What I have learned from my own experience, chatting with people with Celiac Disease, and lengthy chats with my Gastroenterologist, is that the hardest part of managing the disease is the change in mindset that is required. Once you get past this hurdle it begins to get easier.
So much of our culture and sense of identity is tied to food and, especially for European culture, a lot of this food contains Gluten. There are gluten containing foods that are an integral part of our gatherings with family and friends and even religious ceremonies. Add to this that people really want to prepare food and share it with others to the point where many feel hurt if you don’t eat food they have prepared. Also, despite the fact that awareness of Celiac disease is growing, there are many that don’t know anything about it and others who don’t take it seriously. So, here are the core tenants that I had to internalize (this has not been easy to do):
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Celiac Disease is a serious disease! If I don’t take it seriously, I will continue to suffer and it will lead to progressively worse health. Basically my life will suck.
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My health (not being sick and feeling good enough to live my life) is more important than other people’s feelings and social convention. I am not going to put my wellbeing at risk to please others.
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I have to actively manage my expectations. I am not going to expect others to make safe food for me (even if they say they will). I will not expect that there will be food that is safe for me to eat at events, or at work, or at a social event (even if they say there will be). I will always make sure that I pack something that I can safely eat if I am hungry (including food I made at home, a protein bar, or any other certified GF snack). This one is REALLY important for my mental health. If I expect that people will accommodate me and then they don’t, it is very natural to feel hurt / sad / angry / resentful. And if I get to an event and find that they DO have food that is safe for me (it is pre-packaged certified GF or it is from a dedicated GF restaurant or bakery), it is a very nice surprise. It bears repeating, managing your expectations is the key!
That second one sounds a bit harsh but it is so true and it is the hardest one. I still have to remind myself of this all of the time. It means that if someone is offering me food that I am not VERY sure is GF, I have to decline it even if they don’t like it. I try to be nice about it, so oftentimes I just say that I’m not hungry, that I have already eaten, or something along those lines. If it’s someone I know or someone that seems knowledgeable or that they would be receptive, I will tell them I have Celiac Disease and that I can’t take chances. If they complain or get rude about it, I just walk away. If I tell everyone that I have Celiac Disease, some will actually argue about it so I don’t tell everyone. I sometimes think of it this way: For people with Celiac Disease, Gluten is like rat poison. Would you eat something that you suspect or know has rat poison in it? Or offer someone food that has rat poison in it? Of course not.
Another thing, preparing food that is Celiac safe is a steep learning curve. One that I would not expect people to master for me. The slide deck below was made by a woman with Celiac Disease in response to family and friends that wanted to make food for her. I got the link when she shared it in the subreddit r/Celiac a few years ago. It really does a terrific job walking through all of things one needs to know to make Celiac safe food. When I have shared this with family and friends they have almost always said that perhaps I should just bring my own food so that’s what I do. It really is better for everyone.
One major takeaway from this is that it is very difficult to make Celiac safe foods in kitchens where foods containing gluten are also prepared. It’s not impossible but, since it requires a lot of diligence and focus, it is very difficult to maintain. It’s just too easy to make a mistake especially when tired, in a hurry, stressed out, sleep deprived, etc. So, the easiest path is to make one’s home gluten free. It also enables the person in the family that has Celiac Disease to have a safe place where they can relax and not have to constantly be on guard and this is good for their mental health.
One compromise that we make is that my partner has a bottom shelf in the pantry where she can keep a few gluten foods that she likes to eat along with a toaster oven that is only for gluten foods that she takes out and immediately puts away when she is done. She also has some cooking utensils and a dish sponge that she keeps separate like this. But everything else in the kitchen is gluten free. We also have a standing agreement that if she wants to go out to eat somewhere that I can’t eat that I am willing to go with her, have a drink, and I just enjoy spending time with her while she eats.
What I learned when I stopped eating gluten
Since I do not have a medical degree I try my best to refrain from offering medical advice so, in this section, I am just going to tell my story including what I learned along the way. I’m going to do my best to keep this short and focused on the learnings.
When I was first diagnosed, I didn’t want to believe that I really had to completely avoid eating any gluten. I didn’t have any gastrointestinal symptoms other than a dull ache in my stomach. I met with my Gastroenterologist and asked him how sure he was of my diagnosis. He reviewed the results of the Upper G.I. endoscopy including pictures of the internal damage (which was clearly visible), the results of the five biopsies he took (all positive for villous blunting), and the Celiac panel blood test results (which were literally of the charts…higher than the test can measure). He said that based on these results he said the diagnosis was the most certain you can get in medicine…greater than 99.9%. He said that I need to have my vitamin levels checked and that I needed to start a strict gluten free diet. He also recommended the books below, which I subsequently purchased and read. I highly recommend these as they gave me a firm understanding of the disease. He also had my vitamin levels tested and many were very low so I started on supplements right away. One year after diagnosis and going strictly gluten free, I had another upper G.I. and it who that the damage to my gut had healed. Looking at the before and after photos from the endoscopies removed any remaining doubts that I had about the diagnosis.
Celiac Disease: A Hidden Epidemic
Gluten Free The Definitive Resource Guide
In addition to reading these books, I also joined the National Celiac Association, the r/Celiac subreddit, and some Celiac Facebook groups that I later left (they were a cesspool, seriously). The r/Celiac subreddit is okay but I’d limit how much time you spend on it to maintain sanity. I also did a lot of searching the web and one thing that I found was the Find Me Gluten Free App. I downloaded the app to my phone and paid for it so that I could filter the search results for “Dedicated” gluten free food establishments. This app has been terrific!! We have used it to find places to eat all over the U.S. and Canada. A couple of years later, when The Gluten Dude App was released, I downloaded it and I have used it from time to time. The biggest benefit of the Gluten Dude app is that he and his team actually vet restaurants and include the findings for each one. That is really great but the app is a bit expensive so I have only paid for it when we are traveling. Otherwise, I just use Find Me Gluten Free which is good enough and is essentially free.
The National Celiac Association sent me a little booklet of recipes and a nice handwritten note and within a couple of weeks, a woman who has Celiac Disease in Portland called me to ask how I was doing and if I had questions, I did. She told me that it took her over a year to heal up, closer to two years and that she had to go on an auto-immune protocol diet while healing. I don’t know why but a lot of her comments didn’t register at the time. I think I was just overwhelmed.
Anyway, when I stopped eating gluten, within a couple of weeks I noticed that problems that I had for years just went away. I didn’t get super tired half way through the day, I could focus for much longer, which really paid off at work! I had also been having a feeling that things were getting stuck in my throat and that disappeared. I had been feeling anxious much of the time and sometimes waking up in the middle of the night in panic mode with an overwhelming feeling that something was wrong. I also had begun having this weird problem with my eyesight like I couldn’t quite maintain focus on things. Because of this I had been limiting my driving. I also had itchy spots on my skin on my back and head. All of these symptoms disappeared on a gluten free diet. This continues to astound me to this day. All I had to do was change my diet and take vitamins. Wow!
The bad news is that I started to experience inflammation throughout my body. I could really feel it in my joints and I also would frequently feel off-balance. My primary doctor thought I was having sudden onset arthritis or something…I just didn’t believe that. Then I really started engaging with other people that have Celiac online and I went to see a holistic doctor who specializes in Celiac. I discovered that, especially since I had quite a lot of internal damage, as my gut healed the new tissue was very sensitive resulting in my now being intolerant to some foods. The holistic doctor told me to eat anti-inflammatory, auto-immune protocol foods and to stop eating eggs and dairy products to see if that helped. Through trial and error, I discovered that dairy was the primary culprit so I stopped eating dairy and the joint pain and inflammation significantly receded. I can’t say that it was completely gone but if I stayed with eating the auto-immune foods it would get better. I have a hard time being that strict though.
After a year, I had a follow up upper G.I. and it revealed that the damage had healed but that there were still signs of inflammation. I think this is just going to be an ongoing battle for me..trying to keep inflammation at bay. The good news is that I tried dairy again and found that I can tolerate it as long as I don’t eat too much.
Here is a terrific animated explainer video on Celiac Disease Pathogenesis (Described Concisely and in Detail).
My key takeaways from this video are
- There are multiple stages of immune response that are triggered by gliadin. This makes an actual cure very difficult.
- The loosening of the tight junctions between enterocytes, or more accurately, between epithelial cells, allows food molecules to pass through the intestinal lining and this leads to inflammation. I believe this is caused by the release of Zonulin. This is also known as “Leaky Gut Syndrome”. It is important to heal these junctions. Some people have told me that probiotics are essential for this but I have not really tried probiotics myself. I probably should.
A few other things I learned
- Repeated exposure to gluten keeps the immune system ramped up so to speak which increases inflammation which is just bad in general
- In some cases repeated exposure leads to the development of other autoimmune diseases
- Untreated Celiac disease results in an increased mortality rate for people with celiac disease, exceeding that of the general population, due mainly to malignancies. Current research shows a statistical risk that is 33 times greater for small intestinal adenocarcinoma, 11.6 times greater for esophageal cancer, 9.1 times greater for non-Hodgkin’s lymphoma, 5 times greater for melanoma, and 23 times greater for papillary thyroid cancer.
- Good news is that disease remission returns us to the same rates as the normal population. So, a strict gluten-free diet really pays off!
There are three types of remission:
- Symptomatic - No longer experiencing symptoms.
- Serological - Celiac panel blood test numbers have returned to the normal range
- Histological - No internal damage is present as revealed by upper gastrointestinal endoscopy with biopsy
I have been getting a Celiac panel roughly every six months to see how I am doing. This is especially important since I am what is commonly referred to as a “Silent Celiac” meaning that I don’t have gastrointestinal symptoms and may not know if I have ingested gluten. However, I recently discovered that I can get a Celiac panel without a doctor’s referral at Quest Diagnostics and it is cheaper than having it done at the doctor’s office. So, I am now getting tested every three months along with some other blood tests. My G.I. doc says that I should have an upper G.I. endoscopy every five years.
Diet
As my doctors have told me repeatedly, it is best to keep things simple. Shop for foods that are typically around the walls of the grocery store that are naturally gluten free; fruits, vegetables, fish, meats, nuts, seeds, beans & legumes. Avoid processed gluten-free foods; they are more expensive and typically loaded up with sugar and other things that are bad for you.
A good strategy is to make food in large quantities and then portion them into batches; put some in the fridge and freeze the rest. I have found that chili and soups are terrific for this. They are also tasty, healthy, and cheap.
Breakfast
Note concerning Oats
Oats can be cross-contaminated due to being grown alongside wheat or processed on the same machines as wheat so it is important to get certified GF oats. There are also some people with CD who are also sensitive to the avenin in Oats (see the Oat Sensitivity section below). There is a ton of debate on this topic online but I have been eating Bob’s Red Mill Gluten-free Museli without any issues (links below). Your Mileage May Vary on this.
This is as far as I have gotten so far. More coming soon…