Episode 8: Well Treated Celiac, But Still Got Thyroid Disease?  

Vanessa Weisbrod:

Welcome to Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. I’m Vanessa Weisbrod, the education director of the celiac program at Boston Children’s Hospital. And each month on the podcast, we will invite leading experts to dive into a condition related to celiac and look at how it impacts a patient family, the latest research and offers suggestions for health providers to manage these complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department for 0.5, AMA PRA category 1 credits for physicians. 0.5 contact hours for nurses. 0.5 ACE CE, continuing education credits for social workers, and 0.5 CEUs for registered dieticians. To claim your credits for listening to today’s episode, please visit DME.childrenshospital.org/raisingceliac. Let’s get started with this month’s Raising Celiac patient story.

Speaker 2:

Vincent was an extremely active child. He grew up just outside of Boston and his parents knew they were in for an athletic kid when he was scoring goals on the soccer field in his preschool league. At age 10, Vincent started playing on his town’s competitive travel soccer team, and during the winter months, he tore up the mountains in New England on a competitive ski racing team. He was also a good student and loved reading and writing stories about his adventures in sports. He was an all-around talented kid and extremely kind too.

Just after Vincent’s 15th birthday, he was at a ski race in Vermont. He was waiting on his turn to race through the slalom gates when he felt the strange wave come over him. His eyes felt blurry with small flashes of light and he felt tingling in his hands and cheeks. He clicked out of his skis and sat down on the snow opening his eyes sent a stabbing pain through his head, so he pulled down his goggles to block out the sun. Within a few minutes, he got what he describes as the “worst headache of his life.” Just moments later, his race number was called and it was his turn to fly down the icy mountain. He did what he thought was expected of him and started the race. He made it down safely, but was disappointed with his time. He found his mom and told her he had a headache. She took Vincent into the lodge, got him some water and Excedrin and told him to close his eyes. He did it as he was told, and about an hour later he was feeling much better. He grabbed his skis and headed back up the chairlift he finished second that day.

Vanessa Weisbrod:

A migraine is a headache that can affect both kids and adults and causes severe throbbing pain usually directed at one side of the head. Migraine headaches can be accompanied by nausea, vomiting, and a severe sensitivity to light and sound. Attacks can last for a few hours or up to several days at a time. In some cases, migraine pain can be so intense it interferes with daily life activities. In some patients with migraines, the experience a warning sign that the headache is coming called an aura. The aura may cause visual disturbances like blind spots, flashes of light or tingling in the extremities or face.

Speaker 2:

Vincent returned home from that weekend’s ski race hopeful that the headache he got was caused from not drinking enough water that morning, but much to his dismay the next day and several days after the headaches returned. Some days he got severely nauseous with the headaches and vomited. Other days he had no headaches at all or they were less painful or he felt better with Excedrin. This went on for months.

After several spells of headaches, Vincent’s mom made an appointment with the pediatrician to hopefully get some answers. The pediatrician’s first impression was that Vincent was running himself ragged with two competitive sports teams and a demanding course load at school. His sleep was irregular and he didn’t always eat consistently throughout the day. He recommended that Vincent’s scale back and build in more time for rest and proper hydration. If things didn’t get better in a few weeks, he would make a referral to a neurologist for additional testing.

Vanessa Weisbrod:

The exact cause of migraine headaches isn’t fully understood. Though it’s thought that genetics and environmental factors like diet appears to play a role. Triggers of migraines vary by individual, so keeping a headache diary can be a helpful way to identify a consistent trigger. Some common food triggers include aged cheeses, alcohol, coffee, nuts, pizza or tomato-based foods, smoked or dried fish, onions, nitrate containing meats like hotdogs, sausage, bacon and lunch meats, and mono sodium glutamate or MSG.

Speaker 2:

Vincent’s mom gave rest about two weeks before she went ahead and scheduled an appointment for her son to see a neurologist. She had recently seen a webinar where experts were discussing the link between celiac disease and headaches. She herself had been diagnosed with celiac disease years ago. Despite her gastroenterologist recommending the entire family get screened, she never made the time for them all to have blood work done. She had a sneaking suspicion that gluten might be causing these headaches. She also started a food diary to see if she could link his headaches to meals from that day. Unfortunately, keeping track of everything a teenage boy ate all day while out of the house was trickier than she had imagined.

Vanessa Weisbrod:

There’s an increased risk of experiencing headaches with celiac disease. One study found the prevalence of headaches in adults with celiac was 26% and in children with Celiac 18%. The good news was that the gluten-free diet appeared to help the headaches with up to 75% of adult patients reporting that their headaches improved when they followed the gluten-free diet. In children with celiac, headaches resolved in more than 70% of the study group.

Speaker 2:

Vincent’s neurologist did not agree with his mom’s suspicion about celiac disease. He started by ordering an MRI. It took several weeks to get the appointment and the scan came back noting some minor changes in white matter, but nothing significant. The neurologist recommended starting Vincent on a combination of medications to knock out the headaches, the blood pressuring lowering medication, verapamil and anti-seizure drug, Topamax. He also prescribed sumatriptan pills to help abort the headaches when they started. He told Vincent to expect the drugs to take several weeks to take effect and to just “Hang in there in the meantime.”

Vincent reliably took the medications, but quite quickly he started thinking that the medications were making him feel sicker than the headaches. He was severely constipated and felt as though he couldn’t find his words. Where he used to be sharp at school, he felt in a haze where he couldn’t remember what was coming next. This went on for about six months before mom called it quits and went back to the pediatrician. She demanded a blood test for celiac disease. It was positive.

One week later, he was in to see a gastroenterologist at the local children’s hospital and a biopsy confirmed the diagnosis. Within three months of starting a strict gluten-free diet, Vincent felt like a new person. He vividly remembers waking up one morning and feeling like the haze was gone and he was himself again. He had weaned off all the medications and was getting back to his normal life. While Vincent felt happy and relieved, mom felt angry. She had watched her son lose more than a year of his life, fall behind in school and need to pull back from the competitive sports he loved. She was mad at herself for not getting him tested for celiac disease sooner and frustrated that her concerns weren’t taken seriously In the beginning.

Vanessa Weisbrod:

The incidence of celiac diseases rising and as more patients are diagnosed, clinicians are seeing an increased rate of atypical presentations of this autoimmune disease. Less than half of patients experience the classic celiac symptoms like abdominal pain, chronic diarrhea, vomiting, or failure to thrive. Today our clinicians are seeing patients with celiac disease present with anemia or iron deficiency, constipation, epilepsy, headaches, neuropathy, and many other symptoms. To treat them effectively, they must have a close working relationship with colleagues across all medical disciplines.

Now let’s get back to Vincent. How could eating gluten cause such severe headaches? Once diagnosed on a gluten-free diet? Will a single gluten exposure lead to a headache attack? What other neurological issues are related to celiac disease and are they reversible? We’ll discuss this and more on today’s episode of Raising Celiac.

Today we talk about celiac disease and neurological issues with Dr. Samuel Frank, a neurologist at Beth Israel Deaconess Medical Center and Associate Professor of Neurology at Harvard Medical School. Dr. Frank is a member of the Harvard Medical School Celiac Research Program and specializes in treating patients with neurological conditions related to celiac disease. Welcome Dr. Frank to Raising Celiac.

Dr Samuel Frank:

Thank you. Thank you so much for having me. It’s a pleasure to be on.

Vanessa Weisbrod:

So can we start by talking about the different types of headaches and when to seek medical attention versus relying on over-the-counter medications?

Dr Samuel Frank:

Absolutely. Well, in full disclosure, I’m not a headache specialist. I am a neurologist. But in general, the types of headaches that we in groups classify, there’s migraine, there’s cluster, there’s tension, and then what we call secondary headaches. Secondary headaches are things caused by something else, like you need glasses and you’re not wearing them do you have something going on from a dental perspective that needs to be fixed or you have neck problems or sinus disease.

So usually people will try and address headaches themselves with over-the-counter medications, rest, making sure they’re drinking enough, having a little bit of caffeine, but not too much. So these are the types of things and when it becomes refractory or interferes with any of your functioning, when it’s severe, those are the times to seek help, certainly. But we always start with our primary care providers and if there are any focal neurologic findings, weakness anywhere, numbness or tingling, lopsidedness in terms of… Those are definitely times where you want to go more urgently to either urgent care, emergency department or seek neurologic care.

Vanessa Weisbrod:

So Vincent’s headache started amidst a very strenuous time in his life where he was competing at a high level in sports and academically. How does a neurologist determine the root cause of headaches in a patient like Vincent?

Dr Samuel Frank:

For all patients, we start off by getting their story, taking a history of what the event was and what’s the timeline. We also want to get certain details that may be clues in terms of what types of headaches they have and what may be exacerbating or [inaudible 00:10:43] factors. So for example, caffeine, if people are drinking a lot of caffeine, going through two bottles of two liter sodas a day… That’s not good for you in many ways, but it certainly can give you too much caffeine and trigger headaches. Sleep is a really important aspect when it comes to headaches too and family history, sometimes there’s a family history of very clear migraines and sometimes not. So we start off with that.

Usually with patients who have migraines or other types of headaches, we do some limited blood tests. That’s not what we rely on, but I always make sure that I’m checking a thyroid panel, usually iron studies and blood counts and a celiac panel, but I’m biased that way. And imaging people think that we can see what the problem is. When it comes to headaches, we typically cannot. Imaging is usually very normal and it’s indicated if there’s an abnormal neurological examination or if we suspect a secondary cause. If people have bad neck issues that is giving them a headache on the back and going up, we may image their neck for example. But in run-of-the-mill tension headache or migraine, we typically don’t need imaging. So that’s the overall pathway that we think about in terms of the evaluation of a headache.

Vanessa Weisbrod:

Can you explain why celiac disease could cause headaches?

Dr Samuel Frank:

I wish I could explain what causes most headaches, but I don’t think that we fully understand why that connection is there. There may be underlying medical issues, so for example, patients with thyroid issues, it’s more common in people with celiac and those can certainly contribute to headaches. There is a thought that general inflammation can do it. Micronutrient issues may trigger migraines. Migraines specifically, there’s this thought of involvement of the surface of the brain similar to seizures or epilepsy and so there could be some overlap there, but I think these are all speculation. I don’t think that we really know why people with celiac get migraines and I think often we don’t understand why people get headaches or migraines to begin with.

Vanessa Weisbrod:

So I know that you’re biased and you believe in testing, but for others, what would be a key indicator to test a patient with headaches for celiac disease?

Dr Samuel Frank:

Usually I will test all patients with a pretty classic migraine for celiac disease. Now, I think I am definitely in the minority of providers that do that for patients. I also use family history as a guide because most of the time true migraines actually run in families, and so you’ll get a history that my grandmother had migraines and my dad had migraines and now I have migraines. And so it’s really in every generation, it’s multiple. But if migraines don’t really run in the family, then that’s a clue that this may be another cause and my suspicion of something like celiac goes up. So specifically if there’s no family history of classic migraines, those are the patients that I will check.

Vanessa Weisbrod:

Can a headache be the only symptom of celiac disease that someone experiences or is it likely there are other symptoms as well?

Dr Samuel Frank:

Well, neurologically, there can be many neurological manifestations in celiac disease. Fortunately, most of the more serious ones that you may read about or in review articles are rare, but we do see some that are much more common than others. People do describe a vague sense in terms of their thinking not quite right. Brain fog is the common term that’s used for that, although we don’t have a true medical term for that. And neuropathy I think are the most common neuropathy is just damage of the nerves in the arms and legs to either the nerves that provide sensation to the brain or provide motor signals out to muscles. There can be other signs like coordination issues, what we call ataxia, and as part of my training, that was how I learned about celiac disease, epilepsy, dementia, and other muscle issues. I think that depression and anxiety are commonly put into this category too, and they can certainly be part of the neurological manifestation. They can be separate as well.

Vanessa Weisbrod:

So how long might it take for a headaches to resolve after starting the gluten-free diet?

Dr Samuel Frank:

I usually tell people that they might start to feel better within a few weeks or a month, but it really can take about six months for them to reach their best in terms of any neurologic issues and specifically migraines in general, I try to under promise and over-deliver. So if they feel better sooner, then that’s great, but I think it’s a matter of weeks to months, it’s not going to be instantaneous and it certainly shouldn’t be years.

Vanessa Weisbrod:

I think that’s really good advice. We often hear about people who start a gluten-free diet and a week later they’re not seeing any changes and then they’re like, “Ugh, maybe I just go back to gluten.” So I do think it’s really important to set that as expectations in the beginning, that it’s not an overnight fix.

Dr Samuel Frank:

We live in an overnight and instant world with all different kinds of messaging and expect people to… But the human body has not evolved to keep up with our technology. So I think our expectations of what’s around us is a little different than what the human body is capable of. I agree.

Vanessa Weisbrod:

Absolutely. So if a patient’s primary symptom of celiac disease was headaches, if they’re exposed to gluten, will they always get a headache or could their symptoms evolve down the road?

Dr Samuel Frank:

I don’t think that this is studied very well. So let me start off with that. So my response is really based on anecdotal evidence or anecdotes I should say, in terms of what patients have told me. Patients with celiac obviously know when they feel different when they get exposed to gluten after they’ve been on a gluten-free diet. And many patients with migraines, they’re still going to get headaches every once in a while, like a usual person might if they don’t sleep well, they sleep funny and their neck is… But if they get a different kind of a headache when they get exposed to gluten, let’s say they only get migraines when they’re exposed to gluten. They may note that they can have that migraine within hours of that exposure. So obviously if people are chronically exposed, that increases the risk for other neurologic complications beyond migraines. But usually people know pretty quickly if they’ve been on a gluten-free diet and they get exposed to gluten that that they’ve had that because of their migraine.

Vanessa Weisbrod:

Are there particular preventative or abortive medications for migraines that are more effective for patients with celiac disease?

Dr Samuel Frank:

A gluten-free diet? That’s really obviously the core, and I know that that’s obvious, but I think that there are people that think that they can get away with a little bit of gluten. They can’t. And I just think that that needs to be emphasized. So it’s obviously the mainstay of treatment and there are many people that are on multiple drugs for headaches and they can get off of almost all of them or all of them once they stick with a gluten-free diet. So that’s really the key.

Before people get to that point. Let’s say it takes six months, once they get diagnosed and they’re on a gluten-free diet, they continue to get migraines. We do use the usual migraine type of medications and they’re really in two classes. One is to prevent a migraine from happening, and that’s a medication that you take every day or in some cases every other day or a shot that you give yourself to prevent the migraine. And then there are medications that we use to stop the headaches once they start and with a migraine, the earlier you take a medication, the more effective it is and the less disabled people are going to be because of that migraine.

I also want to emphasize that with every medication you want to check to make sure that there are no gluten containing ingredients and there are more and more newer medications, and particularly when it comes to migraine because nausea and vomiting can be associated with it. Some of those medications are wafers, and so it’s not just a usual tablet or capsule. Of course the pharmacy is going to have all the listing of the inactive ingredients. You can check before they dispense it to you.

Vanessa Weisbrod:

That’s a really, really good point to always double check those. So what does follow-up care look like for a celiac patient whose primary symptoms was headaches? Do they see their neurologist or gastroenterologist regularly or both?

Dr Samuel Frank:

They’re going to need to see both, especially when they’re first diagnosed, if the neurologic issues are ongoing. And it kind of depends on the neurologic issue in general. If it’s migraine, I do check in with people just to make sure things stay the same. There is an evolution of migraines over someone’s lifetime, particularly when their lifestyle changes. There can be hormonal influences, particularly in women over the course of their lifetime. So I will check in with people. It doesn’t have to be very often, but just to make sure that their migraines are stable and remain under good control. And of course, good GI care is a key component of managing celiac disease.

Vanessa Weisbrod:

Absolutely. So where is the research right now on looking at the connection between celiac disease and headaches? What are the big questions that our community needs to address to better understand the relationship?

Dr Samuel Frank:

I specifically did a clinical trials research thinking about this question and looking at what’s out there, and there’s really not a whole lot of research. There are some observational studies to add to what we already know, and I think those are really important. But the question that you asked, what do we use to treat migraines when it’s related to celiac disease? Is it more effective? Is it less effective in terms of our usual medications? These are questions, as many others, that we don’t have the answer to. That we could if we had the neurologist, headache specialists, researchers that ask these questions and had people to volunteer for them. So I think that there are many questions from a neurologic perspective, many related to migraines that are out there that we don’t have an answer to and aren’t being investigated. So I would say from a patient community perspective, I would say advocate that celiac disease can have neurologic complications and we need to understand it better and look at whether the existing therapies work in people with celiac disease.

Vanessa Weisbrod:

And I hope people listening will write letters and ask for more research to happen on this because it’s such an important topic and it’s really an area where we see so many patients sharing their stories about, and so it would be good to learn more in this area. So this has been so helpful talking about headaches. When we come back, we’ll discuss other neurological issues related to celiac disease.

We’re going to take a quick break to hear from our podcast sponsor, the Global Autoimmune Institute.

Sponsor:

The Global Autoimmune Institute works to empower solutions in the diagnosis and treatment of autoimmune diseases through research, education, and awareness while supporting multidisciplinary approaches to health. We are thrilled to support the production of this educational podcast.

Vanessa Weisbrod:

Welcome back. So we’ve talked a lot about headaches, but I don’t want to forget that there are other neurological issues that can come with having celiac disease. One that we hear about frequently is brain fog. Can you talk to our listeners about brain fog and how it relates to celiac?

Dr Samuel Frank:

Yeah, I think you’ve heard so far that I have an interest beyond migraine when it comes to neurological involvement of celiac disease. So I’m glad that we’re talking about that in this segment. In terms of brain fog, as I said it’s a non-specific term. It doesn’t really pinpoint to anything specific related to a diagnosis or disease. It’s a common sense that people have and I think there’s even more awareness since it commonly is associated with COVID infections too. So I think the general population gets it more now than they ever have.

One thing I want to be clear is that brain fog is not the same thing as dementia. Those are two very different things. Dementia is significant cognitive issues that result in functional decline, and that is not what we’re talking about when it comes to brain fog. It is pretty common, but it really has not been well characterized neuropsychologically with detailed tests about what are people struggling with, what are their strengths when they have brain fog? So we don’t really understand that the underlying etiology. Is it due to poor attention? Is it because of poor sleep quality? Is it because of nutrient deficiencies? I think there are many questions around this, more questions than answers for this remarkably common symptom related to celiac disease.

Vanessa Weisbrod:

So does the brain fog clear up quickly after starting the gluten-free diet?

Dr Samuel Frank:

There’s very limited data on this. So let me start off with that. It is variable in terms of what patients report. Similar to other symptoms, again, I would not expect it within days. I would not expect this one to be even be weeks. This is going to be months. And there was one study that suggested it can take up to five years to completely clear. I think that’s a little on the long side. Usually people have a clearing long before that, but I think that that’s the exception rather than the rule in terms of years. So like many other aspects of autoimmune disease, assuming that it’s adequately treated, we’re talking on the order of months for most of it to clear.

Vanessa Weisbrod:

I love hearing stories from patients just like Vincent’s, where they just remember the day in which they woke up and felt clear for the first time. And it’s almost as though they describe it as a new beginning or the starting of their life being healthy.

Dr Samuel Frank:

Yeah, it’s true. And it can feel like it’s overnight like that because all of a sudden they’re much more aware. I do wonder if there’s some type of sensory change that makes that happen, that’s part of the brain fog too.

Vanessa Weisbrod:

Another research question to ask, right?

Dr Samuel Frank:

Completely.

Vanessa Weisbrod:

So let’s switch gears and talk about peripheral neuropathy. So this is commonly discussed in the celiac community. Can you tell our listeners what peripheral neuropathy is and what the symptoms a patient might experience?

Dr Samuel Frank:

Sure. Peripheral neuropathy is really referring to damage to the nerves in the arms and the legs. So peripheral stands for the peripheral nervous system versus the central nervous system. When we talk about the central nervous system, we’re talking about the brain and spinal cord. The peripheral nervous system is nerves that go out to the muscles and back from sensory structures. There’s also the autonomic nervous system, which is a third nervous system that can be impacted in celiac disease two. It’s often lumped together with peripheral neuropathy because it’s out in the limbs, but this is what controls automatic functions of the body like blood pressure and heart rate, sweating, the GI system, pupils, things like that. And so most often when people have peripheral neuropathy, they have numbness or tingling or pain or zinging sensation when we’re talking about the sensory nerves that are impacted and weakness or muscle twitching, when it’s the muscle types of nerves that are impacted.

Vanessa Weisbrod:

So do all of these symptoms with peripheral neuropathy resolve with the gluten-free diet or are other treatments necessary as well?

Dr Samuel Frank:

Most of the time it does resolve, and we do see that it has to be identified, which is the first part and often a challenge, but especially if it’s due to nutrient deficiencies, which there’s still debate if peripheral neuropathy is due to direct immune attack or if it’s secondary to nutrient deficiencies. But let’s say vitamin B12 is low, which is common in celiac disease, that is a clear cause of peripheral neuropathy. And so if we can replace the vitamin B12, we might improve the neuropathy. And I’ve seen a few patients with celiac disease that presented with B12 deficiency, their B12 was repleted, and then they show up years later with neuropathy and it’s because their B12 declined again because they weren’t absorbing it because of their celiac disease and that’s when they get diagnosed. And so that’s the type of story that we might hear.

Vanessa Weisbrod:

So several studies have shown that patients with epilepsy have an increased risk of developing celiac disease. Why is this?

Dr Samuel Frank:

Again, another opportunity to understand Celia disease and the impact on the brain? Because I have yet to hear a good explanation. There is one small family, mostly in southern Italy that has epilepsy and these strange calcium deposits in the brain. But that’s a very limited number of people that have that. I think most of the time it’s not clear exactly why there’s an increased risk of epilepsy in patients with untreated celiac disease. In people with known epilepsy. It makes a little bit more sense why they may have more seizures because they may not be absorbing their medications as well as they need to. And people with epilepsy can be sensitive to small changes in their medication levels. Electrolytes can have an impact on the surface of the brain and that can be altered in some patients with celiac disease. But I think that we don’t fully understand all the mechanisms that go into either nutrients, medications, the surface of the brain irritability, which is what is the underlying issue in epilepsy or other mechanisms. So again, another opportunity for observation and better understanding through research.

Vanessa Weisbrod:

So once they’re diagnosed with celiac disease, does the gluten-free diet help or stop or prevent the seizures from happening?

Dr Samuel Frank:

So let me answer that in two parts. One is there are all kinds of diets that are out there for patients with epilepsy and for the general population who does not have celiac disease, the gluten-free diet is not going to alter seizure frequency. There is a special diet that we sometimes use in children with severe epilepsy, the ketogenic diet, but we don’t recommend that just for patients with celiac disease who have epilepsy. So treating the celiac disease with a gluten-free diet so that the medications get absorbed, micronutrients are absorbed, electrolytes are easier to manage. I think all of that is really the underlying key to controlling what we know may impact epilepsy and celiac disease. I think that it’s never going to hurt to have an autoimmune disease less active when it comes to the brain, and I think that includes epilepsy, but I think there are other pathways that may improve epilepsy too.

Vanessa Weisbrod:

Great. So how does Parkinson’s disease, multiple sclerosis, Huntington’s disease or other progressive primary brain disorders, are any of these linked to celiac disease?

Dr Samuel Frank:

Now we’re getting into an area where I spent about 20 years of my life because I do Parkinson’s and Huntington’s disease and other primary progressive brain disorders, and we don’t know that there’s a link directly, that there isn’t, when we look at this. There are some cases of patients who have an Alzheimer’s like picture and when they have underlying celiac disease and when that gets treated, they’re in extreme… A few, very small number of cases. A few cases have shown dramatic improvement in their cognition. Now, these are likely people that have had celiac for many decades and may have something else happening like vitamin B12 deficiency which can also look like Alzheimer’s disease. So these cases are not well laid out. In general, we do not think that there is an association between celiac disease and progressive disorders. That being said, there is a clear component of GI issues in Parkinson’s disease, in Huntington’s disease, and tissue transglutaminase, which is one of the main markers in celiac disease, may actually be involved in other neurodegenerative diseases too, like ataxia and Huntington’s disease, and that’s being explored. But other than that, we don’t know of any direct connection between those.

Vanessa Weisbrod:

I know that you’re very protesting for celiac disease. Do you think that celiac screenings should be a part of neurological exams when there’s a question if a nutrient deficiency or other things could be related to celiac disease?

Dr Samuel Frank:

Well, my threshold for checking is exceedingly low. How’s that? I think if we have any symptom that is part of a disease that’s unexplained or more refractory or is just not well characterized, then those are the cases that I will often check for celiac disease. I think the residents laugh at me because I check it so often, but we find it, and I think that at least as a screening tool, we start off with just a blood test. We’re going to be getting blood for other things anyway, so we might as well. We also know specifically in patients with peripheral neuropathy that 10% of cases that are otherwise undiagnosed turn out to be Celtic disease. That’s a huge percentage. So I think it does depend on why someone’s coming to the neurologist, whether we should screen everyone or not. Neuropathy, 100%. Someone with Parkinson’s disease, there’s no connection that we know of. So unless there’s something atypical or unusual, I don’t usually. So it depends on the diagnosis and symptoms whether we should screen patients with neurologic issues for celiac disease.

Vanessa Weisbrod:

So let’s talk about gluten-free dietary compliance. How important is the strict gluten-free diet for patients with neurological complications of celiac disease and does it vary by condition?

Dr Samuel Frank:

Celiac disease only has a treatment of gluten-free diet. And so what I say to my patients with neurologic issues is you have control of reducing inflammation in your body by going on a gluten-free diet and sticking with it. And I think you get the idea that we don’t know everything about the brain, we don’t know everything about inflammation, but this is something that is within our control. And so I always should say highly recommend that people stick with the gluten-free diet to control something that they can. That they know will cause problems if they don’t stick to the gluten-free diet. So I do think it is really always important to adhere to if you have celiac disease.

Vanessa Weisbrod:

So as you heard from Vincent, and I know you’re well aware from the many patients that you treat, quality of life is severely impacted by all of these conditions. How do you address patient quality of life in your clinic?

Dr Samuel Frank:

I mean, function and quality of life are really what I focus on with all of my patients. And so I think every recommendation that we make, whether it’s related to dietary changes, medications that we start or stop it all should have the goal of improving quality of life and functioning. And patients with neurologic issues or complications of celiac disease are no exception. Also, with that goal, I’m always open to listening to patients and families and won’t discount anything because they’re the ones that have to live with the disease and the symptoms that they’re experiencing. And so until we have a cure, it’s worth exploring all avenues to see what we can do to reduce pain, improve quality of life, and maintain or improve functioning.

Vanessa Weisbrod:

Very well said. So thank you so much, Dr. Frank, for all of the wisdom that you shared today. Now let’s find out where Vincent is today.

Speaker 2:

Today Vincent is 26 years old and lives abroad coaching an international soccer team. He played division one soccer in college and led his team to compete in the national tournaments. Having celiac disease never phased him. He says that he felt relief knowing that by simply modifying his diet, he could be healthy and strong and perform at a competitive level. Vincent knows that he hated taking the medications for his headaches, so he found the gluten-free diet to be a much more satisfactory treatment. He admits it wasn’t always easy finding gluten-free options on the road, but credits his mom with being a terrific advocate for him along the way.

In his own words, “Having celiac disease has felt like no big deal. There were moments I missed things, like at our team’s spaghetti dinners, but pretty quickly my mom started hosting these events and just made the spaghetti gluten-free for everyone. My teammates were always supportive and felt like a part of my family. I think this had a lot to do with my mom pushing me to be open and honest about having celiac disease. This allowed my team to find easy ways to include me in gatherings. Today, I’m as strong as can be and hope that down the road I can help other young people with celiac disease realize they can be too.”

Vanessa Weisbrod:

Thanks for listening to today’s episode of Raising Celiac.

A special thanks to the generous contribution from the Global Autoimmune Institute to make this podcast possible.

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Join us next month when we discuss the relationship between celiac disease and mental health. Have a great month.