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Gastrointestinal Symptoms and Diets in EDS
We previously posted information on Nutrition and EDS – including supplements. Now, we move this topic further to answer a commonly asked question – “Is there a diet I should be following that can help my GI symptoms?”
There is a lot of discussion over specific diets and their ability to treat GI symptoms. Some of the diets you may have heard of include gluten-free, dairy-free, low FODMAP, Anti-GERD, low histamine, full elimination diet, low salicylate, low oxalate, and many others. How do you know if these diets can help you? To better navigate this, it is important to take a thorough inventory of the foods you are consuming, the GI symptoms you experience, your current emotional and physical state, and the time of onset – for at least 1 week. This can identify your specific trends and triggers for certain symptoms.
Below is an example of a food log that can be implemented:
When reviewing your weekly record there are some questions you may want to consider asking yourself before determining if a particular diet is appropriate for you. These can include:
- What is the overall quality of my diet?
- Am I incorporating foods that are anti-inflammatory?
- Am I incorporating foods that can have the potential to drive inflammation?
- Ex. Fried foods, hydrogenated oils, excessive intake of omega 6 oils (corn oil, sunflower oil, palm oil, etc), food dyes, sugar substitutes, excessive sugar intake, refined grains, etc.
- What is the timing between my meal intake?
- What are the portions of foods that I am able to tolerate?
- What was my physical and emotional state around mealtimes?
- Were GI symptoms present when physical and emotional symptoms were present either around mealtimes or during non-mealtimes?
If there are improvements you can make to the quality of your diet, meal timing and consistency, that may be a first place to start – without implementing a specialized diet. If GI symptoms are present along with physical and emotional symptoms, more exploration into the causes and potential treatments of these symptoms can be considered prior to implementing specialized diets. Some examples can include:
- Potential electrolyte, blood sugar, and fluid imbalances with physical symptoms of dizziness or lightheadedness
- Quality of diet for pain control or other therapeutic measures to manage pain
- Potential mind-body practices for stress management to help stimulate the parasympathetic nervous system to help relax the gastrointestinal tract
If you review your food record and you notice a significant trend of GI symptoms with the intake of certain foods, investigate what component within that food or specific foods could you be most sensitive. Trialing an elimination plan may provide some benefit. When taking at this approach, we target a broad range and narrow it down as sensitivities or various foods can present with similar symptoms. Common suspects can include food proteins such as red meat, seafood, nuts, soy, eggs, gluten, dairy, and corn. We then go into different fermentable carbohydrates such as the Low FODMAP diet. If no improvement can be seen through these diets, then we start to look at chemicals that can be found within foods where a sensitivity may occur. These can include histamine, salicylate, oxalate, and many others. The type of diet chosen will depend on the foods consumed and the GI symptoms experienced. It is important to mention that reaction to foods may not occur immediately following meals and can be delayed up to 72 hours. GI motility can also impact when a reaction may be experienced. Stay tuned for our follow up post on this topic here! Please share in the comments below if you have any experience with food logs or diet journals. Are there certain diets that work for you?
Author: Lisa Mejia, RDN, LD/N
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I had been developing some reactions to certain color sauces and fried rice. But my blood test shows more like a mild reaction to sesame seed and oil. I don’t really understand why I had a major hive after that rice but I’m guessing had something. I’m trying to get assessed for MCAS but so far no luck on that so far sticking to a lot of recommendations already mentioned in this blog. Thank you so much for sharing this information 🤍
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4 ReactionsOh, Lidiana, I may have been meant to see this. I was diagnosed with cutaneous mastocytosis (Case #138 ever identified in America) back in the early to mid 1980s. After the Pfizer double jab, it escalated to Mast Cell Activation Syndrome-GI/D. Yep! Eighteen months of up to 9 episodes of diarrhea per day. Weight got alarmingly low. Suffered A-fib from loss of electrolytes. Went to the ER for IV slow drip infusion of an H2 Blocker. Took up to 8 doses of H1 and H2 Blockers, orally, every day. NOTHING helped until I learned from another sufferer that his genius of an allergist recommended DAO Enzyme (derived from desiccated beef or pork kidney). Dramatic improvement. Weight is back to perfect. Able to eat almost every food on the planet. I do have the rare reaction to certain ingredients such as an artificial sweetener or too many high histamine foods all in one day.
That beef or pork kidney may be the magic bullet for you. As to being diagnosed... Good luck! You have to be in an active "flare." If you are in an active flare you can't leave the house! Believe me. Uh... Don't know of any doctors or lab techs who make house calls.
Listen to your body. Keep a diary of everything you eat and any reaction.
I wish you the best. Me? I'm. Just. So. Grateful! Medicine is so primitive that, after the failure of the IV infusion of Famotidine, my last option was removal of my small intestines with a prognosis of another 3-1/2 to 4 years of life.
Thank God for that genius of an allergist. I may never learn his name but he has my gratitude!
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2 ReactionsFifteen months ago I was diagnosed with stage four cancer ( neuroendocrine tumors) of the small bowel. My current treatment consists of hormonal injections twice a month to prevent further spread and growth. These tumors cause kinking of the bowel which can result in partial obstructions. I was hospitalized in March, 2022 for that condition. The risk for further episodes is always present. I adhere to a regimen that super hydrates the bowel and promotes easy elimination. I am very aware of the mind - body connection and use deep breathing to relax me and my GI system. Can you recommend other practices that would stimulate the parasympathetic to promote pain control, calmness and bowel relaxation. Any suggestions would be greatly appreciated.
Leni
Hi Leni, As the above article suggests practixing "Potential mind-body ... for stress management [can] help stimulate the parasympathetic nervous system to help relax the gastrointestinal tract".
There are a few Mayo Clinic resources I can point you to that may help in your quest for stress reducing, mindfulness practices.
1. Mayo Clinic's Cancer Education Center offers a self-learning course to help people (patients and caregivers) living with cancer to manage stress. You can work through the modules at your own pace to help you better understand how the body may respond to stressful situations, including cancer. You'll get various tools and techniques to meet physical, emotional, and spiritual needs, as you learn to manage stress.
Go directly to the free online course
– Stress Management for Cancer https://mccmscontent.mayo.edu/LSC/stress-management-for-cancer/content/index.html#/
You might also like to watch this class about Tai Chi from the cancer educator:
https://youtu.be/y76oJBsw5n8
See more offerings posted on the Cancer Education's blog here: https://connect.mayoclinic.org/blog/cancer-education-center/
2. See the vaious offerings in the Health & Mindfulness Blog https://connect.mayoclinic.org/blog/mindfulness-in-health/
Including this video library https://connect.mayoclinic.org/blog/mindfulness-in-health/tab/resources/#ch-tab-navigation
Leni, glad to see you venture outside of your "home" support group of Neuroendocrine Tumors (NETs) https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/ to find other helpful posts and discussions.
I have SIBO and I went on a Fodmap 4 week elimination diet. I found I have an intolerance to garlic and onions, which is in everything. Luckily, there is an enzyme powder developed by Monash University. It is Fodzyme and has made a world of difference in my life.
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1 ReactionI have severe pancreatic insufficiency, take prescribed enzymes to help digest all foods but having trouble digesting or assimilating fat soluble vitamins. I have terrible gas in the evening have been treated twice for SIBO, have slow transit, and because of malnutrition have significan weight loss and severe osteoporosis. I am currently trying low fodmap diet, but really, nothing helps. I'm discouraged and want so much to learn all I can.
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1 ReactionThis article was perfectly timed. I have microscopic lymphocytic colitis (MC) and have had it for 50 years. After being treated with Budesonide for approx 6 months, the MC went into remission. BUT it recently returned and I am again on Budesonide. Together with journaling everything (diet, exercise, sleep, energy, “moods” etc. ). I am refreshing my knowledge by reading everything GI related that may help.
Thank you!
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1 ReactionThanks for your article Linda. I read all Gi info earnestly! I have recently completed the elimination diet with no noted change. I have a history of IBS-C since a teenager. I am now 70 yrs. I used to have a lot of gas but that has resolved some with improvement in my diet. ( cut sugar) I consume gluten very rarely and do not eat high inflammatory foods. I I have a history of severe pseudo gout last summer that exacerbated my erosive arthritis. I have been having daily pain since then in many joints. I know there is a microbiome component to my arthritis. I have taken Miralax for the past 20 plus years but it doesn’t seem to work much anymore. I also make kombucha and kefir with some success with the bowels. Any recommendations besides a healthy diet and fluids would be appreciated.