Celiac Disease and Diabetes

welcome everyone uh thank you for being here my name is brooks roach i'm a diabetes education specialist with diabetes canada and uh i'd like to welcome you and begin by acknowledging that i am joining this webinar from traditional and unseated territory of the migmat people in prince edward island or ethiques so wherever you are joining or watching from i invite you to express gratitude and reflect on the land on which we live and acknowledge the past inhabitants of these indigenous lands i am so personally and professionally excited to welcome you to this really exciting collaboration between diabetes canada and the canadian celiac association and i'd like to sincerely welcome our guests from the cca who i will head over to youtube hi brox thanks so much for having us today my name is nicole byrum i'm a dietitian and health promotions manager with the canadian celiac association and i'm coming to you today from rainy and wet on north vancouver awesome and my name is emily and i'm the dietetic and intern at the canadian celiac association i'm a graduate student at the university of guelph currently completing a master of applied nutrition on route to becoming a registered dietitian and today i am joined joining you from guelph ontario okay thank you so much for being here and i will happily head it over to nicole to walk us through some information and answer some some key questions around the connection between celiac disease and type 1 diabetes okay well thank you so much today for this opportunity this is such a um a learning experience i think for all of us so i'm going to share my screen now and just go through my uh presentation that we've got prepared for you so bear with me for two secs as i share the screen and get it just set up here brooks you need to give me permission to share my screen okay bear with us everyone it is not a webinar without some sort of zoom malfunction life living uh living life now in the postpartum world where everything is on on computers we go thank you so much all right here we go everybody see that okay you can see that okay yeah yeah you're good okay so as mentioned we are uh my name is nicole byram and i'm from the canadian celiac association i'm gonna um just okay so what is celiac disease so celiac disease is a common disorder that is estimated to affect about one percent of the population it is a condition in which the absorptive surface of the small intestine is damaged by a substance called gluten gluten is a group of proteins presented present in wheat barley and rye and their cross-fed grains celiac disease is an autoimmune disease and not a food allergy as many may think here you can see the visual representation of villis atrophy that occurs in those with undiagnosed or newly diagnosed celiac disease this slide demonstrates the effects of damage over time on the intestinal lining you can see how the absorptive surface becomes flattened and have less surface area available to absorb nutrients here you see at zero we have a normal intestinal lining and with each new phase comes further mucosal damage hindering nutrient absorption as the stages progress and damage continues as mentioned in the previous slide celiac disease is not an autoimmune disease therefore requiring gluten-free foods is not a choice this is not a fad diet and people are not choosing to be on this celiac disease is a serious lifelong commitment with serious health complications associated with the consumption of gluten damage leads to a variety of symptoms and can result in the inability of the body to absorb protein fat carbohydrate vitamins and minerals as i mentioned celiac disease is an autoimmune disease as such celiac disease can run in families for example my family in my family my mother and daughter both have celiac disease and in addition my husband his sister and his niece have all been diagnosed we are living proof of the genetic predisposition of celiac disease if you have a first degree relative with celiac disease you should be screened for people with no family members with celiac disease the incidence of diagnosis is about 1 in 100 and for those with a first degree family member the risk increases to about one in ten i'm now going to introduce you to emily cuell a dietetic intern working with the cca emily is going to go over diagnosis and treatment of celiac disease with you now diagnosis of celiac disease happens in two steps the first step is screening screening for celiac disease occurs through a serological test otherwise known as a blood test this test will look for elevated levels of the iga tissue transglutaminase or ttg antibody it is important to remember that during screening individuals must be eating gluten if we have celiac disease gluten intake will trigger ttg antibodies and this will be visible in our test results the second step involves a small intestinal biopsy or possibly a skin biopsy in the case of dermatitis herpetiformis which is celiac disease of the skin a biopsy is performed by a gastroenterologist using a tool known as an endoscope your doctor will take samples using the endoscope to identify if there is damage to the small intestine this procedure takes around 30 minutes and is not painful a diagnosis of celiac disease must be confirmed by a biopsy unfortunately there is no cure for celiac disease treatment involves following a strict and lifelong gluten-free diet since this type of diet is restrictive it is important that individuals following a gluten-free diet receive nutrition education from a trusted professional registered dietitians who are trained in celiac disease can help individuals ensure they are meeting their nutritional needs while enjoying their meals and following a gluten-free smile while learning the ins and outs of a gluten-free diet can be challenging the canadian celiac association is here to help we are a trusted organization that provides canadians with an abundance of free and accessible resources on celiac disease the gluten-free diet and other dietary considerations it is estimated that approximately one percent of canadians have celiac disease this is close to 350 000 canadians however we suspect that this number is actually much higher why is this well approximately 2.2 to 5 million canadians are at risk of celiac disease or gluten-related disorders on top of this risk it takes an average of around 10 years to get diagnosed with celiac disease celiac disease is common all over the world and its prevalence is only growing in fact canada has had an increase of around 35 percent in celiac disease prevalence over the past decades which is the greatest increase recorded due to the higher risks of celiac disease in many populations and a lengthy diagnosis period it is estimated that 85 of canadians with celiac disease are undiagnosed this is a huge proportion of individuals who are suffering and potentially sustaining long-term damage to their health the best way to improve this number and advocate for your health is by simply getting tested for celiac disease okay thank you nicole ambly and i think now we're going to veer a little bit into the type 1 diabetes realm and what we'll hear about next is actually how these two are related but type 1 diabetes in essence is an autoimmune disease so once again the distinction here is is type 1 diabetes makes up about 10 of uh cases of diabetes so um the vast majority being type two and a small minority also being gestational diabetes but what we're talking about specifically is type one um so this is essentially where the immune system reacts against the beta cells of the pancreas which are they have the the intent of producing insulin uh insulin is a hormone as as many of our viewers know that it helps to control the level of glucose or sugar in the blood so if a person lives with type 1 diabetes like myself they need to inject or pump insulin subcutaneously to regulate their blood glucose and again as many of our viewers may know blood glucose is not just impacted by food it's a multitude of factors food exercise sleep stress uh sometimes it feels like the weather has an impact on it um and it's essentially this is you know a common myth that we actually encounter and this is again to the point of it being a really difficult to the point of celiac disease being a long-developing disease with a lot of complexity in it generally speaking type 1 diabetes does develop in childhood or adolescence but it can develop at any time because by its nature it is an autoimmune disorder um and there's a lot of misconception around this being somehow caused by an individual or curable or or easily treatable it's a again like celiac requires lifelong lifestyle interventions nicole mute alert thank you um i'd like to introduce you now to annie pettigrew annie is 16 years old and is a youth ambassador and national youth champion for the juvenile diabetes research foundation of canada annie has done a lot of work in advocacy and government relations for the jdrf annie is living with both celiac disease and type 1 diabetes we'd like to share her story with you now my name is ann pettigrew i was diagnosed with type 1 diabetes almost five years ago on january 31st 2017. when i was diagnosed with type 1 i remember my mother saying in an attempt to comfort me that at least i didn't have celiac i mean i had to have an insulin shot at every meal sure but at least i could eat what i wanted my diagnosis of type 1 definitely made me think about food a lot more and it made me more grateful than ever that i could choose what i wanted to eat then two years and six months later to the day i was diagnosed with celiac disease it was something i never saw coming something i never thought to worry about i didn't know that having type 1 had put me at higher risk for celiac but i had known for months before i was diagnosed that something was wrong my energy levels gradually declined to the point where i got breathless walking up the stairs everything was exhausting no amount of sleep made it better i became aware of how tired i was in april but i didn't get blood work done until july so i wasn't diagnosed until july 31st 2019 it felt like the end of everything my heart broke for everything i was losing my freedom my control my independence which i still have memorized because it was just that good six inch pizza sub toasted on italian red with lettuce and needing 1.5 units of insulin to cover it for me personally perfection and gone so much was gone and so quickly and then three weeks later my heart broke again for my little brother christopher who was also diagnosed with celiac i honestly cried harder for him than i did for myself together we said goodbye to the things we had to leave behind into a lot of traditions that had centered around that it was hard and it took time it's still taking time but two years later we're finding new traditions and we're looking forward and we're not taking a minute of it for granted because we know all too well how quickly something can disappear nobody in my family has type 1 except for me nobody else is celiac except for us we're the first and hopefully the only with our new traditions new lifestyle both being centered around our gluten-free diet we're thankful for how far things have come in terms of gluten-free options it comes so far from even just two years ago and new gluten-free alternatives are coming out all the time so we really do have a lot to look forward to the hardest part about managing the gluten-free diet for us personally is actually not the food itself but just making sure that there's no cross-contamination with gluten sometimes people just don't understand how serious it is with type one too and i didn't understand either before i was diagnosed it's why raising awareness for celiac and for type 1 is so important because it will only lead to increased understanding of both diseases so when people don't understand you have to be your own advocate you have to do what you know is best for you and that can be hard but you have to believe in your strength on the hardest days you have to believe in your strength if you think you might have celiac but you're scared to find out for sure or if you've just been diagnosed it feels like you've lost everything you have to believe in your strength and ability to get through it because you can and you will things will get better you are not alone as someone who has had two life-changing diagnoses i know how completely awful it feels to not be in control but i got it back and you will too with the support of friends family and other people in the celiac and diabetes communities we're all here and we all get it and the canadian celiac association and diabetes canada are here for us to keep your head up and stay strong thank you i want to thank annie for sharing her stories with our communities i know that each one of us watching today has our own story to share as well and as annie said i want to remind everybody that both the canadian celia association and diabetes canada are here to support you and help you in with any of those needs so please do reach out so what is the connection between celiac disease and type 1 diabetes why have we come together today to discuss these otherwise apparently different diseases or are they so different here are some facts both celiac disease and type 1 diabetes are autoimmune diseases with shared genetic components both celiac disease and type 1 diabetes worldwide incidents are increasing this suggests that not only do genetic factors play a role but also environmental factors the prevalence of celiac disease and those with type 1 diabetes is 5 to 7 times higher than the general population telling us that those diagnosed with type 1 diabetes are at increased risk for developing celiac disease diet plays a very important role in the management of both of these diseases research has shown us that people with type 1 diabetes when diagnosed with celiac disease are often asymptomatic or if symptoms do present they may be mild in addition some people with type 1 diabetes who have been undiagnosed with celiac disease will reference unexplained hypoglycemia as a primary symptom this slide demonstrates how celiac disease and type 1 are genetically predisposed but also have an environmental component this slide also shows that those living with type 1 diabetes are increased risk for developing celiac disease however the inverse relationship does not appear to be true those with existing celiac disease do not appear at this time to be at higher risk for developing type 1 diabetes an example of genetic links with both celiac disease and type 1 diabetes are shown here here we examine identical twins for identical twins where one has celiac disease the likelihood of the other to develop the disease is 75 for identical twins with type 1 diabetes the likelihood of developing type 1 is 42 percent when one identical twin presents with the disease this demonstrates that genetics play a large role in the development of both of these diseases on the next two slides i will run a few comparisons between type 1 diabetes and celiac disease here we have some interesting facts we know the causative agent for celiac disease this is gluten if you never introduce gluten into your diet you won't develop celiac disease we have not found one for type 1 diabetes however although viruses and environmental factors are suspected and are being examined as possible causative agents the clinical presentation of both diseases vary celiac disease symptoms may appear before histological damage has began whereas with type 1 diabetes symptoms appear later in the disease progression we know that there are overlapping genotypes in both of these diseases type 1 diabetes and celiac disease share some certain common symptoms this makes diagnosis difficult for some people with type 1 diabetes as symptoms overlap they can mask symptoms of celiac disease and make them appear silent these overlapping symptoms include weight loss fatigue reduced bone density and growth failure is it also it is also noted that for those with type 1 diabetes recurrent hypoglycemia is a common symptom of celiac disease i will note one difference diagnosis for celiac disease can be made at any age previously working in long-term care i saw people diagnosed into their 80s and as a mother who had a daughter diagnosed at five and a mother diagnosed in her late 50s and a husband diagnosed in his 40s i've certainly seen that this is true type 1 diabetes peak incidence is in early adolescence however as brook mentioned before it can be diagnosed at any time as well worldwide incidence for both diseases is approximately one percent so all of this being said what do we recommend it is suggested that for those living with type 1 diabetes of all ages who have symptoms suggestive of celiac disease be tested regardless of previous celiac disease screening remember that unexplained hypoglycemia may be a symptom of celiac disease an iga level is recommended as part of your blood work to rule out an iga deficiency now if you have an iga deficiency the results from your celiac screen can be a false negative so be sure to ask your doctor to add that in of note most pediatric type 1 diabetic patients who develop celiac disease sorry we'll do so within the first five years of diagnosis although celiac disease in adults is also well recognized so what's the bottom line get tested we suggest that you be tested for celiac disease when you're first diagnosed with type 1 diabetes and annually thereafter for the next four years here it gets a bit complicated after this time you can decrease your testing frequency to every two years and do this for the next six years we suggest you be tested at any point in time in your lifetime if you do present with with symptoms thank you so much to everybody for watching us today now we have time for some questions hey fantastic and thank you both um nicole and emily for for walking us through um i always find it fascinating to learn just how interconnected the web of let's call it comorbidies or or how in this case type 1 diabetes connects so closely with celiac disease um so we would like to open floor two questions so anyone who is watching on facebook please do feel free to submit your questions in the chat and we'll be happy to answer them and and one that um you know i'm curious about and i'm wondering if uh nicole and or emily you could provide some perspective on this and it's you know we we hear a lot about these sort of this is broadly what the symptoms look like or this is um you know when there's a lot of overlap for example in how symptoms show up or the fact that this celiac disease takes so long to to diagnose i'm curious in you know maybe nicole in your professional experience um what should folks look out for as just sort of personal this the feeling that they should look out for what are what are symptoms on in the at the real individual scale that folks might look out for as a warning sign or that you've seen at the point of diagnosis so it's interesting i mean there's i think there's noted to be about 300 symptoms of celiac disease and they're very very individual so for example just from my own personal family my daughter presented with severe skin rashes an upset tummy bloated heart upset tummy my husband who is a firefighter presented with dizziness and he was actually really concerned before he was diagnosed with celiac disease as to why he was having these dizzy spells and if it would affect his career so was quite happy uh when he was we found a cause of these dizzy spells that was his primary symptom my mom lost an incredible amount of weight before she was diagnosed she dropped about 20 pounds over a year and had no idea why so presentation of symptoms varies certainly the gi symptoms are the most obvious people who have upset stomachs bloating gas diarrhea constipation those ones are are kind of what we call the typical symptoms our more atic typical symptoms we see things like increased liver enzymes uh we see anemia we see osteoporosis osteopenia so bone loss um increased risk of bone fractures so young people in their 40s having frequent fractures sometimes that will be that will be seen in children we see delayed delayed growth we see delayed puberty we see um dental enamel defects so the the you know we've got something that um you know we call the celiac iceberg and if you think of an iceberg the tip of the iceberg is above the water and that is about the people who we have actually diagnosed the rest of them are under the water the ones above are with the more obvious symptoms and the ones the lower with the more atypical symptoms so the symptoms vary and if you do wonder about celiac disease we do have a symptom checker on our website and our website is www.celiac.ca and on there you can look up our symptom checker and go through that and see if maybe you should be tested yeah that's fantastic and i think um we do have a question uh so i'll pose it to you folks and it's can changes in the blood sugar um the can changes in blood sugar uh or trends be connected to this combination of celiac and type one so basically looking at you know you would mention this this prevalence of uh hypoglycemic events in in folks who live with celiac does this show up as sort of a change in trend or if folks are noticing something that feels dramatically off might that be uh a sign of comorbidity yeah so certainly um you know when we look at the science it's showing that unexplained hypoglycemic events are one of the fact are one of the risk factors for celiac disease so if you're finding that trend then that is a is a reason to go in and get screened we're not we have another opposite direction sorry okay um there's another question what percentage of people with type 1 diabetes have celiac disease and this is you know i can speak to this and it's that's because the it's about six times the the likelihood as we were discussing in preparing for this webinar nicole so overall in the population about one percent of the general population lives with either condition but if someone lives with type one about six percent of that population does live with celiac so it's it's about six times increased likelihood of developing celiac in the event that person lives with type one so uh short answer six percent of people with type 1 have celiac uh another question is wondering around is there an effect on carbohydrate absorption with celiac disease so certainly if you look at if you think back to the slides that we presented and i like to describe the gut you know in kind of layman's terms if you think of the gut as a shag carpet right and you've got all of these the villi and you've got a lot of absorptive surfaces so a healthy gut is like a really good shag carpet where there's lots of surface area for all of our nutrients to absorb over time those get dulled down and blunted and so what happens is we see lactose intolerance so one of the first symptoms because lactase lives at the end of the villi and so when those get dulled down often we see people have lactose intolerance so if you do find that's another symptom to look out for if you do find that you're becoming lactose intolerant that's something else that could be triggering possibly to go and get screened so over time these get blunted down and and eventually as you would have seen in slide four it becomes more more smooth because it's been really really glued down so everything is is being poorly absorbed at that point um so this could be um one of the reasons for that hypoglycemia because things are not getting absorbed in so yes that would be one of the concerns thank you and that is fascinating the the metaphor of the shag carpet is is a really helpful one i don't know if i've ever heard that from really good shag carpet before maybe i'll see more on but it might be and then and then the linoleum is stage four generally that's what i say it goes from shag carpet to linoleum so an equally sixties reference um there's someone wondering about long-term effects of of undiagnosed celiac in type 1. so wondering specifically if someone does live with type 1 diabetes and they haven't identified that they also lip celiac what can that lead to over the longer longer term yeah so the risks would be the same as for somebody uh i i'm going to just i can speak to the risks for somebody without um with long-term undiagnosed celiac disease i'm not sure i'm assuming that the relationship with type 1 would be the same for long-term effects so certainly we look at the big ones which are in our anemias so iron deficiency anemia so exhaustion fatigue osteoporosis is the other really big one and then certain types of cancers is the other one okay um we have someone who's wondering if celiac disease can contribute to sensitivities to other foods as i mentioned definitely we see it with lactose intolerance so for somebody with with celiac disease or early early early stage celiac disease or undiagnosed celiac disease we see dairy intolerance quite a bit because of that lactose and because that lactase enzyme which which digests lactose in dairy products is missing or or diminished we see an intolerance often to to dairy products um as for other food intolerances definitely across the board different people have different experiences but darius darion lactose is the big one for our our community but certainly individual people will have other experiences it it's really fascinating to explore i think just again just how far this reaches you know from one disease into into another how different conditions tend to overlap um i'm not seeing any more questions but before we wrap up i would just like to ask each of you if there's anything else that you'd really like to to share or leave viewers with you know if folks left with one one new piece of information what might it be um i think i would like to speak to vitamin sorry i'm trusting button here i'd like to speak to vitamin d just slightly so vitamin d deficiency is another one that we see in our community quite often during you know at diagnosis my daughter is was vitamin d deficient continues to be vitamin d deficient my husband was also noted to be vitamin d deficient now vitamin d deficiency across most canadians is common purely based on our latitude so we cannot absorb vitamin d from the sun between the months of october and may the angle of those sun's rays don't allow they're not strong enough to allow our body to convert vitamin d2 to its active form d3 which is what we need so we are often recommending and as a dietitian we consistently recommending to the to the canadian population to supplement with vitamin d so this rate this is true also for our celiac population who often go into this with a deficiency so what does that supplementation look like for adults it's about 800 to 1000 ius a day and for children it's more like 400 to 800 ius a day so between the months again of october and may we we suggest if you're not getting enough through the diet and it can be hard to get vitamin d in the diet um milk of course is fortified some orange juices are fortified you can get vitamin d and salmon bones emily what am i forgetting eggs have a little bit of vitamin d in them did you say margarine our drink can be fortified so often in in our foods we've we've developed fortifications specific to the canadian to canadian needs for example iodine is fortified into table salt for specific needs for thyroid um so vitamin d for our population is recommended to be to be if you're not getting enough in your dietary sources and you're not outside in the sun throughout may to october so when you think well our typical way of getting vitamin d is through sunshine we go outside um but quite often now we're covered in sunscreen we're wearing hats or we're working indoors so we're not getting what we used to get when we were outside people were more you know historically people were gathering food working in fields getting that sunshine because that vitamin d is a fat soluble vitamin so it would store through the winter whereas now we're not getting those stores built up through the summer and so we're suggesting more supplementation through the winter so something certainly for both of our communities to focus on and then the next thing of course would just be if you do have any questions to to connect with us check out our symptom checker if you're wondering if um your symptoms may be and you're still not sure give us a call connect with us and we're happy to help you and i'll just add to that um that there's a lot of misconceptions out there about a gluten free diet and nutrition in general so i would just take this opportunity to remind everyone that if you do have questions please trust reliable sources like the canadian celiac association like diabetes canada they are providing accurate evidence-based information and that's really really important so trust trust good sources and i will add to that um please do get diagnosed in the with the appropriate channels if you go on a gluten-free diet just to see how you feel that is not going to be an official diagnosis and the the risk of not getting an official diagnosis is when you are officially diagnosed with celiac disease in canada you can apply for tax credits so without that diagnosis you're not going to be eligible for those tax credits and the other piece of that is if there's a medication and one day there will be a medication available we hope to not necessarily treat you know long-term celiac disease but possibly treat accidental exposures to gluten so in our community if there's cross-contamination from a restaurant or if you accidentally um if they're if you're living in a shared kitchen at home and there's been a cross-contamination uh then and you can get very sick so my daughter in particular is an extremely sensitive celiac she will get very very sick from even the smallest cross-contamination so if the medication comes out one day you know it would be wonderful for her to be able to take something to help just ease that moment of time if you don't have that official diagnosis the wonder is whether you'll be eligible to receive that medication so please do go through the appropriate channels go to your doctor request the blood work before you stop eating gluten if you don't if you are eating gluten and you do the test it will be accurate if you are not eating gluten the test can be a false negative and we don't want you to get that wrong you we don't want you to get the wrong results so please do it through the appropriate way don't just try the diet to see how you're going to feel because if you feel a lot better and you have to reintroduce gluten the gluten challenge can be can be difficult for people yeah thank you folks and i i really appreciate the idea of you know um getting tested and doing so through reliable sources you know to do so formally if you want to call it that um and i would just offer a bit of advice who are specifically to our type one audience and that is you know it can be very overwhelming you know i'm thinking myself if there are as you mentioned nicole 300 potential symptoms it can often be well maybe it's you know who knows what i might be dealing with it may be just a an offhand bad day bad week bad month of live life with type 1 diabetes but if you do feel i would direct people as well to the symptom checker and we'll be sure to share that in the video description um you know check it out and and see if you if it merits getting getting checked out formally getting diagnosed because um as we can see it can really you know spare you a lot of longer-term difficulties because um it's it's incredibly hard to live with one chronic illness a little let alone two but it can be made easier if you actually seek help formally um so on that note of you know trusting veritable sources um diabetes canada as mentioned is doing a lot of work to support you this cause in particular you know we're super happy to be partnering with cca on this cause and if you do have uh questions that you feel are more specifically diabetes focused you can visit our website our social media and if you want to get specific advice for yourself or at least that get put more in in the right direction you can call our helpline at 1-800 banting or you can email info diabetes.ca for any questions you can also get in touch with cca of course and nicole can can point you in the right direction there yeah so if you'd like to reach out to the cca our email address is info celiac.ca our website as mentioned earlier is www.celiac.com and if you wanted to speak to one of our our team members on one on one so you can call our call our number and i actually return the phone call so if you have any questions specific for me as a registered dietitian please feel free to call 1-800-363-7296 extension224 and i'm happy to return your calls and we of course have twitter and instagram and our and a really active 16 thousand plus facebook group as well so please join that that was awesome it's not every day that you get someone as uh knowledgeable as nicole giving your personal uh extension so if you feel like making use of that i would recommend it um i know i personally learned a lot on this uh in this conversation i'm really really thankful to to both of you for being here and sharing what you know i i hope that's what it's been helpful for those watching as well so i want to give a sincere thank you nicole and emily for your time and all your input on this it's really important work that you're doing um and to everyone watching thank you as well so please feel free to contact either of us for any further information and to be connected to some of our experts so thank you very much and take care everyone wonderful thanks so much brooke for this brooks for this opportunity today thank you