Category: Celiac

I am far from an expert at going gluten free, but I have found a few tricks to help me say no to the things that would cause me harm. The first is that when I see something tempting that is made from wheat (e.g. donuts, cookies, brownies) I remind myself that for me wheat is poison. I can then think, what a shame that they ruined a perfectly good donut/cookie/brownie by poisoning it. It may sound a little crazy, but it makes it easy to say no thank-you.

The other trick that I have, is that when I’m good, I give myself permission to enjoy a really good gluten free treat. This is where my love of baking comes in handy. I have many great recipes. One of my favorites is for flourless chocolate cake – which is more like a chocolate torte. I make it in cupcake shells so it is just the right size for a single snack. When I’m good and I avoid all the wheat temptations, I give myself permission to not feel guilty about indulging in a gluten free treat. I’ve earned it.

I am also a big fan of eating foods that naturally don’t contain gluten. It means that I spend less time trying to “replace” the gluten in my diet. I opt for rice and potatoes instead of pasta. For the last 5 or so years, my husband and I have eaten very little bread, so it wasn’t a great loss for me. I still haven’t found the right cracker to eat with cheese (instead of baguette), but for the most part I’m doing a good job of making meals that are naturally gluten free. I find that an easier process than trying substitutes and being disappointed when they don’t live up to the thing they are trying to imitate.

My biggest challenges so far have been around eating while traveling and eating in social situations. I want to be able to just join that buffet line, but I know that I cannot. It is pretty much guaranteed that anything in a buffet is cross contaminated.

I am finding some things are easier. As I mentioned above, I’m doing a much better job of controlling myself. When my willpower would have otherwise given in, and I would have just had a cookie (or two or three), I’m now able to say no thank you. When entering a food court, I’m not longer struggling with how to find a ‘healthy’ meal, or turned off by all the unhealthy options. My choice is severely limited, so it becomes much easier to make the decision. I am no longer paralyzed by choice.

Now that I have a little more time (I hope anyways) before my next conference, I am going to spend a little time figuring out snacks that can be easily carried. I have a bunch of story bought stuff – some gluten free cookies because when cookies are being given out at the conference as an afternoon snack, I really want one – but I want to also have more healthy options. And frankly, store bought pre-packaged cookies taste like pre-packaged cookies. They are not nearly as good as something that I bake myself!

So that’s my little snippet of celiac wisdom for today … think of wheat as poison, and give yourself permission to enjoy gluten free treats!

I have tried to find a good way to describe the difference between celiac disease and a wheat allergy – but first I had to figure it out myself.

I knew that a wheat allergy is an allergy. Celiac is an auto-immune disease. The simplest way to explain it, is that when someone with a wheat allergy eats wheat, the body attacks the foreign substance – wheat – and reacts with inflammation. The bodies goal is to eject the thing in which it is allergic to. Celiac disease is quite different. What happens with celiac disease, is that when the body tries to digest gluten, it turns on itself and attacks the villa in the small intestine. So, rather than an allergic reaction where the body tries to eject the thing it is allergic to, the body turns on itself, causing serious internal harm.

I did find this great resource – http://gastro.ucla.edu/site.cfm?id=281 – scroll to the bottom for the chart.

One of the challenges with celiac is that you can be doing damage and not know about it. I don’t necessarily have clear symptoms when I eat wheat. It doesn’t feel like a wheat allergy. It doesn’t even feel like a gluten sensitivity (which is someone somewhat clouded in mystery – it is poorly understood, and some recent literature suggests that it might not actually be the gluten that people are sensitive to, rather a different substance in the wheat). In some cases, for me, it feels like nothing. In some cases, I get blisters. The problem is, even without symptoms, my body could be turning on itself, causing damage. I just don’t know.

I do know, that I was doing pretty well on a gluten free diet for the last three weeks. I had to eat a little gluten yesterday and today. It was actually really hard to figure out what to eat. I had conditioned myself so much that gluten is poison. I wanted to make sure that if I did eat gluten, that I made it count – I might as well eat something that I’m really missing, cause I won’t be eating gluten again anytime too soon. Today’s bit was just enough to hopefully have some new blisters, as I have a dermatologist appointment tomorrow, and if I have blisters, they can do the appropriate biopsy in order to officially diagnose dermatitis herpetiformis. This is just one more piece in the puzzle which I expect (I know) will lead to an official celiac diagnosis.

By default, my assumption about food has been that I can eat it. I would rarely check the full list of ingredients – with a few minor exceptions. This is, perhaps, one of those “lifestyle” changes that needs to be made with a celiac diagnosis.

Since I’ve been travelling in the UK this last week, I’ve learned to do the opposite. This became very clear during the lunches at both conferences. In both cases, the issue was that the meals were served buffet style. In both cases things were not labelled. Unfortunately, since gluten sneaks into a lot of things (e.g. an incredibly large variety of potato chips have gluten), the default assumption needs to be that the item includes gluten unless it is specifically labelled as gluten free.

I’ve found that when travelling, I’m relying a lot more on processed foods. If it comes sealed in a package that says “gluten free” then I know I can trust it. For the most part, I can trust homemade meals. However, restaurants pose a challenge. If they are good restaurants, then they understand – and things are free from contamination. However, if they are not accustomed to dietary requirements then there is much more risk of exposure.

My message to conference organizers is that if people are travelling from out of town to attend, and they declare a serious allergy, then you should make an effort to ensure they have food they can eat (and snacks). The first conference failed at lunch, but when I inquired about snacks someone went and got me something that I could eat (I’m eatin a lot of macaroons). The second conference didn’t do so well. Not only did I not get food for snacks, I also didn’t get lunch. There might have been something delivered that I could eat, but because nothing was labelled, I didn’t know. Everything was highly suspect (sandwiches were a definite no, soup could have noodles, thickener or barley, and chicken tenders might have wheat breadcrumbs or be fried in a frier that had traces of wheat in it).

When travelling, and especially when travelling internationally, this poses an extra challenge. I am still learning about what food I can and cannot eat. Labelling differs by country, which also makes it challenging. I’m still learning how to make adaptations – and how to effectively pack my own lunch when I’m on the road. I cannot simply just grab something at the corner store. Often I cannot even just grab something at the grocery store. I need to figure all this out. It is less challenging when I’m at home.

I am finding that I’m eating a lot more fruit. In part this is because whole fruit is something that often appears at the dessert table at buffets, and I can guarantee that it hasn’t been cross contaminated.

In Manchester, I found some good organic yogurt at one of the corner stores. I found that yogurt and fruit was a good lunch. Interestingly, I would not have found that before. Before, I would not have found it to be filling, but now I do. It is very interesting to see how my taste buds and the way my body feels is changing.

When I get home I’m going to have to explore yogurts. I’m going to have to see if I can find a brand that is organic, packs well, that I like, and that I can digest without the need for a lactose pill. I’m crossing my fingers that I can find this magic combination.

I also need to discuss with the GI doc blood tests for various nutritional deficiencies. I already know that I’m anemic (a common celiac side effect). I just don’t know what other nutritional deficiencies I have – so I don’t know what things I need to look for in my diet or what things I should be thinking about supplementing.

Another one of the “lifestyle” changes relates to how I cope with eating out – especially, I how I cope in social settings. It is one thing for me to research a restaurant and make a deliberate choice about where I get my dinner. It is a whole other thing when I’m visiting friends and we decide to go out to dinner, or when I’m staying with friends and we go out for a meal. It is a struggle to stay strong, and stick to my guns – to not cheat. Funny, but I am not tempted (at least not yet) to cheat on things that I used to like (e.g. chocolate fudge cake). I can usually convince myself that wheat is poison, so I can either forgo or choose differently. However, it is really hard to do this when I am part of a larger group (either in a professional setting or with a group of friends). I find myself thinking – It isn’t such a big deal, I could eat a little bit, a little won’t hurt me …

For some people, even a little is bad. For me, I don’t know yet. I don’t know how sensitive I’ll be after I’ve been off gluten for a longer period of time. But I also know that the longer term effects of celiac disease are not well known. I do know that the longer term effects CAN be a lot worse than just a little stomach upset … they can be severe (e.g. non-hodgkin lymphoma, brain damage). It isn’t just a temporary stomach ache with some bloating. Those would be the acute symptoms that are well known – it is the longer term ones that are much more scary, and also what makes me want to never cheat.

And so, the lifestyle change I need to make is that of changing my default setting. By default, I cannot eat a given food, especially a prepared meal. By default, I need to assume that it is poison for my body. So, if you are planning something, and someone with celiac is attending, please make an effort to label anything that is safe – because otherwise, we have to assume that it is not.

I received this email from my primary care team:

“Do please remain on a regular diet for now. Usually for a final diagnosis of celiac disease an endoscopy with biopsy is recommended.
The biopsy relays on the fact that the gluten disease causes inflammation in the intestinal wall which can be detected with the biopsy. If the diet is gluten free already often times this inflammation resolves and the biopsy comes back negative thus not providing a final diagnosis.”

This would all be fine and dandy if they got me in to see the GI specialist tomorrow and we planned to have the biopsy within a week. But that isn’t the case. To be fair, I don’t know yet when I will get an appointment through my primary care system. You see, I get my cancer care through a different system. In the cancer system (Stanford hospitals and clinics), where I went through the first two sets of screening (and was positive on both), can’t get me in until October 15. This is just the first consult. Who knows how long it will take to book the biopsy (actually, I should phone and ask that). I’ve also asked for an appointment through my primary care system (Palo Alto Medical Foundation or PAMF). If I can get in sooner, I will.

The reason this makes me angry, is that everything is pointing to a positive result. I have a family history. I have had two positive tests. There has been no worry of a false negative, because everything has been positive! So, instead of getting me into and through the system quickly, I end up having to wait an indeterminate amount of time. But to rub salt into the wound, I’m expected to eat the food that is making me sick while I wait. This protocol makes me angry. It pisses me off. If gluten is like poison in my body, why on earth would I knowingly continue to poison myself until the healthcare system danes to give appointment so that I can be formally diagnosed? – at which time all they will do is to tell me to stop poisoning myself and after a year validate that I’m complying!

The protocol could use a little less of the objectivist world view and remind itself that patients are human. This protocol is both archaic and example of how not to be patient centered. Perhaps, once patients have had positive blood tests, that clearly indicate that the next step is proceed to biopsy (there is a clear protocol here – http://www.mayomedicallaboratories.com/media/articles/algorithms/1242-celiac.pdf) , that they could prioritize getting said patients in for evaluation and biopsy quickly, while they are still sick, without asking them to intentionally make themselves sicker? I cannot even imagine how horrible this would be for parents of young children – knowing what is making their kids sick, but being told to keep feeding it to them for the sake of an official diagnosis.

Now, according to the latest from the folks at the University of Chicago, I would only need to go back on a small amount of gluten for two weeks before an endoscopy biopsy (see http://www.cureceliacdisease.org/archives/faq/what-is-a-gluten-challenge). So if my next appointment isn’t for 6-weeks, and it could be another 2-3 or more months before the biopsy is scheduled, then why would I continue to eat gluten while waiting for doctors appointments? I have already had a positive blood test, so that doesn’t need to be repeated.

And so, with that, I shall be non-compliant. That is, I’m going to go on a gluten free diet now. I’m going to stop poisoning myself now. I will give my body some time to heal while I wait for doctors appointments. I will cross my fingers that some of my aches and pains improve once the gluten has time to leave my system and my body has had a little time to heal itself. Once I actually see the doctor, we can then talk about next steps for a formal diagnosis.

The gluten free movement has proven to be a double-edged sword for those with celiac disease. You see, with more people aware of gluten, and more people eating gluten free, it means there is a larger market for gluten free products. Things with gluten are labelled – although, not everything that is gluten free is labeled as such. There is still a lot of learning that needs to happen in order to successfully eat a gluten free diet.

The double-edged sword is definitely seen when trying to find places to eat out. You will find lots of restaurants that have dishes that are labelled as gluten free. However, in many, if you read the fine print, you see words like “not appropriate for a celiac diet”.

Why is this? Because those with non-celiac gluten sensitivity (NCGS) are not allergic to gluten in the same way that someone with celiac is. People who are eating gluten free by choice can often tolerate small amounts of gluten in their diets. They do not need to be worried about cross contamination.

When a diet becomes a fad diet (and GF is definitely a fad diet) then some people do not take it seriously. This means that those who really are allergic can have their concerns dismissed. This is part of that double-edged sword.

The good news is that so many more people are aware of not just GF diets, but what celiac disease is. With more awareness comes more options. There are more products available and more restaurants that pay attention. The challenge is figuring out which ones are paying lip service to GF in order to gain access to the fad dieters, versus those that really do understand gluten allergies and appreciate the need to avoid cross contamination.

As always, I need to start this post with it’s not cancer! Although I never thought it was (this time), so I was a bit taken aback by this one. I’m also finding it interesting to observe my reactions – both emotionally and physically.

Several years ago (well before cancer) I noticed that I was getting blisters on my hands. These blisters would come up from inside – they were not pressure blisters. My family doc in Ottawa told me they were just pressure blisters, I knew they were not. At one point, after Scott had moved to California, I came to associate the blisters with eating kale. Interestingly, I have no idea now if they are actually kale related … so maybe I can eat kale? I’ll have to try it out again.

My dermatologists (plural, cause I see more than one) recommended that when I have active blisters, I should come in and have one of them biopsied. After several attempts – usually the blisters would pop or go away before I could manage an appointment – I managed to both have blisters and have a dermatologist appointment. My dermatologist took one look, and said what he thought it was, gave me some meds to treat it, but we also decided to do a biopsy. I wanted to be certain what I was dealing with.

That was almost two weeks ago. The first sample came back negative. Then the full biopsy came back, again negative for what they thought, but instead it came back with “The histologic findings raise the possibility of an autoimmune bullous disease, including dermatitis herpetiformis or linear IgA bullous dermatosis.”  Fortunately, I didn’t Google any of that. The dermatologist phoned me and talked to me before releasing the test results so I knew what it meant. He commented that it wasn’t what he thought, but that it did show signs of a possible gluten allergy. My response involved a four letter word that shouldn’t be repeated in public. You see, my father has celiac disease. So I have an idea what it means.

The next step was to do a blood test. This one came back even more certain “This specimen was positive for IgA antibody to tissue transglutaminase (TTG) at a high level. Anti-TTG is a specific marker of celiac disease and this result makes this diagnosis very likely.” According to the lab test website (https://labtestsonline.org/understanding/analytes/celiac-disease/tab/test/), a positive test is presumptive of celiac disease. I was hesitant to believe the blood test, as my many year old research indicated that it is diagnosed with a biopsy of the small intestine. It turns out this latest blood test was only added to the protocol in 2013 – so my older research isn’t relevant. You still need to do the biopsy to have a definitive diagnosis. It turns out that the current blood test, although not a definitive diagnosis, is a pretty clear indicator (if positive – the problem with it is the high level of false negative). The Mayo Clinic has a nice image that details the Steps for Diagnosis Celiac Disease. You’ll note that my next step is a biopsy.

I did, however, read that if I have dermatitis herpetiformis (these would be the blisters on my hands, and possibly the ones on my elbows), then a skin biopsy can be used as a diagnostic measure. If I’m reading things right, this might mean that I can be diagnosed with a skin biopsy rather then needing the small intestine one.

Now I am in wait mode. I have been referred to a gastroenterologist (GI doc). I’ve been looking various things up on the Internet. The more I read the angrier I get. I guess I’ve moved through the initial phase of denial (that was me after the first test result, until I received the second test result).

Unlike cancer, this process does not appear to move quickly. At the moment, the soonest appointment I can get with a celiac specialist is mid-October – but I’m hoping to find a way to move that up a bit. I need to get a better grasp on how this might affect the hormone therapy that I need in order to reduce my risk of breast cancer recurrence.

If it ain’t one thing, it’s another …

But I’m trying really hard to be strong and healthy … crossing my fingers that removing gluten from my diet makes me stronger and healthier!