I was so encouraged to see the response that came from the first gluten free post. There are a lot of people out there who are trying to navigate their way through Celiac Disease and gluten intolerance, and it can often feel overwhelming. I know that for my family, when we first began the process of transforming our home and our mind-set from one of loving gluten filled foods, to one of needing to eat gluten free, the process was daunting and frustrating. We are only 2.5 years into living a fully GF life, and some days are still so challenging.
When Jacob came home from his biopsy, and we were now sure that he had Celiac, I remember feeling so ready to challenge this disease, and to get him as healthy as possible. We Googled everything that we could on the subject, came armed to every grocery store with lists, and research and readiness to find foods that he could eat and that would begin to build up his immunity, strength and weight. I have to say that perhaps the biggest shock that almost everyone I have ever spoken with who has gone through this says is that they just never realized how many things contain gluten. I mean, really, I just never thought about shampoo or sun tan lotion, toothpaste, etc.
To be honest, it took many months to even begin to get a handle on what would make Jacob sick or not. As I think that I mentioned in the last post, Jacob’s Celiac is pretty severe, which basically means that if he has any contact with gluten, either through ingestion, absorption or through breathing it in, it will make him ill. Even though Jacob’s severity is very high, the doctor’s have told us that any one with celiac or gluten intolerance can be reactive to even trace amounts of gluten in their system.
That is what really makes the transition into a gluten free life challenging. When I first started cooking and shopping gluten free, I was only looking at gluten free ingredients, not at food that was prepared in gluten free facilities. When we took Jacob back for his 3 months check, while he was markedly better, he still had a lot of antibodies in his system.
That was really when we had to sit down and begin to discuss what we needed to be looking at to ensure that we were living and eating as GF as possible. Here are eight things that we did that had the greatest impact on cleaning out his system, building back his immunity and health, and ensuring that he had contact with as little gluten as possible.
1. Gluten Free foods seem to be categorized in two ways; gluten free ingredients, and made in a gluten free facility.
This was perhaps the biggest issue that I had to learn to deal with. A lot of foods that simply contain GF ingredients still make Jacob sick. For instance, Bob’s Red Mill has a large line of GF grains and flours, but it is made in the same facility where all of their gluten containing grains and flours are made, and cross contamination is a high probability.
2. We used very little processed food in the beginning of our transition. Jacob ate as many fresh foods and meats as possible, and I made everything from scratch so that I could be assured of what was in every dish. In many ways this takes a bit of preparation and good planning, but it is so worth it.
3. We use an omega blend of Fish, olive, borage and flax oil for both boys every day, as well as 2 Tbsp. of probiotic powder for their gut. The fish oil and probiotic powder is added into their yogurt and then topped with honey and almond meal. This helps in a few ways. First, it is a wonderful source of the “good” fats, and second, most people with celiac are experiencing nutritional deficiencies, and this is a great way to absorb the omegas that the body is most likely in serious need of.
We were strongly advised to use at least twice the recommended daily amount of probiotic powder to help strengthen the gut, and we have continued that practice since the beginning. In my opinion, the oil and probiotic powder combination is something that keeps Jacob, and Elwood, at their healthiest.
4. We now use as many products as possible that are not only GF, but allergen free as well. Everyday Life is a good example of a company who is making products that are free from any major allergen source. This is something to strongly consider especially in the transition time. Many people who are suffering from celiac or gluten sensitivities are also experiencing other food allergies as well, and therefore, it is great to try and limit any potential sources that could exacerbate the situation.
5. Looking at the “big” picture seems to be incredibly important when making the transition to a GF lifestyle. It can seem daunting to read this, but honestly, looking at everything around you, from any potential cross contamination of gluten in your kitchen and cooking, to what kind of tooth paste you are using and whether your lotions, etc. contain gluten is essential.
I think that when we did this, when we just said “OK, we are going to walk through our every day lives, and we are going to write down everything that could be a factor”, that is when we started to see his anti-body levels decrease. There is hidden gluten in so many products, and it will take some time to figure out every thing that could be a problem, but researching what you are using is the best way to make sure that you have removed as many potential sources as possible.
6. Talking to our health food stores was really helpful. Many of the people who work in places like Whole Foods, Vitamin Cottage, etc. have at least 1-2 people on staff who know a lot about what in their store is really GF, and safe to eat. They can have a wealth of information that is really helpful, and can help to take some of the burden off of having to figure out or find what is safe to eat.
7. Becoming a part of a Celiac group in the area that we lived was a life saver. Everyone was there and coming together so that they could build a community where information and research could be easily disseminated, and support could be given. We joined the Celiac Spruce organization in our area, and there are groups in almost every city and town out there.
8. One thing that we did that we felt strongly about was that we took refined sugar of any kind out of our children’s lives. We read a lot about the effect that sugar can have, especially on the immune system, and that was what made us reach the conclusion that it would be better for that to go for good. Immune repression is an issue for those with Celiacs (and anyone else with a chronic illness), and we have seen some marked results with removing refined sugars. The boys love honey, maple syrup and brown rice syrup, and I haven;t found any difficulty with cooking with them.
There are, of course, many more things that could be looked at or used to make the transition run smoothly, but these 8 were by far the most useful to us in getting Jacob, and ourselves for that matter, on the right track. It really helped to try and streamline the process as much as possible. There is, unfortunately, some real trial and error to knowing what can and can’t be eaten, but trying to reduce the potential risk, while at the same time trying to build back immunity, can be very helpful in getting things going.
I would love to hear from all of you about what helped and what made your transition easiest. The whole point of these posts is to get conversations going and learn from each other. As I said, this is a constant process, and I am always looking for new information, products, research, etc. to learn from.
