Today is May 1st, 2019 and May is Celiac Disease Awareness month. As many of you know, I was diagnosed with Celiac on January 6, 2012 and it changed my life forever. The disease almost killed me and if left untreated, it can kill people. I stopped breathing on April 28, 2012 and I am only here because Jesus saved me by a miracle in the power of the Holy Spirit. Too many people still do not know about or do not understand Celiac, and many (including some doctors) even mock the disease and those who have it. My prayer is that as Celiacs around the world share their stories, we can spread awareness and bring understanding about this life changing and potentially deadly disease.
The first and most important thing I want you to know about Celiac Disease is that it is not just an allergy. It is a genetic autoimmune disorder where a person cannot digest the protein found in wheat, barley, rye, and oats. A Celiac’s body actually views those grains as poisonous. The protein is called gliadin and that is what is called gluten. There is no cure for Celiac and the only treatment is a lifelong gluten free diet.
If I eat wheat or any of the other grains I mentioned, my body will go into a full blown autoimmune attack on itself and destroy the lining of my small intestine. That is what was happening to me for 10 years (from age 23 to 33) as I suffered from undiagnosed Celiac. It could also kill me by causing anaphylaxis. Eating oats is what caused me to go into anaphylactic shock and stop breathing. If you want to read more about that and how God saved my life, please read my post “My Lazarus Moment.” It was the most torturous pain I have ever experienced in my life and by all medical counts I should be dead, but God had other plans and He let me live.
When a Celiac eats gluten, the antibodies that are produced in the autoimmune response actually kill the villi in the small intestine. The villi are tiny hair-like structures that line the inside of the small intestine and they are responsible for the absorption of nutrients from the food we eat. If your villi die, then you become malnourished along with a host of other problems. When I was diagnosed on 1-6-12, I weighed 128 pounds. I am 6 foot 1 inch tall and my normal healthy weight was around 160-165. Like I said, Celiac almost killed me…and that was before the anaphylactic shock.
Undiagnosed Celiac disease presents itself with a variety of symptoms and it can cause massive damage to the human body. Before I was diagnosed, the first major symptom I had was acid reflux. I even took pharmaceutical pills to stop that, but it just made it worse (because only going gluten free would stop it). As time went on, it got worse and worse. I was having incredible gut pain, severe weight loss, low blood sugar, racing heart, my finger nails were brittle, under my eyes was very dark, my spine, muscles, and bones ached, severe nausea, chronic fatigue, and it attacked my brain causing headaches, depression, anxiety, extreme mood swings and irritability, irrational anger, panic attacks, short temper, and suicidal thoughts. When a Celiac eats gluten, the protein gliadin actually breaks through the lining of the small intestine and ends up spreading wildly throughout the body. That is how it can affect every part of the body, even the brain. The protein gliadin can actually collect on the brain and attack it much like someone with the protein on the brain common to the football injury called CTE.
The best way I can describe what it was like is that it felt like I had a swarm of wasps inside my head stinging the frontal lobe of my brain. It causes the section of the brain responsible for fight or flight to be at peak levels all the time and it was insane. Before I was diagnosed, I didn’t know what was happening to me. I thought I was losing it and I was going to die. All of that stopped once I went gluten free, but it took years to heal from the damage and my body is still not fully healed. Celiac is so much worse than people know.
Also, it is a very hard disease to detect and it is misdiagnosed and mistaken for many other diseases such as lupus and even cancer. The most effective way to test for it is by using a simple blood or stool test or simple diet elimination. They do not recommend doing an endoscopy as it is less than 50% accurate. My doctor did not recommend it for me and she actually told me it would have just caused me more pain. The problem with doing an endoscopy is that they go into the small intestine and take a sample (scrape some tissue), but if they hit an area that is healthy, then they say the person doesn’t have Celiac. The damaged villi are patchy and there can be healthy tissue right next to dead patches. If they don’t take a sample from a damaged area, then they give a misdiagnosis and the person keeps suffering. Blood testing and diet elimination are becoming the go to tests for diagnosis of Celiac disease.
Having damaged villi is not good. Due to malabsorption, I now deal with a separate condition known as Cachexia or more commonly “wasting syndrome.” Due to the damage in my small intestine I can’t gain weight properly anymore. I go through an up and down weight gain and loss cycle every few weeks where I get to 140 or 144 tops, then I drop back down to 134 and the cycle repeats. I call those episodes, and the days I am at the bottom are still hard days. The years of lacking the full nutrition my body needed hurt my muscles and bones and I am not as strong as I should be at my age of 40. I also deal with blood sugar issues now, especially when I get down into the 130s. Remember this: your entire health is in your gut. If your gut gets messed up, you get messed up. It’s that simple, so eat good and take care of yourself.
Celiac is very dangerous and I have to be very careful of cross contamination. I have not been out to eat since I was diagnosed 7 years ago. Even one tiny crumb of wheat bread is enough to cause severe suffering or even anaphylaxis. If my gluten free food was cooked in the same pan as gluten food, I would get sick and I could die. If gluten food touched my gluten free food, I would get sick and I could die. My food has to be certified gluten free from a gluten free facility to prevent cross contamination and that is not easy to find. I once ate some gluten free flavored almonds and afterwards I became violently ill again. We called the company and asked them about the facility and we found out they also make oat based products in the same facility. I could have died eating those almonds! Oats are not gluten free and they should not be allowed to make oat food on the same line as gluten free food. If you are a Celiac, you must do your research! Gluten free doesn’t always mean gluten free!
Mainstream companies like General Mills are NOT gluten free! Cheerios are NOT gluten free–they are made with oats! Frito Lay is NOT gluten free! Neither are all the other cheaply made mainstream foods that are made with GMOs and gluten. Their facilities are not gluten free either as they make a ton of wheat and oat based products. If you have Celiac disease, please do not be tricked by the mainstream companies! They just slap some fake gluten free label on their products, so they can make more money. The food must be certified gluten free!
Celiac disease goes beyond gluten free too. After my initial diagnosis, I soon found out that I was also no longer able to eat dairy, soy, eggs, or coconut either. I learned that through painful trial and error. The tips of the villi are what digest lactose, so when a bunch of villi die, the body can’t digest it anymore. I also cannot have caffeine, coffee, or alcohol. I don’t care about the alcohol, good riddance, but I do miss coffee. Celiac took away all of the foods I loved and the lifestyle I loved and the life I live now is very restricted.
I eat good, but everything has to be organic, Non-GMO, and gluten free and be dairy, soy, and egg free too. It is very expensive and very restricted. I can’t even eat animals that have been fed gluten grains or GMOs. We eat free range bison from South Dakota, free range Coleman chicken from Golden, CO (or Rosie’s chicken in California), and wild halibut from the ocean. If I ate chicken or fish that was raised eating soy, I would get sick. I can’t eat beef because they finish the cows on gluten grains and GMO corn to fatten them up. That would make me deathly ill!
Please do not eat GMOs either! They are made by Monsanto, which makes glyphosate (the cancer causing poison in their product Roundup). The “Roundup ready corn” actually has glyphosate in its DNA and it rots your gut and causes cancer. Would you pour Roundup on your food before you eat it? Then you don’t want it secreted from the inside of the food into your gut either! Monsanto is evil and they are killing people! Their BT toxin has killed many in India and glyphosate is making people sick and killing them all over the world. Their chemicals have been linked to autism, cancer, infertility, many diseases, and death. I could say a lot more about Monsanto and GMOs, but that will be for another time. Just do your research and don’t eat their GMOs!
We even have to bring my food with us when we travel and make sure the place we are going has all of our food available. That is why we vacation in California. We actually pack a few pounds of the free range bison we eat and get everything else we need there. Even if I will be away from the house for a few hours (like if we go shopping), I need to pack food because I can’t eat out anywhere. The disease controls my life now from the time I get up to the time I lay down. If I eat at the wrong time, my blood sugar gets messed up and it can make for a real tough day. If I eat the wrong thing or get cross contaminated, I can end up suffering terrible pain or I can end up dead. Sometimes I feel like a prisoner in my own body.
Gluten can also be found in lotion, toothpaste, shampoo, soda and juice drinks, and a bunch of other products, so we have to be careful with those too. The personal care companies really like to put oats in things too and I really have to watch out for that. If I used an oat based shampoo or lotion, I would go into anaphylactic shock and die (unless God did a miracle to save me again). See how this disease affects every part of a person’s life?
I suffered terrible pain for years leading up to my diagnosis and the first few years after diagnosis were torturous. I used to lay on the floor in cold sweats every night after vomiting and having diarrhea at the same time as my body detoxed itself over and over again. The gut pain was so bad that I could barely walk and I used to have blood sugar drops accompanied by such severe nausea that it would knock me to my knees for hours (I still get bad drops sometimes). I also excreted dead intestinal tissue for years and that was very painful. All of that went on for many years and my days were filled with pain, anguish, and misery. In January of 2012 all I could eat was a few bites of rice and drink water and I was laid out on the couch unable to move all day. My wife had to help me up and help me walk. I was only 33 when I was diagnosed, I was preparing to die, and I cried out many times for the Lord to take me.
So does it make me mad when people mock Celiac and they say it’s not a real disease or it’s “just an allergy”? Yeah, it makes me mad! This disease ruined my life! It took my health, my youth, and my strength from me and if it wasn’t for the miracle Jesus did, it would have killed me on 4-28-12. If you know someone with Celiac, please try to show some compassion and never make fun of them or the disease. If you are a doctor that doesn’t know about Celiac or you think it’s not real, please stop being so arrogant and do your research and actually start helping people! If you had Celiac, you would know without a doubt just how dangerous and deadly this disease really is. Gluten free is not some Hollywood fad. It is a required diet for survival for some of us!
I really like that shirt. For some reason, I have been chosen to fight this disease. I truly pray people will learn more about it and understand it, but I wouldn’t wish Celiac on anyone. I cannot even begin to tell you how much suffering this disease has caused me and my family. From the physical problems to job and income loss, Celiac has tried to destroy us. The worst part of it is that our kids both have Celiac too, but we caught the disease early enough in them, so they don’t have damage to their small intestines. We knew our daughter had it when her gut was bloated and in pain and her hair started falling out. We immediately went gluten free and she was perfectly fine. Our son is the youngest, so he has been gluten free almost his entire life.
One thing I know is that God is bigger than this disease. It is a thorn in my flesh for sure and God could simply remove it with a miraculous healing, but that is not always what He does. Sometimes we have to live with the thorn like the Apostle Paul. After 7 years fighting Celiac and living through the learning and growing process that fight has caused, I understand better than I ever have that God’s grace is sufficient for me.
I wish I had my healthy life back and I don’t ever want to suffer pain like what I went through ever again, but I am thankful for what the Lord has shown me through it all. I will never forget the day I stopped breathing. I went from torturous excruciating pain to perfect peace in a flash and Jesus was right there with me! He was with me every single day of my suffering and He never left me and He never will!
Grace and peace to you all!
“Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”
2 Corinthians 12:8-10
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