I’ve been writing this blog for almost 18 months. I’ve been diagnosed with celiac disease since 2013. I read a lot of scientific information when researching for this blog. I read a lot of social media posts about celiac. Sometimes I feel like celiac has taken over my life. But along the way I feel like I’ve learned a lot about this disease. I also read things that also come up time and time again. So here are my answers to many of the questions on social media about celiac.
“Do I need a medical alert bracelet for celiac disease?” My answer is no. The reason you need a medical alert bracelet is to communicate with first responders and medical personnel in the event you cannot communicate with them. If the medicine they give you would put your life in jeopardy, that is the purpose of a medical alert bracelet or necklace.
In a life threatening emergency, they will not be able to determine if the medication they are giving you is gluten free. They will be trying to save your life. Furthermore, if they give you medicine that isn’t gluten free, they can manage any symptoms you may have, including nausea, vomiting, pain management, and diarrhea.
“Is this item gluten free?” This post normally comes with a picture of the packaging and/or the ingredients. Typically, the responses are useless. They run the gamut from “Yes, I eat it with no problems”, “I ate it and it made me sick”, “It isn’t certified so I didn’t eat it”, or “No it has ‘spices'”. These answers don’t help at all.
My answer is look it up for yourself and do the research. Everyone evaluates their risk differently. Some people will eat a product I would never eat and have no issues. Some people read labels and say, no way, while I might say okay. Having no issues is not an endorsement of a product’s gluten content nor is having symptoms, as symptoms are an unreliable indicator of gluten exposure.
Unfortunately, this is why it takes more than a year to get this diet right. There is a steep, steep learning curve on what gluten is and how it might be labelled. There are lots and lots of lists available online that will tell you the “coded” words for gluten in labels. Read several lists and if a certain word or group of words appear on several lists, it is probably true. If a word only appears on a single list, you might need to do some more research on the word.
The only exception to this rule is if it is certified gluten free. If it is certified gluten free, then the product is safe. Period. The company paid to have that product tested for gluten content to be less than 20ppm. If you think it made you sick, you are incorrect. Look at something else.
“What about Cheerios?” Nope not safe for those with celiac. I don’t care what anyone else says, they aren’t safe.
“I can only eat a few things without getting sick. What can I do?” This one is hard. It is a struggle. I’ve been on this particular struggle bus and it is difficult to know what to eat. My answer is to break things down to their simplest components – eat whole foods, preferably low FODMAP, and nothing processed for a period of six to eight weeks. Then slowly add foods back in and you should find things are a lot better.
“I got glutened and am miserable. What can I do to get better?” Time and treat the symptoms. If you have a headache and/or muscle aches, take a pain reliever. If you have nausea and vomiting, push fluids and if it gets extreme you may have to go to the doctor to get fluids. If you have diarrhea, push fluids, don’t eat, and if it gets extreme you may have to go to the doctor to get fluids. Otherwise, there is nothing anyone can do to make it better.
Activated charcoal is for poisoning. It will not stop the immune cascade that the gluten exposure has caused and will not affect the cascade once it has started. The immune cascade is what is causing the symptoms. The activated charcoal will not stop the problem that you are having.
“Is this rash, bump, hurt elbow, etc. celiac related? Probably not. Not everything is celiac related. I would first look for another cause before blaming celiac for your issue. I used to think everything was celiac related, but after a lot of experimentation I realized it wasn’t. For example, right now everyone is worried about Covid-19. Every cough and fever is not related to COVID-19, sometimes it is something else. My sister went through this and they were worried it was COVID-19, but it was strep throat. Just look for another cause before blaming celiac.
Dermatitis herpetiformis is considered a rare disease. It is unlikely your rash is dermatitis herpetiformis.
“Eating gluten free is hard and expensive.” Yes, eating gluten free can be challenging, but eating whole foods make eating gluten free much, much cheaper. For example, a gluten free pizza typically costs 2x what a normal pizza costs and is half the size. A bag of frozen french fries that weighs about 1lb costs about $2.50. A 5lb bag of potatoes costs about the same. Buy the potatoes, cut them into french fry shapes, then bake them or fry them. It takes a little more work (<10 mins), but in the end is much more cost effective. And you have more potatoes for mashed potatoes, potatoes au gratin, and baked potatoes too!
The potatoes are one example, but it is true for most any foods. Dried beans, rice, frozen veggies (read the label), and various other foods are often much cheaper when less processed. Also, for those that are busy working families and feel this is overwhelming – the crockpot, casseroles, and food prep days are ways to make this type of cooking work for you.
“I’m going to a wedding/party/dinner and I don’t know if they will have gluten free options. Should I bring my own food? Nope. First, call the host/hostess, explain your situation, and ask if they will have gluten free options. If not, eat before the event, pack a snack in your purse/pocket, and eat after the event, but you don’t need to bring food. You will not starve.
“Can someone interpret these blood tests results from my doctor?” I can but you should talk to your doctor. Also, no, blood tests alone do not equal an ironclad diagnosis unless the triple positive criteria are met and even then it might be suspect.
That is my answer to those questions and the reasons why. Very rarely do I deviate from those standard answers.
Also, in the age of COVID-19, please practice social distancing, wear a mask in public, wash your hands, and follow the instructions from your local public health officials.