Friday, May 22, 2020

Celiac Disease- My Story

I'm dusting off this old blog of mine, which is having some very sad problems (it's not so pretty right now) to share a story I've been encouraged to share. This is a long one and if you aren't interested, that is ok but I'm sharing in case it helps someone else on their own health journey. 

This month is Celiac Disease Awareness Month so I  thought it might be a good idea to post an update on all that has been going on with my health the last 10 months or so. It’s been a journey and continues to be one but God has been so good and faithful in orchestrating all that has been going on and I wanted to share.

Back in July, as I was super busy getting us ready for the new school year and helping out with our church VBS, I began having symptoms that are my telltale signs that my Iron Deficient Anemia was back. These symptoms include lethargy, dizziness, headaches and most of all craving ice! I had gone almost 3 years without these cravings so I knew something was up. I saw my primary and requested labs be done to check my numbers and they came back low as I expected. This resulted in a referral and eventually an appointment to a hematologists at the end of August. 

Then in August, I came down with what we thought was 2 back to back stomach bugs but now know was my body telling me it had had enough. During this time, I was extremely tired and began being unable to take a shower without almost passing out. I was feeling so miserable and just plain worried about my health that I started doing some research to discover what would be causing my Anemia. God kept putting Celiac Disease in front of me so one night I began to research the disease and came to the celiac.org website. On there website, they have an assessment tool where they ask you questions that relate to the disease. It was at this time that I realized that things I’ve been dealing with for years, were connected to CD. The crazy thing about CD is that there are over 100 different ways your body can react and produce symptoms. For me, mine had to do with hormones including miscarriages, Iron Deficiency, joint pain and the inability to produce breast milk for my babies. This final one was the most depressing for me. I struggled to nurse all 3 of the kids and desired to do so so badly but my body was malnourished and couldn't produce what it needed to. When the assessment was complete, the results said “You have a high chance of having CD. Please contact your doctor.”


Now why would I believe this test at all? One, I have 2 family members on either side of my family who have been diagnosed for years. Two, it was crazy to see how many things could point to CD when I thought it was only stomach issues. 

Fast forward to my hematology appointment on August 26th. I was in the middle of week 2 of my stomach issues, I felt awful and so weak and just plain didn’t feel good. I was seen by a very rough Hematologist who basically said that my numbers really weren’t that bad and that he didn’t think I was really anemic. In this whole time, he barely looked at me. He told me what he thought he’d recommend for me; coming back to see him in 6 month to see how I was doing, then asked, “Does that sound good?” He finally looked at me in the face and I said, “NO.” I told him I was tired of feeling so badly and that I wasn’t okay with what he was saying. I’ve walked the Anemic road for over 15 years and I know how my body feels. At this point, I felt like he finally saw me and said, “You definitely look anemic but your numbers from a month ago aren’t low enough for me to do anything about. How about I run your labs right now and we can go from there?” I agreed and also asked for a referral to a GI doctor since we had discussed the possibility of Celiac Disease. 

I was so frustrated walking out of that office that day but I was also thankful that his eyes were opened to seeing me and that he ran the labs that day. Three days later, I received a call from the Hematology department telling me that they were ready to schedule my iron infusions. I was confused because I was unaware of what my numbers were…well guess what, they were low enough for the infusions! The following week, I began my 2 week long every other day trek to La Jolla for these infusions. Their system is different from ones I’ve experienced in the past. While going to La Jolla for 2 weeks was a disruption to our life, I was finally able to start feeling a bit better. 

We also decided on August 26th that I would try a Gluten Free diet until we left on our trip 3 week later. We wanted to see if I would feel better in general and at this time, didn’t know when or if the GI referral would come through. After a week on this new diet, I began to see a difference. My stomach issues started to decrease, the chronic cough I’ve dealt with for over 6 years lessoned and I just felt better. We went on our trip to Maine and Massachusetts, where I remained *mostly* gluten free with the exception of a few meals that then made me not feel so great.


When we returned home, my GI referral was waiting. I immediately went back to the Celiac Foundation website to see if there were any recommended doctors in San Diego on my health plan. I found one and God orchestrated all the pieces for referrals to be changed and appointments to open up. I met with this doctor on Oct 25th. I told him my symptoms and my experience with a gluten free diet and he told me that he suspected CD. He ordered a Celiac blood panel, the first step in the process, but also ordered an Endoscopy for November 8th. The endoscopy is the standard for a confirmed diagnosis of CD. When I arrived at my procedure, my doctor came to see me and said that my numbers were off the charts. He said that based on that, he was 99% sure I had celiac disease and would verify with the procedure. After I woke up from the procedure, I saw him again and he said again that he was almost positive the biopsy would come back as a confirmation of what he thought. This began our journey into the world of Celiac Disease.

I went home that day totally overwhelmed by what I found out. I had my suspicions but to have the confirmation... it hit me like a ton of bricks. I was sad that this was my lot but so very thankful to finally have some answers. In true Samantha fashion, I bought a bunch of books and began my research process. I like to know everything I can about something I am dealing with so that I can be as prepared as possible. We dove headlong into a whole house cleanse and turned our kitchen into a completely gluten free kitchen to make things easier for everyone. Is this necessary with CD? No but with having little kids who aren’t as responsible as is needed to stay safe AND since I cook most of the 3 meals each day, we decided this was the best course of action.

I’m not going to lie, November and December were some pretty dark months. I experienced all the levels of mourning multiple times, made worst by missing out on favorite holiday foods and many baking experiments gone wrong. This way of life is an expensive one and it added to the despair I felt. On top of it all, we kept finding products we thought were gluten free but weren’t. Gluten is hidden in so many products and I spent much of the month and into January feeling pretty crumby. I was riddled with extreme fear of eating anything and anywhere other than at home. I was afraid to eat what others cooked so I just made my own. I didn’t trust any foods and the anxiety I experienced was high. I had dreams each night about eating food at restaurants or others homes and they were all anxiety causing. During this time, I went to Instagram searching out resources and others who shared their experiences and found quite a few. The problem with this is that some of these accounts caused more fear and anxiety, while others were a great help.


Through social media, I found a Registered Dietian who also has CD and that is her primary target group. After 3 month of my diagnosis and still not feeling better, we decided to hire this Dietian to help me through this process. We began out journey together in February. At this time, she asked that I also cut out soy, dairy and caffeine so that we could see what was the culprit of some of my ongoing issues: heartburn, constipation, persistent dry cough (6 years) and overall stomach discomfort. I had also gained about 20+ pounds in this process and couldn’t figure out why. She also put me on a probiotic and had me track my foods. 

Over a 2 month period of time, we discovered many things that are causing me problems. I can’t eat many vegetables and if I do eat them, they need to be cooked. I’m living on cooked bell peppers, carrots, sweet potatoes, zucchini and broccoli. Thankfully these are all things I like to eat! Based on my symptoms, she recommended that I get tested for SIBO (Small Intestine Bacteria Overgrowth). This is a common complication of living with Celiac Disease for as long as it seems I have and treatment is a high dose of antibiotics and a low carb, low sugar diet to starve the bacteria. When I first called my doctor, it took about 2 week for them to send the referral over. I then called to schedule the appointment for the test and they told me they were booked out through May and that they still hadn’t processed my referral so I needed to call back. I was so discouraged because I just wanted to feel better. My food options are greatly limited, I still don’t feel great and I have continued to gain weight. But God in His goodness, showed up and when I called to see if I could schedule my appointment, the lady found on for me the following week!!! I was so incredibly grateful! 

On March 11th, I went into the office to take this SIBO test. How it works is I was to “fast” the 24 hours before by only eating rice, white gluten-free bread, chicken and eggs. I could only drink water and plain tea and I couldn't eat anything after 7pm or drink after midnight. The next morning, I drove back up to La Jolla for this test. How the test works is, your body produces bacteria to help with digesting your food and as a result produce Hydrogen and Methane gases which you breath out. Those who have SIBO produce higher levels then normal so to conduct the test, they have you drink a sugary substance with some water (Praise the Lord!) And then measure your gas levels every 30 minutes for 3 hours. You breath into a bag that holds the gases and then they push the gases into a machine to get your levels. My base level number for both gases was 7. For Hydrogen, anything over 20 ppm, is a positive for the infection and my numbers were over 200. For Methane, a positive is anything over 10 and I was over 40. 

Then Covid struck. My doctors office shut down because they are a private practice and I was left in the dark. Through this time, we prayer about what our next course of action would be. In April, we decided to give a Naturalpathic doctor a try. I had done a lot of research and found that I could kill this Bacteria in this was, so we thought "why not?" I am currently in the process of fighting this lovely Bacterial Infection and am now on an even more restrictive diet called the Low Fodmap Diet. It is temporary and has been a challenge in the time we are living but I'm so hopeful that healing is happening and hope that I can get back to eating most food again in my daily life.

 I am thankful for the wisdom God has granted me as I've walked this journey. It's had a lot of ups and downs and there are still a lot of pieces that are still uncertain. Celiac Disease has wrecked havoc on my body for a long time which means there is a lot of repairing that needs to happen in the process. As my Naturalpath has said "This will be a Marathon not a Sprint." 

If you have any questions or want to know more information about Celiac Disease or SIBO (not always connected to CD), please let me know. I've done a lot of research and know more about the digestive track then I ever thought I wanted to know 😬😂. 

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