What’s up with gluten? – PANS/PANDAS
Gluten's effects on PANS/PANDAS/BGE
Photo credit: Master1305 on Freepik
What is Gluten?
Eating clean and healthy is an integral part of healing inflammation. Throughout this blog series, we discussed inflammatory foods such as dairy and sugar and how reducing and/or substituting aids in lowering symptoms of PANS/PANDAS. Avoiding gluten may also help reduce flares and digestive issues. It is not an easy decision and it comes with many challenges; gluten-free products are often more expensive, sourcing specialty ingredients becomes more difficult, and social outings require more planning when gluten-free options aren’t available. That being said, many people with autoimmune conditions feel that eliminating this substance is vital in aiding recovery.
Many of our favourite breads, baked goods, cereals, beers, candies, prepackaged foods like cookies and granola bars, etc. contain two naturally occurring proteins both known as gluten. These proteins are called gliadin and glutenin, with gliadin being the main protein that is the culprit for gluten sensitivities. As these proteins bind together, they make baked goods lighter and fluffier, thus more attractive to sell.
Some people have a distinct allergy to Gluten called celiac disease which is a serious autoimmune disorder with severe reactions to wheat, barley, rye, triticale (a cross between wheat and rye), farina, graham flour, semolina, and other kinds of flour, including self-rising and durum. This is a very serious condition that needs a doctor’s diagnosis and requires careful management and follow-up.
What Causes Gluten Sensitivities?
What I will be discussing is the sensitivity to what could be any number of different factors that can cause non-celiac gluten sensitivity (NCGS). Although a lot is still to be researched on NCGS, individuals with PANS/PANDAS may be more prone to sensitivities because of an already compromised immune system. Some theories that contribute to gluten sensitivity include:
A high level of the gliadin protein and an inability to digest large molecules in gluten
The herbicide used to protect the crop called glyphosate
Poorly-absorbed carbohydrates
Intestinal deficiencies.
What are the symptoms of NCGS and how do they relate to PANS and PANDAS symptoms?
Nausea
Cramping
Diarrhea and/or constipation
Headaches
Fatigue
Difficulty concentrating
Body aches in the bones, muscles and connective tissues
Depression
Anxiety
You may already be experiencing some of these symptoms without realizing that gluten sensitivity is compounding the problem. According to the National Center for Biotechnology Information, the above-mentioned symptoms start to show up shortly after consuming gluten and can last for several hours or even days. Relapses occur after recovery, and when gluten is eaten again. I would contend that symptoms might appear more strongly or last longer in a PANS/PANDAS person who already has a weakened immune system and inflammation, thus making it harder to recover.
Gluten and PANS/PANDAS - Reducing Symptoms
If your symptoms could be lessened by eliminating gluten, would you try it? For example, in the list above, difficulty concentrating may also contribute to brain fog, which can cause issues in learning and focusing. If we could see improvement in concentration by reducing or eliminating gluten, would it be worth investigating? It’s a thought to ponder.
We already know that PANS/PANDAS individuals are more prone to inflammation, and researchers are rapidly demonstrating how gut inflammation can aggravate inflammation in the brain. In a recent study, conducted by Dr. Lorenza Putignani of the Bambino Gesù Children’s Hospital in Rome, Italy, it was shown that in PANS/PANDAS patients, the gut microbiota may encourage gut inflammation and the activation of an immune response. In their findings, they came to the conclusion that streptococcal infections might change the composition of the gut microbiota, resulting in a pro-inflammatory state through altering particular gut bacterial communities.
To read more, visit Gut Microbiota for Health
Going Gluten-Friendly
So. Eliminating gluten to calm the intestines can aid in calming brain inflammation. How do we go about doing that? Based on symptoms, this will be very customized. A meal journal or diary is an excellent way to start figuring out your triggers. You can begin by noting the presence of gluten in the meals you eat and jotting down in your journal how you felt and what happened after consumption. You can utilize your food journal in conjunction with the other food triggers that I’ve listed in past and upcoming blogs.
Ten years ago, when we were looking into gluten-free options in Ontario, there wasn’t much that seemed appetizing, and the ingredients of the packaged GF foods were questionable. However, since then, there has been a huge improvement in the gluten-free industry. You can find gluten-free options for just about anything, and they’re actually appetizing. I can’t tell you how surprised I still get when I notice gluten-free options on a restaurant menu. Despite this improvement, the growth of the gluten-free industry has paved a way for mass production and not-so-healthy ingredients. I am still cautious about the amount of “white flour” and starches used in processed gluten-free packaged foods. I opt for whole or ancient grains where I can and I read almost every package to see if ingredients are helpful or harmful.
One challenge we encountered with going gluten-free was the cost. For example, store bought bread can range from $5.00 to $9.00 a loaf. Gluten-free bread doesn’t have a long shelf life, so most are stored in the freezer to maintain a shelf life at the store. It is more cost-effective to make your own bread, but speciality flours can be more expensive, too. I like to buy GF flours in bulk and extend their shelf life by storing them in the freezer. It is time-consuming to make your own breads and baked goods, but if you get your kids involved in the process it makes it more enjoyable, and you’ll also be certain you’re eating healthy ingredients.
The social aspect of going gluten-free can be the most challenging when children are younger and birthday parties are frequent. At the time when my kids were in grade school, parents were just starting to recognize food sensitivities and it was becoming more acceptable to bring our own homemade GF cupcakes to a birthday party. It is not to say that we didn’t encounter opposition from some who were ignorant of food sensitivities, but for the most part, once explained, there was tolerance of our situation.
Gluten-Friendly TIPS and TRICKS
Bread
If you’re looking to go gluten-free, there are a few different routes you can take. You can go the store-bought route (ideal for the busy bees), but just keep in mind gluten free doesn’t mean more nutritious; there can be a lot of other inflammatory ingredients such as sugar and dairy in packaged bread. The second option is the basic homemade bread, which is replacing regular flour with a one-to-one gluten free flour mixture (such as Bob’s Red Mill). The third option is to bake bread using a flour blend for the healthiest results. Finding your specialty in gluten-free bread baking can take some practice, but when you are aware of the nutritional value of each ingredient, the process can be quite satisfying.
Flour
There are several gluten-free flours that work well as a replacement for white or whole wheat regular flours. The trick is to find the right blend of flours that work well for the project you are working on. If you are interested in making your own bread or baked goods, there are so many great books explaining this process. I tend to keep things simple and gravitate towards almond, coconut, brown rice and teff flour. Gluten-free flour tends to be denser than regular flour, making baked goods drier and crumblier, so it may take some time to get used to the new ingredients.
Alternatives to Gluten-Free Bread
Although sprouted grain bread is not “gluten free,” it can be much softer on the stomach. It’s a good option for people who are not wanting to be gluten free or who are weaning off being gluten free. The protein and carbohydrates in sprouted grains are really broken down, enhancing the vitamin content for the customer. They also taste wonderful, are simpler to digest, and are much better for you.
The Bottom Line…
Eliminating gluten may seem like a difficult and long process. I distinctly recall worrying about my children feeling robbed of the simple pleasures of baked goods, but due to a family history of digestive issues and the potential connection between gluten and PANS/PANDAS symptoms, we felt compelled to attempt to avoid it. My kids and hubby were patient with my experiments and over time, I was able to come up with some straightforward substitutes and meals that quickly became household favourites. The objective is to avoid being frightened or intimidated by the wealth of resources. Keep it simple and gradually hone your baking technique. It will be worth it to see if it makes a difference in your PANS/PANDAS symptoms.
Never give up; search for the root, and find the answers!
Until next time, stay on your path of discovery,
Nancy Lawrynowicz
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Disclaimer:
The medical/health information provided is for general informational and educational purposes only and is not a substitute for professional advice.
Resources:
“What’s really behind gluten sensitivity”
“Non-coeliac gluten sensitivity: piecing the puzzle together”
“How American Wheat Differs from European Wheat”
“Non-celiac gluten sensitivity: all wheat attack is not celiac”
“Why do I get a Gluten Reaction from American Wheat but not Overseas?”