This blog post was written on November 22nd, 2020 about the time period of October 2019 - December 2019 when I had been 3-5 months 100% gluten free.
Hello GF Friends! It’s been a while since my last gluten free diary entry. This has been on my mind for a while – one year to be exact – and I kept putting it off because this portion of my journey definitely brings tears when I think back. I’m sure I sound dramatic, but it ended up being a pretty dark time for me. I knew it was only temporary, so I thought if I waited till I turned it back around I could share some words of wisdom. However, it’s actually not fun to think back and relive those moments so instead I put it off and kept putting it off. In the meantime, I had a few friends, family members, followers, etc. reach out to me asking questions that directly relate to this blog post, so I’m very sorry that it’s taken me so long to share!
If you read my blog post titled, “Hi, My Name Is Kat & I Have Hypothyroidism + Celiac Disease.” and are newly finding out that you too have thyroid disease, celiac disease or are have similar symptoms I recommend reading this post. Or maybe you’ve already gone gluten free, but haven’t felt that super amazing feeling that everyone who has gone gluten free talks about (me included!) Either way, I recommend reading this post.
Keep in mind, the time frame on this post is October 2019 to December 2019 roughly 3-5 months after going gluten free.
3-Month Recap – “Dead Brain” & First Glutening
During my first three months of going gluten free I had this tough girl attitude of “this won’t control me.” I started researching every one of my favorite “fat kid” non-gluten free foods to see if they have a gluten free version or if any of these foods already are gluten free (starbursts is!) I was living off of frozen chicken nuggets, sushi, quinoa mac and cheese, popcorn, chocolate… you get the picture. Aaron was traveling a ton for work and although I thought I was feeling better right away, the exhaustion hadn’t subsided so I would order a lot of take-out to avoid the work of cooking for one.
This continued off and on and initially I lost weight right away from giving up gluten, but after a couple of months of eating whatever I want I slowly noticed the scale going back up and the bloating coming back. Obviously that is going to happen when you don’t eat healthy regardless if it’s gluten free or not, but in my emotional state I felt like “I showed them!” by still eating the foods I love. (Side note: I don’t know who “them” is, maybe the gluten gods? LOL. But that’s how I felt at the time.)
Before long I realized that I was putting a bandaid on my problem. I wasn’t getting abdominal pain or headaches like before. The bloating had gone done and I never really had serious digestion issues other than it being slow, but the anxiety, depression, and fatigue got really bad. Plus, the brain fog never truly went away. Actually, I started having this symptom that I called “Dead Brain”. I thought I was crazy until I confirmed that my celiac friend had it too.
“Dead Brain” Explained – If I went too long without eating, which maybe it was a normal amount of time between breakfast and lunch, but I had no snack or maybe I missed my lunch, which I could do in the past without issues, my brain would literally shut off. It happened on a work video conference over Zoom. I was so busy that I missed lunch and during the call mid-sentence I could not verbalize words well. It was hard to form a sentence and I got super frustrated. I know how to speak and form words to string together a sentence, but it was almost like I froze and the words that would make sense weren’t forming in my head. I mumbled whatever I could to pass the proverbial ball to the next person, but couldn’t help my embarrassment and shame for allowing this to impact my speech.
First Time Being Glutened – September 18, 2019 – My celiac friend had shared with me what happens when she has gluten exposure and how sick she gets. For the longest time I always thought that I didn’t have a gluten allergy because what she described never happened to me. This was until September 18, 2019. The last gluten exposure I had was over two months prior before I received my test results for celiac disease and that must have been enough time to get gluten out of my system. My celiac friend and I were traveling for work and went to a Mexican food restaurant in San Francisco. Mexican food in the United States is tricky because corn (corn chips, corn tortillas, etc.) is okay to eat, but if it’s fried in the same fryer as something that has gluten then there is cross contamination and someone with a gluten allergy cannot eat those items. Also, if someone or something touches gluten and then touches gluten free food then that would cause cross contamination too. This is exactly what happened to us. After being exposed to gluten you can feel the negative impacts right away (15-30 minutes) or up to 24 hours just like having food poisoning. It was terrible! I woke up the next morning feeling fine, but with a slight headache. I remember being on a Zoom call when it hit me. It was like I was severely hungover all of a sudden and kept getting worse. It started with stomach issues and then the headache was so debilitating that I had to lay back down. I texted my friend to confirm my symptoms and she had them too. The only thing I really could do at that point was to drink water, rest and let it pass. It eventually did about 5-6 hours later. I will share a whole blog post about this because it started happening once a month, getting much worse (one time I called my mom and told her I thought I was dying – yep, not a proud moment!) and I’ve gotten pretty good at preventing it, noticing the signs early on and having a go-to remedy. Until then, check out these articles for more information about being Glutened and what you can do by VeryWell Health, Im Aware, and Amy Myers MD.
4-Month Recap – Emotional & Hitting Rock Bottom
Before long, my anger and tough girl attitude faded away and instead I was just really emotional and exhausted. I felt down and didn’t know why or how to change my mood, which doesn’t happen to me too often. I’m usually a happy person who loves to be around others. I felt sad, but because I wasn’t just sitting around crying all the time I didn’t think it could be depression. I lacked motivation in finding ways to make myself happy, like doing the things I love, which looking back now is literally what depression is. Plus, I was so tired and always felt sick, like a cold or the flu was coming on. I wasn’t tired enough to go to sleep early or take a nap, but my whole body was exhausted and weak. After a week of work I would need the entire weekend to recharge, which is weird because I’m such a busy body with a schedule that is always booked solid and I used to have a great immune system. (This article from Celiac Disease Foundation goes deeper into mental health issues caused by celiac disease along with case studies. I’ve linked more research and studies from NCBI.)
Aaron wasn’t traveling as much for work, but it became super challenging to do some of the things we loved, which was eating out together. I would get frustrated every time we’d go to a restaurant because either they didn’t understand the allergy and I’d end up getting sick, or they’d mark items on their online menu as GF and when I’d get there they’d tell me “sorry there is contamination and you actually can’t eat that or eat here at all”. I felt super frustrated and defeated. I got into the habit of calling ahead and even then it was a 50/50 chance that the hostess knew what I was talking about. I finally started asking to speaking to managers and then it seemed impossible to eat anywhere. Also, I was distancing myself from my friends unintentionally because I didn’t have the energy to do anything or want to deal with explaining what was going on with me because I still wasn’t sure why I was feeling the way I was. I wasn’t feeling a ton better and at this point I was at 3 months into being gluten free.
Additionally I was super unhappy with my skin appearance. I was getting cystic breakouts that I really couldn’t do anything about and they’d always turn into a scab on my face and every once in a while I’d get one on my back or these occasional bumps on my hands. This had been going on for a while at this point and thankfully I made an appointment back in April (6 months prior and 3 months before finding out about celiac disease) with my husband’s Dermatologist that he started going to years ago through a referral from his sister. The reason I made it so far in advance is because Sarah Neumann, MMS-PA-C is literally a miracle worker and is that booked up.
My appointment was on Friday, October 18, 2019. This was less than 5 days after my second glutening, which was much worse than my first. I was having severe gluten symptoms all week like the anxiety and depression and wasn’t totally sure why. I didn’t know that after being glutened, although the headache and digestion issues are gone, the other things might stick around for a few days following. Walking into that appointment and first meeting Sarah she told me off the bat that I looked grey and it was a direct cause of vitamin D deficiency, lack of overall nutrients and inflammation. I handed her my blood work that I received on July 8th from my gynecologist who discovered my celiac’s disease. Sure enough, she said it showed that I was deficient in vitamin D and super low in most of my vitamin levels. My gynecologist said that my levels were okay, but Sarah was not happy with them. We talked about how I’m getting vitamin D and how difficult it is for our body to absorb it. She told me to no longer take it in pill form, but to take it in the liquid form as drops under my tongue and to increase the amount from the hundreds to the thousands. Along with a few other supplements like a very strong probiotic to help repair my gut, fish oils and a multi-vitamin chew. I shared my thyroid and celiac health story with her and we bonded over the fact that she also has issues with gluten. I told her about these weird little bumps I would get and when we reviewed products I had been using she was able to see right away that there were gluten ingredients. These products were hydrocortisone cream, face cleansers, lotions, serums, hair products, etc. There were some products that didn’t have gluten in them, but she did not recommend continuing use based on the chemicals or alcohol that was in them.
Next and most importantly, she explained to me that although I went gluten free that I have not let my body heal. I had been damaging my body for years and never gave it a breather from the inflammation I caused from eating gluten. My gut and intestines were so damaged that my body was not absorbing nutrients from food or digesting food properly. (This article on Beyond Celiac discusses this perfectly.) I thought I could eat whatever I wanted as long as it was gluten free, but I actually need to go to an even sticker diet that would promote healing and reduce inflammation. She didn’t give me an exact timeframe, but told me to start immediately and continue at least till the end of the year. It was definitely hard to hear and had a delayed emotional impact later on in the day. What made me realize how important this is for me to do is when she started describing how inflammation can impact your brain. Just like autoimmune diseases, inflammation can cause depression, anxiety, exhaustion, and bipolarism. An article by Psychology Today touches on this. In addition, fever, chills, fatigue, headaches, etc. as written by WebMD.
Embarrassing Long Story – That night I went to dinner with some girl friends and had been really excited to see everyone since we made the plans. We were going to a fancy steak restaurant with an elaborate menu that I had been dying to try. I should have planned better, but I was starving and going through that “Dead Brain” again before we were even seated. Once we were seated and I looked at the menu I realized that I couldn’t really eat anything based on my gluten allergy or the new anti-inflammatory diet parameters. Maybe I should have said “oh well I’ll start it tomorrow”, but if a medical professional tells me this is the one thing in the way of feeling better why would I wait one minute before doing exactly that. The girls decided to get wine, which I couldn’t drink, and appetizers that I couldn’t eat. Usually, it wouldn’t bother me, but I was so hungry that my brain wasn’t working and emotional I was upset that I was different and couldn’t join in with my friends. To make it worse one friend shared a story about someone in her life and how that person is acting a certain way that is making my friend very upset. The description of how that person was acting was literally everything I’ve said in this blog post about how I had been acting and feeling. I tried to suggest to my friend to talk to them because it could be something medically that is going untreated and the way they are acting could be symptoms of that. Even trying to get this point across was very hard for me to do and I felt very emotionally triggered by it. Plus, I wasn’t strong enough emotionally to say, “hey I’m going through that too.” When the waiter came around to take our orders and I had my laundry list of questions and stipulations for what I can/cannot eat, he told me that his wife has celiac disease and he’s so sorry for what I’m going through. He told me he would make sure that the kitchen would take good care of me and in that moment I started crying. Even though I could only eat grilled chicken and asparagus that was going to cost me an arm and leg, I hadn’t been to a restaurant yet that validated me and made me feel safe. It was a very touching and emotional moment that I couldn’t verbalize to anyone because I couldn’t process why I reacted that way. I would have loved to explain myself in a way so that they’d understand how I was feeling. Instead, I was utterly embarrassed and excused myself to the bathroom, but it seemed like once the water works started I couldn’t stop them. I contained myself enough to go back to the table. I ate my dinner and after about 4 hours as the group was finishing up a shared dessert and ordering more drinks I excused myself to go home. I never found a way to bring it up or explain it in the way that I wanted to. This was my rock bottom. I felt like a completely different person who I couldn’t recognize and at the same time I felt very guilty about the way I was feeling since I know everyone is going through something and some people were going through much worse.
5-Month Recap – Finally Feeling Better with the Anti-Inflammatory Diet
What was recommended for me was a strict version of the anti-inflammatory diet. Plus I needed to avoid alcohol and nightshade vegetables even though a lot of articles online about the anti-inflammatory diet do not mention this.
Nightshade Vegetables: (more information from Healthline)
- herbs and spices derived from these vegetables; cayenne pepper, crushed red pepper, chili powder, paprika (black and white pepper derives from peppercorns, which is not a nightshade)
- condiments like hot sauce, ketchup, marinara sauce, salsa
Foods to avoid:
- refined carbohydrates like white bread, white pasta, etc.
- desserts and processed snack foods
- fried foods or foods with trans fats
- sugary drinks and fruit juices
- red and processed meats
- margarine, shortening and certain oils like soybean or corn oil
- alcohol, even though some articles say red wine is okay
Foods to eat:
- Vegetables: Broccoli, kale, Brussels sprouts, cabbage, cauliflower, spinach, etc.
- Fruit: Especially deeply colored berries like grapes, cherries, strawberries, blueberries, and oranges
- High-fat fruits: Avocados and olives
- Healthy fats: Olive oil and coconut oil
- Fatty fish: Salmon, sardines, herring, mackerel, and anchovies
- Nuts: Almonds, walnuts and other nuts
- Spices: Turmeric, fenugreek, cinnamon, etc.
- Tea: Green tea
I followed the anti-inflammatory diet very closely for two weeks when I started to feel the cloudiness that was hover over my brain finally lifted away and the emotions stabilized. Also, the increase of vitamin D and probiotics helped a lot! I later shared this information with my dad and found out he was super deficient in vitamin D too. He explained that he was constantly getting sick and once he got a handle on his vitamin D he finally started to feel better. The reduction of inflammation and increase in vitamins was definitely the cure for my exhaustion, feeling sick and the emotional roller coaster that I had been stuck on for so long. Also, I started exercising more regularly, sleeping better and connecting with family and friends again. Plus, during the holidays I traveled a lot for work and didn’t get sick! I also started using essential oils religiously around this time for support with my immune system, emotions, digestion, sleep, etc.
I’ve since created a modified diet and then completely went off of it all together. I stayed feeling well and feeling fit for a while into 2020. About 9-10 months into the year and not following any dietary restrictions other than gluten free, being under stress from work and not sleeping well, I started to feel pretty bad again. Once I get to that place of lacking motivation of taking care of myself, especially when the whole world is dealing with a pandemic and an election year, it was hard to get out of that headspace. I was so proud of getting out of it a year prior that it pained me to find myself feeling a similar way again. It wasn’t nearly as bad or last as long this time, which was really good. All I needed was to recognize the symptoms and realize that this is something that my body will always revert to if I’m not careful. As long as I’m careful most of the time, I can definitely take those moments to enjoy myself with friends and family too. I heard it’s all about balance! I’m not perfect and I don’t have it all figured out, but I’m listening to my body and my mind, so that I can give them both what they need.