What helped Diane: How to approach dietary changes
Changes to food and drink have made a substantial difference to Diane’s digestive symptoms. Finding a workable approach took time, observation, and adjustments, alongside continued consultations with healthcare professionals.
This page describes our experience and several dietary approaches we explored. These approaches serve different purposes. They are not six steps that everyone should follow, and having hEDS or HSD does not automatically mean that any particular restriction is necessary.
The goal is to find the widest variety of foods you can tolerate while meeting your nutritional needs. Combining multiple restrictive diets can make that harder, especially if you are already losing weight or struggling to eat.
Before making substantial changes, discuss your symptoms with a clinician and, where possible, a registered dietitian with experience in digestive disorders. Ask whether testing is needed first—for example, removing gluten before celiac testing can make the results unreliable.
A food and symptom diary can help record foods, portions, timing, medicines, and symptoms. Patterns can guide further assessment, but they do not by themselves prove an allergy or explain its cause.
1. A low-FODMAP approach
FODMAPs are certain carbohydrates that can be poorly absorbed or remain undigested in the small intestine. They can draw water into the bowel and be fermented by gut bacteria, contributing to gas, bloating, pain, and altered bowel habits in susceptible people.
A low-FODMAP diet can help some people with irritable bowel syndrome (IBS). It is not a treatment for food allergy.
The approach has three stages:
- A short reduction phase, usually lasting two to six weeks.
- Structured reintroduction to identify which FODMAP groups cause symptoms and in what amounts.
- Personalization, restoring tolerated foods and limiting only what is necessary.
Strict restriction is not intended to continue indefinitely. If it does not help, reassess the approach with your healthcare team rather than adding more exclusions. Monash University: the three-step FODMAP diet
Garlic, onion, and green pepper have been troublesome for Diane. These are her observations, not a universal list of foods to avoid. Portion size and individual tolerance matter, and a food can trigger symptoms for reasons unrelated to its FODMAP content.
We have found the Monash University FODMAP app useful for checking tested foods and serving sizes. A low-FODMAP diet does not automatically require a completely gluten-free or lactose-free diet.
2. Gluten-free eating
Gluten is a group of proteins found in wheat, barley, and rye. Ordinary oats can be contaminated with these grains; people with celiac disease should discuss suitable gluten-free oats with their healthcare team.
A strict gluten-free diet is necessary for celiac disease. Other suspected wheat- or gluten-related problems need assessment because the underlying cause affects the advice.
Discuss celiac testing before removing gluten. If you already avoid gluten, ask your clinician how to proceed rather than restarting it on your own. NIDDK: diagnosing celiac disease
Diane noticed a substantial improvement when we removed many gluten-containing foods. We adapted favorite recipes and began using alternatives such as rice and rice noodles.
She has also reported tolerating some imported wheat products and small amounts of sourdough. These observations do not establish that pesticides or genetic modification caused her other reactions. Differences in ingredients, portions, and preparation may matter.
Wheat products from France or Italy still contain gluten. Ordinary wheat sourdough is also not gluten-free.Neither should be treated as a safe exception for someone with celiac disease or wheat allergy.
3. Lactose reduction
Lactose is the sugar in milk. The enzyme lactase helps digest it. When lactose is not adequately digested, it can cause gas, bloating, abdominal pain, and diarrhea.
People with lactose intolerance vary in how much they can tolerate. Some benefit from smaller servings, lower-lactose foods, lactose-free milk, or lactase products; complete dairy avoidance is not always necessary. NIDDK: diet and lactose intolerance
We have used lactose-free milk, including Fairlife, as part of Diane’s diet. This is a personal preference rather than a recommendation for everyone.
Lactose-free cow’s milk still contains milk proteins and is not suitable for someone with a cow’s-milk protein allergy.
Dairy is not essential if its nutrients are obtained elsewhere. If you avoid it, review your calcium, vitamin D, protein, and other nutrient sources. Plant-based drinks vary considerably in their protein content and fortification.
4. Low-histamine diets
Some people report symptoms after foods containing histamine, but “histamine intolerance” remains an area of uncertainty. There is no single reliable routine test that confirms it, and food histamine content varies with processing and storage.
Evidence for universal lists of “histamine-liberating” foods is inadequate. We therefore do not recommend using those lists as a standard diet.
If dietary histamine is suspected, discuss a limited, supervised trial and subsequent reintroduction with a clinician or dietitian. Persistent symptoms also need assessment for other explanations. Allergy societies’ guideline on suspected reactions to ingested histamine
Diane has experienced side effects from medicines, but we cannot conclude that these resulted from interference with the enzyme diamine oxidase (DAO). Discuss possible medication effects with your prescriber or pharmacist, and do not stop prescribed medicines based on a dietary list.
5. Glycemic index
The glycemic index describes how carbohydrate-containing foods affect blood glucose under standardized conditions. It can be one consideration in managing blood glucose, particularly for people with diabetes. Portions and the overall meal also matter. American Diabetes Association: glycemic index
A low-glycemic-index diet should not be presented as a treatment for food allergy or as a required stage of managing hEDS-related digestive symptoms.
For someone losing weight unintentionally, maintaining adequate energy intake is especially important. Blood-glucose concerns should be addressed through an individualized plan.
6. “Antinutrients” and plant foods
Some plant compounds, including phytates and oxalates, can affect the absorption of particular minerals. This does not make the foods containing them generally harmful.
Beans, grains, nuts, seeds, fruits, and vegetables can provide valuable nutrition. Cooking and other preparation methods reduce some antinutritional compounds. Broadly excluding these foods may make an already limited diet less adequate. Harvard Nutrition Source: antinutrients
We do not recommend a general “antinutrient-free” diet for hEDS, HSD, or malnutrition. A specific restriction may sometimes be appropriate for a diagnosed problem, but it should have a clear purpose.
Fiber needs also vary. Some digestive conditions benefit from particular types of fiber, while others require adjustments. Having hEDS alone is not a reason to avoid fiber or foods thought to make the intestines “work harder.”
Shakes and nutritional support
During periods when Diane’s work schedule made meal preparation difficult, we found shakes convenient. We used a Huel product with rice milk and fruit and discussed that routine with our nutritionist.
This describes what worked for us at the time. Protein powders, meal replacements, and medical nutrition drinks are different products, and their suitability depends on the exact formula, portion, and person.
Before regularly replacing meals, check whether the complete day’s intake provides enough energy, protein, fat, vitamins, and minerals. A protein shake alone is not a treatment for anemia or malnutrition.
For low-FODMAP eating, the whole recipe matters. Honey, fruit portions, added fibers, and sweeteners can affect tolerance. Gluten-free or vegan labeling does not establish that a product is low-FODMAP.
Seasonings and prepared foods
Diane continues to prepare meals she enjoys, including quiche, meatloaf, stir-fries, meatballs, and spaghetti sauce. Simpler seasoning has often worked well for her.
We have used products from brands such as Rachel Pauls and Fody. Check the current ingredients and any certification on the specific product, since formulas and availability can change.
A low-FODMAP claim applies to digestive carbohydrate tolerance at specified servings; it does not mean that a product is free of your allergens.
Sugar and sweeteners
Diane has reported tolerating some sugars better than others and experiencing symptoms with certain sweetened products. We do not know exactly which ingredients or quantities explained every reaction.
Raw and white table sugar are both predominantly sucrose. Raw sugar should not be presented as a treatment or as inherently easier to digest.
Sweeteners are not all alike. Sugar alcohols such as sorbitol, mannitol, and xylitol can cause digestive symptoms, particularly in larger amounts. Other sweeteners have different properties. Check the actual ingredients rather than assuming every “sugar-free” product will have the same effect. Monash University: sweeteners and FODMAPs
Fermentation, sourdough, and leftovers
Fermentation can change a food’s composition. Traditional sourdough preparation can reduce fructans, a type of FODMAP, which may help explain why some people tolerate certain sourdough breads better. It does not reliably make ordinary wheat bread gluten-free. Monash University: sourdough processing
Diane has sometimes experienced nausea or diarrhea after repeated servings of the same food or after leftovers. We record this as a personal pattern whose cause remains uncertain. It does not establish a need for everyone to rotate foods or avoid leftovers.
Severe symptoms after meals deserve assessment. “Dumping syndrome” is a specific medical diagnosis, not another name for diarrhea after eating.
Our aim is to share useful observations while keeping the distinction between personal experience and established guidance clear. Success means adequate nourishment and better symptom control with as much dietary variety as possible.