Celiac Disease – 10 Things I’ve Learned

I am frequently asked questions about Celiac Disease and how we got Samuel’s diagnosis and what the biggest challenges are in living with Celiac Disease. Here are the answers to many of those questions {with cute full of life pics of Samuel} – and remember I’m not a doctor, but rather a mom, an advocate sharing her experience so please seek out medical help if needed. The biggest thing? You will find a new normal.

1. The biggest challenge in Celiac Disease was getting the diagnosis. It took months and months for doctors to figure out what was wrong with Samuel and even then the Celiac Disease test was just thrown on their lab list after I asked them to include it. It should NOT be this difficult to get a diagnosis. The initial screening is a lab test. Samuel was lucky – he was diagnosed fairly quickly {within six months of me constantly going in questioning symptoms}. However, he was crashing rapidly and ended up in the hospital twice due to the slow pace of diagnosis.

2. You cannot cheat. Samuel can never have gluten. Ever. Any bit of gluten damages the intestinal villi and starts the cycle of disease again. Celiac Disease is an auto immune disease not simply a gluten allergy. Untreated Celiac Disease can lead to another list of health problems including things like diabetes and intestinal lymphoma. It is important to distinguish between Celiac Disease and a wheat or gluten allergy.

3. When Celiac Disease is left undiagnosed it compromises the immune system. Samuel was chronically ill prior to his diagnosis {via a Celiac Panel and endoscopy} and since being diagnosed has not had the chronic illness that had been a constant in his life. In fact, prior to diagnosis he was sick every 3 weeks and now it has been 4 months since he’s even had a cold. Only difference? No gluten.

4. Celiac Disease can show up at any time. If you have a family member with Celiac Disease your risk of having the disease shifts to around 1 in 20. Make sure to not eliminate gluten before your have a Celiac Panel as you must have gluten in your system in order for the panel/lab test to be accurate.

5. Gluten Free Food can taste great. When our family first started eating family meals gluten free the options felt limited, but now, 18 months later, there are few dishes that we used to enjoy that we don’t enjoy now. It takes a bit more time, and yet, it’s very doable. Remember how I said the biggest challenge was getting the diagnosis? Well, often people will ask if it’s eating gluten free. But, honestly, even though it’s challenging I remember that eating gluten free equals life for Samuel. And that? Changes perspective. Quickly.

6. Playdough should not be played with by individuals with Celiac Disease. Playdough contains wheat – wheat gets on hands and then inevitably into the mouth. Also look for bath products {and cosmetics for women} that don’t contain gluten.

7. Eating gluten free is more expensive – if you rely on packaged foods. If you eat a great deal of fruits and veggies it is not nearly as expensive. Find products you love and stick with them. I find a great deal of our favorites at Costco, we love Udi’s bread, and I order my flour via Amazon {Gluten Free Mama, Mama’s Almond Blend Flour, All Purpose Flour, 32-Ounce Pouches (Pack of 2) – that’s our favorite} and I’ve learned to stock up on gluten free items that have a deep discount at our local grocery store.

8. Food is not always clearly labeled. Be prepared to contact food manufacturers and restaurants. Contact is good – it brings awareness. I’ve spent a good time talking to various companies and am grateful to chat with them about the importance of labeling, of providing gluten free food, and then I thank them for their time. Grin, if you ever see me in the grocery store, on my phone, while reading labels chances are I’m talking to a company about their products. In fact, just last week it was to verify that a certain spice blend was gluten free {thanks McCormick}.

9. Keep copies of your labs and medical information. Since Celiac Disease can compromise the immune system I know that when Samuel is sick that the doctors very quickly are trying to assess if it’s Celiac Disease related or just a cold/sick. I keep a copy of all of his labs {it’s a thick folder} with me so that I can simply hand over the labs so they have a baseline. This has helped him avoid lab draws twice — this is important when you’re two. 🙂

10. Find support. I’ve found great support – from his pediatrician, to my family {that pic below is of my Dad, my sweet Dad who has prayed and helped so much, with my Samuel}, to my friends, to online groups {celiac.com}, to online friends, blogs, and to the forum at Udi’s Gluten Free {where I’m a leader}. It truly helps to chat with others who are in a similar situation and who can offer advice, agree with the challenges, and can give support.  Part of my goal is to be a voice of encouragement and support in the gluten free world.

That’s it – ten things I’ve learned in the past 18 months. Do you have any other gluten free questions?

One last thing – as part of be blessed to be a community leader for Udi’s Gluten Free I get the honor of participating in monthly chats. This month I’ll be at two including one that is on Monday, July 30 at 8pm ET. Here’s the link Udi’s Gluten Free Live Chat Link, but don’t worry, I’ll remind you as well. And if you follow my facebook page I’ll put the notice up there right before it begins. The topic this time? Food Sensitivities versus Gluten Intolerance and Celiac Disease and the various testing needed.

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