A seldom discussed part of chronic illness is the weight gain that often comes with it.
Weight loss is possible if you are chronically ill. Many people feel guilty or embarrassed to ask their doctors for help with weight loss. It can seem inconsequential or vain compared to the debilitating health challenges they are dealing with but eating the right diet is actually a crucial part of healing.
As a Nutritionist in Los Angeles for over 22 years, I am used to people wanting to look perfect over all else, including their health. I work with high-functioning people, actors, performers, and professional athletes so I’m familiar with what needs to happen to ensure multi-million dollar contacts don’t get canceled and shooting schedules are maintained. But having dealt with a chronic illness that knocked me on my butt for a few years while significantly affecting my quality of life and my weight I am aware that many people who are chronically ill or have been (even those in the public eye who are paid handsomely and expected to look perfect) are afraid to find help or answers to the weight loss part. The paradigm is that if done correctly, the diet that fixes your weight issues will probably go a long way to supporting your overall healing as well.
Diet changes are paramount to any healing program and the inability to lose weight with a chronic illness is often a clue as to what is actually going on biochemically. When your diet is optimized you should not be holding on to or gaining excess weight. There are many issues related to chronic illness and to trying to lose weight which include;
- slow metabolism
- sleep problems & insomnia + circadian rhythm issues
- thyroid and hypothalamus-pituitary axis (HPA) issues
- estrogen metabolism and other endocrine and hormone issues.
- autonomic nervous system and Vagus nerve issues
- systemic inflammation
- adrenal issues including hypoadrenalism & corticosteroid use.
- medications (too many to name that can cause weight gain)
- fatigue & exhaustion
- chronic pain
- gut imbalances and microbiome challenges
- leaky gut aka intestinal permeability
- exercise intolerance
- low motivation
- depression
- anxiety
- your history with eating behavior & beliefs
- muscle atrophy
- lack of energy to shop and make healthy meals
- problems with allergies and sensitivities
- serious cravings for comfort food
- Candida (yeast), Klebsiella, Citrobacter, Blastocystis Hominis, & other opportunistic gut pathogens that feed on sugars and certain carbohydrates and cause more sugar cravings.
- food sensitivities / intolerance /allergies
- mast cell activation and histamine issues
- nutrient deficiencies
- extreme sugar and carbohydrate cravings
- the inability for your body to effectively digest and use fats for energy
- problems with carbohydrate metabolism
- blood sugar imbalance
- lack of digestive enzymes
- brain fog & inability to focus
- impaired thinking that comes with chronic inflammation like with mold illness, Lyme, Candida, SIBO, autoimmune disease, etc.
- neurotransmitter imbalances
- addictions to foods, drinks, alcohol, pain medicines, shopping, sex, TV, Netflix etc.
- financial stress and worry
Have you ever taken a look at the fake “food” products they give to very sick people? Ensure or Boost brand meal replacement drinks are often recommended to our sickest people.
Pediasure and Gatorade drinks are often recommended for sick kids. These are some of the WORST things you can feed to anyone, let alone people who are already ill. Yet, hospitals order these sugary, mucous forming food like substances by the truckload and hand them out like they are actual nourishment.
It makes no sense nutritionally as these drinks are devoid of protein and healthy fats and are filled with sugar, dairy, corn syrup, artificial flavors, chemicals, and inflammatory fake vegetable oils such as soybean, corn, and canola oil. (None of those are vegetables but that’s another blog post). These so-called medical and nutritional support drinks contain more sugar than many candy bars and will make inflammation and illness worse. You are much better off from a health and nutritional standpoint drinking pure water, or even a simple chicken or beef broth instead of these. Yet, this is what many conventional physicians are recommending to people who are chronically ill.
Conventional western medicine doctors and hospitals do not have the correct nutrition or diet information and this is a huge part of why people don’t heal from chronic illness. How can you heal if you are not getting the nutrients your body needs? It is rare that a doctor even asks a patient what they are eating. In part because they don’t have the information for correct nutrition. For years we have been given the wrong nutrition information under the guise of nutrition guidelines like the food pyramid. The main reason doctors don’t have accurate diet information is because of the relationship between food companies and doctors, scientists, and registered dietitians. I’ve written about this elsewhere so I won’t belabor it again here.
As a Nutritionist, this is one of the most disturbing things about our healthcare system in the US. How can most doctors essentially ignore the part that good nutrition plays in healing from any illness? As doctors start to understand how nutrition really works and practice it in their own lives we should see healthcare leaning in the direction of using nutrition as a foundational health building strategy.
Chronic fatigue has become a catch-all phrase which usually means your Doctor doesn’t know what is wrong with you, or why you are so tired.
It involves suffering from many of the symptoms listed above and being unable to function in your daily life as you once could. You just don’t know why. Perhaps your doctors have told you it must be anxiety or depression or even hypochondria (all in your head)? This is rare. No one wants to be sick and too exhausted to do what they love or to show up for their families.
Much of this chronic fatigue and the autoimmune epidemic is actually caused by underlying infections and environmental toxins
including viruses like Herpes, CMV, and EBV, mold exposure and illness, heavy metals, Lyme, Babesia, Bartonella, and gut imbalances and diseases like Candida (yeast), parasites, SIBO, Klebsiella, Citrobacter, lack of digestive enzymes, microbiome imbalances, and more.
In order to lose weight while dealing with chronic illness, you need a Nutritionist who understands both the biochemical, emotional, and behavioral aspects of weight loss with illness.
Your diet needs to be designed around what your body needs, including endocrine system needs. Keeping your blood sugar and hormones like insulin and cortisol at optimal levels is very important. You don’t have to cure your illness in order to lose weight but if done correctly, you can optimize your diet while improving your health. If your diet is not optimized (however that looks for your body) then the likelihood of staying well and or losing weight permanently is low.
To get well and to lose weight you need to get the necessary speciality lab testing including a comprehensive blood chemistry test, comprehensive hormone testing by blood, and using saliva from a lab like Diagnos Techs, or using Urine testing from DUTCH labs. I use Alletess Medical Labs for food, candida, and mold antibody testing, and stool testing such as the GI Map Test from Diagnostic Solutions, which can help you pinpoint the exact issues you are dealing with. For more on lab testing, and how to find it and order it yourself online and learn to interpret it enough to figure out your next moves – you can watch me on Instagram (@julikeenenutritionist) and YouTube for more coming in January.
Here is a link to an in-depth thyroid panel with comprehensive wellness markers that I recommend often.
You can find more on lab testing here on my website including links to some of my often recommended lab testing that you can order yourself and work with your practitioners on. I hope to have an online program for lab testing available soon.
Once you identify and heal the underlying gut issues your body will not only be more efficient at metabolizing the food you eat, you will not crave as much sugary junk foods. The more efficiently are able to digest and absorb nutrients, the stronger your immune system gets and the easier it will be to heal.
Once you are starting to heal through treatment and improved nutrition you will start losing the weight. In the ideal situation, you have found a nutritionist and or a doctor who can identify what you are dealing with and help you find the correct treatments as you try to change your diet and lose weight.
But don’t think you have to know what you are sick with in order to make efficient food changes. I was ill for a few years before I figured out what were the issues and the causes. Jump in and make these food changes now even if you are not sure why you feel so bad.
The way you lose weight when you are dealing with chronic illness involves creating a cycle similar but opposite to the one that created this situation where things just get worse and worse. A cycle where you are making changes one by one, taking baby steps that result in improvements over time and each system working better in order to help your whole body to work more optimally.
There is not one specific healing diet I can give you since each chronic illness has its own issues and each person has their unique needs. It makes sense to cut out processed foods and to eat as many real foods as possible. Incorporating a good amount of vegetables, healthy fats, quality protein, and a low to moderate amount of complex carbohydrates is key.
Each of us has a different need for each of these macros but if you start by filling your plate with at least half vegetables this will help immensely in all areas. You will be getting the nutrients you need including antioxidants and fiber.
Some people with SIBO and serious gut issues will experience a worsening of gut symptoms when they increase vegetables in their diet and if this is you, I suggest working with someone who can do the testing and elimination trials needed to avoid the uncomfortable gut issues you are having.
The gut issues will have to be addressed and your diet may be limited to something like a low Fodmaps, Candida, or SCD diet or ideally some combination of these for some time, but I typically create a custom diet for each person based on labs, health history, symptoms, and what they tolerate. I don’t typically see success using the Elemental Diets products that are loaded with dextrose and other yeast feeding sugars so I typically make my own protocols for these people out of real food products that they can tolerate.
The problem with using one of these diets for something like the currently ubiquitous SIBO diagnosis is while it may calm down symptoms by starving one type of pathogen of food, it often feeds others who can become just as pathogenic. This is why I use stool and organic acid urine testing to pinpoint more specifically than just whether or not you have hydrogen, sulfide, or methane gas in your intestines.
Many people get 3 weeks to 2 months of relief of symptoms while treating SIBO with the commonly prescribed Rifaximin and Neomycin medications along with the Low Fodmaps or the elemental diet.
Unfortunately, once they go back to “normal” eating as they did before the symptoms quickly return and usually with a host of new ones. While many traditionally trained GI doctors are now using these treatments very often for what used to be called IBS not many people are speaking up about the fact that this is a very temporary solution for all but about 15% of the people using it. I have been working with this population for 22 years and it’s not the answer. The answer is figuring out the underlying causes and fixing them. And changing the diet for good.
The diet changes with SIBO or complicated gut issues must be done in phases. Leaving someone on a very low carb, Low Fodmap or similarly restrictive diet for too long is not a healthy or effective way to deal with these acute and chronic gut issues. They are too restrictive for long term use. If you are going to be on these diets longer than 2-3 months you need to see someone about how to supplement your nutrients and to help you transition back to a more normal diet when appropriate. A healthy normal diet, not a junk food normal diet.
As a Clinical Nutritionist who has worked with thousands of people with acute and chronic SIBO, Candida, dysbiosis, and leaky gut I have seen better results with broths and collagen protein shakes than using the sugary Elemental Diet products that are typically recommended by Gastrointestinal Specialist MDs. Even the “sugar free” version of these leaves much to be desired as far as the other issues they cause in the gut while they are supposedly treating the SIBO. I have not seen the results in my practice over the past 10+ years or since Dr. Pimental’s work on SIBO came out and these specific Elemental Diets began to be prescribed. The idea is to let the gut rest and repair as someone takes the antibiotics. While it’s better than the silly BRAT diet (bananas, applesauce rice, toast all high carbohydrate, sugary foods) that the GI doctors have been making for people with IBS and even SIBO for decades, It’s better to make your own as Dr. Allison Siebecker recommends on her website if you’re going to use the Elemental Diet products. Occasionally I will have a patient stay on these while they are doing the antibiotics, as their doctor recommended it and they bought it already. But it’s not my first choice as a Nutritionist. My first choice is to start with mild, clean broths, low fodmap veggies to start, and then each veggie and meat or high-quality clean protein like collagen peptides, grass-fed meats, organic poultry, and fish. We slowly work on digestion and gut healing as we get as many non-reactive foods (and nutrition from them) into the person. This takes patience and perseverance but many have healed this way. The biochemical balancing and healing is only half the problem. Many people who are dealing with chronic and acute gut issues are also dealing with some emotional issues around food. These must be identified and addressed if there is to be real healing.
I have several GI Doctors who refer their patients to me once they become “chronic relapsing” with SIBO. This means they have given them prescriptions for antibiotics and the elemental diet or Low Fodmaps for 2 or 3 or more times, and each time they feel better for a shorter time and wind up feeling worse after. There is nowhere to go from this scenario then back to basics and back to real food. Sometimes these people become very reactive to most foods we need to make a very limited diet work as we figure out what it’s going to take to get them healing. A shorter feeding window or intermittent fasting, targeted dietary supplements and even IV nutrients can be essential during this time. When the gut is broken we can’t absorb many nutrients (if we are eating them) and if we can’t absorb nutrients, or we are not getting any it’s harder to heal. These nutrients are a huge part of getting weight loss with chronic illness. The metabolic machinery in the body needs to be functioning optimally or the body holds on to excess weight and fat. Diet is much more integral to this than exercise. In fact, exercise is counterproductive to this if it impedes healing.
Back to what to eat (if you don’t have the acute gut issues and SIBO that I just got sidetracked with if you have SIBO type issues you probably need to work with someone with the clinical experience to help you personalize your plan)
If the other half of your plate is a protein with a moderate amount of slow acting (non-sugary, mainly vegetable) carbs along with liberal to moderate healthy fats you should see improvement. Many people lower protein in an attempt to lose weight and this backfires every time. The body needs protein to heal cells. The healthy fat is helpful hormonally, for healing, and for satiation. The vegetables are fiber, antioxidants, and very filling and nutrients dense calorie for calorie. Plus not many people will overeat vegetables or protein.
I don’t like to list what not to eat because it makes people feel deprived but if that is your issue you will have to find someone to work with you on that issue as well.
What not to eat when chronically ill and trying to lose weight:
Sugar, flour, gluten, grains, unhealthy oils (Omega 6 filled fake vegetable oils like Canola, safflower, and soybean) sweets, GMO foods, non-organic foods and feedlot, mass-market animal products, too many baked goods even gluten-free, dairy – including all cow’s milk products. Some people can tolerate whey protein, but I would do a food sensitivity test and watch your body for symptoms. And only use grass-fed, organic whey in a clean, sugar free product. Do not use anything with casein in it. Casein is an inflammatory peptide from milk and cheese and is often added to protein powders and bars. Casein, like gluten, is an opiate-like peptide that causes cravings for more and affects brain neurotransmitters similar to certain drugs like codeine. This is why I call casein and gluten-filled foods “drug-like foods”. They light up our brains similarly to how drug use does. I have seen many people who overate only cheese and bread (gluten and casein containing) foods and were able to stop dieting, heal and keep the weight off by simply cutting these drugs out of their regular diet. I’ve been in practice long enough to have seen that over 80% do much better without these foods.
If you want to lose weight with chronic illness do not drink fruit juices, Gatorade, Ensure, Boost, and similar drinks. I am still surprised how often I see new patients who live on these sugar and dairy-filled poisons.
I probably don’t need to name these but smoothies and bowls and things like yogurts and kefirs are often just as inflammatory, caloric, sugary, and weight gain inducing than a candy bar or cookies would be. If you are going to eat these things read the labels and check servings sizes, amount of sugars and carbs and every ingredient. If sugars are above 5-6 grams and or protein is below 60% pass on this. Make sure you have added some veggies and healthy fats as well.
Don’t fool yourself and believe things like yogurt, juice smoothies, or acai fruit and granola bowls are good for you. They are not. A glass of water or herb tea is better. A plate of real food like protein, fat, veggies and fruit is better yet. Eating real food and not packaged, manufactured food is always better for you. The AIP or autoimmune paleo diet is very close to being what I would call “a real food with no crap diet”. Most would do better with this for healing and weight loss.
Foods to eat for weight loss with chronic Illness
1. High quality protein – organic, clean chicken, fish, turkey, grass-fed beef, bison, lamb, bone broth, collagen powder, pastured eggs, nuts and seeds if you tolerate them, clean, organic plant protein powders. You can start with broths and soups or stews. If you have bad gut issues you can blend your meats and veggies in a Vitamix until you can fix your gut.
2. Healthy fats – coconut, olive oil, avocado oil or avocado, olives, fish oils, nuts and seeds raw, dry roasted or not cooked in peanut or other crappy fake veggie oils.
3. Organic local (as much as possible) vegetables and fruits – lightly sautee in healthy fats, steam, or raw if you tolerate it. Many with gut issues can’t eat raw veggies and that is OK. They should be able to later.
4. Drink plenty of pure water this is so important and so many people don’t do this. Nothing makes up for water so don’t ask me. Just water. Even my favorite mineral waters are not the same. The best is a clean one stored in glass bottles but do the best you can. Don’t drink tap water! Invest in a filter and look up results on purity online.
You may want to look for recipes that are paleo, or vegetarian paleo or vegetarian keto or dairy-free and gluten-free keto or paleo, as they will usually be dairy and gluten free and also cleaner while not being so sugary/starchy carbohydrate heavy. They are low in protein though so you will need to add more.
What I do not recommend is all the fake foods and crappy foods that are marketed as healthy like paleo pancakes or cookies or keto bars. Read ingredients and opt for real foods. Many paleo baked goods are actually more sugary and carbohydrate-dense than gluten containing counterparts. And many of them are like bricks in the gut. They will really back you up. Constipation is never good for weight loss or healing efforts.
Some do well with keto diets with chronic illness but you have to be able to tolerate fats and or support your digestion with the right supplements. If you get any symptoms of a sick gallbladder stop and get it checked out or get some help. See my article on gallbladder diets here: https://www.julikeene.com/?s=gallbladder+diet
Your diet will need to be fine-tuned from here based on your needs but if you can do this you are eating healthier than most of the population. Cutting out junk food and sugar is hard but the way to start is by focusing on the nutrients that your body does need. If you are focused on and eating the correct macros every three to four hours you will not crave unhealthy foods as much. The more your body heals and the better you feel the easier it is to eat healthily and the healthier you eat the more you heal. It’s the vicious cycle you are trapped in now only backwards. In the correct direction.
Losing weight and healing from a hard to treat chronic illness is not impossible. There is a way to get back to the health you once had. I recently got back to my optimal weight after dealing with multiple chronic illnesses caused by exposure to toxic mold. The weight loss was not the focus of my healing of course, but eating the correct diet was pertinent to me getting well. It’s hard to be totally successful at one without working on the other.
Being a Clinical Nutritionist for many years when I started to get sick my diet was not too far off from optimum, to begin with, but chronic illness and feeling crappy diminishes eating habits for most of us. It’s common to crave sugar and comfort foods when we feel terrible. Especially if mold, SIBO, and or a fungal infection like Candida is part of your clinical picture. Sugary foods give the illusion of boosting our energy but it’s a mirage. You can almost feel the energy increase…just as you get close it disappears and turns into lower energy and cravings for more sugar.
It takes patience, willingness, and perseverance to get back to your normal weight and habits, or maybe you will get to even better eating habits and a better weight, as many of my patients do, but it will pay off.
So stick with it. And if you need guidance get some.
I look and feel better now than I did 10 years ago. Not many people in their 50’s can say this. Especially people who have dealt with chronic fatigue and debilitating illness. I hope this gives you some direction and some weight as you find your way back from illness and into health and a healthy weight.
Juli Keene Nutritionist
I welcome comments and feedback. Or see me online on Instagram and Facebook, TikTok @julikeenenutritionist & @losangelesnutritionist or @julikeenenutrition on Twitter
Hi Juli:
I have been dealing with the after effects of toxic mold exposure for the last year and a half (almost 2 years). I have not lost the weight gain yet and am still so fatigued and exhausted most of the time that i cringe at the idea of exercising. I am interested in talking with you about a consultation.
Thank you,
DEBRA
Hi Debra,
I’m sorry you are still going through this. I had to change the way I was eating, what I was eating, when, and I used low carb, keto and intermittent fasting to get my metabolism working again plus I started off with simply walking and did not exercise until my body wanted to do it. If you still feel worse after exercising (called exercise intolerance) than don’t do it. There is something else going on. There are many things that could be going on with you. Shoot us an email at JuliKeeneCN@gmail.com and you can get info about working with me.
Juli- I was diagnosed with Chronic EBV in January but I have been dealing with it undiagnosed for years. I have been treated for SIBO have sensitivies to all the major triggers and have been living Paleo and often in the realm of Keto for about 4 years. I have a really hard time taking weight off even following very strict protocols and weight comes on very slowly over time but it keeps on increasing without anything changing. I do work with a naturopath who has been great and much more informative than the endocrinologist who just wated to prescribe meds. Just looking for other avenues of exploration and solutions. Any thoughts would be greatly appreciated and thank you for sharing your story.
Hi Adrienne,
I’m sorry you are going through all that. But glad you found the active EBV. I see that as well as the different Herpes viruses and CMV very often. I can’t be making very specific recommendations in this way (on the internet) because I don’t have your health history and am not working with you currently and it’s irresponsible to do so but GENERALLY, I would look into treating the EBV and modulating your immune system as well as becoming even more specific with your diet. I would use labs to really hone in on whatever is causing your weight gain. Also doing the correct movement daily is important and that will be different for everyone since adrenal and endocrine function need to be taken into account. Like doing a lot of cardio or cross-fit workouts while battling and active virus and gut issues could be counterproductive (but again I don’t know your case). If you have not done deep immune and adrenal function testing I would be looking into that. Also making sure you are not being exposed to mold, heavy metals, chlorine or fluoride in your drinking or shower water, are you methylation and detoxing, daily BMs etc.. Hope that helps point you in the right directions. Sorry for the delay I did not get a notice or missed it.
My family’s house has been deemed extremely toxic with airborne mold. It’s made me extremely ill with hormonal issues, migraines, severe fatigue, and rapid weight gain. I’ve bloated up like a balloon and gain about a pound a week. Btw, I’m only 18 and hate the way I look and feel. Seems the more I diet and try to move, the worse I feel. Any tips or ideas would be greatly appreciated; thanks!
Hi Elizabeth. So sorry you are going through this but I’m glad you know. I think the most important thing you can do is GET OUT of the mold. I can’t stress this enough. If your parents don’t believe it’s affecting you as it is or they are not in a position to remediate correctly or move then you need to find a less toxic living situation ASAP. I can tell you from experience working with so many people now (and myself and my family) none of those issues are going to improve if you are still living in the cause. I had exercise intolerance but I think that is the body trying to protect us from doing more harm. While you are there work on getting a really good air filter and get rid of porous things like your mattress as it’s likely filled with mold if your home is. An air mattress with clean (non-moldy) sheets or the floor without carpet is probably much safer. If you are gaining and pound a week it’s likely there is a Candida and sugar problem so you can try eating meats and veggies and cutting the processed and starchy carbs but even if you lose weight the main issue is mold NEVER STOPS HURTING YOU ONCE YOU ARE AFFECTED. Dr Jill Carnahan has a lot of helpful tips on her Website. I also have a FREE You tube video I did last month on healthy eating if you want to watch that it gets much more specific. How To Lose Weight Stuck at Home Due to Covid19 Stay at Home or if that link doesn’t work google search Juli Keene Nutritionist YouTube How to Eat Healthy & Stop Hunger While HOme on Covid19 Stay at Home” it should come up.
This is NOT MEDICAL ADVICE and it’s not specific for you but more general for anyone going through this situation. Sadly that is a lot of people. I’m praying that you can get your way out of this situation. I know you can!
Diet is my biggest challenge. I developed idiopathic angioedema and most foods, especially healthy ones, cause swelling. Fresh fruit and produce are the worst offenders. Processed foods seem to be easier for people with mast cell conditions, at least in the beginning. Now with the pandemic my allergist doesn’t wanting me trying new foods so I don’t have to go to the hospital at this time.
I’m now finding I have heat intolerance and exercise intolerance. I’m in remission from both Hashimoto’s and Graves, but still have symptoms of both. I can’t seem to lose the 20 pounds I gained with my antithyroid medication. It’s frustrating, but I hope to get more walking in as the weather cools.
That is a lot to deal with Katie. I know it can be so frustrating. I have found allergists and other extremely specialized doctors to sometimes lack the knowledge and clinical experience in the nutrition area so be careful with that. Just as an example, while an allergist may just focus on one area like avoiding allergic reactions, they may not be thinking about optimizing nutrients or macros to aid healing.
I don’t think processed foods are better for people with mast cell issues but I do agree that most people pick up processed foods because they are easier to eat.
It sounds like you still have some health issues to work on maybe before trying to lose the extra weight.
The people I work with almost always have a team of specialists including one to deal with finding the correct treatments for mast cell issues so that we can then start systematically trying different foods back in the diet. The most nutrient-dense are the most important to be able to eat in my opinion. Best of luck to you Katie and thanks for the feedback. I’m glad you found my article. Juli Keene, CN
Hey Juli- I was diagnosed with Lyme Disease as well as a co-infection of toxic mold (come to find out it was black mold). I was going to a more “natural” doctor so my treatment didn’t consist of antibiotics but I stopped treatment a few months ago because I saw no changes to any of my symptoms I just became extremely irritable. With all of that being said my doctor put no emphasis on diet whatsoever so I’ve been super lost the past year trying to figure it out and wanted to know what you would recommend. My major complaints are extreme fatigue, weight gain/super difficult time losing weight (also found out at one of my last appts. with her that my body isn’t using the food I’m consuming for fuel I believe what she said is the mitochondria isn’t functioning properly), and headaches. I would appreciate any suggestions you have!! Thank you:)))
Hi Alexis, I’m sorry you are going through that nightmare with mold. I have a YOUTUBE video about my experience with black mold and all of the things you are talking about including a 30-pound weight gain from the effect of the mold on my immune and endocrine systems. I also was diagnosed with Lyme but in hindsight and after working with so many people going through similar issues I believe that the constant mold exposure and our immune systems having to deal with it allow Lyme, co-infections like Bartonella, mycoplasma or babesia, and stealth viruses like herpes, Epstein Barr and cytomegalovirus to replicate and run wild in the body. I spent a lot of money trying to “treat” the Lyme and the infections but I was still LIVING IN MOLD (without realizing it) and it made me feel like I was having a really bad Herxheimer reaction and exacerbation of all my symptoms. Trying to kill infections is tricky but doing it if you are still being exposed to mold, and or if you have not worked on opening up your detox channels can make you feel worse. I have some genetic SNPs that make it harder for me to detox mold and deal with the infections so those had to be addressed as well.
I’m really sorry your doctor doesn’t know how important DIET is to all of this. I suggest a low mold diet and Dr Jill Carnahan has one. I reached out to her when I was so sick but she was not online yet and was still dealing with her own mold sickness issues. She did help me by email in encouraging that I was on the right path and that mold could be my biggest issue. I am not a doctor and I’m not your nutritionist so I can’t make treatment specific diet recommendations without knowing more about you. I will say that what helped me was a low mold, no sugar, low carb, higher fat, and protein diet with more vegetables. I did the Alletess Medical Labs food sensitivity testing with Candida and Mold and I still use that. I also did GI testing with the Diagnostic Solutions GI Map and I cleaned up any gut issues I had. If you have viruses those need to be addressed and in my opinion, if you take care of the biggest stressors on the body first that frees up the immune system to deal with infections that may not have bothered us otherwise. The mitochondrial issues are part of why we get heavy with mold exposure (and infections) but diet should be cleaned up first. Cutting out the processed carbs (or processed foods) is very important. The mold, viruses, and other pathogens make you crave sugar but adding the fats and proteins should help with the cravings. Here is a video on my mold experience and some of the symptoms I had. https://www.youtube.com/watch?v=972m4X1HBgc And here is a FREE video on cleaning up your food for anyone who wants it. People have used this video to get their food on track. I wanted to put something up when the Covid19 quarantine happened in April 2020 because so many people were reaching out for help on my Instagram. https://www.youtube.com/watch?v=972m4X1HBgc I hope this helps you. I don’t know what area you are in, but there are some good doctors out there now who deal with mold illness, epigenetics, genetics, chronic fatigue, viruses, and understand more about coinfections and Lyme, etc. Also, Dave Asprey has a podcast called something like “It’s not Lyme it’s Mold” which I agree with. I suggest listening to that. Best of luck!
Hi there!
Our family had mold exposure for 16 years.
The last 10 years was pretty bad.
I personally ended up having a heart attack, losing a ton of hair, fibro, extreme fatigue, migraines, depression, and a bunch of weight gain.
It will be a year in February that we’ve been able to remove ourselves from the mold.
During this time I have healed a great deal! All of my hair has come back in and very little loss, my heart feels good, no headaches/fatigue/depression, lots of energy in fact.
However, I’ve been so disappointed that I haven’t lost any weight.
For 21 years I’ve eaten according to my blood type. Which for me is mostly low carb and high protein.
I don’t eat all those things you mention not to. Not before mold exposure, not after.
I grew up being fed meals so cooked from scratch. I do the same today. We eat out maybe 3-4 times per year.
I’m 47. 8 children. All born at home. 3 miscarriages.
I’ve always had an estrogen dominance issue.
I do exercise.
Any other suggestions of what I should do? I’m beyond frustrated! I’ve been a size 10 all my life, even through my pregnancies. And suddenly in the past 5 years I’ve gone to a size 16.
Hi Leanne,
I’m so happy you discovered the mold and were able to recover your health and your life!! That is HUGE! Many feel stuck. As far as the weight loss I see this a lot. I’m going to make some educated guesses, based on what you wrote here that there is very possibly a hormonal issue going on. Between estrogen dominance that you mentioned and the fact that people who get extremely mold sick typically have serious challenges with genetic SNPs that affect detox ability. Also, remember that mold illness affects cell metabolism in general and it makes sense that you are having a hard time losing weight. For myself I had to seriously rework my macros (after doing lab testing to make sure my body could handle the extra protein and fat first) and I did intermittent fasting along with a much shorter feeding window for 6 to 18 months and I used keto as a tool to (or low carb with high fat, protein and a lot of non-starchy veggies). I have a FREE YouTube video of a class I did live last April for anyone who wanted help with their diet but could not afford to work with me. I will leave it up a bit longer but not sure how long. https://www.youtube.com/watch?v=Bl6EfacYm_I That link should work. If the strategies and advice I give in that link do not help you to lose the weight, then there may be an emotional component as well as some biochemical and metabolic issues that need lab testing. Also, my thyroid dropped significantly during the mold illness and I gained a lot of weight that I’ve since lost and kept off since 2017 now but I am still on compounded, natural thyroid meds for Hashimoto’s and hypothyroid. I have to test often and watch my antibodies which means testing and keeping my gut in balance as well as leaky gut and food reactions can affect my thyroid function. I do blood testing for my thyroid (If you watch me on Instagram @julikeenenutritionist I have posted and will be doing more videos on my stories and my page on what to ask your doctor to test for or how to order online with a good price and what they mean for us). I do my own blood labs every 3-4 months and I do stool testing periodically to maintain my microbiome and gut health. For you, with the limited info I have, I recommend both and an in-depth hormone panel (both blood and something like the DUTCH urine test) along with a comprehensive chem panel with deeper cholesterol testing to see how your body would handle a higher fat, higher protein, higher veggie, and even lower-carb diet. I know it’s already low carb but most can be lower in my experience. Maybe track your food and macros to see where you are at? If you want to lose weight you can’t be eating over 100 starchy carbs per day. Some who are over 40 need to go as low as 60 carbs or even lower to lose weight with metabolic challenges. You probably want to work with someone who is qualified if you don’t get weight loss after implementing the strategies in that YouTube class. I hope this helps to send you in the right direction!
Thanks so much!
I’ll look you up on Instagram and check out your video.
Wow, that’s actually a lot of information, especially for someone who is chronically ill. I couldn’t read it all, just wore me out. And if I could do all that then I’m not very sick. I can hardly walk across the room let alone do all this. I wish someone could come up with frozen food for chronically ill people because it would give us a jump start and help us through the most impossible time. It’s exhausting. 😫
Hi Joy, I’m sorry it’s so hard to read. It’s a complicated issue but I am working on editing my articles to make them more bite sized. I was also chronically ill for years and I agree it was very hard to find the information that I needed to get well. But I did find it. I mainly lived on soups and broths made out of chicken and other meat, healthy fats, and vegetables when I was healing and while my husband made them for me, and did grocery shopping when I could not, we did freeze them so I could eat them for longer by reheating. I know that it can cause more histamine issues to use leftovers but clean, nutrient-dense, food is really important to healing from most illnesses. I will work on something that’s easier to read with some recommended steps. That’s good feedback thank you.
Hi Julie, I have idiopathic inter-cranial hypertension and had brain surgery in my early twenties , Im gluten intolerant and didn’t start having weight issues with my illness until I was diagnosed with hemiplegic migraines which are very debilitating and I was put on medication that made me put on like 10 kgs I was also put on another medication prior that also made me put on weight. I also think that some of my depression added to the more recent weight gain in the last year or two because food was my only joy when I’ve been Ill. but I’m ready to turn it around even though it will probably be slow going. Also I don’t want to put on so much weight that doctors blame that for anymore health issues I get that’s like my worst nightmare. Any direction would be super helpful, thanks so much
Hello Tahlia, I’m so sorry you are suffering with the health issues from such a young age. I’m not very experienced with IIH except with a person who was taking an antipsychotic medication as a young adult and we were working on her nutrition and gut issues in her early 30s. I have had a lot of people with migraines and I usually recommend and non-allergenic and low inflammatory diet but it has to be customized to each person’s health history, genetics, epigenetic results, lab results etc. The thing with depression and illness and weight gain is they all feed each other and keep us in that downward cycle. I also know doctors will gas light when they are not sure what the underlying causes may be. What I would do with a new client is lab testing and a very deep dive into health history and try to figure out a safe starting diet. I usually start with protein foods and work from there. We do food reaction tracking as well as use my app to upload photos of their meals and any document reactions. It takes some trial and error but it’s the best way to do it. I’ve found that early on a high percentage test reactive to gluten, grains, and many starchy carbs like fruit and potato, rice etc.. but not many react to most protein foods or fats. So we start there but I prefer to do lab testing first so we are not making anyone feel worse. We design a diet that keeps the person satisfied with correct macros and nutrients versus feeding their food cravings. We add back foods as we can test them, once symptoms are gone or improved and we also go deep into dealing with feelings, emotions and frustration and strategies to avoid eating for the wrong reasons. I wish I could be more specific for you, but I can’t because I don’t know you or your case details. I’m glad you are searching for answers and I hope you find yours. A last note is if you are living in any mold I would work on getting out asap. I don’t see people get better while exposed to mold at home or work or school.
This is way too hard to do. Yes, I’m sure this will come back to me askkng,”how much do you want to feel better?” Well the answer is “everything.” But the truth is there’s not enough energy to do all this. Even a little at a time. Sorry but I got worn out reading it. It’s a complete overhaul. Theres no way. I can’t tolerate doing all that and my condition too. There’s got to be a better way. Also I don’t believe that most all our food is toxic. I took the ZRT urine test a couple of years ago and not one doctor took it seriously. And I sure needed something. I was very, very sad. But then I do understand about doctors. They are for the medical part of our lives. So we shouldn’t expect them to know the nutritional side of our health. They can save our lives but they have not been trained in nutrition. Nevertheless, this kind of strategy with dieting are for those that aren’t bedridden and have enough energy to make this work out for them. That’s great!
I’m sorry you are suffering and I wish you the best of luck for whatever you want in your life. I was also bedridden and I used that time when I could to do research. Maybe I got lucky but I also refused to give up even when the answers to possible solutions were very hard. I never said most of our foods are toxic but most of us react to the foods we eat most often due to gut issues and the fact that the typical American diet is high in processed foods and low in real foods. If you want a simple place to start that is it. Stop eating processed foods and comfort foods (if you are not then disregard, as again I don’t know your case just what you said) eat real foods, protein, except with some cases of severe gut issues they can’t tolerate veggies at first. I also strongly disagree that doctors should understand at least the very basics of good nutrition and stop putting people on Ensure and similar sugary drinks that keep them alive but make them sicker. The lack of nutrition training in med school is systemic but they should at least understand when to refer to a Nutritionist as I understand when someone needs a doctor. I truly hope you find what works for you.
I am 35 years old, I am hypoglycemic and have stage 4 endometriosis. I’ve had 5 severe viral respiratory infections within the past (almost) two years- three of which I had pneumonia. I have gained 20lbs in the past two years and I stay exhausted. I have to eat every few hours or my blood sugar will bottom out and I get so tired of feeling like I have to eat all the time. I am currently recovering from respiratory infection number five and it has been so overwhelming I have been in tears. I have started to drink non-caffeinated herbal tea every day as well as homecooked chicken broth and it has been very soothing. In an effort to improve the quality of my nutrition, I have started tracking my intake on ‘my fitness pal’ app. After this, I realized my protein intake is so low! I had no idea. So now I am trying to increase my protein to improve my health. Your article is so informative and easy to digest- you speak plainly and I appreciate that. Something else to mention is that I am obese, and I realize that I probably would not be as susceptible to infections or have such a difficult time healing from them if I did not have all of this extra weight to carry around. So with that in mind, I began searching for some material/information on how to lose weight to improve health without having to sacrifice your nutrition or put yourself at further risk by following some fad. Thank you for the suggestions to go on- I have been searching for some material for several days but until now nothing has helped. Thank you Juli!
Thank you so much for your kind comment Jessi. I’m sorry you are suffering with the endometriosis and the infections. I agree with you that being obese or even just 20 pounds overweight can make you more susceptible to infections. I’m SO happy you are drinking tea and broth and it should help you a LOT to increase your protein. A very simple diet without having much information on you is real food (protein) and veggies plus the tea and broth are great as well. You could try 3 meals a day at 2-3 hours apart with protein and veggies cooked in olive oil. Have as much as you need to feel satisfied and not eat again for 2 to 3 hours. See how that works for you. If you feel you really NEED carbs do a real food carb of 30 grams or less. (grams of carbs not weight like 1/2 cup of rice) It’s possible the “hypoglycemia” symptoms are more like a “reactive hypoglycemia” where your body is becoming either over or under responsive to insulin which affects blood sugar balance. I am working on a book now. I’m happy to send you a copy when it’s done. Also you can follow me on Social Media (my Instagram or Tik Tok) and starting on YouTube say Hi and let me know this its you. I give scholarships to my classes, online courses, groups etc when I know someone needs help and is committed to trying. I usually give to people who I know from interacting with me on there. I’m so happy this is helping you. Let me know how the tips work for you going forward. If you start this today and stick with this, by 3 months you will feel amazingly better. A year from now your life and health can be so different. 🙂