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.

“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.

The post Connecting Type 1 Diabetes and Celiac Disease appeared first on MI Gluten Free Gal.