Has a family member  been diagnosed, and they’re urging you to get checked out? The idea of having an autoimmune disease is distressing enough. The thought of taking the steps to found out for sure may seem daunting. It’s not a surprise. There are a lot of competing voices out there.

Take a deep breath. I’ll share a bit of my own journey, facts from trustworthy organizations, and try to help you figure out how to best navigate your concerns on being tested for Celiac Disease.

1. Don’t Change Your Diet Before Antibody Testing

I’ve heard so many heart breaking stories of people who’ve stopped eating gluten prior to being tested for Celiac Disease. Maybe they did it on their own because they wanted to feel better. Maybe a doctor told them to stop prior to testing. DON’T DO IT! All of the accurate testing methods we have to date require the consumption of gluten.

Wheat Allergy vs. Celiac Disease. Vs. Gluten Sensitivity

Maybe you’re thinking, “If I feel better eating gluten-free, what’s the difference?” There’s a lot of difference, according to the University of Chicago Celiac Disease Center. There are three medical issues linked to wheat (wheat allergy, Celiac Disease, and Non-Celiac Gluten Sensitivity) that are distinctly different and require different treatments. Celiac Disease has many associated health issues, such as thyroid disease, osteoporosis, and other intestinal issues. It is important to have an accurate diagnosis to make sure you are getting proper follow-up care. Also, the term “gluten allergy” isn’t accurate.

What If It’s Actually Chron’s Disease?

In addition, Crohn’s Disease and Celiac Disease have many overlapping symptoms, and again require different treatments. (I actually know of a young man who was misdiagnosed for years with Celiac Disease when in fact he had Crohn’s. Not fun.) There are over 300 symptoms that are associated with Celiac Disease, which can make it difficult to diagnose. You owe it to yourself to know for certain!

My Doctor is Worthless / Refuses to Test Me

I know that there are plenty of not-so-great doctors out there. I’ve had my fair share. For those living in Michigan, I highly recommend the doctors at Michigan Medicine Celiac Disease Program. The Celiac Disease Foundation also provides a list on their website of doctors, dietitians and other medical professionals that they trust.

2. Ask Your Doctor to Run Some Blood Tests

A. Celiac Disease Antibody Panel

Doctors have tested for Celiac Disease through the years with a variety of blood work tests. As medical science gets better, so do the tests. As of today, the best test is “tTg-IgA”. This is short for Tissue Transglutaminase Antibodies. It is highly accurate and is positive in 98% of those with Celiac Disease. It is also low in what we call “false positives.” This means that it will accurately come back negative in 95% of those who do NOT have Celiac Disease.

What About False Positives and False Negatives?

“There is a risk of a false positive especially for people with associated autoimmune disorders like Type 1 diabetes, chronic liver disease, Hashimoto’s thyroiditis, psoriatic or rheumatoid arthritis and heart failure, who do not have celiac disease.“
Because there is some wiggle room, doctors SHOULD run these additional blood antibody tests-

Endomysial Antibodies (EMA), total serum IgA, and Deamidated Gliadin Protein (DGP)

Also please know, that as great as science is, it is still possible for lab tests to come back with a false negative. If you still feel awful, and especially if you have a family history of Celiac Disease, continue to consult with your doctor. Share this guide from the Celiac Disease Foundation if they seem unsure of what tests to run.

Antibody Testing in the Black Community

Recent research has shown that antibody testing in the Black community is not always accurate. A 2022 study showed that “Eighty percent of Black patients with biopsy-confirmed celiac disease in the registry had TTG test results that were less than the upper limit of normal, compared to about 9 percent of non-Hispanic white patients in the registry.” I urge my Black friends to test for an upper endoscopy, even if antibody testing doesn’t suggest Celiac Disease.

B. Genetic Testing

Scientists have now been able to decipher where the sequences of Celiac Disease reside on our genetic makeup. At this point, genetic testing can only be used to rule out Celiac Disease. Doctors state that if you do not test positive for HLA DQ-2 or HLA DQ-8, you cannot have Celiac Disease.

Unfortunately, simply having those genes don’t mean that you DO have Celiac Disease. A large portion of the population (30%) has those genes, but only 1% of the population develop the disease. Because of this, genetic testing CANNOT be used to diagnose Celiac Disease in those who have already stopped consuming gluten. 

3. Meet with a Skilled Gastroenterologist for an Upper Endoscopy

This is me getting ready for a follow-up endoscopy with my new gastroenterologist. A small bowel biopsy, via endoscopy, is the gold standard for being tested for Celiac Disease. I was diagnosed with Celiac Disease in 2001. Fast forward to 2017. My original gastroenterologist followed up only ONCE. He never scheduled follow-up antibody tests to make sure my body was healing. Neither did he check me for osteoporosis, thyroid or other issues. After a move 60 miles away, I decided it was time for a change.

My endoscopy was pretty easy. I didn’t need to drink any junk (that’s for a colonoscopy), and I had to not eat anything for about 10 hours prior to my procedure. Once I was in the procedure room, they were finished in less than 15 minutes. I was under complete anesthesia the whole time. I hear stories by some that weren’t under anesthesia, either because they didn’t want to be or their doctor was foolish.

What Exactly is an Endoscopy?

I’ll explain what an endoscopy is, as that seems it is what makes most people most anxious in being tested for Celiac Disease. During an endoscopy, they stick a small tube with a camera in it to visibly inspect your esophagus, stomach and the duodenum (top part of the intestines.) They also take small bits of tissue, called a biopsy. Tiny, tiny bits of tissue. Small, barely there bits that go under a microscope. These bits are tested and inspected for damaged villi, which are responsible for absorbing our nutrients. This video is great for children who are anxious about underoing an endoscopy.

How Many Samples Should My Doctor Take?

Make sure that your gastroenterologist is taking at least 6 samples from various places in the duodenum. One sample is not enough to make a definitive diagnosis. Celiac Disease can affect one patch of the intestines and not another. More samples are always better. This medical standard in Celiac Disease testing is better explained in the University of Chicago Celiac Disease Center’s explanation of an endoscopsic biopsy.

There may be a day in the future when we will  have less invasive ways to diagnose Celiac Disease. But until then, I will personally still advocate for an biopsy via endoscopy. During the biopsy, doctors might notice items of additional concern. For example, my follow-up endoscopy revealed a hiatal hernia.

4. Meet with an Educated Dietitian and Other Resources

So you’ve been poked, prodded, tested and inspected. You’ve been tested for Celiac Disease and the results are positive. Now what on earth do you do? It’s not as simple as “just take gluten out of your diet.” I mean, that’s what we need to do, but it’s a big learning process. What is gluten? Where does it hide? What other nutritional deficiencies should I be concerned about? Can I ever eat pizza again?

Step 1 After Diagnosis – Find a Knowledgeable Dietitian

This is where a good dietitian who is versed in Celiac Disease is a good place to start. I would again use the CDF provider directory to find one a knowledgeable dietitian. Remember, dietitians have to learn A LOT in school, and some may not be well versed in Celiac Disease. I know Gluten Free Watchdog has offered, in the past, to help people find a good dietitian.

Step 2 – Develop a Support System

I always recommend finding a local Celiac Disease support group. You can find some in my list of local and national resources.  Many groups have a dietitian who advises their group as well. They are also the people who have been navigating and living with this disease everyday They are the ones who have walked in the shoes that you now find yourself in. They know the emotional side of Celiac Disease.

There are lots of good online resources for those of us who are newly diagnosed. The Gluten Intolerance Group, the Celiac Disease Foundation, and Beyond Celiac are all organizations devoted to helping those with Celiac Disease. They all excel at certain aspects of Celiac Disease management. The University of Chicago Celiac Disease Center is an excellent resource as well. Their “FAQ” section is the biggest searchable question database I’ve ever seen. The offer a free E-book to help you “Jump Start” your gluten-free lifestyle.

Be Careful of Who You Follow Online

There are lots of self proclaimed experts online. Make sure that whomever you are following is providing sound medical advice. While I usually don’t “call out” pages I disagree with, I have reservations about Celiac.com and the Gluten Free Society. The first, as explained by Gluten Dude, has lost its credibilty. The second has always been about making money, and promotes unsound medical advice. Just remember, if someone is spouting something too good to be true, it likely is.

Hopefully I’ve given you some information that’s been helpful in regards to being tested for Celiac Disease. I will state clearly that I’m not a doctor, dietitian, nurse or “certified” medical professional. I am a previous Celiac Disease support group chair and a Celiac Disease advocate. I’m a fellow “gluten free gal,” whose been diagnosed with Celiac Disease for over 20 years.

I’m walking this journey with you, every step of the way.

How were you diagnosed with Celiac Disease? What part was most concerning for you? What insights can you share with those who are about to be tested for Celiac Disease? Please share your thoughts below!

Originally published 2018

The post How to Get Tested for Celiac Disease, Accurately appeared first on MI Gluten Free Gal.

Celiac Disease is An Autoimmune Disease, Not a Food Allergy

Celiac Disease is an autoimmune disease. This can be confusing because sometimes you’ll even hear someone with Celiac Disease refer to it as an allergy when we’re eating out. (More on that on another day.)

An autoimmune disease is a “disease in which the body produces antibodies that attacks its own tissues, leading to the deterioration and in some cases the destruction of such tissue.”

Examples of other autoimmune diseases include Type 1 Diabetes, Lupus, Rheumatoid Arthritis, Multiple Sclerosis and more. To make it more interesting, autoimmune diseases are like birds – they like to flock together. When someone has an autoimmune disease, they are likely to develop another one later in life. We’re a blessed bunch, aren’t we?

Celiac Disease is Genetic

Celiac Disease is also a genetic disease. This means that the “code” for this disease is passed on through our genes to our offspring. For example, my grandmother and father both have Celiac Disease.

Interestingly enough, simply having the genes for this disease does not automatically mean that you will develop it. Thirty-five to forty percent of the general population carry the HLA DQ2 or HLA DQ8 genes, but only 1% of them will actually develop Celiac Disease. This is why genetic testing is not sufficient to diagnose the disease. Only to rule it out.

How Does One Get Tested for Celiac Disease?

So how does one get tested for this autoimmune disease? The two B’s – blood work and biopsy. And for these tests to be accurate you have to “B” eating gluten. (See what I did there? I’m so punny.) Doctors traditionally order a Celiac Disease panel that screens for the tTg, EMA, and DGP antibodies. I explain this more in depth on my post on how to get tested for celiac disease, accurately.

If those come back with a high level of antibodies, the next step is a small bowel biopsy done via endoscopy Before you panic, an endoscopy is performed by passing a tube through the throat, so there’s no need to drink the “junk” prior to this procedure. People sometimes comment that it’s highly invasive. Sure, there are some tissue samples, but more cutting and anesthesia is given when someone has their wisdom teeth out. It’s really not that bad. At least in my opinion.

How Does Celiac Disease Affect the Body?

As I mentioned above, the antibodies created by ingesting gluten destroy the body. Specifically, the antibodies destroy the villi that line the intestinal wall. Villi (vill- eye) are small finger-like projections that line the wall of the bowel. They’re little nutritional vacuums, sucking up all the vitamins and minerals from the food we eat.

They absorb the calcium we need for strong bones, the iron we need for red blood cell production, the B6 vitamins we need for metabolism. The list goes on and on. Without those little guys, we’re one big heap of malnutrition. Our body systems can’t function properly without those nutrients, which is why Celiac Disease has so many symptoms and is often misdiagnosed.

What Symptoms Does Celiac Disease Cause?

Due to this malnutrition, Celiac Disease causes some very unpleasant symptoms. Some of these issues can be embarrassing. Before I was diagnosed, I had the most foul smelling gas. I had chronic constipation. Some symptoms can be painful. Joint pain plagued me all throughout college

Some of the symptoms can be dangerous. There are many times that I had racing heart rates, which made me anxious that I was having a heart attack. Beyond Celiac shares a list of celiac disease symptoms, as well as a symptom checklist you can share with your doctor.

It’s Not In Your Head. It’s in your Gut.

Among these symptoms are also neurological and mental health issues. I think this is important to include, as anxiety and depression is on the rise in this country. While these are very real diseases which often require medical intervention, it’s worth mentioning that the food we eat can play a large part in the way we feel emotionally.

There are those with Celiac Disease who may never have physical symptoms from ingesting gluten, but have very serious panic attacks. I personally had one every morning for a year prior to my diagnosis. It’s definitely not fun. I also share this for those who may think that “a little” gluten won’t hurt someone with Celiac Disease. Please don’t mess with our food, because it can literally mess with our minds.

Celiac Disease is Life Changing, Not Life Ending

Celiac Disease changes more than our bodies. It changes our relationship to food, and often to other people. Social engagements often revolve around food, therefore we need to learn to navigate relationships as well. However, this disease does not have to define us or feel like a death sentence. In fact, a gluten free diet helps our bodies to heal so we can live our best life.

However, it often feels overwhelming, especially in the beginning. Let’s take some baby steps, together, in a series of articles I’ve written. First, let’s learn about the gluten free diet, and what’s safe and unsafe to eat. Next, let’s discuss how to take care of ourselves after receiving our diagnosis, both physically and emotionally. Lastly, we’ll discuss venturing outside of the home to eat with others, and resources that can help us learn more about this disease, and keep us healthy.

Welcome to the Celiac Family

Hopefully this primer has been helpful. Please know I have a whole category on my website devoted to living with Celiac Disease. It includes articles about research, food labeling, and so much more. I also have a post about “Celiac Disease Truths I Wish you Knew,” that contain images and memes you can use to educate others.

Last but not least, a few things you I want you to “hear.” One, you did not cause this to happen to you  (or your children.) It happens, so please lay aside any guilt you may have. Also, please know you are not alone. There are many in our community who are eager to help. Email me or reach out to me on social media anytime!

Let’s help spread the knowledge. What’s one thing you’d tell someone who is newly diagnosed? What insight or encouragement would you share? Add it in the comments below! 

Originally Published May 2016

The post What is Celiac Disease? appeared first on MI Gluten Free Gal.

What is The Celiac Project Podcast?

Do you listen to podcasts? People record podcasts on just about everything these days. Mike Frolichstein and Cam Weiner fill the gluten-free void each week with their show, The Celiac Project podcast.

Each Wednesday they discuss topics related to Celiac Disease, including current headlines, dating, and living with Celiac Disease in the workplace. Mike and Cam have a great rapport and it’s great to hear a male voice in the Celiac Disease conversation. They’ve hosted this podcast for 10 years, and have recorded over 400 episodes!

How This Gluten Free Podcast Started

I first met Michael Frolichstein at the GFAF Expo in Chicago many years ago. Michael makes documentary films, and realized after his own Celiac Disease diagnosis that he could use his skills to promote Celiac Disease advocacy.

I watched his documentary, The Celiac Project, while attending a support group meeting in the greater Detroit area. It is a montage of  different people, who discuss living with Celiac Disease. Michael also discussed his nephew’s experience journey in being tested for Celiac Disease. The documentary was the foundation for their weekly podcast.

How Can I Listen to The Celiac Project Podcast?

You can find The Celiac Project podcast on all of your favorite podcast platforms. I personally use Pocket Cast, but it’s also available on Amazon, Spotify, Apple and more. Not a fan of apps? You can also listen to their podcast directly from their website.

Celiac Project Podcast Episodes I’ve Been On

I’ve had the pleasure of being a guest on their podcast three times. I embedded those episodes so you can easily listen to them. The first two podcasts were recorded Q&A sessions we held at the Indianapolis GFFA Fest in September of 2017.

The last embedded podcast session is from August of 2017, where Mike, Cam and I discuss the Catholic church’s stance on communion. For more on this topic, you can read my post about Celiac Disease and Catholic Communion.

The Celiac Project Podcast in Indianapolis – Part 1 (Episode 92)

On this episode we answer questions from the audience, discuss the NIMA sensor, and my affinity for rice cakes.

The Celiac Project Podcast in Indianapolis – Part 2 (Episode 93)

Here we discuss Celiac Disease symptoms, our biggest challenges, and what areas we would still like to see change.

The Celiac Project Podcast – Conversation About Catholic Communion

In my first podcast with them, we discuss the Catholic church’s stance on wheat being required in the communion host.

Other Gluten Free Podcasts You Might Enjoy

• You Had Me At Eat with Erica Dermer and Jules Shepard
• 100% Gluten Free News with Andrea Tucker
• A Gluten Free Podcast with Ben Hampton (Australia)
• A Canadian Celiac (Canada)
• Celiac Straight Talk (Beyond Celiac)
• Gut Health Podcast (covers add’l digestive issues)
• Gastro Girl (covers add’l digestive issues)

Have you listened to The Celiac Project Podcast? What other Celiac Disease or gastro- related podcasts do you listen to?

Originally Published October 2017

The post The Celiac Project Podcast- Talking with Mike and Cam appeared first on MI Gluten Free Gal.

Margaret’s Background with Gluten Free Foreign Exchange

My husband and I hosted Daniel, a young man from Finland, many years ago. Daniel lived with Celiac Disease and Type 1 Diabetes. As my husband and I had no children of our own, we were excited to host a teenager in our home.

While our experience wasn’t perfect, I still highly recommend it to anyone. I learned so much about Finland and Type 1 Diabetes. All these many years later, I’m still in touch with Daniel’s mom over social media.

Karen Rohwer Joseph’s Experience with Foreign Exchange

My friend Karen has experience with both sides of Foreign Exchange hosting. Not only has she hosted students in her own home, but she has been a coordinator for finding housing for other students. (Learn more about Karen in my Interview with GF Experts series.)

As Karen shared with me “If I weren’t involved with so many happy experiences, I wouldn’t have stayed in this position for seven years! The enrichment to my life, as well as that of the international students and their host families, is what an amazing cultural exchange is all about.”

Below is a Q&A between Karen and I. Hopefully it answers any questions you may have about hosting a Gluten Free Foreign Exchange student. For reference, she works for ASSE International Student Exchange Programs.

Are All Exchange Programs a Year (10 months) Long?

No. The majority of ASSE students come for the school year but we do have kids that just sign up for a semester. However Karen notes that often “one semester” students end up enjoying it so much that they want to extend to a whole year.

Margaret notes that there are some foreign exchange agencies that offer a short summer visit. Margaret’s cousin used to work with Greenheart International. They offer shorter 1 – 2 month experiences. These summer experiences do not include schooling.

Specialty Exchange Programs – FLEX and YES Programs

FLEX and YES programs last a standard school year. However these students have met some additional criteria. Both programs were created by US Congress years ago. They offer full scholarships to outstanding high schoolers with excellent grades and a good foundation of the English language. They undergo many rounds of screening. Only 2.3% of applicants ultimately get these scholarships.

Karen shared that these are her favorite students to work with because they work so hard for this opportunity. They tend to be quite knowledgeable. As a FLEX and YES leader, she makes sure that these kids have additional enrichment activities.

U.S. Department of State’s Future Leaders Exchange (FLEX) program

The FLEX program (“Future Leaders Exchange “) was created 30 years ago in the wake of the collapse of the Soviet Union. It was intended to aid this process by bringing these talented high schoolers to the US to be immersed in our country.

During that time, ASSE exchange students are involved special leadership projects on our democracy and diversity. They also volunteer 50 to 100 hours in any organizations of their choosing. These kids also act as ambassadors of their own countries. They are required to do 3 country presentations. Getting to know a Ukrainian student for example, adds context to a foreign war.

U.S. Department of State’s Youth Exchange and Study (YES) program

The YES program was created after 911 by senators Kennedy and Luger. It was intended to build bridges and increase understanding between countries with a significant Muslim population. YES students engage in community service and civic education activities. That said, the kids from these countries are usually Muslim, but not always. Some practice their religion, some don’t, and some are even Christian. The main goal is to build bridges between people.

How Do You Choose a Foreign Exchange Agency to Work With?

There are many agencies that coordinate and oversee high school student exchange programs.

Make sure any agency you work with is CSIET Certified. This stands for “Council on Standards for International Educational Travel.” You can learn more in this PDF about Student Safety Guidelines on their website.

After that, choosing an agency mostly comes down to your local support person. You need to know they will be there for you.

You can also set up a foreign exchange program thru the U.S. State Department.

Does The U.S. Government Oversee Foreign Exchange Agencies?

As a prospective host family, you should know that high school exchange programs are overseen by the U.S. Department of State. They audit agency records to ensure that they’re doing their jobs. This includes requiring workers receive an annual training and also require that workers certify on an annual basis to ensure that they understand the state department rules.

How Do You Vet an Agency Representative?

Karen suggests that you should feel free to ask your agency representative questions! Some of them might include the following:

• How long has the agency been in business?
• Why did they decide to become an exchange representative?
• Do they have any previous experience working with kids/ teenagers? (Former teacher, social worker, etc?)
• How long have they been with the agency?
• If they’re brand new to this job, do they have someone who is mentoring them?
• How many students have they placed in the past?
• Do they have experience placing students with dietary restrictions?
• Feel free to ask for a couple references from previous host families!

Do Coordinators Get Paid to House Students?

Representatives receive a stipend for each student placed. At ASSE, they receive this in installments based on completing their requirements (3 activities, monthly documentation, orientations, etc.) However, money alone should not be the motivation to work in this job.

If your coordinator/area representative offers several activities and / or an overnight trip, you know that coordinator is all in!! These activities involve hours of planning and go beyond basic requirements. A good coordinator needs to have a passion for doing this!

Do Host Families Receive Financial Compensation for Hosting?

Host families do not get compensation. (It would violate the rules of this type of exchange program actually). There are other exchange programs that have another structure. Instead of coming on a J1 visa, I think the students who come on an F1 and can stay for more than one year, even multiple years.

Do Students Come with Money? Do Host Families Pay for Everything?

Families are only responsible for costs related to feeding and housing the student. If a student chooses to eat out with friends, they cover that with their own funds. Typically, the students “natural parents” as they call it in our agency, provide monthly funds to their son / daughter via a reloadable credit card.

Our students bring monthly funds to cover their own entertainment, sports, activities, personal care items and more. If you have a vacation planned, you are welcome to bring your student along or we can help you coordinate alternate arrangements during your absence.

What About Health Insurance? Do I Add the Student to My Policy?

Health insurance is provided to exchange students so the host family assumes NO medical costs, should any arise. Margaret can speak with experience on this topic. “When we hosted Daniel, he ended up in the hospital due to complications from his Type 1 Diabetes. We never paid for a single hospital bill.”

All students are issued a travel health insurance plan for the school year. It’s included in the program. At ASSE, we provide information about how it works during the host family orientation — and in depth during the student orientations.

What Training Is There for Prospective Foreign Exchange Host Families?

At ASSE, host families are provided with an orientation from their coordinator prior to the arrival of their student. This includes information on cultural adjustment, program rules and health insurance so that they feel prepared for the experience ahead. Exchange students also receive an orientation from their area representative/ coordinator within two weeks of arrival. This is in addition to pre-departure orientation in their home countries so the students are well prepared.

What Help Do Host Families & Students Receive Throughout the Year?

Hosting a student extends well beyond the process of being matched to a student. Area representatives / coordinator are required to contact the student and host families separately (by phone or in person) each month throughout their stay. (Texts alone are not enough.) Agency support is always just a phone call away, 24/7.

Additionally, ASSE students are required to attend at least 3 activities with their area representatives/ coordinators during the exchange year. Ideally, these activities are enriching in nature (going to a museum, an Escape room, or a festival, for example) and involve other exchange students. It’s valuable for these kids to get to know others from around the world!

What Do We Do If The Foreign Exchange Student is Not a Good Fit?

Most experiences go very well. Know that you are not required to keep a student all year if they’re not a fit for your household. Host families are volunteers and as such, this is meant to be an enriching experience for them as well as the student!

An active area representative/coordinator will be available to support the family, provide ideas to improve communication, work directly with the student and move them to new home if this is the best resolution. Thankfully this isn’t a routine occurrence!

Are There Rules on Who Can Host?

Any families can host. The only special rule at ASSE is that a single adult who lives alone must take two students so it becomes more of a family situation. (If the adult has a roommate or another person in the household, the rules are different.) Karen has “empty nesters” and couples who have never had kids. Families with kids in college and families with babies and toddlers can also host.

Probably one of the biggest misconceptions is that you have to have a teen at home — or it’s best to have a teen. That’s just not true. We study the kids profiles for clues when matching them up to a household.

What About Bedroom Arrangements?

A lot of people automatically assume that a student needs to have their own bedroom, but that isn’t the case. However, there are rules about sharing a bedroom. ASSE guidelines state that students can share a bedroom with a same gender host sibling if they are within four years of age of the student.

Do I Have to Live in a Big City?

When hosting a student, you can live anywhere. However, when hosting a gluten free foreign exchange student, it may be helpful to live in or near a city with gluten free dining options. When we hosted Daniel, it was a shock that we had so few gluten free options in the greater Flint area.

Then again, Karen thinks this is not necessary. She shared about a young girl in a VERY rural small town with few gluten free dining options locally. However, she had a FABULOUS year. She family provided her with her necessary food and made the best of it. Also, Joanne Nichols from Saginaw, MI shared in this article about how her two gluten free exchange students thrived in their more rural setting.

**Please remember that host families are responsible for feeding gluten free foreign exchange students. Gluten free food costs almost 2x a much as their wheat based counterparts. If you’re not already used to cooking for gluten free eaters, the cost difference may be a bit of a shock.

Do Schools Have to Provide Gluten Free Meals to Exchange Students?

It’s also worth investigating how well your local school accommodates students with dietary restrictions. In Michigan, “Schools are required to provide meals that meet allergy restrictions as confirmed by a doctor’s note.

“In addition, the Michigan School Meals program strongly encourages participating schools to offer meals that meet students’ dietary restrictions, including the provision of gluten-free meals, vegetarian meals, vegan meals, and, upon request, kosher meals, and halal meals.” Some schools are better at this than others.

Do Gluten Free Exchange Students Graduate with Their Classmates?

Karen told me the following: The United States doesn’t usually allow exchange students on a J1 visa to receive a diploma. Each student receives a transcript of the class they took while in the US. Not all countries will give students credit for the class work done while here.

This doesn’t mean that they’re not allowed to walk on graduation day. Costs for cap and gown, and senior photos are paid for by the student.

When Do Foreign Exchange Students Return Home?

Karen shared that students usually return within 10 days of the end of the school year. Sometimes there may a grace period, depending on their visa. Students may stay later if their natural parents visit the US and then return home with them. (Parents may not visit until the end of the school year, per US State Dept. guidelines.)

Other Questions?

What other questions do you have about hosting a gluten free foreign exchange student? Add them to the comment section below, and I’ll research them and add them to my post! Have you hosted a gluten free foreign exchange student? Please share your experiences below!

The post Hosting a Gluten Free Foreign Exchange Student appeared first on MI Gluten Free Gal.

Dear Celiac

I had the pleasure of meeting Kristen Adam at the Nourished Festival. Listen to her interview with The Celiac Project Podcast to learn more about this young lady!

Buy on Bookshop.org | Buy on Amazon

Adam’s Gluten Free Surprise: Helping Others Understand Gluten Free

This Celiac Disease children’s book is written by Debbie Simpson, from Gluten Free Respect. A similar book for girls, Hailey’s Gluten Free Surprise, is also available. 

Buy on Bookshop.org | Buy on Amazon

Everyone’s Got Something: My First Year with Celiac Disease

The greatest thing about this children’s book? Two teenagers wrote it! This book tells the story of Lexi, a girl newly diagnosed, in journal entry format. It even includes a gluten free brownie recipe!

Buy on Bookshop.org | Buy on Amazon

Celiac Lost: A Family Guide to Finding a Gluten-Free Life

This book was written by a mother and son duo. After Christopher was diagnosed with Celiac Disease as a teenager, they wanted to help others navigate the gluten free diet. This book shares what to eat and what not to eat, as well as a collection of gluten free recipes. Available in Kindle and Paperback. 

Buy on Bookshop.org | Buy on Amazon

Willie Villie Meets Casey Kramps in Sprueville: A Book About Celiac Disease

At our gluten free camp, we have so many girls. Therefore, I love Celiac Disease children’s books written with a young man as the focus. This book is available in paperback and Kindle formats.

Buy on Bookshop.org | Buy on Amazon

Eating Gluten-Free with Emily: A Story for Children with Celiac Disease

This children’s book has many great reviews on Amazon. Multiple reviews say it helepd their children to understand their diagnosis. Some even mentioned using it in their children’s classroom to explain Celiac Disease to their peers.

Buy on Bookshop.org | Buy on Amazon

Mommy, What Is Celiac Disease?

Written in 2010, gastroenterologists Dr Fasano and Dr Guandalini endorse this Celiac Disease children’s book. Written by a graphid designer with Celiac Disease, the images are bright and eye catching.

Buy on Bookshop.org | Buy on Amazon

The Celiac Kid

Who doesn’t love a super hero?! Follow Will in this children’s book as he “fights off” his rival, gluten. I’m encouraged about the great review from registered dietitian, Amy Jones.

Buy on Bookshop.org | Buy on Amazon

Violet and the Crumbs: A Gluten-Free Adventure

Filled with pluck and humor, this informative story provides a great opportunity to discuss this increasingly common condition with children who have celiac disease and gluten-intolerance as well as those who know people who have it and are seeking to learn more about it.

This book has been approved by the Celiac Disease Foundation.

Buy on Bookshop.org | Buy on Amazon

Joe Vs. the Ce-Monster: Health Stories for Kids: Celiac’s Disease

This Celiac Disease children’s book is one in a series of “Health Stories for Kids” by Brian Wu. Currently free on Kindle, this book offers a parent section and glossary.  KINDLE ONLY

Buy on Bookshop.org | Buy on Amazon

Ainsley joins the Silly Yak Club

Sometimes living with Celiac Disease makes you feel alienated. The focus of this children’s book is that we don’t have to be alone. Many reviews state the illustrations are adorable!

Buy on Bookshop.org | Buy on Amazon

Andrew joins the Silly Yak Club

“A sequel to Ainsley joins the Silly Yak Club. Join Ainsley as she guides her cousin Andrew through his journey as a new member of the Silly Yak Club, and picks up a few unexpected friends along the way.”

Buy on Bookshop.org | Buy on Amazon

Beyond A Gluten-Free Dream

Review on Amazon from a Purchaser –

Wonderful children’s story about handling the sometimes confusing and overwhelming feelings that come with being diagnosed with a food allergy– in this case, celiac disease.

The author uses the opportunity to share a hopeful, positive message about taking care of one’s body and thinking outside the box when it comes to making life changes. The story will make you want to explore new ingredients too and a few simple, child-friendly recipes are included at the back!

The main character, Livie Bloom, is a bright, spunky, energetic, and fun girl. She is brought to life by the artist with great imagination, an attractive color palette, and tons of little drawn details to delight readers of all ages. Would recommend 100%!

Buy on Bookshop.org | Buy on Amazon

Kids Cook Gluten-Free: Over 65 Fun and Easy Recipes for Young Gluten-Free Chefs (No Gluten, No Problem)

All the other books on this list are about learning how to live with Celiac Disease. However, this cookbook is written by and for kids with Celiac Disease, to learn how to cook gluten free. The parents, Kelli and Peter, have written many other cookbooks, including a gluten free pizza cookbook. 

Buy from Bookshop.org | Buy from Amazon

Cooking with My Dad, the Chef

70+ kid-tested, kid-approved (and gluten-free!) recipes for YOUNG CHEFS!

Another gluten free kids cookbook, written by a chef and his daughter who has Celiac Disease.  Plus, each recipe has been kid tested and kid approved by America’s Test Kitchen Kids’ at-home kid recipe testers (15,000 families and counting!)

Buy on Bookshop.org | Buy on Amazon

Other Children’s Books about Celiac Disease?

What other children’s books about Celiac Disease have you read? More great books exist, but some are no longer in print. Please leave comments below about what books or resource you found helpful for you or your children. Looking for books geared towards adults? Visit my link on 5 Celiac Disease Books You Should Read.

**Please know I belong to the Amazon Affiliate program, and all links within this post are affiliate links. Purchases made through those links help support this blog with no extra expense to you. Thank you for your continued support!**

ALL IMAGES FROM AMAZON

Originally Published March 2020

The post 15 Children’s Books about Celiac Disease appeared first on MI Gluten Free Gal.

When it comes to Celiac Disease, misconceptions abound. We live in a time with uninformed doctors and ill-advised celebrities who will tell you anything. Many days it feels like society is clueless. I asked my fellow gluten-free friends what Celiac Disease truths they wish everyone knew. Today, I share their responses, as well as some of my own pet peeves.

1. A little bit of gluten can hurt a lot.

I recently asked my followers on my Facebook page, “what is one thing you wish people knew about Celiac Disease?” Immediately, my friend Tracy replied, “A little bit of gluten isn’t ok.” Did you know it takes as little as 1/64 of a teaspoon of gluten to cause intestinal damage? Some may feel that this should be cause for us to never leave the house. However, precautions to eliminate cross-contact can be taken and we should never allow this disease to rob us of our life!

2. You cannot outgrow Celiac Disease.

I talk to newly diagnosed patients all the time. As the chairperson of our local support group, our local gastroenterologist even directs his patients to call me. Once a patient stated he heard from someone else that after a while he can eat gluten again. ABSOLUTELY NOT. Celiac Disease is a lifelong disease. There is currently no cure, and no FDA approved pill you can take to allow you to eat gluten again. While your villi may return, and your antibody levels may return to normal, the gluten free diet is not a cure. You still have Celiac Disease.

3. A gluten free diet is not a weight loss diet.

I think of all the Celiac Disease truths, this one grinds our gears the most. We do not follow this diet to lose weight. Quite the contrary, people newly diagnosed with Celiac Disease tend to gain weight. Often they find themselves with elevated cholesterol levels as well. Gluten free foods are not fortified with vitamins and often contain more sugar and fat than their counterparts.

4. Pregnancy will not “cure” your Celiac Disease.

You may think of all the Celiac Disease truths, this would be obvious. You may be asking “how is this even a thing?” Truth be told, I had one person tell me her pregnancy cured her Celiac Disease. Simply not true. While evidence DOES exist that pregnancy can ameliorate symptoms in those with autoimmune diseases, it cannot CURE any of them. Click here to read more on this phenomenon.

5. Celiac Disease is not a figment of our imagination.

Of all the Celiac Disease truths, this is one medical personnel to need to learn the most. Many doctors dismiss patients pre-diagnosis as simply having anxiety disorder and a nervous stomach. I have heard too many tales of patients dismissed and given anti-depressants instead of adequate medical care. While it remains true that the malabsorption can lead to anxiety and depression symptoms, the underlying cause is still our autoimmune disease.

6. We hate asking questions about food prep as much as you hate hearing them.

To our dear friends in restaurant industry, we get that we ask a lot of questions. However, we hate having to quiz you about how our food is prepared just as much as you hate hearing it. Please know we did not choose this to be trendy or difficult. Also, please feel free to ask US questions. You can ask me what my symptoms are anytime. I will gladly help educate you on Celiac Disease truths, so that in turn you may train a fellow co-worker or learn the symptoms that may save a friend or family member!

7. Celiac Disease affects our entire bodies, and may take us days to recover.

Did you know that gluten ingestion elicits over 300 different symptoms in those with Celiac Disease? My symptoms may not be your symptoms. For me, accidental ingestion makes me EXHAUSTED. Among the Celiac Disease truths I share today, please know that we all react differently. Some may feel better after a day after accidentally eating gluten. Some may take a week or even two before they feel “back to normal.” Be gracious, and trust us when we ask you to not swap serving spoons at dinner!

8. We don’t want your pity. We want your support.

My friend Sarah D. brilliantly pointed out this truth. Yes, living with Celiac Disease can be hard sometime. But for the most part, life can be pretty fantastic. We can walk and dance and talk and joke. We simply can’t eat gluten. We don’t need your pity or sympathy. We need your encouragement and your support and your understanding. Every once in a while, we need you to be a voice for us, when we can’t speak up or are tired of doing so.

9. Bullying is real, and we’re tired of being a punchline.

I previously wrote about food allergy bullying on my site. When I asked on Facebook what Celiac Disease truths we wished others would know, a man shared my post. He admitted that he used to joke about gluten-free dieters. That is, until his mom was diagnosed with Celiac Disease. Then he saw just how violently sick it made her. Folks, we need to remember to be kind. We often don’t know what another has walked through until we experience ourselves. Please show compassion versus callousness.

10. It really “burns” us when you insist you can “cook” the gluten out of something.

Among all the Celiac Disease truths I’m presenting here, I need everyone to understand this one. The number of times I’ve heard restaurants say “Our pizza oven is hot enough to burn the gluten off” is more than I can remember. Gluten is a protein found in wheat, rye and barley. It is not a bacteria that can be “killed.” So please, make sure there is a barrier between my food, and any surface that previously had wheat or malt on it. Because trust me, my body will know.

11. Gluten free food can taste amazingly delicious.

I usually take jokes about Celiac Disease in stride. I try to let many things roll off my back. However, what unnerves me most are people who automatically think anything gluten free tastes bad. Our community may be partially to blame for this, as we can be vocal about our likes and dislikes. However, I know gluten free cooks and bakers that create AMAZING things. There are so many more things we CAN eat than we can’t eat. For example, this naturally gluten free quiche pictured above.

12. Celiac Disease is not a food allergy.

Again, when I asked my Facebook page community what Celiac Disease truths they wanted others to learn, this was towards the top of the list. While some may use the word “allergy” when dining out, please know Celiac Disease is NOT a food allergy. They trigger different reactions in the body, and diagnosed very differently. (Read my post on how to get tested for Celiac Disease accurately for more info.) Food allergies can be instantaneously life-threatening, and require immediate medical intervention. Therefore, let’s make sure to reserve the seriousness of this word for those who desperately need it.

13. I am not an overprotective parent.

While Celiac Disease may not cause anaphylaxis, it still requires serious attention. So chill when your fellow mom asks a gazillion questions prior to a playdate. We know all the places gluten likes to hide in foods. It’s not that we think you’re incompetent or uncaring. We just know how vigilant we have to be in our own homes. This escalates a hundred-fold when we start talking about making sure our kid is accommodated in school. Really, we’re not trying to be difficult. We simply want to take care of our kid as you would want us to take care of yours.

14. Do not exclude us from social events because of our disease.

Often, when it comes to these Celiac Disease truths, we excel at advocating for others. Especially our kids. But if we’re really honest, being excluded from events and friend gatherings as adults stings just as much. Even if you’re going out to eat someplace,  please invite us anyway. We care more about our friendship and community than food. Or at least we’re trying to.

15. Regular sourdough bread is not safe for those with Celiac Disease.

This, of all the Celiac Disease truths, really drives me nuts. Sourdough made with wheat flour is NOT safe for those with Celiac Disease. I fail to know where this idea even started. Maybe people confuse distillation with fermentation? Sourdough, made from regular wheat, still contains all the gluten particles with which it started. So please stop trying to feed it to us. If you have Celiac Disease, please stop passing this falsehood on to others. Our health depends on it!

So a big thank you to my Facebook friends, followers and fans, who shared their hearts on my Facebook page. Without your voice, this list of Celiac Disease truths may never have been heard. A big round of applause for those who advocate for truth about this disease and diet every day. It takes a village, that’s for sure.

The post 15 Celiac Disease Truths We Wish You Knew appeared first on MI Gluten Free Gal.

It All Started In a Facebook Group

I found myself commenting in a Facebook group the other day. Someone was newly diagnosed and had questions. I offered answers. Another woman newly diagnosed with  Celiac Disease admitted she still ate gluten every few days. I responded sharply to her. 

But now I’m not sure that I handled it well. Later I was humbled as I remembered I too was once a Celiac cheater. Therefore, I want to share my story, explain why we need to discus this, and offer suggestions if you want to help someone who also wrestles with this.

I Didn’t Always Stick to the Gluten Free Diet

Maybe Celiac cheater isn’t quite the right term. Because “cheat” invokes feelings of shame, which isn’t my attempt. I’m trying to educate. See, like this young woman, I too ate gluten despite my Celiac Disease diagnosis. Those first two years of my diagnosis were rough. (In this other woman’s defense, she received her diagnosis less than a year prior of our Facebook discussion.)

My dad and my grandmother, both diagnosed with Celiac Disease, also fell into the Celiac cheater category. My grandmother never followed the diet in my presence. Neither did my dad. (I share this and more in my Celiac story about my diagnosis.) 

It’s Tough To Eat Gluten Free When You Have Little Support

In addition, my mother was in the medical industry and not the most helpful in making foods I could eat. My significant other at that time was a paramedic and told me that it was all in my head and that I had “more problems than a third world country.”

To say that I did not have positive Celiac role models or health support at the time would be an understatement. At the same time, I started my student teaching. My classroom teacher was far from supportive. I distinctly remember leaving her room and hiding under a table after a stressful day. That time period was, in a word, rough hell.

Our Medical Community Fails to Address the Social Side of Celiac Disease

When I was first diagnosed, my gastro passed me off to dietitian. She told me what I couldn’t eat. No discussion of social stigma.  There was never a serious “sit down heart to heart” about the dire seriousness of Celiac Disease. In 2002, I met the man who is now my husband. That’s when things started to change.

Why? For once I had someone in my corner that was concerned about my health and needs. In addition, I finally had time to join a support group that gave me advice and helped me to not feel alone.  (Click this link for a list for Michigan Celiac Disease Support organizations. ) Third, I was finally able to work consistently enough to buy my own Celiac-safe food!

How My Lack of Adherence Impacted My Body

While I did take it more seriously, this gal was far from perfect. I ate regular cake at my wedding in 2003. As most with Celiac Disease do, I didn’t want to make a big deal about it. However not following this medically necessary diet has its consequences. We were never able to conceive. My teeth are discolored from years of calcium malabsorption.

To this day some of my extended family don’t take my needs as seriously now because I didn’t take them seriously then. I don’t know when I became strict with my diet. Maybe by the beginning of 2004. Two years of knowing, but wrestling. Knowing what I know now, I would NEVER CHEAT on this medically necessary diet. My hope is that you will not either. 

Why I Feel It’s Important to Tell You This Story

So why am I sharing my Celiac cheater story with you? One, I wanted to be transparent. I want my readers to know that I struggled just like everyone else. We only build community through honesty. That was one thing I lacked in my new diagnosis. Community.

This is not uncommon for those newly diagnosed. Family is unsupportive. Friends are unsupportive. Everything is new and scary and you just want things to go back to the way they were. So if you encounter another “Celiac cheater,” stop to learn their story. You may be the only one who has acted like they care. And you may be the one person to convince them that this is one diet they should never cheat on.

Compassion or Criticism?

I realize that I may be opening myself up to criticism. “How dare a Celiac Disease advocate cheat on her diet?! Let’s grab our pitchforks and get to stompin’!” Which brings me to my second reason for this Celiac cheater post. I want to remind us to all be compassionate to those who are still learning.

Maybe even those who have been diagnosed for a long time. None of us are perfect. In addition, we accomplish more with compassion than with confrontational criticism. Especially in our own community. If we have infighting among us, how will those who are undiagnosed take us seriously?

Expressing Your Concern to a Someone Not Adhering to Their Gluten Free Diet

Lastly, I want to discuss some ways we can help move those we care about who have Celiac Disease to stop eating gluten. It took my dad seeing the change in me after my diet compliance to truly change how he ate. Especially in the older population, we know SO MUCH more now than we did even 20 years ago. It may help to use “I” statements to get them to understand your concern.

“I love you and want you around. I care about you and want you to feel good and be happy.” Being diagnosed with Celiac Disease is a lifelong change and commitment. As my husband says “No one has ever been argued into Heaven.” Negativity and anger rarely become motivators in getting people to change.

Maybe Share These Consequences of Not Following The Diet

Infertility
Osteoporosis
Cancer
Dental Defects
Anxiety / Depression
Fatigue
Joint Pain
Mouth Sores
Neuropathy
Developing other autoimmune diseases
200+ more associated life-robbing symptoms

Sharing My Father’s Story

Can I share some of my dad’s story? He ate a non gluten-free diet for 10-20 years. For years he struggled with an autoimmune lung disease they couldn’t cure. They put him on autoimmune suppressants. And while his immune system was surpressed, he developed oral cancer. Doctors had to remove half of his tongue to save him. 

For years he was on prednisone to treat his lungs. Which in turn, lead to diabetes and other health issues. He couldn’t get a lung transplant, until he was 5 years cancer free. He died just a few months short of that. Can I say definitively that his Celiac Disease caused all this? No. But it could not have helped, either.

What if A Celiac You Care About Won’t Listen? 

What do you do if a Celiac cheater refuses to listen? What if they refuse to change? In the end, we need to decide which is more important – relationship or “being right.” We need to try to understand their story, as well as ours.

Why does it make us so angry? Do we feel their lack of adherence says that they don’t care about us? Or are we mad that life is harder for us because we take it seriously. Knowing our own motivations for our reaction are half the battle.

**Did it take a while for you to faithfully follow the Celiac Disease diet? Are there still times you struggle with temptation? Are you having difficulty convincing family members to stick to the diet? Please feel free to share your story below so we can support one another!**

Originally Published February 2018

The post Confessions of a Non-Adherent Celiac appeared first on MI Gluten Free Gal.

The Celiac Disease Stages of Grief

After being diagnosed with Celiac Disease, there is definitely a period of grief we go through. It’s a huge adjustment to change our diet. Some people in denial refuse to ever change their diet. And we all know that eating out gets more challenging.

However, we also need to embrace, as Shirley Braden puts it, the new health they can have. Or as Curtis Zimmerman puts it, the unexpected lessons that our Celiac Disease diagnosis can teach us. And while it may not be fair, others are watching how we handle our diagnosis. Are we constantly stuck in a stage of depression? Or are we willing to accept where we are the thrive despite our autoimmune disease?

I had a stage of my life where I didn’t always follow the diet. I lacked support. I share about that time in my life in this blog post. It wrote it after I realized I forgot how hard those first few years were, and how it reminded me that compassion goes further in creating community than condemnation.

The Downide of Social Media Community

Many of us used to go to Celiac Disease support group meetings. That’s where we’d talk about our frustrations. In community. Face to face with actual people with whom we would interact.

Now we belong to online Facebook groups, where we have distance through a computer screen. Where we attack others for eating foods that have high-fructose corn syrup or slam them for eating foods with genetically modified organisms.

Somehow that lack of face-to-face interaction has made us forget we’re talking to ACTUAL PEOPLE. Making untrue or hurtful statements are so much easier through a keyboard. Worse, online communities can force us out because they don’t want to hear an alternate side. Because there’s no relationship built, no depth of trust. It’s sad.

Who’s Our Real Enemy?

There’s a quote I love from Donald Miller. It’s a theological quote, but I find the last sentence appropriate in this situation. “This battle we are in is a battle against the principalities of darkness, not against people who are different from us. In war you shoot the enemy, not the hostage. (Pg 191, Searching for God Knows What, Donald Miller)”

Sometimes I wonder if the Celiac Disease community has become its own worst enemy. Some days, we’ve become this angry mob, ready to attack. Eager to publicly highlight those with whom we have disagreements. We fight over beer and cereal and make snarky remarks on Twitter. For God’s sake people, we’re better than that.

Instead, of fighting each other, we should be focusing our bigger issues. Generating attention on better education of doctors and patients. Making sure companies follow FDA rules to keep our food safe. Bringing to light the issues of food insecurity and the lack of gluten free options. There’s so much more we can do together, than divided.

Shaming Others Doesn’t Lead To Real Change

Some times I’ll hear my husband typing frantically on the computer. When I ask who he’s writing to, he responds, “Someone is wrong, on the internet.”

What should our Celiac attitude be towards untruth?  I know that there are those out there that share posts that have misinformation. What should be our reaction? I feel our first response should be to educate, not humiliate.

Attacking and mocking and arguing will not get us to our goal. After all, it may be someday that we are the one in the wrong. We may be the one that needs to listen to a gentle word to redirect our path.

Are Diagnosis Rates Impacted By Our Poor Attitude?

One more thing about having a negative attitude towards Celiac Disease. Have you ever considered it could be hurting diagnosis rates?

If we complain all the time about how hard life is or how bad something tastes, might that impact how others approach getting help? If all we share are the bad things, why would anyone want to live that kind of life?

I’ve heard people state their family members who refused to get tested because they refuse to give up certain foods.

We should be showing others how life can be so much BETTER. Not by highlighting how crappy it can be. I love this article from Amy Burkhart R.D. about the Ten Positive Aspects of a Celiac Disease Diagnosis.

Maybe We All Need a Pep Talk

Celiac Disease can be frustrating. However, let’s try to use that frustration to bring about real change. Not just for us, but for everyone. Think of those who are undiagnosed that need us to stand up for better testing. For more funding for research. For the simple rights to be treated with dignity in public. Did you know Celiac Disease is afforded legal protection under the ADA?

Living with Celiac Disease can be hard. Dining out can be frustrating. Finding safe food can be frustrating. Mistreatment from others can be frustrating.

So let’s try to find the silver linings in our diagnosis. Whether it’s been companies we’ve come to love, or people we wouldn’t have met otherwise, let’s try to show the world living with Celiac Disease isn’t the end of life. It’s just the beginnning.

How has your attitude towards your Celiac Disease diagnosis changed over the years? How has it changed who you are as a person? (I love Casey the College Celiac’s article on how it’s helped make her a better person.) Please feel free to share your thoughts below. 

Originally Published August 2017

The post How is Your Attitude Impacting Celiac Advocacy? appeared first on MI Gluten Free Gal.

I’m a rule follower. I check off lists, I color inside the lines, and balance my checkbook to the penny.
I’m also not a doctor, a nutritionist, or a nurse. Therefore, there are certain doctors whose word is law to me. Therefore, I trust when they require a biopsy for an accurate Celiac Disease diagnosis.

Up until this date, an intestinal biopsy is the “gold standard” in diagnosis. With my family history, my gastroenterologist didn’t even bother with a blood test. Instead, he immediately scheduled me for biopsy to see the extent of the damage. (Which may not have been the best idea, based on this info from the University of Chicago Celiac Disease Center.)  Fast forward almost 20 years. I moved to Flint and chose to find a new gastroenterologist. He’s doing another endoscopy, and I’m okay with that. (Update- My villi returned to normal.)

I once belonged to an online group for those with Celiac Disease. The reasons people in that group chose to eat gluten-free run the gambit. Their methods of “diagnosis” vary as well. Some diagnosed themselves without a doctor. Other received their diagnosis after only by blood test, and some with blood test and biopsy. Others still suffer from Non-Celiac Gluten Sensitivity. (Keep in mind, to date, there is no test for NCGS. However research on zonulin is promising.) Opinions in that group vary widely. Some people are woefully uneducated.

I’ve been a staunch “all must get a biopsy” supporter since I was diagnosed over a decade ago. However, after listening to some stories, I softened my stance a bit. Some don’t have insurance or wrongly told to go on a gluten-free diet first. Others were pregnant at the time, and some simply don’t feel it’s necessary. I simply wish people to gain an accurate diagnosis. In addition, I want people to follow their diet accordingly.

ESPGHAN Biopsy Guidelines

If you’re going to forego a biopsy, you need to make sure that you’re doing so under proper guidelines. The new NASPGHAN Clinical Guide for Pediatric Care guidelines enlightened me. However keep in mind these guidelines are ONLY for children. In a Michigan study, only children with TTG antibody levels greater than 300 fit the criteria for diagnosis, without biopsy. In that study , only ten of 174 patients would have been diagnosed simply by serology alone.  (An abnormal TTG level starts at between 10-15.)  Since that Michigan study, NASPGHAN completed their own research and suggested a TTG level over 100 is sufficient to diagnose without a biopsy. Dr. Fasano, who was once a big supporter of this, has started to question if this is the best way to go. Other intestinal issues may be missed without a biopsy.

A day without biopsy may be coming soon.  However, there are a few things that will never change. DO NOT diagnose yourself. Do not let “Google” become your doctor! I’ve heard stories of people misdiagnosing themselves and instead discovering they have intestinal cancer. DO NOT stop eating gluten prior to diagnosis. While one can get the genetic test to rule it out while eating gluten-free, you MUST be eating gluten for blood and biopsy tests to come back accurately. If your doctor tells you to stop eating gluten before the test, FIND A DIFFERENT DOCTOR. Also make sure they can read read the biopsy and blood test results accurately. Your health is too important to trust to someone who is ignorant.

If you’re not getting a biopsy due to fear, please know that it’s not that bad. I encountered worse pain at the dentist’s office. There is no “prep” with an endoscopy. If you doctor refuses to do it, FIND A DIFFERENT DOCTOR! If your insurance doesn’t cover it, I can only apologize. The ridiculousness of our health insurance system makes me want to punch someone in the throat sometimes.

It all comes down to this. Celiac Disease is a serious disease. Like Erica Dermer from Celiac and the Beast explains, there’s a huge difference between an intolerance and an autoimmune disease. It’s not a fad, it’s not a diet you can cheat on. (Sadly, statistics show those who do not undergo biopsy more often cheat on their gluten-free diet.)  If you can’t undergo a biopsy, live your life as one diagnosed with a serious disease. Don’t pick croutons off a salad. Don’t eat pie filling and leave the crust. If we don’t take our disease (and our need to follow a strict gluten-free diet) seriously, no one else will either.

What’s your story? Did your diagnosis involve a biopsy? If not, what were your TTG levels? How do you feel about the ESPGHAN guidelines?

The post Is a Biopsy Necessary for Celiac Diagnosis? appeared first on MI Gluten Free Gal.

“Type 1 D Looks Like Me”

Just like Celiac Disease, those living with Type 1 Diabetes look “normal.” It’s hard when people say “but you don’t look sick.” Living with Celiac Disease is hard, especially as a kid. However, living with T1D and Celiac Disease is even harder. Our former exchange student, Daniel, could have told you this and more.

Outside of genetics, people with these two diseases have a lot in common. Neither person did anything to “cause” their disease. Each has to pay attention to what they eat. Both have difficulty in social situations, which can increase feelings of depression. Left untreated, those with each disease can have serious long lasting complications. Even death.

My Type 1 Diabetes Education

I really didn’t know much about Type 1 Diabetes until we had a foreign exchange student. That’s Daniel, in the picture at the top of the page. I think he’s smiling so widely because my husband is covered in shaving cream. And he put it there.

I wish I could say all of my pictures of Daniel have wide smiles. Living with these two diseases took its toll on him. We received quite a crash course in the disease. While here, Daniel landed in the hospital with diabetic ketoacidosis. I learned that these two diseases have quite a bit in common.

Patients diagnosed with both diseases under the age of 2 are often diagnosed with Type 1 Diabetes first. Typically, an additional Celiac Disease diagnosis occurs within four years. Some of the symptoms of these two diseases can overlap, so it can be hard to pinpoint one prior to the other. Living with either disease should encourage us to know more about the other.

Recognizable Symptoms of Type 1 Diabetes

The Struggles of Living with Type 1 D

Having Type 1 Diabetes and Celiac Disease poses interesting challenges. So much of monitoring Type 1 Diabetes is keeping blood glucose levels even. Eating whole grains greatly helps with this. However, those on a gluten-free diet often consume fewer whole grains. Gluten-free foods are highly processed and are often higher in carbohydrates

As children with these diseases get older, they may “cheat.” In a online Type 1 D Support Group I’m connected to, parents often post concerns about their children who don’t take testing supplies or insulin with them. We sometimes see that same teenage “rebellion” in in the Celiac Disease community. The Dr. Schar Institute research indicates that 11% of teens with Celiac Disease knowingly ate wheat-based foods due to awkward social situations.

The damage gluten causes to the intestine affects the absorption of carbohydrates and insulin. This can lead to wildly varying blood glucose levels. This often alerts to the possibility of Celiac Disease. Below is a story of a young girl, pre Celiac Disease diagnosis, and how it affected her blood glucose levels.

How Gluten Affects a Child with Type 1 Diabetes

“Before her Celiac diagnosis our daughter would have wild rises or falls in her Blood Glucose. The worst instance was when we did a finger poke test. Her blood glucose measured over 300! We gave her some insulin and sent her out to jump on the trampoline to try to bring that number down.

About 30 minutes later, we tested her again. 34. It was crazy! It made it completely impossible to control her diabetes. Because her intestines were damaged by Celiac, she wasn’t absorbing the carbs we gave her at meal time like she should. But her body sometimes accepted the insulin fine.

So we would have terrible lows and then ridiculous highs when the food finally reached a healthy part of her intestines and was able to absorb the nutrients. Then we would give more insulin to treat the high and the cycle would continue. It was the wild fluctuations that led her endocrinologist to have her tested for Celiac. 

A Blood Glucose under 40 is at risk of coma. With sugar dropping that fast, we could have lost her. Thank God she was still awake and able to swallow. Many people cannot swallow or function at that low of a Blood Glucose. We have gel we can rub into her gums in that case or we can give her the big shot – Glucagon. Since removing gluten from her diet, we have not had near as many lows and certainly not as severe.

Type 1 Diabetes Resources

• JDRF offers backpacks full of resources. Learn more about their Bag of Hope and Adult T1D Care Kit. The Bag of Hope is geared towards children diagnosed with T1D, and the Care Kit is geared towards adults diagnosed with T1D. (And yes, adults can be diagnosed with Type 1 Diabetes.)

• Beyond Type One focuses on “education, advocacy and the path to a cure for Type 1 diabetes.”
• T 1 International advocates for the more than 1 million people in the world living with Type 1 Diabetes.
• I highly recommend following Milk and Honey Nutrition. A registered dietitian, she also lives with Type 1 Diabetes. She also has a post about traveling with diabetes that’s great.
• The American Diabetes Association sponsors Type 1 Diabetes youth camps around the nation. In the midwest, it is held at Camp Copneconic in Fenton, Michigan.
• I’m sure there are many resources I am forgetting. Let me know of others you use, in the comments below.

Type 1 Diabetes’ Impact on My Celiac Disease Advocacy

Our time with Daniel and learning about Type 1 Diabetes has had a profound impact on me. I stay connected with the local online JDRF group to provide support for those newly diagnosed with Celiac Disease. I keep myself abreast of T1D research, hoping with these parents for a cure. Watching the struggles these parents go through is heartbreaking and sometimes terrifying.

Sadly, Daniel died in November of 2016. I couldn’t go to Finland for the funeral or console his family. However, I can use my platform as a blogger to honor his memory by bringing awareness to the disease he struggled with daily. After all, the Celiac Disease community knows what it is to live with an “invisible” disease. We have to look out for one another.

Do you or a child live with Type 1 Diabetes? What’s your diagnosis story? What do you wish people knew? Please feel free to share your story below.

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