A Gluten-Free Vegan Mom Who Knows

A raw, grain-free, corn-free, soy-free, oil-free, celiac mama raising her two healthy celiac girls.

Celiac Disease: Neurological Symptoms after a Gluten Exposure

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When researching Sydney’s non-itchy, ever-lasting rash tonight to see if her rash may be connected to Celiac Disease, I came across this article: “What I want to know about Celiac Disease”

Rash

 

Alysa’s raw emotion (in the above article) resonated with me more so today because after Gregory came home from work, he asked, “How’s your stomach today?” Me: “Better than yesterday. It didn’t hurt as much.” Greg: “Mine too. Our bodies are finally starting to heal from our trip.”

We got gluten sick while in Orlando multiple times causing us longer recovery times.

However, after our girls were snug in their beds tonight and after Greg and I began talking about other topics, I started crying.

Greg said: “I wouldn’t have brought that up if I knew it was going to upset you.” I then admitted that that wasn’t why I was crying. I was crying because I’ve been struggling with the “gluten blues” for the last several days (yesterday was the worst as I had a tension headache from my shoulders, up my neck and into the back of my head and I didn’t have a reason why I was so stressed and tense of which is normal after an exposure to gluten).

My gluten blues are worse than I’ve experienced in the past year. When I get the gluten blues, I feel like I am trapped under water and I cannot find the surface as I feel anxious, sad and sometimes depressed, but this is one of my normal neurological symptoms in addition to foggy brain after a gluten exposure, and the good part is that I know that I just have to wait for it this all to pass as I drink lots of fluids, meditate as much as possible, and as I am now at ease that we are back in our GF bubble.

I can completely relate to Alysa when she shares: “I want you to know that I get anxious, depressed, frustrated, and short-tempered when gluten enters my body.  I try to stay away from my family as much as possible so I don’t say anything I will later regret, although it inevitably happens.” This week, I called my sister after I sent her a text message regarding my current struggles as I declared that I am a horrible mother because I yelled at my girls while I was trying to get them to complete their schoolwork before getting Syd’s blood work done, before buying produce for that night’s dinner and before their piano and dance lessons. I normally guide them through their schoolwork with endless patience, but my patience was gone. It disappeared and I couldn’t muster more up.

My sister has CD too and was diagnosed in 2004, four years before my diagnosis. Luckily, she’s always been my rock, my best friend, my soulmate and knows me better than most. I always tell my sister and my husband that they are my Pema Chodrons because their wise words/advise, their incredible insight and their reminders to focus on my breath always bring me back to center. Nevertheless, as always, my sister listened to me, gave me wise advice and then asserted that yelling at my girls while I wasn’t feeling well didn’t warrant a scarlet “BM” on my chest. Okay, so I was being hard on myself at the wrong time, but I still hated how CD is a whole body disease and causes me neurological symptoms in addition to the painful physical symptoms as I waited for my intestines and brain to heal.

Like Alysa, I hate that “I have to think about celiac disease all the freaking time.  Every time I put food or drink in my mouth, lotion on my skin, gloss on my lips.”

Celiac disease is a large obstacle, but the obstacle is the path, and during our vacation last week, Greg and I were both expressing our gratitude (after an exposure) for the disease because the CD inspired us to take our pretty healthy, mostly organic, vegan (me)/vegetarian (him), mostly non-toxic lifestyle to a healthy, whole-food, plant-based, non-GMO, organic, non-toxic lifestyle.

Cheers to getting healthy! Cheers to all the amazing people who work hard at trying to keep us healthy!

The staff at Babycakes NYC, Hilton at Bonnet Creek and the Disney parks were all amazing as they went above and beyond as always at minimizing our exposure to gluten as humanly possible while trying to keep us healthy during our stay in Orlando.

Babycakes NYC in Orlando, Florida

Sydney waits patiently.

Unfortunately with any exposure from incidental gluten cross contamination, the gluten that makes us sick goes unseen. The power of touch is incredible.

I also still make rookie mistakes from time to time after 5 years of living 100% GF (normally I don’t wash my hands before touching my food EVERY TIME when outside my home). We are also still learning details that we need to pay attention to in the future. Sometimes we cannot even figure out how we got gluten sick.

Gluten-Free Vegan food Disney - Orlando, Florida

Food we ate: La Luce at Hilton, Hilton at Bonnet Creek’s in-room dining, Babycakes NYC and Crystal Palace in Magic Kingdom

Gluten aside, we had an amazing vacation filled with laughter, love, happiness and joy. (We all were incredibly sad when our trip was over.) I am also grateful to have found several remedies that alleviate our immediate GI symptoms so that we could rally after an exposure. We now just need remedies to alleviate the neurological symptoms too!

Much Love! Priscilla

Fast food at the pool at Hilton at Bonnet Creek

Fast food enjoying poolside at Hilton at Bonnet Creek

Related Posts:

Our Gluten-Free Vacation: Hilton at Bonnet Creek

Gluten-Free Vacationing: Our Food When Vacationing in Disney World 

 

5 Comments

  1. I think it definitely helps to know we’re not alone in this. I’m sad that we both have to deal with this, but I’m glad I’m not the only one 🙂

  2. What do you take for your GI distress.
    We are planning a summer vacation and I am not looking forward to it as I
    know I will get glutened!
    Thanks for your help and I love you site.

  3. What are some of the remedies? Thank you.

  4. I’m just coming across you post and it’s such a relief to know we’re not the only family where both husband and wife have happened to have CD. I was diagnosed in early 2013 and my husband and daughter went mostly GF with me. Then he started to have reactions to gluten worse than me so went totally GF. Now he’s had two instances of cross-contamination that have made him sick for weeks (including emergency room visits that reveal nothing wrong), so challenging him with gluten to get tested is not an option. We feel so isolated when we try to explain and seems like no one believes food could be doing this to him. Thanks for your blog on GF oatmeal too…it was when we switched from the brand you recommended to Bobs Red Mill that his latest reaction occurred.

  5. The rash might be DH. DH is my worst symptom of CD.

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