across Canada in 2008-9. In some ways I’m a stronger person, but in others I am so much weaker.

    And with that note, I must get packing – my flight leaves in a few hours. I’m so excited and yet a little frightened about going to Colorado. I’m travelling on my own (not a huge deal really). I am mostly anxious about food – but I need to learn to let go of that. Perhaps that is my stretch goal for 2016 – to learn to let go of my need to control my every meal.

    Celiac disease has just fed my compulsion to need to control my meals – it gives me an excuse to stress over it. However, I need to learn to let go a little. I need to learn to trust that I won’t starve (I always carry snacks to ensure that doesn’t happen). I need to learn to let it be OK to not know exactly what my next meal will be. Yup, as I write this it sounds more and more like this area of control is something that I need to let go of. So, perhaps that is my stretch goal for 2016 – to let go of some control/anxiety over my next meal.

  • An unexpected trip to Vegas #celiac

    We had not planned on spending a day and night in Las Vegas – but we ended up there. The alternator in our rental RV decided it didn’t want to work anymore. We managed to get to Pahrump Navada to get the problem diagnosed (a warning light went on just as we were leaving Death Valley). Fortunately, I had the foresight to suggest that we get it fixed in Las Vegas, that way we could make the most of our unexpected detour and spend the day exploring Vegas. I later learned that the thing Pahrump is most famous for is legalized prostitution. So I was very glad that we didn’t spend any more time there then we needed to!

    One of the challenges with being without the RV is that I’m not yet that good at figuring out how to eat out Gluten-free. I really didn’t want to get sick! Fortunately, a quick Google Search gave me the link to Gluten Free Las Vegas – a great website with a list of recommended restaurants. I even got to eat at a couple of restaurants who’s owners were on Top Chef Masters (Spago by Wolfgang Puck & Border Grill). The foodie in me was a little underwhelmed by our meals. We found them to generally be overpriced and mediocre. However, I’m very happy to report that I did not get sick. In each of our three meals (buffet lunch, nice dinner, and then nice lunch the next day), we ate way too much. We both were glad to hear the that the RV was fixed, so that we could get back on the road.

     

  • How to feed a loved one … #celiac

    Your friends or family invite you over for a holiday meal. They want to feed you. They mean well. However, as someone with celiac disease, this can be very difficult to navigate. I don’t want to offend my friends, but I also do not want to get sick.  So I asked the celiac Facebook group for some tips to help friends and loved ones cook meals that are safe for those with celiac disease. If you have any other tips and tricks, please leave a comment.

    First I want to highlight that celiac is not an allergy. Exposure to as little as 1/8 or 1/64 of a teaspoon of flour can make us sick. We don’t all get sick immediately. Sometimes it will take a day or two before the onset of symptoms. Then we need to mentally go back over the last few days and figure out what food made us sick, so that we don’t accidentally expose ourselves again.

    Here are some tips and tricks for preparing meals that are safe for those with celiac.

    General tips

    Gluten is in anything that contains wheat, rye, or barley. Other grains that contain gluten include triticale and spelt. Malt also contains gluten. You must read the labels of everything you include in what you cook, looking out for any ingredient derived from wheat, rye, or barley.

    The following items must be certified gluten free. If they are not, the risk of them containing hidden gluten it too high, such that they are likely to make someone with celiac sick:

    • Oats (e.g. oatmeal)
    • Soya sauce
    • Malt (it is a barley derivative, e.g. malt vinegar)
    • Soup bases (e.g. bullion cubes, canned broth, etc)
    • Salad dressings (easiest thing to do is get plain olive oil and balsamic or red-wine vinegar)
    • Spice / seasoning blends (pure herbs and spices are OK, but blends often have gluten containing fillers that are not necessarily labelled)
    • Pasta sauces (pre-made mixes often contain gluten as thickening agent)
    • Deli meats (anything cut to order in the deli can be cross contaminated)
    • Anything fried in the same oil as gluten containing ingredients (e.g. french fries that are fried in the same oil as onion rings)
    • Any food purchased in bulk. Unfortunately bulk bins risk cross contamination, regardless of what the food is. They are not controlled. All it takes is someone using the same gloves to refill the wheat flour and then refilling anything else.

    Avoid cross contamination. If you are cooking in a kitchen that is also handling gluten containing ingredients, you need to be diligent to avoid cross contamination. An 1/8 or 1/64 of a teaspoon is only a crumb or two. Some tips to avoid cross contamination:

    • Don’t use wooden spoons or wooden cutting boards. They can contain gluten in the cracks and cannot be adequately cleaned.
    • Use clean knives, serving spoons, and utensils when handling gluten free foods.
    • Line your pans with aluminum foil or parchment paper. This helps to prevent cross-contamination if the pans are not absolutely cleaned.
    • Put out a separate butter dish for your gluten-free guest that is not shared.
    • Put aside an un-sauced piece of protein for your GF guest. You can buy GF gravy mixes at the grocery store, which can be made up in a clean pan for your GF guest.

    Keep it simple. The simpler the meals is (that is the less ingredients), the more likely it is to be safe. Put sauces on the side rather than directly in the meal.

    Snack ideas

    • Plain popcorn
    • Potato chips that are certified GF (unfortunately most potato chips contain gluten)
    • Kind bars (they make a variety of different types of bars that are all GF)
    • Cheese and crackers
    • Certified GF nutbars

    Breakfast ideas

    Be aware that many people will celiac need a high protein diet to help their stomachs heal. This is especially the case after gluten exposure. Fresh fruit and cereal alone often do not provide enough protein.

    • Hard-boiled eggs (if your guests are staying with you, put a few hard boiled eggs in the fridge for them. They make great high protein snacks).
    • Certified gluten free oatmeal packets
    • Certified gluten free breakfast cereal (avoid Cheerios as they are not adequately tested at this time)
    • Cheese & GF crackers (note that seed-based and sweet-potato-based crackers are so much better tasting than the cardboard GF crackers that try to replicate table crackers).
    • GF nuts (note that nuts should certified GF)
    • Fresh fruit

    Lunch ideas

    I’m still challenged with lunch. Sandwiches are a challenge because any deli meats that are not prepackaged and labelled as gluten-free are not safe. Gluten-free bread alternatives are often pretty awful.

    • GF soup (must be certified GF or made with certified GF ingredients – note that stock made from a gluten stuffed chicken/turkey is not GF)
    • Bean salad over a bed of lettuce
    • Cheese and crackers
    • Fresh fruit

    Dinner ideas

    Most meals can be made gluten free. If this isn’t an option, then purchasing a few gluten-free frozen dinners is always an option (e.g. if you are making lasagna, then buy a frozen GF lasagna for your celiac guest).

    • GF pasta – make sure you follow the instructions on the packaging. GF pasta is good when cooked exactly as instructed. If overcooked it disintegrates).
    • Potatoes, rice, and quinoa are gluten-free
    • Plain meat and veggies are GF
    • Put aside an un-sauced piece of protein for your GF guest. You can buy GF gravy mixes at the grocery store, which can be made up in a clean pan for your GF guest.

    Dessert ideas

    Note that if you make GF desserts and then put them on a buffet style table with non-GF desserts, the likelihood of cross-contamination it huge. People do not understand that they cannot use the same serving utensil on both desserts. It is better to set aside an assortment of the GF desserts before placing them on a shared buffet table.

    • Look for packaged GF desserts in the grocery store. I particularly like macaroons.
    • Whole Foods makes GF Christmas cookies in a dedicated GF facility and packages them in plastic so they are not cross-contaminated. These make great GF desserts.
    • Macaroons
    • Flourless chocolate cake
    • Mixed fruit (although truth be told, we get mixed fruit at every event we attend so if you want to do something special, look for a GF bakery) – note that items made in a non-dedicated GF facility are not typically considered safe. Items that are made in a GF facility and sold in bulk are also not safe unless they are packaged in a manner that prevents cross-contamination.

    That’s all I can think of for now. If you have any good tips, please leave a comment.

  • Cleaning out Mom’s kitchen (gluten-free in Canada)

    Yesterday we (hubby and I) helped mom clean out her kitchen. The goal was to make it clear what was gluten free and what wasn’t. Hubby did most of the hard work, as I didn’t want to be too close to the open flour and worried of cross contamination – plus, he is just really good at sorting through stuff and separating out stuff to be kept and stuff to be tossed (at least when it isn’t our stuff – it is a lot easier when someone who isn’t attached to the stuff helps with the sorting process).

    I want to note that my mom lives in Canada. Food manufacturers are different in Canada and the US – so most of the links in this post will apply to those living in Canada.

    My job was to look things up and find out if they were gluten free or not. There were some real surprises in the process. Chicken stock is a real problem. Barley is often used in the making the stock. The real surprise to me was dates. I love dates. I had no idea that wheat flour was often used as an adjuvant filler when hand pollenating dates.

    Fruit set resulting from the use of mechanical pollination is usually poorer than that following hand pollination, but fruit quality and yields are found to be equal as a result of decreased thinning of the mechanically pollinated inflorescences. Furthermore, it is worth mentioning that mechanical pollination requires approximately 2 or 3 times more pollen than manual pollination. To overcome this problem, date growers are mixing the pollen with adjuvants, also called fillers, such as talc, bleached wheat flour, walnut-hull dust with a ratio of pollen/filler 1:9 or 1:10. (Zaid & de Wet, n.d.).

    I did, however, find that those of us in the US can get gluten-free dates from Nuts.com. When I get home I’m going to have to check all the dates I have to see if they contain gluten. I had no idea on this one!

    I also got to practice looking things up on the Internet. When presented with a can of something, I search for it using the string “Is gluten free?” or “does contain gluten?”. I found that many of the manufactures of canned goods have websites that list which of their goods are gluten free. Unfortunately, store branded canned goods often did not have websites that indicated whether items were gluten free. Instead, store brands opted to sell their premium “gluten-free” labelled versions of products. At least that seems to be what the website indicated.

    I wanted to make a call out to manufacturers, who are making this process a lot easier. Kraft is committed to labelling any ingredient that may contain gluten. The challenge with the announcement is that it is dated 2015. They don’t say when they started (or will start) with the gluten labelling. Whether this was done for altruistic or regularly reasons, I applaud them for making a statement clearly in an announcement that can be easily found by a Google search. In many cases, it was difficult to find what was and was not gluten-free. When given that option, I had to assume it was not safe to eat.

    Other useful links to Gluten-free product lists include:

    When I have a product that I like and it is unclear (e.g. Better than Bouillon), I use twitter to ask the manufacturer directly. Unfortunately, a bunch of their products do contain gluten (soup bases are always a challenge). Using twitter we can usually get an answer within an hour or two. The other option is to phone. I’ll have to give that a try too.

    The process isn’t useful when you are actually at the grocery store, as it takes too long. It is useful when you have favourite products or a new product comes out that you want to try and you want to see if it is OK to eat. It will be nice when labelling gets a little better, and gluten is clearly marked on all products! Personally, I like the practice that is done in the UK where allergens are listed in bold, making it a lot easier to identify safe foods.

  • The Celiac Project – and antibodies

    On the plane yesterday I watched The Celiac Project – a documentary about celiac disease. It was one of the things that arrived in my care package from the University of Chicago Celiac Disease Center.

    There were a couple of key learnings for me in the video. The first was to really internalize what it meant to have an auto-immune disease. It isn’t so much the gluten that is the problem – it can cause some short term discomfort – rather it is the anti-bodies that the body produces in response to the gluten. This is why it is an auto-immune disease and not an allergy. The body produces antibody that in turn make you sick. These anti-bodies are the source of long term health problems (I need to do more official research on these long-term problems). Some of the long term problems include: osteoporosis, stomach cancer, lymphoma, other autoimmune diseases).

    This is why “cheating” or eating gluten occasionally is a problem. It can take months (over a year) for your antibodies to drop. Eating gluten weekly means that your antibodies never get a chance to go down. As per my last post, it only takes 1/8 of a tea spoon of flour to feed the antibodies. The Anti-tissue Transglutaminase Antibody; tTG; tTGA blood test is used to first screen for celiac disease (it is a simple blood test) and then again to monitor adherence to a gluten free diet.

    I hate the word adherence or compliance, as in both cases it sounds like the patient is intentionally doing something wrong. In some cases, that is the truth. They are cheating by intentionally ingesting gluten now and then (take a celiac holiday). But in other cases, they are getting gluten in their diets accidentally. They don’t know the source of gluten.

    Another interesting comment in the video was that a “gluten free diet wasn’t healthy for those without celiac”. This is an interesting statement. In part this is because a lot of gluten-free alternatives are loaded with sugar and fat. But if you are eating mostly naturally gluten free meals, than I do not understand the comment about the items being unhealthy. It is an area where I struggle – what does health mean for me? How is my healthy meal different form a healthy meal for my husband who does not have celiac disease?

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