BC Becky

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

Category: Celiac

  • A little gluten won’t hurt will it?

    Research shows that anyone with celiac disease will have a reaction to ingestion of gluten when it reaches just 100 mg per day. Some people have been shown to react with as little as 10mg per day. In either case, we are talking about a very small amount: the equivalent of 1/8 to 1/64 of a teaspoon of flour.

    There are about 600 mg of flour in 1/8 teaspoon and in it there are about 80mg of gluten. Thus, 10 mg of gluten is just 1/64 of a teaspoon. Conversely, if a gluten-free product measures to 20 ppm per serving it would require ingesting of more than two pounds of that product in one day. (page 122)

    I knew that cross contamination was a problem, but I didn’t really understand the scope of it. I had heard that working in a bakery that handles flour was not recommended for those with celiac disease, as you are likely to inhale too much flour. 1/8 of a teaspoon is a crazy small amount.

    I’m also learning that when I eat out I need to be more specific. I need to start validating that things to do not contain any wheat, rye, or barley derivatives. I need to validate that kitchen processes don’t cross contaminate. I need to validate that sauces to not contain soya sauce, unless that soya sauce happens to be gluten free.

    Cross-contamination occurs in two primary instances and should be considered at any restaurant. One may occur when a meal is prepared in the same frying oil as other foods containing possible allergens. The second may occur when food particles are transferred from one food to another by using the same knife, cutting board, pan, grill or other utensils without washing the surfaces or tools in between uses. (page 179).

    I haven’t yet figured out the right words to use to explain this in a restaurant context. I always tell the waiter/waitress that I have celiac and that the food must be absolutely gluten free. I try to ensure that they know that it cannot be cross contaminated. When I’m eating at a local place, I can emphasize that if the food makes me sick I will not be a return customer – this doesn’t carry as much weight when I travel.

    I am travelling next week and I am nervous. I’m a little afraid that somewhere along my travels I’ll meet with cross-contamination (as we call it in the celiac world – being glutened).

    A friend asked, what happens when I accidentally ingest gluten? Unfortunately, I don’t have an immediate response – so I don’t know to stop eating it when it is happening. I also am never 100% certain where I got the cross contamination. I usually get hit with fatigue within an hour or two of exposure. The next day I get smelly stools and diarrhea. I get some swelling in my stomach, which causes my belly button to move to the right (in part this is because of my breast reconstruction surgery, which has created a lot of scar tissue in my stomach, making it swell on the left side only). Fortunately, I don’t get a lot of swelling. Then a day or two later I get a bout of dermatitis herpetiformis. May get really painful blisters on my hands that last a day or two then go away. I get rashes around some of my scar tissue that can take weeks to clear up (I’m still waiting on that, as I haven’t successfully gone two weeks without getting glutened).

    My physical symptoms are rather minor – such that they would not be enough of a deterrent to keep me from eating gluten occasionally – although, honestly, the dermatitis herpetiformis is almost bad enough to be a motivating factor in and of itself. The larger issue is the long-term impacts of gluten exposure. This is the part they don’t tell you much about in the books because they don’t want to scare you. With each incident of gluten exposure, the villi in my small intestine flatten. It can take months (or 1-2 years given my age) for them to heal. The villi are what your body needs to absorb nutrients. When they are flat, you can suffer from malnutrition – and all the long-term effects of systemic malnutrition apply. So, I may experience some temporary discomfort when expose, that isn’t my biggest worry. My bigger worry is with the long-term systemic damage to my body – a body that is already having to deal with long-term systemic impacts of chemotherapy.

    And so, with that, I ask that you appreciate that I’m not kidding or joking when I say that I need a gluten-free meal that is not cross-contaminated. I’m not trying to be a pain. I just want to have a nice meal that doesn’t make me sick 🙁

     

     

  • Does someone in your family have celiac?

    I’m reading the University of Chicago Celiac Disease Center’s free ebook Jump Start Your Gluten Free Diet: Living with Celiac/Coeliac Disease & Gluten Intolerance. As I read I find I’m a little frustrated. I wish someone had told me sooner that celiac disease was a genetic disease – that is, there is a gene mutation that makes you at increase risk of developing the disease at some point in your lifetime (HLA-DQ2 or HLA-DQ3). I get a little angry as to why not one of my health providers thought to tell me this – when I clearly indicate on my file (and mention regularly) that my father has celiac disease. But then I realize, his diagnosis was so long ago (20 or so years). They did not know then what they know now.

    HLA tests for the class II heterodimers DQ2 and DQ8 are commercially available. Note that while the DQ2 or DQ8 genotype is considered necessary to develop CD, the presence of either one does not confirm the diagnosis. Conversely, the absence of both HLA types has a negative predictive value of over 99% and virtually excludes the diagnosis of CD. (ref here)

    Very few health professionals actually know anything about celiac disease, and very few know that there is a simple genetic test to determine if you are predisposed to it. I found out that I had the genetic link only a few days after my dermatologist called to say “it looks like you might have a wheat allergy”. I had chosen to do the 23 and me genetic testing to see if there were any indicators (or counter-indicators) for me taking tamoxifen (relating to breast cancer treatment options). Since the tests take 5-6 weeks to return, I had almost forgotten about them. When the results did come back, one of the generic risk factors listed was for HLA-DQ2-Related, which indicated that I had the variant so I was at higher risk for developing celiac disease. Here is the thing, this is a simple spit in a tube, pay $200, and wait 6 week test. It is relatively inexpensive and not invasive. If you have a family member who has celiac disease, you should ask your doctor for this test (and if they say no, then 23 and me is an option!).

    If someone is positive for the gene, then they should be tested regularly (yearly) for the anti-bodies. This is because celiac disease can develop at any stage in ones life – it doesn’t not necessarily present immediately.

    The two key tests to run are the DGP-IgA and DGP-IgG. These antibodies are actually more promptly and fully responsive to a strict gluten-free diet, so their numbers should be as close to zero as possible, indicating a minimal antibody response to gluten. (page 25)

    Again, these are simple blood tests. Minimally invasive. These are also the tests that someone who does have celiac do on a regular basis to ensure they are maintaining a gluten-free diet. The reason to test regularly is to help confirm that you are gluten-free – which isn’t always obvious. If you think you are, but you are not, then you need to examine your diet (and medications and supplements) to see where you are getting the hidden source of gluten. If you are positive for the gene, then this test can help determine if you have developed celiac disease (assuming you are eating gluten).

    And so, with that, I am now telling all my close blood relatives. If you haven’t been tested for the celiac gene, you should ask your doctor for the test. You may not have celiac disease, but you may also have silent celiac (disease with no physical symptoms). Other illnesses and allergies may be celiac.

    On a side note, I’m happy to report that with a gluten-free diet, I can eat a lot of things that I thought I was allergic to. I’m able to eat tomatoes again, and quinoa, and kale. I’m also tolerating lactose (not needing to take pills to eat most dairy). So many yummy foods that I had to cut out of my diet because I thought they were the cause of various symptoms (mostly blisters and eczema, which turned out to be dermatitis herpetiformis – the skin infestation of celiac disease – and why it was my dermatologist that made the initial diagnosis).

  • Thank you University of Chicago Medicine (@CureCeliac)

    The kind folks at University of Chicago Medicine Celiac Disease Center have a program where they send out care packages to those of us who are recently diagnosed with celiac disease (requires formal diagnosis either with biopsy or via current protocols). The Gluten Free Care Package contains some food samples, a bunch of coupons, and some educational materials. Of particular interest to me is the documentary they included – I’m looking forward to finding a few spare minutes to watch it – The Celiac Project – For those who do not qualify for the free kit, it looks like you can get a pretty nice package with the video and home viewing kit for $24.95 here.

    2015-11-16 19.31.25

    Another resource that was mentioned in the Care Package letter was a free eBook titled “Jump Start Your Gluten-Free Diet“. The resource is kind of buried on the Cure Celiac Disease website, such that I had not seen it before. Honestly, the title didn’t inspire me to read it, but looking at it, it is so much more than a book about gluten-free diet. It talks about what celiac disease is, about how it is diagnosed,  about what follow-up treatment you need if you have celiac disease, as well as the tips for finding hidden sources of gluten, how to grocery shop, and how to eat out. It is pretty much the best owners manual I’ve seen for someone with Celiac Disease – and it is FREE. So, if you or a loved one has celiac disease, take a look at this book – don’t let the title fool you – “Jump Start Your Gluten-Free Diet“.

    The other thing I did, on a whim, was sign up for three months of the Gluten Free Box deliveries from Love With Food. Someone from one of the online support groups I’m a part of recommended it – and showed a picture of her box. It looked pretty cool. I thought I’d enjoy getting a package in the mail once a month – plus it gives me a chance to try out different brands of gluten free products that I otherwise may not have thought to try. I’ll share more with you once I get my first package. Note, the link from my page should get you a bonus 40% the first month if you choose to purchase a box.

     

  • Celiac … it’s a real thing

    I recently asked an online celiac support group what messages they would like to send to an audience of healthcare professionals. I was really surprised at one of the answers.

    People wanted a formal letter from their doctor to their family members explaining that celiac was a real thing, and that gluten cross contamination was a real problem. This is in part because I asked the question just before a major US holiday (Thanksgiving). There are a lot of people out there with celiac disease, who get really sick when they eat food that has been contaminated with even the smallest amount of gluten. I find it really sad when family members need a doctors note in order to believe the severity of the issue.

    Thanksgiving is a difficult holiday for those with celiac. It is also known as “turkey day” as turkey is the traditional meal. Unfortunately, turkey is usually prepared with stuffing that is made from bread. If the turkey is stuffed with bread, then there is no way to avoid cross contamination. Another problem is that many turkeys are injected with things like chicken stock to make them more flavorful and moist. Again, these injections can contain gluten, causing the entire bird to be cross contaminated. Thankgiving is a social time, a family time, but also a really stressful time for those with celiac who end up being unable to join in the feast – especially when family members don’t appreciate that this isn’t a dietary fad, it is a real disease with real long term impacts.

    I am also sad that there is very little information on celiac disease provided by healthcare providers. There is no one specialist that treats the disease – rather you have a smattering of specialists based upon the different manifestations of the disease – but typically you see a GI specialist for the gut manifestation and a dermatologist for the skin manifestation. That is, if you live someplace where you have access to specialists. Otherwise, you see your GP/PCP.

    But GPs don’t necessarily have all the information about celiac disease. This led to another area of concern. Some GPs just say “stop eating gluten” and leave it at that. They don’t talk about the potential long term impacts of “cheating”. They don’t talk about (or know about) what might happen if someone with celiac keeps eating gluten. They also don’t talk about how to stop eating gluten. I am trying, but this isn’t an easy process, and I’m highly educated. I have access to some of the best healthcare in the world. And yet, as I detox from my diagnosis (which requires eating gluten), I still find myself getting accidentally exposed.

    And so, this Thanksgiving if someone in your family says they have celiac disease, please be considerate. Think about providing some portion of the meal that is not cross contaminated, so that they too can safely partake in a Thanksgiving feast.

     

     

  • “Brain Fog”

    One of the side effects that some people face during and after chemotherapy (and cancer treatment even without chemotherapy) is called “chemo fog”. Heck AnneMarie Ciccarella used it as a witty title for her blog Chemobrain .. In the Fog.

    Turns out that brain fog is also a side effect that some celiacs get when they eat gluten. There are other chemotherapy side effects that also overlap – the other one that is of particular interest to me is peripheral neuropathy. But anyways, let’s get back to brain fog.

    During chemo, I watched a presentation on chemo brain given by Living Beyond Breast Cancer. So, I though it was interesting to read an article about gluten brain fog from the Celiac Disease Foundation. What has struck me is that post cases listed cytokines as a possible reason for the fog. The chemo brain presentation did a good job of explaining it – it suggested that similar to when you have the flu, your body releases lots of cytokines that could be the cause of the fogginess. Chemotherapy or other cancer treatments could cause an increase in cytokine activity. In those with celiac disease, gluten could cause an over production. In both cases, this can lead to a sense of a foggy brain.

    For me this is just one more reason to completely cut gluten out of my diet. I am still in the ‘detox’ phase from the endoscopy. I am, however, finding that my brain is doing pretty good most of the time. I’m not in the fog that I was in when I was taking tamoxifen, which is also good.

    I am intrigued by the overlap between chemotherapy side effects and untreated celiac side effects. I wonder if there is any association between chemotherapy induced peripheral neuropathy (CIPN) and untreated celiac disease? I wonder if my brain fog an neuropathy during my taxol chemo treatments might have been reduced had I known about the celiac and been observing a gluten free diet? Unfortunately, we cannot set back the calendar and try again. We will likely never know. Oh well.

  • DNR …

    DNR … it is a gift you give your loved ones, although it is a really difficult one to hear.

    My father is currently being evaluated to see if he qualifies for a double-lung transplant. His current lungs have been damaged by sarcoidosis – an auto-immune disease that was likely made worse by undiagnosed/untreated celiac disease.

    One of the questions that is asked when he checked into the hospital for transplant evaluation was regarding what measures they should take if something happens while he is in the hospital. At this point, he has scarring on more than 95% of his lungs. His heart is having trouble because he isn’t getting enough oxygen. He needs new lungs – or as a friend on Facebook pointed out, a set of recycled ones!

    So the logical side of me totally understands his decision to be listed as DNR (do not resuscitate). After going through chemotherapy and surgery for breast cancer, I truly do understand what it feels like to be so sick you wonder just how much more of this you can take. I can understand that it isn’t about giving up, rather, it is about understanding that if there is nothing that can be done then there is no point in prolonging suffering.

    It is a gift when a loved one makes this decision them self, so that you do not need to. But it sad to hear those words. It is scary to hear those words. And you hope and you pray that those words won’t need to be repeated. But it is still a gift.

  • Hidden sources of gluten

    On Tuesday we had our official meeting with the dietician about celiac disease. The meeting itself wasn’t particularly insightful – but we went into it well informed to begin with. I didn’t really know what to expect. The dietician was friendly and she did ask us some questions and told us a few things. In the end, we left with a three page handout with the most important information. In addition, now that we’ve met, I can email her with questions at any time.

    Looks at this experience as an educator, and reflect, I see that she did some things really well. Instead of giving us an handout with an overwhelming amount of information, she cut it down to a concise three page handout with the most important information. The information included some general guidelines for gluten free eating, a short list of what to eat, what to avoid, and hidden sources of gluten, some quick meal ideas, and three good websites for more information: Celiac Disease Foundation, Celiac Support Association, and Gluten Intolerance Group. I was aware of the first, but not the other two.

    I keep thinking that I should be getting more information. I keep thinking that this should be a bigger deal. But in reality, it is pretty simple. I have an auto immune disease that is completely treatable by maintaining a gluten free diet. The challenge is figuring out all the hidden sources of gluten.

    Last night I started going through my medications. I called my pharmacy to have them add “gluten” as an allergy. I was impressed when the Express Scripts pharmacist says that now that it is listed they will check all generics before sending them to me. For all the meds I already have, he gave me the phone numbers for the companies. This morning I started making calls. Sadly, the melatonin I use from Costco is not considered gluten free. Fortunately, I’ve found the CVS brand melatonin is. The meds I’ve checked so far are OK, but I have a few more companies to call. Hopefully by the end of Friday I will have checked all my meds.

    Ironically, Tuesday just before the going to see the dietician I got glutened (in the celiac community, the verb ‘to be glutened’ means to have accidentally ingested some form of gluten). I asked my husband to grab a smoothly for me at the office. He grabbed one for each of us and allowed me to choose. I looked at the ingredients – one had ‘wheat grass’ so opted to not have that one. Neither were labelled gluten free. I thought that I had chosen the safe one. It had fewer ingredients and none that looked suspicious to me. I learned from the dietician that one of the ‘hidden’ sources of gluten is in “artificial flavor” and “natural flavor”. Upon returning to the car we learned that “natural flavor” was an ingredient. I can confirm (based upon my bodies reaction) that indeed the smoothy was NOT gluten free. Live and learn.

    On the list of hidden sources of gluten that surprised me:

    • brewers yeast
    • triticale
    • malt

    I noticed the little gem about “artificial flavor” and “natural flavor” are not on the list from the dietician. She also promised a list of bad ingredient in medications and supplements – which I don’t have appear to have. Good that I can just send her a message on the my Health (secure email) system.

    In addition, the dietician mentioned that “starch” when listed as an ingredient is suspect unless you know the source of the starch or the food item is listed as gluten-free. So, potato starch or corn starch are OK, but starch or vegetable starch is not. I’m also in the process of going through any powders that I consume – such as electrolyte drink. I’m going to have to change from my previous favorite to the Vega brand, which is labeled as gluten free.

    NaBloPoMo November 2015

  • Gluten free medications

    You would think that given the prevalence of celiac disease, and that it is a known allergen, that medications that contain gluten would need to somehow label that fact. You’d think. You’d be wrong.

    As far as I can tell, this is a problem in the US. I don’t think it is nearly the same problem in other countries where medications are better regulated. I find it interesting (and sad) that medications carry less regulation about labelling gluten than food does.

    This was written back in 2013, but as far as I’m able to tell, nothing has changed since then:

    To be certain a drug does not contain gluten patients with CD, non-celiac gluten sensitivities, or wheat allergies must make multiple phone calls, perform Internet searches, and/or have the pharmacist review the package insert with them. At least most of us are able to do those things. ~ Whitney Caudill, Huffington Post Blog

    The issue with prescription medications in the US is amplified by the fact that each generic version of a given medication can include different fillers (some of which may or may not contain gluten), and pharmacies can change which generic the stock at any given time. There is no direct way for anyone in the chain of custody of a prescription medication to guarantee that it does not contain gluten. Ugg.

    I’m not an American, but I live in the US. I get all my medical care in the US. This means that I need to deal with the issue of my medications possibly containing gluten.

    There is, however, legislation currently in the works to make testing for and labelling of gluten in medication mandatory.  The folks at the Celiac Disease Foundation (CDF) have endorsed the  “Gluten in Medicine Identification Act“. This article from CDF recently crossed my stream “CDF Joins with Representatives Tim Ryan and Nita Lowey in Introducing the Gluten in Medicine Disclosure Act of 2015“. I’m glad to see this is being re-introduced to congress, and I have some hope that it makes it through this time! The folks at CDF have created a nice form to help you send a letter to your representative to let them know that you support the “Gluten in Medicine Disclosure Act of 2015“. Please if you are an American, I ask that you support this important legislation.

    And now, as someone who is taking multiple medications as a result of breast cancer treatment and other health ailments, I must now go and look up who is manufacturing each of my medications, and then contact each of them, to ensure that the medications I currently take do not include gluten.

    Then I need to go look at all the supplements I take (not too many, but a few because celiac disease means that my body isn’t absorbing all nutrients properly), and validate that they do not contain gluten. Unfortunately, the supplement industry is even less regulated that either the food or drug industry. I came across this article, which talks about how 50% of the probiotics labelled as “gluten free” contained more gluten than was safe for someone with celiac disease. In some ways I’m not completely surprised. I’ve tried taking probiotic pills before and have found that they did nothing to my stomach (or made it worse). I now understand why that might be!

    To make my life a little easier, I’m going to buy my vitamins and supplements from the Celiac Disease Foundation’s Gluten-Free Marketplace. I’m going to trust that the things they have on their site are, indeed, gluten-free.

    CDF_BadgeFindMe_180x150px_c2

     

     

    NaBloPoMo November 2015

     

  • When can I stop poisoning myself? #celiac

    When can I stop poisoning myself? The short answer to that question is today! When I first tested positive for the anti-bodies (IgA Anti TTG) that indicated that a celiac diagnosis was “highly probable”, I did the research and decided to stop eating gluten. I had a two month wait to see the celiac specialist. I didn’t want to continue poisoning myself while I waited for that appointment.

    At the appointment (and I realize I haven’t blogged about it), I decided to do the endoscopy. This isn’t so much about getting an official diagnosis, but rather to get an assessment of the extent of the damage. The celiac doc did recommend that I eat a small amount of gluten in order to ensure that we do get a positive diagnosis.

    In addition to the endoscopy order, I also did a full micronutrient blood panel. They took eight vials of blood! The panel showed that my IgA Anti TTG “was positive for IgA antibody to tissue transglutaminase (TTG) at a high level. However, it represents a decrease when compared to the previous result and is consistent with adherence to a gluten-free diet.” This is good news. It means that my attempts at gluten free diet over the last two months have been mostly effective.

    The original booking for the endoscopy wasn’t until December 7th. When I tried eating gluten again (it was really difficult to get over the mental shift of being gluten free), I found that I felt terrible. My stomach hurt. I had cramps and diarrhea. I emailed the doctor and explained that I could not spend the next two months eating gluten and feelings like crap. I now have an appointment for the endoscopy on Wednesday (Nov 28). The timing isn’t ideal, but I will be glad to have it done.

    In preparation for the endoscopy, I’ve been eating a small amount of gluten. I’ve also been learning my bodies signals. I don’t often get an immediate response to gluten. I thought I was having some pain associated with my surgery reconstruction and nerve regrowth, that actually appears to be pain caused by some swelling in my stomach/intestines as it processes (or fails to process) gluten. The next day I get smelly and loose stools/diarrhea. Then comes the blisters (dermatitis herpetiformis) on my elbows, hands, and/or knees. The good news about this is that I can now identify when I have been exposed to gluten (the celiac community refers to this as being “glutened”). It means that when I’m back on a gluten free diet (starting tomorrow), I will know when I’ve accidentally been exposed, and I can then analyze the past 24-hours and find the source – like our favourite hemp protein powder which is very much NOT gluten free 🙁

    This process of going gluten free, then intentionally exposing myself and watching how my body reacts, has been useful. I am learning that many of my bodies quirks were caused by the gluten. I’m also learning that when I’m on a gluten free diet, I can eat a lot of things that I could not eat before. I’m happy to report that I can now eat tomatoes (I so missed them). I am also able to eat quinoa, although I’m cautious about it – at the moment I’m limiting my quinoa intake to things I prepare myself, so that I know it has been properly soaked. I don’t want to re-create the allergy I originally developed. Once I’ve been gluten free again for several months I’ll try bell peppers again.

    This is definitely a time of navigating the new me. I’m thankful that I enjoy cooking and baking. I’m thankful to have learned how to make my own chocolate from raw ingredients. It means that I don’t feel like I’m missing out. Instead, I am choosing to explore new tasty foods which are naturally gluten free.

     

  • You probably have #celiac but whatever …

    That is pretty much what I felt was the attitude of the first GI doc that I saw. I asked for an appointment to see this doc because I could see him sooner than the celiac specialist, but also because I wanted to get some information before going to see the specialist. I wanted to see what the diagnosis process was going to entail in the other system.

    The doctor seemed to know less about celiac then I did! I brought in my various test results. He didn’t seem to know what to make of the dermatitis herpetiformis results. He saw my Antibody blood test and said it was high. That I probably have celiac. That I should ‘look it up on the Internet’!

    I came prepared with questions. Mostly they went unanswered.

    I asked about a referral for a dietician/nutritionist for the gluten free diet. He said they only had dietician for diabetes and that I should just ‘Google ingredients’ to see if they had gluten.

    When I asked about what deficiencies I might have, he mentioned B12. I said I had some tests in March, so he looked it up and said my B12 was fine.

    When I mentioned that I’m worried about osteoporosis, he commented that I should probably take a calcium supplement.

    When I asked about the benefits of getting the biopsy diagnosis versus not, he pretty much said it made no difference.  What is worse is that when I mentioned acid reflux, which I’ve been treated for on and off for the last 20 years, he said that I needed an endoscopy to make sure I don’t have esophageal cancer.

    So, I left the office no further along in the diagnosis path. I left feeling like the GI doc knew less about the disease then I did. I have an endoscopy booked. He mentioned that I might want to eat gluten a day or two before the endoscopy. When I looked up the gluten challenge protocol, it says two weeks, not two days!

    When explaining the procedure, he mentioned being put to sleep for the 10 minute procedure. General anesthetic for 10 minutes seems like an extreme option. The way he described the procedure, I felt like I was being talked down too. Like it was nothing to be concerned about. Like the interruption in my life was not worth consideration.

    I’m going to cancel the endoscopy because I do not trust that it will be done right. I don’t want to have to repeat it because the wrong things were done. I’m just glad that I’m in a place where I can see a special specialist – that is a GI doc that specialized in celiac. I have a much better appreciation for why 80% of celiacs go undiagnosed. If the way this GI doc treated me is anything like the norm, then I can see why people run away after their first appointment. Disappointed and lacking support. This is not an appropriate way to treat someone who is newly diagnosed (or undiagnosed) with a serious disease.

    I’m not impressed!

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