There are six important diets of concern, and we briefly discuss what each diet means and when each diet is necessary. However, there are two ways to approach these diets, based on how advanced your case is. If you are in an advanced situation as was described with my wife Diane, start by using all diets simultaneously. That is, everything you consume has to pass the test of each diet. This is not easy at first, especially when some food is allowed in one diet, but not allowed in another. We will explain how to navigate this, and we trust that you will get it going within days, like we did. Once there, give yourself around a week, or until your digestive tract is calmer. Then, start dropping some of those diets starting from the bottom with:
6. Anti-nutrients 5. Low Histamine 4. Low Glycemic-index
until you are left with the first three:
1. Low FODMAP 2. Gluten-free 3. Lactose-free
Once you only need these three diets, consider this a success and stick with these diets, adjusting as you go.
If you are at an early stage of digestive issues and you’re looking for a way to help relieve these early symptoms, then start with 1. Low FODMAP, 2. Gluten-Free, and 3. Lactose-free and stay with them for a week or so. If you experience relief, stick with these diets and adjust as you go. If you don’t experience some significant relief, then begin adding other diets, starting with 4. Low Glycemic-index, then 5. Low histamine, then 6. Anti-nutrients, until you experience significant relief. Make sure that you give it a week after adding each diet so you can feel the effects, without confounded symptoms.
A key point to understand is that using only the Low FODMAP, Gluten-Free, and Lactose-free diets are hopefully where you need to be. However, during trying times when you are experiencing sensitivities and reactions for an extended period, your digestive tract becomes more inflamed and irritated. Cutting out all suspects during these times steers the digestive tract away from extreme reactions and sensitivities, and back to the usual level of reaction and sensitivities, if that makes sense.
Another thing to note is how unique we are; normalcy goes out the window, and therefore your trial and error will result in your own unique adjustments as you go. For example, a strange thing Diane experienced is that she usually cannot eat the same food two days in a row, or eat leftovers the same day, or the next day. If she does, she can experience a combination of stomach dumping (explained later), nausea, and/or diarrhea. It’s hard to make sense of things like this. So, start with what we have described as your baseline, and then make your own adjustments according to your unique body and circumstances.
Finally, we realize that some things in these diet plans do not make sense. For example, under Low FODMAP, no garlic or raw onions is understandable, but allowing yellow and red peppers and excluding green pepper is odd.
1. Low FODMAP diet –
FODMAP stands for fermentable oligosaccharides, disaccharides, monosaccharides, and polyols, which are short-chain carbohydrates (sugars) that the small intestine absorbs poorly. Some people experience digestive distress after eating them. Fermentable carbohydrates are common triggers of digestive symptoms, and restricting certain foods can dramatically improve these symptoms in sensitive people. The Low FODMAP diet is an important diet to follow, and it is now made simpler by using a $7 app by Monash University. This app provides easy access to recommendations about the foods you should eat at every meal, as well as those you should avoid. The app is very simple and tremendously helpful. In addition to Low FODMAP, you will also need to follow a gluten-free diet and a lactose-free diet. Diane follows these three diets, and the improvements are clear. This is usually what the majority of people need in order to dramatically improve their digestive tract, in terms of allergies and sensitivities to foods. Low FODMAP can also help you learn about your Kryptonite; in Diane’s case, it was garlic, onion, and green pepper. Knowing that has made a big difference.
2. Gluten-free diet –
Gluten is a mixture of proteins found in wheat (and all of its species and hybrids, such as spelt, kamut, and triticale), as well as barley, rye, and oats (oats are naturally gluten free, they may come in contact with gluten-containing grains such as wheat, rye and barley at the farm, in storage, or during transportation). Gluten may cause both gastrointestinal and systemic symptoms for some people which is why a gluten-free diet is another important diet to follow. Interestingly, while Diane and I used to eat all sorts of gluten products, it is now absolutely devastating for her digestive tract to consume any food that is not gluten-free. Once she added a strict gluten-free diet, things have improved drastically, and now gluten-free food is the way to go for her.
Initially, it was hard to start this gluten-free diet because it meant eliminating many of our favorite foods. But now, with some experience, we are learning how to modify those old favorites to be gluten-free, and we have also introduced new favorites that are delightful. With minor exceptions, we are now a gluten-free household. For example, we use rice a lot, and also rice noodles instead of standard noodles.
Note: Recently, Diane discovered that gluten products imported from France and Italy (possibly other countries) are fine. After some research, it turned out that pesticide and genetic modification is the primary reason. So, try experimenting with the same in limited quantity and find out what works.
3. Lactose-free diet –
Lactose is the primary sugar found in dairy products. Lactase is an enzyme your body produces to help you digest that sugar. If you don’t have enough lactase, you might experience gas, bloating, cramps, or diarrhea after you eat foods containing lactose, like dairy products. A lactose-free diet is another important diet to follow, especially EDS & HSD patients as they are likely lactose intolerant.
Is the consumption of cow’s milk essential for proper health? The bottom line is no, dairy products are not a nutritional requirement for humans. We can get all of the nutrients for optimal health from a high-quality diet that limits or contains no dairy. But most people like and use milk; if this is the case for you, then use lactose-free milk. Like regular milk, lactose-free milk provides vitamins A, D, and B12, the key nutrients riboflavin and phosphorus, and of course, calcium.
One of our favorite lactose-free milk brands is “Fairlife” whole or skim milk, but there are many brands out there to choose from.
4. Low Histamine & Histamine Liberator diet –
DAO blockers and pain meds (Ibuprofen, Cymbalta, Neurontin) can cause a low activity and/or a low level of DAO enzymes, which then significantly decreases the functional activity in the metabolism of histamine. Interestingly, Diane was prescribed these exact three medications for her Cervical Dystonia, a painful condition which her doctor thinks is due to her hEDS. However, she stopped both Cymbalta and Neurontin after prolonged use, as their side effects became too severe to continue (including changes in personality, etc.).
In any case, avoid histamine-rich foods and beverages including alcohol and other fermented drinks, fermented foods and dairy products (yogurt, sauerkraut, and dried fruits are examples). Instead, try foods that promote the release of histamine, also known as histamine liberators. These include tomatoes, avocado, brussel sprouts, pulses and legumes, peanuts, walnuts, bananas, strawberries, pineapple, papaya, kiwi, citrus, wheatgerm, cocoa and chocolate, seafood and shellfish, freshly caught fish and fresh meat. Also try foods low in histamine, including non-citrus fruits, eggs, gluten-free grains (such as quinoa and rice), dairy substitutes (such as rice milk, coconut milk and almond milk), fresh vegetables (except spinach), and cooking oils such as olive oil.
5. Low-Glycemic Index diet –
Glycemic Index is a relative ranking of carbohydrates in foods according to how they affect blood glucose levels. Carbohydrates with a value of 55 or less are more slowly digested, absorbed and metabolized and cause a lower and slower rise in blood glucose and therefore (usually) insulin levels.
A low-glycemic diet can also help control weight by minimizing spikes in blood sugar and insulin levels. This is particularly important if you have type 2 diabetes or are at risk of developing it. Low-glycemic diets have also been linked to reduced risks for cancer, heart disease, and other conditions.
Low-glycemic index foods include peppers, broccoli, tomatoes, lettuce, eggplant, strawberries, apples, pears, legumes like chickpeas and beans (dried or boiled), milk, plain yogurt, dark chocolate with more than 70% cocoa, and nuts like cashews & peanuts.
6. Anti-nutrients & reduced nutrients diet –
Anti-nutrient foods are plant compounds that reduce the body’s ability to absorb essential nutrients. They are not a major concern for most people, but may become a problem during periods of malnutrition. This is important as this diet may become necessary when struggling with nutrition.
Anti-nutrient foods include lectins and phytates like legumes, cereal grains, seeds, nuts, fruits, vegetables, oxalates like spinach, swiss chard, sorrel, beet greens, beet root, rhubarb, sweet potatoes, potatoes.
Note – Please note that foods which cause the digestive tract to work harder, especially the colon muscles, aid in digestion for most of us. But this is not good for those experiencing digestive tract issues, and hEDS patients who have connective tissue disorder, which impacts their muscles and the mobility of the intestines.
Protein Shakes –
A balanced meal is important for everyone, but even more important for those who are anemic or malnourished. Also, since some hEDS patients with digestive tract issues may have problems getting enough nutrients, vitamins, and minerals, a protein shake may be very helpful. Diane has been challenged with a demanding work schedule and little time to properly prepare meals according to the diets above. So, we looked into protein shakes and found the perfect one for her, by the brand “Huel” (available in the US and Europe), which is a vegan, plant based, gluten-free protein powder that has enough protein and vitamins, etc. She started out with a protein shake for breakfast (made with rice milk) full of raspberries and blueberries, and sweetened with honey. It was hearty and delicious. When Covid-19 hit, she became far busier than usual, and she decided to have one for dinner as well. As for lunch, she either packed her own food or went out to one of her new favorite places that she found to have safe and appropriate foods for her diet.
We met with our terrific nutritionist, and she verified the value and benefit of this product (as long as you have regular food for lunch). This is now our absolute favorite protein shake, and I too make one for myself every morning. Incidentally, we had two different friends who were going through difficult times nutritionally; one was a digestive tract cancer patient and the other had a bad case of Covid-19 and became anemic. We gave each a bag of this protein powder, and it helped them to improve.
Spices –
Diane makes all sorts of delicious and hearty meals, from her quiche to her tasty meatloaf and stir-fry, and not to mention her world-class meatballs and spaghetti sauce, but she now uses mainly salt and pepper on almost all meals that she cooks. However, if other spices are needed, there are safe options out there, including grilled steak rub, Italian spice mix, and taco spice mix. Try “Rachel Pauls” for a good selection of spices to meet most needs (along with their delicious recipes). Also, try “Fody” for an even bigger selection of spices, sauces, marinades, and recipes – they are FODMAP compliant and amazing, especially the marinades. These 2 brands are available in the US, but regardless of what you use, always check the ingredients.
Processed sugar & artificial sweeteners –
Americans consume an average of 22 teaspoons of sugar every single day, and teens up to 33 teaspoons a day. Added sugar is found in 75% of food products at the grocery store. Raw sugar isn’t even really raw. It’s just slightly less refined, so it retains some of the molasses.
Artificial sweeteners were thought to be great because they have no calories, but they are typically 200 to 600 times sweeter than sugar. They are not good for the body, as they stimulate your taste buds, go to your brain, and affect hormones while slowing down metabolism. Both sugar and artificial sweeteners are addictive.
Diane has experienced less digestive tract issues with raw sugar than with finer processed sugar. But she experienced devastating effects from artificial sweeteners. We could not find a reasonable explanation for why her digestive tract tolerated raw sugar better than processed sugar. We recommend avoiding artificial sweeteners, trying raw sugar and more refined sugar for yourself, and then deciding which is best for you.
Fermentation –
Fermentation is the enzymatic decomposition and utilization of foods, particularly carbohydrates, by microbes. Fermentation takes place throughout the gastrointestinal tract, but the intensity of fermentation depends on microbe numbers, which are generally highest in the large bowel. Some new research suggests that abnormal intestinal fermentation has a possible link to etiological mechanisms in irritable bowel syndrome (IBS).
While Diane is on a gluten-free diet, she has discovered that she can safely consume small quantities of sourdough bread, simply because of the extra fermentation and the prolonged method involved in making the bread, which breaks down the wheat. Also, some of Diane’s friends, who are talented bread makers, have made her sourdough bagels, and she was able to enjoy them in small quantities as well. Again, it’s all about the fermentation and the process used to break down the wheat.